empowEAR Audiology Podcast

  • Hosted by

  • Frequency

    Two times a month
  • First Episode Date

    August 12, 2020
  • Rating

    "5" Stars
empowEAR Audiology

Listen to empowEAR Audiology Podcasts

empowEAR Audiology

Communication is connecting. Join Dr. Carrie Spangler, a passionate audiologist with a personal hearing journey, as she interviews guests who are navigating their own professional or personal journey in the hearing loss world. If you want to be empowEARed or just want to hear some great hearing and listening advice, this podcast is for you!

Meet our Podcaster

Carrie Spangler

Audiologist, Mother, Wife, Advocate, Podcaster

About Me

Carrie Spangler, Au.D, CCC-A, is a dedicated professional in the field of educational audiology with over 20 years of experience. She also has a passionate personal journey of living successfully with hearing loss in this vibrant hearing world. Dr. Spangler has turned what many view as a “disability” into an “ability”.

In November 2019, she began her cochlear implant journey, which you can follow at  hearingspanglish.blog. Empowering and helping others with hearing loss, families, and professionals is at the core of her daily work.

Dr. Spangler has numerous publications and has presented on topics related to educational audiology, advocacy, and peer supports at the state, national, and international levels. Dr. Spangler is also an active member of professional and service organizations.

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A thriving community

empowEAR Audiology Podcast Reviews

Ben Thompson, AuD
Host of the Pure

I recommend this podcast! Great podcast about hearing conditions and audiology!

Father of a child with hearing loss

I'm a parent of a child with hearing loss. This is an extremely helpful podcast to learn from and be a good parent to my daughter.

Listening Fun
Facebook empowEAR Audiology Group

I had so much fun with Carrie on her EmpowEAR Audiology podcast! We talked about itinerant teachers of the deaf and how we work to support our students with hearing loss! This was my first time being a  podcast guest!! I feel like I could talk about being a TOD indefinitely so it was a really fun experience. Go check it out on Apple podcasts! 

empowEAR Audiology Podcast Transcripts

Episode 65: empowEAR Audiology - Dr. Jasmine Simmons

Announcer: [00:00:00] Welcome to episode 65 of empowEAR Audiology with Dr. Carrie Spangler.


Carrie: [00:00:14] Welcome to the empowEAR Audiology podcast, a production of the 3C Digital Media Network. I am your host, Dr. Carrie Spangler, a passionate, deaf and hard of hearing audiologist. Each episode will bring an empowering message surrounding audiology and beyond. Thank you for spending time with me today and let's get started with today's episode. Okay, I have a very special guest with me today, and I'm going to tell you a little bit about Dr. Jasmine Simmons. She is a deaf blind audiologist and an author. She originated from Columbus, Ohio, and she now lives in Jacksonville, Florida. Inspired by her life journey, Dr Jasmine has created a captivating children's book series that sheds light on Usher's syndrome, a condition causing deafness, blindness, and balance balance issues through her unique perspective, Dr Jasmine Story embodies strength and resilience, teaching young readers how to better interact with those who may be different from themselves. Dr. Jasmine's book introduces a diverse cast of characters that takes children on an incredible journey of understanding and empathy. Her characters, both relatable and inspiring, help bridge the gap between children and individuals with diverse abilities, opening doors to to compassion and inclusivity. So, Dr. Jasmine, welcome to the empowEAR Audiology podcast. I'm so excited for you to be a guest today.


Jasmine: [00:02:03] I am so excited to be here today. Thank you so much for having me.


Carrie: [00:02:07] Well, it's so fun to reconnect with you because we have a lot of history together.


Jasmine: [00:02:14] Yeah, we definitely have. Oh my goodness. We met at University of Akron during, uh, my undergrad. Right. That's crazy.


Carrie: [00:02:24] I that was a while ago. And I still remember the day that you came to my door when I was working at the university and introduced yourself. I think you might have been taking a class that you were, um, not excited about taking.


Jasmine: [00:02:46] Yeah. Oh, my goodness. I just I just remember, you know, you being at Akron and just being my mentor, like, it was such a profound time for me. And it was just amazing just having you alongside my journey.


Carrie: [00:03:04] Well. I am so glad that I could be a small part of your journey. And yeah, I'm so excited for everything that you have become. Um, since we met way back in your undergrad, uh, career. Uh, but every time I have someone on the podcast that has gone into audiology, I love to hear their story. And I think our listeners do, too. So do you want to share a little bit about how you decided to have the pathway to audiology?


Jasmine: [00:03:39] Oh, absolutely. So I was born profoundly deaf, and at the age of two, I received my cochlear implant. And throughout my life, I always knew I wanted to be a helper. I knew I wanted to be in the healthcare. And it was when I was in seventh grade, my mom and I were in the car and, you know, you know, little me was thinking like, what should I do with my life? I want to do something, but I just don't know what. And she was like, Jasmine, like, what about audiology? And ever since then, like, oh my gosh. Yeah. Like it just clicked for me. So I just knew that that's what I was destined to do. And I went ahead and achieved that goal.


Carrie: [00:04:26] Yes, he did, and so much more. Do you want to share a little bit about where you're at right now? Working. Uh.


Jasmine: [00:04:36] Yes. So I currently work at Jacksonville Speech and Hearing, a nonprofit clinic, and it's such a great job because, you know, we work with the underserved populations. And if, um, a patient is, um, under the income means and they live in Duval County and Jacksonville, they are eligible to get a free set of hearing aids. So it's just a very rewarding job. And also they can get free speech therapy services, um, through different grants. So it's just very enjoyable to work at the company I am. And just to help people, you know, be able to hear and, um, for them to be able to communicate with their loved ones.


Carrie: [00:05:22] Wow, what a great service to that area. And I'm so glad you're there. Just, um, thinking about, like, before we get into your book and everything, which I really want to talk about, but I know you said like I was a mentor to you, but I know that you have been an incredible mentor to so many people along the way. And I just remember talking to you about being a part of the campUS experience, which, um, Dr Gail Whitelaw and I co coordinate a overnight camp that was at Ohio State University, and we needed counselors who were deaf and hard of hearing. And I remember asking you if you would be willing to volunteer. And I don't even think I told you what you were volunteering for, but you said yes, and then you volunteered your brother.


Jasmine: [00:06:16] Absolutely.


Carrie: [00:06:18] Yes, I sure did. Yeah. You're like, oh, my brother, my brother could be a part of this too. And then, um, but you and Justin were just, like, such an integral part of, like, the startup and of the campUS program and mentoring so many high school students who were thinking about going to college or going to work and had never met anyone else who was deaf or hard of hearing. So I just wanted to thank you for like, your participation in that, because I feel like you were a counselor for at least like 3 or 4 years, maybe even longer.


Jasmine: [00:06:57] Yeah. It was I mean, it was such a wonderful experience. And that was the first like the start of me being a camp counselor. And it was just wonderful being able to see these teenagers bond. And like you said, some of these teens have never met other people with hearing loss. So it's it's only two days. But those two days were such impactful moments for these teens. So I thank you and Dr Whitelaw for even, you know, hosting camps like these because it is so needed. It is so needed. And I know these kids, I, I am Facebook friends with some of them. I see them, you know, in college and, you know, working. I'm just like, oh my gosh. Like I'm just so proud of these kids that go through these programs. And I know they remember these moments because I remember going through camp when I was younger, and I still remember it to this day, and how it has such a empowering or impactful impact on me.


Carrie: [00:08:06] Yeah, definitely. Especially when you're a one and only and a place and you don't have the opportunity to meet someone else, and then you come here and you realize, whoa, like there's other people like me out there in the world. So which is kind of a great segue into your book. So audiologist and author Dr Jasmine Simmons, I'm so excited for you. Because so and I just have to say, I got my book and I am in love with the extraordinary Jordan and her bionic ears. From the character to the illustration to the storyline, everything is phenomenal. So tell me Just for our listeners, can you just share a little like an overview and then we'll dig deeper into into your book.


Jasmine: [00:09:03] Yeah. So, um, I just what really inspired me to write this book. Um, I remember I was an educational audiologist in North Carolina, and I met this family of a little girl who had usher syndrome. And I just remember the mom, just like I signed her up for everything, and I just. I don't know how to explain this to my kid, like, there's nothing really out there. And at that moment, I just knew I was going to write a children's book. I was just knew. I just didn't know when. But I knew it was going to happen. Um, and this past February, I was diagnosed as legally blind. And I was just, you know, sitting there like, what do I want to do? Like what? What will, you know, help me get through this? And that was the time I decided I was going to write the Usher Syndrome series. I just knew it was time. And, you know, as I was writing this book, I actually met a, um, girl. Her name was Jordan, and she was going through some bullying in school and just. You know, dealing with the confidence issue with her hearing loss. And I just knew that that was going to be my character's name. And, you know, just in honor of her. Um, but yeah, it's just it's a really great story, and I can't wait to talk a little bit more about it.


Carrie: [00:10:37] Yeah, I love that. So you had, like, your own personal background, plus your experience as an educational audiologist and then meeting a family who was kind of struggling with how to explain this, and then another person who kind of was having this bullying experience. So kind of a combination of lots of different things. So absolutely. Yeah. Just a step a little bit backwards for a second. Do you want to share a little bit about your hearing history and how like how it's progressed over the years.


Jasmine: [00:11:17] Mhm. So um, I was born deaf. I got my cochlear implant at age of two. At the age of seven, I was diagnosed with a condition called retinitis pigmentosa. Retinitis pigmentosa. And it affects your, um, nighttime vision and it also affects your peripheral vision. So as I got older, my vision has progressed. So that's, uh, at the age of 25, I was officially diagnosed with usher syndrome and through genetic testing. So that's just kind of what prompted me to write the Usher Syndrome series as well, because many people don't know what Usher Syndrome is. So it's definitely was one of my mission to spread the word. What is usher syndrome? So that way, you know, more research can be done, more people can learn about this, and hopefully, you know, they can find a cure one day for sight loss, you know? So that was really my mission to behind this series as well.


Carrie: [00:12:29] Um, and I love how you said earlier too, that this you you knew you always wanted to write this book, but at the same time, you said this was kind of part of your own healing process, too. Can you share a little bit more about that?


Jasmine: [00:12:46] Yeah. So writing this book has been so healing for me. Um, it's just this became my my distraction. This became my baby. Um, you know, so everybody has to find their ways of coping with, you know, a diagnosis. And, you know, writing this children's book was my way of coping and coming to terms with my vision loss. And it actually helped me gain more confidence as I share my story. And it's just, you know, hearing other people going through something similar or could be a few steps behind me or a few steps ahead of me, and it's just so beautiful to be able to communicate with others and just help each other along this journey.


Carrie: [00:13:37] Yeah. It really I love how you talked about those people in front of you and people behind you. That and walking alongside of you that are on this journey and can help with that process too. So extraordinary. Jordan in the book. Um, what is like the main message or theme that you are trying to convey to those who are reading your book?


Jasmine: [00:14:07] You know, as I read this book, I learn there are so many different messages behind this book and I'm like, oh yeah, this is a great for this and this is great for that. Um, but, you know, overall, I wanted kids to show or kids to be confident in who they are. You know, just you are extraordinary. Like that is the overall message. Just be confident and you know, you are going to have some challenges and that is okay. But you will overcome those challenges if you are confident and who you are.



Carrie: [00:14:47] Mhm. Yeah.And I feel like Jordan can represent lots of different areas of confidence. So whether it is, you know, her um bionic ears as you call them when she calls them in the book or it's another area of challenge that like you can still be extraordinary in whatever challenge you have.


Jasmine: [00:15:12] Exactly, exactly.


Carrie: [00:15:16] Um, so as far as, um, the book goes, I you said, you know, the as you keep reading through it, you have found some other like themes and, and ways, um, that people might be able to, to use the book. Do you want to share a little bit more about your the themes in there?


Jasmine: [00:15:40] I mean, it's a great book for social, um, emotional learning. Um, I think it's just it also it's also great book for kids who aren't familiar with, you know, differences, you know, something that's different from them. You know, like Ben in the store doesn't know what this device is. So obviously he's going to act different towards it. But then, you know, he learns more about it. So it's just acceptance and just understanding. And also it's important to I want to relay that kids aren't mean. They just don't understand. And and that's okay. That's when you want to teach those kids that, yes, there may be somebody that looks different from you or have something different from you and just be able to understand and they are unable to understand what is happening.



Carrie: [00:16:42] Yeah and I know that part of part of the book, and I don't want to give it all away because I know people need to read it. Um, but Jordan remembers that, like her dad had said, you know, that you're extraordinary. And she kind of remembers that as part of, you know, kind of getting empowered to stand up for herself and be confident. Is that another message, like for parents, guardians, like teachers, different, you know, mentors and, um, figures in their life to, to teach this?


Jasmine: [00:17:18] Oh, absolutely. It's. Words matter. Kids pick up on positivity and they also pick up on negativity. So just empowering kids is so important because that really affects alters their confidence and helps them be more confident. So definitely like affirmations, you know you are extraordinary. You know you're hearing loss doesn't make you less than like you are extraordinary.



Carrie: [00:17:51] Yeah. So on a personal level, does Jordan reflect you at all?


Jasmine: [00:17:59] Um, there is definitely some personal moments in that story that I personally experienced that I wanted to convey in that story, and that also was healing, just talking about it, you know? So and just I know I'm not alone in this. And so I want kids other to see this and be like, oh, you know, it actually it has happened. That happened to me. Or, you know, I just want them to be confident. Um, that's just really, truly the overall message I really want to convey is be confident in who you are. Because, you know, my parents instilled that in my brother and I, you know, that is why I am the person I am today. Because, you know, my parents have never made us feel ashamed of who we are and just taught us to embrace it. So that's also with the parents, you know, positivity that also conveys through my parents as well.



Carrie: [00:19:03] Yeah. And I know both of your parents and I can see how they would have instilled that in you, um, throughout, throughout your life too. So I love how that shines through in the book, too. So kind of talking about the nuts and bolts of the book, like, were there any challenges that you had, like getting started writing your book or all of that? You said it was a long process, but what were your challenges?


Jasmine: [00:19:35] Oh my goodness. Um, the day I decided to write a book and I had no idea how much work it went into writing the book, you know, just you have to worry about, you know, copywriting, the book and, you know, getting the ISBN numbers and, um, you know, getting beta readers, like, I didn't know you had to do all that. It was just all trial and error, you know, just learning as I go, asking different authors, hey, you know, what should I do? And one was like, yeah, you need beta readers. I was like, oh, I do. Okay. Um, and it's just beta readers really help shape your book. You know, you have all these different visions and, you know, they help like, whoa, whoa, whoa, slow down. Okay, let's talk this through. It doesn't make sense, you know, put it together. So it was just very helpful. And gain editors, developmental editors, there's a lot that goes through writing a children's book, but it was very rewarding.


Carrie: [00:20:46] But it was. And your illustrator too, was amazing. How did you find her?


Jasmine: [00:20:55] Oh my goodness, I, I truly lucked out with my illustrator. Um, I went on the platform called Upwork and oh my goodness, she was the very first person that actually reached out to me. And I was like, okay. And I did a little bit more research. And then I just saw that, um, what really drew me in was she had a just a person who had, um, an amputated leg. And I just like, wow, okay. So I'm like, you know what? Let me check her out. And she exceeded beyond my expectations. She just I love her, and she did an amazing job.


Carrie: [00:21:42] So did you ever meet her in person or. This was all, like, visual, like videos or virtually.


Jasmine: [00:21:49] Um, I have not met her in person. She lives in California, so I hope to meet her in person one day. And I hope we can work together on other projects as well.



Carrie: [00:22:04] Yeah. And you kind of mentioned, um, when when I read your bio too, that this is the Usher Syndrome series. So what did that mean for Jordan?


Jasmine: [00:22:17] So actually, Jordan is I actually want to do different people for my books. However, Jordan will appear in my final series. Um, so I my vision is to as I meet people, I want to name my characters after people I have met. Um, and so that way those kids can see them in the book and feel inspired.


Carrie: [00:22:49] Ah, I love that. So what is, um, the real Jordan that this book is named after? Has she, um, given you any feedback about the book?


Jasmine: [00:23:02] Yeah, she absolutely loved it. And I remember the day I told her that I was naming my character after her. She, her mom was was telling me that she was so excited that she went and told everybody at her school saying, you know, I have a character named after me. And it was just heartwarming just to see how her face lit up when she found out that her her name was being used.



Carrie: [00:23:32] Uh huh. Well, that sounds like you need to be doing a book launch at that school.


Jasmine: [00:23:38] I'm working on it. I'm working on it.



Carrie: [00:23:42] Yeah. And so at the time of this recording right now, um, for our listeners, I mean, your book is just gone out, like, you've kind of released it, like people are receiving it. What kind of feedback? What kind of feedback have you received so far?


Jasmine: [00:24:00] Um, people have mentioned how much they loved the illustrations. The illustrations are phenomenal and they love the message behind the story. Um, uh, they also just love just the characters and the how, the ending, the how it ties it in at the end. I can't give it away, but they just love the ending. Um, and lastly, they love the, um, five ways to be More Inclusive. Um, so yeah, great. Great feedback so far.



Carrie: [00:24:39] Yeah. As an educational audiologist, I just got this book this week, but I can see how this would be an extraordinary teaching tool, um, to do with, you know, to read with students and just reread and, and go back and really dig deeper and ask questions with them, like, how has this ever happened to you? Or can you relate to Jordan anyway? So this has so much application for, um, teaching and empowering students with any kind of differences, but specifically our deaf and hard of hearing children.


Jasmine: [00:25:18] Absolutely. I, I really want to write this book to target kids with hearing loss. However, I also wanted to target just kids in general, so that way they can learn about hearing aids and cochlear implants because, you know, some kids don't. They don't know what it is. So I just want them to understand that not everybody is going to look like them. So it's it's yeah.



Carrie: [00:25:47] Yeah. And so you you touched on it, but you talked about five ways to teach about inclusivity. How did that come up as far as like a great way to kind of finish off your book?


Jasmine: [00:26:03] Yeah. So originally I wanted to end off with, you know, affirmations. You know, I just wanted to figure out ways to help empower children. And but I feel like it was very popular. Everybody was doing affirmations. So I wanted to do something a little bit different and leave it off as a teachable moment for not only the kids, the adults to like, oh, how to be more inclusive. Um, so that's just the idea I came up with. I was like, oh, why not figure out a way to teach them how to be more inclusive? And that's how I came up with it.


Carrie: [00:26:45] I love it because it really does kind of, um, make you think a little bit deeper about the book, I think, too, and then apply it.



Jasmine: [00:26:58] Yeah, I definitely wanted to, um, you know, just adults to teach kids. Okay? Like, if you have to be kind, um, you know, just actions, like at your actions matter. Like, you know, showing that adults, kids are watching. So if you implement it, they are going likely model what you're doing. And, you know, reading my book helps, you know, teach kids to be more inclusive. So I just I just thought that was a very important message.



Carrie: [00:27:33] Yeah. And that is a great way to, um, like, kind of wrap up everything in the book with a nice bow at the end. Right. Uh, is there anything that I forgot to ask you that you were hoping I would ask about? Whether it was you personally, or the book or your process.


Jasmine: [00:28:02] Um, you can if you always. If you have any questions, you can always reach out to me. Um, you know, I'm an open book. I always like to share about my experiences as a deafblind individual. Um, and you can always reach out to me on my Instagram at Dr Jasmine Simmons. Uh, it' DR and then my full name or also Dr Jasmine Simmons. Com on my website. And I'm always available to us answer some questions.



Carrie: [00:28:37] And what I can do is I can definitely, um, put that information in the show notes so that people can click on it and go directly to your social media and your website and, um, order your book as well and get that shipped directly to them.



Jasmine: [00:28:57] Absolutely. And I really, truly hope you guys enjoy this story. And this was my baby is is my baby. And I just hope you guys enjoy as much as I did.




Carrie: [00:29:11] Yeah, well I know just reading this book, um, and getting it. I cannot wait to share this book with the students that I get to serve, um, throughout my work. And I'm already thinking about the ones that I really want to share it with. So I'm going to be ordering some more copies, um, in the very near future. And, um, with that, I also want to just say thank you, Jasmine, for everything that you do and everything that you are. I'm just so grateful to know you, um, for such a long time. And you just hold a special place in my heart. So thank you for being part of the EmpowEAR Audiology podcast.


Jasmine: [00:29:55] And I just want to say thank you as well. And you've been instrumental. So thank you for having me. And it's it's an honor.


Carrie: [00:30:06] All right so listeners, make sure that you hop on to Dr Jasmine Simmon's website, her social media, and be sure to reserve your book of extraordinary Jordan and her bionic ears. And if you love this podcast, please be sure to share with anyone who would also enjoy listening. Thank you.


Announcer: [00:30:33] Thank you for listening. This has been a production of the 3C Digital Media Network.




Episode 64: empowEAR Audiology - Dr. Andrea Warner-Czyz

Announcer: [00:00:00] Welcome to episode 64 of empowEAR Audiology with Dr. Carrie Spangler.


Carrie: [00:00:15] Welcome to the empowEAR Audiology podcast, a production of the 3C Digital Media Network. I am your host, Dr. Carrie Spangler, a passionate, deaf and hard of hearing audiologist. Each episode will bring an empowering message surrounding audiology and beyond. Thank you for spending time with me today and let's get started with today's episode. Okay, today I have with me a friend and colleague, Dr. Andrea Warner-Czyz, and she is an associate professor in the Department of Speech, Language and Hearing in the School of Behavioral and Brain Sciences at the University of Texas in Dallas. Her research investigates communication and quality of life in children and adolescents who are deaf and hard of hearing, and use cochlear implants. Her primary, um professional goal centers on a whole person approach drawing and speech language, pathology, psychology, and audiology to develop data driven recommendations to improve social well-being in patients who are deaf and hard of hearing. So, Andrea, welcome to the podcast.


Andrea: [00:01:29] Thanks so much for having me.


Carrie: [00:01:31] I'm excited. I know we've been trying to coordinate our schedules for this podcast for, I don't know, some time now.


Andrea: [00:01:39] It's been a while. Yes, but I'm excited to be here.


Carrie: [00:01:42] I'm excited to have you. And I was kind of trying to figure out when we met. I felt like it was at an ASHA convention initially.


Andrea: [00:01:51] That sounds about right. Yeah, that was a long time ago, too. I think we met through a friend of a friend, but I can't remember who the intermediary was. But thank you to whoever it was they.


Carrie: [00:02:02] Were, they were great, whoever it was. So, um, but I am so glad to have you today. And one of the things that I usually ask my podcast guests who have gotten into the field of, um, hearing sciences or audiology, do you have a backstory of choosing audiology?


Andrea: [00:02:23] I wish I had something like there was someone who was super inspirational when I was a kid, and it really wasn't that. When I was in undergrad, I wasn't quite sure what I wanted to do. I thought I wanted to do journalism, and then that wasn't for me. And I went and talked to my advisor and and she asked me what I wanted, and I said I wanted to work with something that would let me work with people that I could do psychology and something science wise. And she told me to take this intro class to speech and hearing, and that was it. I was completely hooked after that. It was that one little introductory class at University of Illinois, and I. It just made sense. It was one of those things that just clicked. And, um, and then when I started my master's program in audiology, which I didn't know if I wanted to do audiology or speech, to be honest, which probably makes sense why I do what I do, because it's not all hearing, like all audiology, and it's not really speech and language, and it kind of has psychology mixed in. And that's just the intersection that makes me happiest. I think that's where you really get to see where things come to fruition in the real world.


Carrie: [00:03:30] Yeah, yeah. No, that is great. That one person, an adviser, just said, take this class and it changed the whole trajectory for your profession. So that is awesome. And, um, yeah. So one of you kind of going into that, that research around that quality of life and your passion for that research to, uh, as it relates to cochlear implants and quality of life, you also run a lab at the university called the CHILL Lab. Can you share a little bit more about that?


Andrea: [00:04:07] Absolutely. So, um, it's called the Children and Infant Listening Lab. And so when we started it, it was all about the infants and we were studying babies. And that was really fun. Um, I loved the babies. But then I realized as my kids were getting older, the age of my participants also got a little bit older. Um, and then I got to adolescence, and it was absolute heaven, which I know nobody says that because who likes adolescence, but I actually really, really do. Um, but what we have done, we've looked at speech perception and music perception. We've looked at speech and language outcomes, and then quality of life has really been the stalwart for like the last 15 years. And really, like I said before, that's where I feel like everything kind of comes together. Um, and part of it came from what I was hearing from the parents, where the parents were telling me their children were having this issue, or they're having trouble making friends, or they didn't feel like they yeah, they just didn't feel like they were fitting in or how they were communicating. And I think all of that from getting the information from the parents and then just talking to the kids themselves, that really has changed what I look at, just really listening to them, I think that's the most important part, is learning from them what what they want or what they're experiencing helps change what I do as well.


Carrie: [00:05:27] Yeah. And I know today for the podcast, we really wanted to take a deeper dive into the role of social skills and emotion regulation and relation to children and adolescents who are deaf and hard of hearing. So how do deaf and hard of hearing children or adolescents, their social skills compare to their counterparts who have typical hearing?


Andrea: [00:05:51] Yeah, so it's been really interesting. There's not a ton of work on that. Um, in looking at their social skills, I think part of it really stems from language. And do they have the language skills to be able to communicate with their peers? And I think one of the most striking, um, pieces that I got was actually from a parent who said that their child was communicating that their best friends were always 1 to 2 years younger than they were. And so then it made me think, is that a language issue? Is it a social skills issue? Um, so a lot of the research has been trying to really disentangle what's going on with them. What we know about social skills is that the they have more difficulty making and maintaining friends. They tend to report more peer problems, like they're getting picked on more, or they're just more socially isolated or lonely. And that's kind of been what's what's been reported for the last 40 plus years. And that didn't matter if they were using hearing aids, if they were signing, what kind of residential school they were in, you know, was it general education or residential? It didn't really matter. Those were the types of things that kept coming out. So that's still the case. Even with as good as our technology is and early identification of hearing loss, we're still seeing some issues that kind of need to be teased apart, in my opinion. Yeah.


Carrie: [00:07:16] And it's interesting because like what you just said, we have early intervention and newborn hearing screening and technology, and a lot of these kids are probably graduating from like a more clinic program for their maybe speech and language skills. However, how does that translate into the real world then? Do you have anything to say about that?


Andrea: [00:07:41] I, I do, I think we prepare them really well to respond to us when we're when we're in the Audiologic booth and they're, you know, responding to questions. And it's really kind of a contrived situation. So even if they have noise, it's a really controlled and they know what to expect. They know exactly what's coming. And in speech and language testing, they can do really well on those tests, but they get all the time in the world, they can have as much time as they want, and that's not what real conversation is like. So even if they do really well in the clinic, I don't think those skills are always 100% transferring over, especially when they're communicating with people their own age versus adults who are going to fill in those gaps for them. So I don't want anyone to think that I'm saying they're doing horribly, and I don't mean that at all, but there is a little bit of a disconnect between or there can be a disconnect between how they're performing in clinic and how they're performing with their peers in day to day. Interactions.


Carrie: [00:08:44] Yeah. And does their level of auditory status impact that at all? I know you said, um, you know, as far as, like peer victimization and things like that, it really, you know, was kind of the same. But is there any evidence with that?


Andrea: [00:09:05] Do you mean like if they're deaf and signing versus using hearing aids or cochlear versus cochlear implants? Is that.


Carrie: [00:09:11] Yeah, that or like unilateral or mild versus more severe to profound.


Andrea: [00:09:17] So that's a really good question. Most of the kids in my studies are ones who are have severe to profound hearing loss, who use cochlear implants. So in our peer victimization study, we also had children who used hearing aids. So there was a broader degree of hearing, um, access for that particular study. But most of what I do is is working with children who have and adolescents with cochlear implants. Um, so is there a difference in in our study for peer victimization? There wasn't a difference. If they used hearing aids versus cochlear implants, there didn't seem to be a big difference between them. Um. I can't answer that question. I'm not trying to avoid it. I just can't answer it.


Carrie: [00:10:01] Maybe there isn't an answer for that. Um, right now, I was just curious if there there happened to be anything, you know, related to that challenge or whatever. Um, well, you know, we kind of shared about, like, the difference between clinic and then going into the real world setting. Um, and you mentioned how, um, communication is really different outside of the audiology booth. So what are some of those common challenges that you've heard from parents or from students, um, facing, you know, the real world situation for those social interactions?


Andrea: [00:10:40] So I think one of the big ones is with when we as adults are working with these children, if they're struggling, if they're if they need a moment to process that information, we are willing to be patient and wait for that. And that's not necessarily what you're going to get. So I think the timing is a big part of that, that temporal, um, access to the information and response time. So if they're taking a little bit of time to process what they've heard, especially in a noisy environment, that's going to throw off the timing of the conversation. So I think it's partly that, um, I think communication breakdowns for them to recognize the problem there, a breakdown has occurred and to know what to do about it and to do something about it. That's a three part task that they don't always do. Sometimes they just don't feel comfortable. They're worried about what other people are going to think about them, and so they're more willing just to let it slide and not get the information they need to participate in the conversation. Um, I think the other thing is opportunities for them to have to practice those skills.


Andrea: [00:11:46] So there was a a kid, he was in ninth grade, and I just remember him telling me point blank that the first five years of his life he spent going to therapy and and getting his device, he had cochlear implants and working with his audiologist and his speech language pathologist and this therapist and that therapist. And he spent all the time doing that, and he didn't spend the time in playgroups and learning how to play with others his own age and, and how to navigate the social situations with his peers. And for me, that was, you know, coming from a ninth grade boy who would have thought I'd ever say I really learned from from this ninth grade boy, but I really did, because it was such a huge aspect that we spend so much time with them in, in clinic and in therapy that they need to be kids also, and, and making sure that they're really fostering that aspect as well. I think it's important to emphasize that to parents, too. Um.


Carrie: [00:12:44] Yeah, that's a really good thing to learn from a ninth grader. I mean, that's huge to learn that. What are some. So, you know, you talk about the clinic and going to the real world, but what are some techniques or strategies that parents or educators or, you know, maybe related service providers that are working with these students in the more inclusive school environments? What could they be doing to maybe help build this in a different way?


Andrea: [00:13:20] So I think one of them is to make sure that there are those social activities with other kids their own age. And there was a mom years ago, and she said she felt like she had to be the concierge, so she would be the one that would arrange for the play dates or the Or when they got older, to go to the amusement park or go to the mall or whatever it was, because then, number one, she always knew that her kids were going to be included. And number two, she could also, um, make sure that, you know, those things were happening and that she could kind of be around in case they needed some help with those interactions. So I think making sure that they're involved in those activities, if they can be involved in some type of group, seems to be another one. Um, so that could be a sports team. It could be, um, band if they like music, you know, there are different ways that you can do that. It could be in any other type of group. Um, the other so those are things that parents can do, what clinicians can do. I know that there are certain groups, um, certain cochlear implant teams or teams for children who are deaf and hard of hearing, and they have social groups for their kids. And so they let them all get together. And that way they get to be with other children who are deaf and hard of hearing. They get to do something together, and they get to see that they're not the only ones also, but it gives them a kind of a place away from clinic that they get to practice those social skills.


Carrie: [00:14:47] Yeah, and it's such an important part of the whole person picture when they realize that they're not the only one and that they can kind of develop some positive self esteem in that way, too.


Andrea: [00:15:01] I think that's also oh, sorry, something that you see with the a lot of the kids in general education is a lot of times they don't have other peers who are deaf and hard of hearing in their class. And so having that reminder that that they aren't the only one that you can get that through those local groups. There's also lots of camps. And I know you, you have a camp, um, where you are, and I've been working in camps in Dallas and in Colorado as well. And I think that's another place not just for the kids, but also for the families to get more information on. And, and just, I don't know, learn, learn from each other. I think they learn from each other sometimes better than they learn from us, to be honest.


Carrie: [00:15:43] Yeah, well, I think that's true. No matter, um, whether they are deaf or hard of hearing or typical, um, they're going to learn from, from their peers more than they're going to learn from adults. But, you know, you're saying that and I love that you are so involved at your place as well with that social groups and connecting teens and kids together, because I that was a huge part of what I was missing, like growing up as someone that had hearing aids and going to a general or, you know, my neighborhood school, never knowing anyone else. Um, and it really impacted me, um, socially and emotionally through especially those transitional years of going, you know, trying to figure out who I am as a teenager and then thinking I'm the only one in the entire world that has to wear hearing aids and really kind of propelled me into making sure that the kids that I get to work with are connected in some way. And I feel like even if they're connected once with someone just realizing that they're not the only one one time, it could make a huge impact.


Andrea: [00:16:59] It can. And I think also with those camps, they forge those relationships. There are some kids that have gone to the Dallas camp since they were itty bitty like toddlers, and now they're in their 20s and they are still as I there are some of them and they're just still a super close knit group, you know, almost 20 years later, which is pretty amazing that they have just developed that so early. And I think it's it's that bond of having that commonality. Is that why you did that camp? Is that why you guys started the camp up there?


Carrie: [00:17:32] Yeah, I started a program more like a local program. That was a day kind of a thing or a half a day that we would meet a couple times a year, and we would bring middle school and high school kids together and do just self-advocacy, development. So our group was called Alps Now, advocacy, leadership and peer support for deaf and hard of hearing. And it's like, um, I want to say it's where the magic happens. I mean, you cannot. Replicate what happens in this group any other way, but by bringing them together and you come up with a couple of activities, but you give them the space to be who they are and connect with the others. And like you said, they make these lifelong connections. And with social media and different, you know, things like that, they stay connected. Yeah.


Andrea: [00:18:33] I agree that it is magical. I know we're not supposed to say that because in a way we're setting it up to be that way, but it just is.


Carrie: [00:18:41] It is? Yeah. And I have kids who were, um, you know, dragging their feet. They didn't want to go. And I'm like, just come one time. If you don't like it, you never have to come back. And I would say 95% of them have come back.


Andrea: [00:18:59] Yep.


Carrie: [00:19:00] So the hardest part is getting them there.


Andrea: [00:19:04] I agree I agree.


Carrie: [00:19:07] Yeah. So we talked a lot about like the adolescent phase too. But how important is it to address this early like early intervention and preschool for social skills.


Andrea: [00:19:24] So I think that's what we're looking at right now, because a lot of the research that I've done is really focused on the adolescence. Um, just because they will tell you anything you want to know or things that you don't want to know. Um, which again, is why I like them so much. And I think some of the things that we see. Are things that could be addressed really early. I think a lot of times what we do is as audiologists, we want to make sure they're getting the best signal and speech language pathologists that they have nice, clear articulation and that their language is on par. And that's great. But then that social piece doesn't always fit into the, you know, as far as those high priorities. And I think those early play groups, I think there are things that we can work on in clinic to make sure that they know how to self-advocate early on. I mean, they can tell you when their device is working versus when it's not, or if they're having trouble. I think those are things you can work on really early and teaching them to know how to interact with other people. I think Theory of Mind and some of the not not just being able to identify their own emotions, but to identify emotions in other people. And that's that's a skill that as parents, we need to talk about, too. As you know, when you're reading books or if you get mad about something to explain it and, and explain to them how you're thinking, I mean, you don't have to say I, I'm feeling mad right now, but, you know, but but I'm feeling upset and this is why. And, you know, then they can see this is how someone shows it, either in a movie or a book. Like, I think there are lots of ways that we can address it really early. Um, and there's lots of books on emotional intelligence. I think that's one of my favorite things right now to even in preschool books.


Andrea: [00:21:11] My, um, I mean, I, I vividly remember there's a book called my, My Many Colored Days by Doctor Seuss, which I didn't remember until my kids were little and someone gave them the book. And when you first read it, you think it's all about colors, but it's actually all about emotions, and it attaches the emotions to the different colors. My son read the cover off that book, and I think those are things that I mean, then that was a board book. So those are things really early to have those conversations and if they can recognize it, I think sometimes the children who are deaf and hard of hearing need to be explicitly taught some of those things, and I think those are really good avenues to do it is you can take those little opportunities. It doesn't take a lot of time, but it has a huge impact on how they interact with others, whether they're their own age or whether it's an adult. That was a really long answer. Sorry.


Carrie: [00:22:01] No, that's great, but I know that, um, you know, to add on to that, you have been doing some research kind of in that area, um, with what is it like, more like visual recognition. Recognition and emotions. Do you want to share a little bit about that?


Andrea: [00:22:20] Sure. So what's really interesting when you look at visual emotion recognition. So we show them different faces. And and there was no difference between the groups for visual emotion recognition at all. It like for accuracy or reaction time, they looked exactly the same whether, you know, for static photos. But then when we use dynamic videos and they looked at the image and they had either part of the image or all of the image, there was a difference between the groups. And what I mean by that is that the group with typical hearing, these are all adolescents. The group with typical hearing was faster and had higher accuracy when they had 80% of the video. So they didn't have all the video. They could make the decision and be accurate faster than the group with cochlear implants. So even with visual emotion recognition, they just need a tiny bit longer for the cochlear implant group to be able to get the right emotion identified. Um, for auditory emotion recognition, it's all over the place. But we included, um, kids with typical hearing, with hearing aids, and with cochlear implants. So, um, and we didn't have we need to collect a little bit more data on there. So there's a lot of variability in the deaf and hard of hearing group. But overall they aren't as good as emotion recognition at emotion recognition compared to their peers with typical hearing. And I think Monita Chatterjee has been showing the same exact thing that, um, it's just hard, especially with a cochlear implant, to pick up some of those emotion cues auditorily. And that's when everything's straightforward. But what happens when you have sarcasm and you have a mismatch between what's going on visually and auditorily? And I don't think we've actually nailed that down for how well they do as good at recognizing things like that. When there is a mismatch, I think that's the next thing we need to look at.


Carrie: [00:24:23] Yeah, which kind of makes sense when you think about, um, cochlear implants aren't as good as giving a lot of low frequency information. And when you think about emotions and inflection of people's voices, right, that it would be harder to recognize that, especially if it's a nuance and somebody's being sarcastic and their face doesn't match what they're meaning to say. Right?


Andrea: [00:24:51] Right. And some I mean, there are some people with typical hearing who aren't savvy at that either. They miss it all the time. So you have to pay attention to that too. But I think that's really important for kids who are in middle school and high school because sarcasm and making jokes, I mean, that's that's the bread and butter for that age group, right? I mean, whether they're talking to their parents or to their friends, there's always jokes or sarcasm going on. And so it's really important for them to know how to navigate that as well.


Carrie: [00:25:23] Yeah. Which kind of is a great segue into um, I know you've done some work and some, uh, research in the area of like, bullying and that kind of, uh, you know, written about it. Is there a higher incidence of, um, bullying or peer victimization in this population when compared to, um, typical hearing or other populations?


Andrea: [00:25:54] There. There is. So in the general population, it's about a third will report that they've been picked on at least once. Um, when we look at special populations. So any kids with Exceptionalities, regardless of what that exceptionality is, it's somewhere between about 47 and 70%, depending on the group that's included. Um, and so we ask the same exact questions of children who are deaf and hard of hearing, who used hearing aids or cochlear implants and half of them. So 50% of them said that they had been picked on at least once. So that's compared to it was 28% in the typical hearing population. And the way that they get picked on the most is they they're excluded. They're socially excluded. I should say they feel socially excluded. Now, it doesn't really matter if they were or not, but it's their perception because it's the same sense for them. Right? Um, so yeah. So, uh, it was 20 I think it was five, five times the rate of feeling socially excluded in the group with cochlear implants and hearing aids compared to typical hearing. So 25 versus 5% or something like that. It was crazy. It was it was I was unbelievable how high that was.


Carrie: [00:27:13] Yeah. Which is really important for providers for parents to to recognize that. So how would we as professionals really, um, capture that or make sure that, you know, you have an adolescent coming in and you're doing their annual checkup and then you oh, everything looks great and you have them leave or what else? What else should we be doing?


Andrea: [00:27:44] Well, I'm nosy, so I'm always going to ask about, you know, do you have friends? Do you, do you get along with people? Do you have a boyfriend? Girlfriend? You know, but that's kind of just my personality. I don't think we have to do it from a nosy standpoint. Um, but I think those are questions you can ask. Um, you know, how how are things going at school? Do you have friends? I think those are really valid questions to ask. And if they say they don't have friends, then that's when you can maybe probe a little bit more like, oh, like, you know, are you getting picked on? Is everything okay? I think there's an easy way to do that. And actually, there was a group you were involved with, right? With Carol Flexer and Jane Madell years ago. Um, I remember I think it was Kris English.




Carrie: [00:28:30] Kris English. That's right. Yeah, yeah. And we looked at like and actually had like a bullying questionnaire that you could use in the clinic just to ask some of those questions. And if, like you said, if they said, you know, no, I don't really have any friends. And here's a follow up question, how can you kind of expand and get more information too.


Andrea: [00:28:52] Yes. And I think it's also really important to know, um, that one of the things that came up in our research, we would have the kids complete the surveys on an iPad and sometimes the parents would be around. And some I mean, of course we got consent. Don't worry. Sometimes the parents would, you know, look over their kid's shoulder to see what's happening. And one I remember there was this one parent who came and said, she said that she has lots of friends and that's not true. She only has 1 to 2 friends and the others are acquaintances. And I think that's something else that we need to kind of pull apart. Is are these true friends? Do they have true friends or are they just acquaintances? And do they have someone to kind of share their inner thoughts with, to share time with, to do things after school? And I think sometimes you can dig a little bit more into that, but I think it's more than just do you have friends? I think kind of digging into are these is it a true friendship or not? Is it and is it bi directional? Right.


Andrea: [00:29:51] Do you want to be with each other or not?


Carrie: [00:29:54] Yeah, exactly. Well, and I think that's a bigger like conversation in the general like population for this, this next generation, because they're so involved with their phone and texting and Snapchat. So yeah, you have how many people following you or snapping you. But you could say I have 400 friends, but you haven't talked to anybody in real life.


Andrea: [00:30:22] Oh I yes, yes. I mean it's the same thing for us old people on Facebook, right? Um, I'm friends with lots of people on Facebook, but I'm not really friends with them. I mean, I am, but some of them are really acquaintances at this point. I'm friends with a lot of them. Don't be offended if we're friends on Facebook.


Carrie: [00:30:42] You're going to get all these un friends in a minute.


Andrea: [00:30:44] I know, please don't unfriend me.


Carrie: [00:30:48] Oh, but I think, you know, I when you ask that question in a clinic, it makes.


Andrea: [00:30:57] Yeah. But I but I think those are questions that we can ask. And it doesn't have to be like it's a prying. I mean, these are kids. These are adolescents that you're spending a lot of time with. You know them sometimes they know you and they're more willing to confide in you than maybe there are their parents, because sometimes the parents can become kind of helicoptering and they're so concerned and they, um, push their concerns onto what they're they think their child is thinking, too, right? They, um, what is that called? Do you know? Oh, there. Anyways, so they think that their kids have the same exact concerns that they do, and that's not necessarily the case. So sometimes I think the kids will hold in and not tell the parents if something's going on, but they're more willing to tell you, kind of as a trusted outside adult who is safe to tell things to.


Carrie: [00:31:47] Yeah. And sometimes they might not want the parents to worry or go into the school and maybe make it a bigger deal. I mean, there's probably a lot of that that might be going on as well.



Andrea: [00:32:04] Exactly, projecting. That's a word I wanted.



Carrie: [00:32:07] Yes, projecting. Thank you. I was thinking like executive functioning, but that wasn't it either. Oh, so it's been a long week, right? So we're getting through. Um, but just I guess, you know, we've talked a lot about, like, social skills and and bullying and you know starting early, but are there any other specific strategies or supports that you can kind of think about that we may want to be? Teaching our students or clients.


Andrea: [00:32:47] Um. I do think making sure that they're they're involved in something. Um, when you're on a team and this is kind of across the board, whether it has nothing to do with hearing loss. But basically, if you're on a team or you have, um, some type of group, intramural group, whether it's with the school or outside the school, that kind of gives them a little family where those kids are going to have their back and they have each other's back. And that's something that's been shown in the friendship literature. Um, for kids, with typical hearing in the general population. And I think the same is true for these kids. Um, I do think that's, you know, I expect it to be better in the future, kind of as we go forward, as we have earlier identification, we have earlier fitting of devices and better communication and a lot of these, these kids. So I think kind of the next generation, I would expect that to be better. I think the other thing is this generation, um, is more accepting and more inclusive than I think some past generations. And I think that's something that's going to bode well for these kids, that those things that were viewed as huge differences, you know, when you and I were growing up aren't necessarily as big of a deal. And I think, you know, making them aware. You talked about self-advocacy before, um, having them where they're not necessarily hiding their devices and they're proud of them and they can talk about them. I think that openness really opens up a lot of avenues for them as well.


Carrie: [00:34:25] Yeah. And like you said, that can start in preschool with just like reporting whether or not their devices are on or not working and then building those, you know, developmental self-advocacy skills, which is going to help with their self-perception and identity of who they are and hopefully help with the lesser peer victimization, because they're going to be very confident.


Andrea: [00:34:52] Exactly, and knowing how to describe their hearing loss or their hearing aid or cochlear implant and how it works. You know, these are like glasses for my ears. I think there are things that we can give them the language for, to help them kind of figure out how they want to handle that as well. But it's going to differ. Just like everyone, you know, adults are different. All kids are different too. And so trying to match that strategy with who the child actually is from a temperament standpoint is important to do as well.


Carrie: [00:35:23] Yeah, but what a great skill to develop and be able to role play. Or just like you said, give them some of that language that they would be able to build within themselves and then personalize it as they grow.


Andrea: [00:35:37] Right, absolutely.


Carrie: [00:35:40] So is there anything that I didn't ask you that you were wanting me to ask you.


Andrea: [00:35:50] Oh, I feel I like how this conversation went. It was a little organic and how it evolved, but I feel like this was covering exactly what we had talked about before is just giving a little bit of a shout out to looking at things beyond just speech, language and hearing and how they actually implement those skills in the real world. Um, I think that's just important for us to think about.


Carrie: [00:36:14] Yeah. And I just applaud your work and your passion in this area because it really is the end result, right? We as human beings, we want to be able to interact and have meaningful relationships with other people. And if we're not addressing this, um, and helping support this, then it's going to the outcome isn't going to be the same. So to be able to just, I don't know, have a way to really strategically look at it and then, um, implement it into the clinic setting into the school setting is really important for us. I children who are deaf and hard of hearing because they need that extra support in social and communication a lot of times.


Andrea: [00:37:05] They do, they do. And I think we're the right people to help. But I think it's also important to get the parents involved and sometimes the siblings too. The siblings know a lot more than we give them credit for so yeah.


Andrea: [00:37:17] They're a big key to this as well.


Carrie: [00:37:20] They are. And just to kind of wrap up, are there any like specific resources that you would recommend or networks that you would recommend? I know you talked a little bit about your camp and things like that, but anything that you can think of that people might want to look into.


Andrea: [00:37:41] Sure. So there are camps all over the United States? I'm sure there are around the world too. I just haven't looked into the global global camps. But I think looking into camps is one thing. Looking into local resources for support groups. The Dallas Hearing Foundation, for example, has a teen squad that they get together. And I know you you mentioned that that you have one up in Columbus as well. Um, I think there's also some websites that are really helpful. The supporting success for kids with hearing loss is and I know I'm sure you've talked about that a million times. Um, and there are websites like that I think just provide great resources for the families so they can kind of get what they need and connect with others. There's also lots of groups on Facebook for the parents, and sometimes there's also ones on Reddit. I haven't looked at those in detail, but I think there's good information there as well. But, um, I think pretty much anything online, lots of social media platforms will have different resources for the families.


Carrie: [00:38:48] Yeah, well, Andrea, I thought this was an incredible conversation and a very important conversation to have, um, on the Empower Audiology podcast. And I just want you to I want to thank you for being an incredible guest today. And it was an amazing conversation.


Andrea: [00:39:06] Thank you. It was fun connecting with you, too.


Carrie: [00:39:09] All right. Thank you, listeners, for listening to the Empower Audiology podcast. If you like this, please give a five star review and share it with, um, those who may also benefit from this conversation today. Thank you.


Announcer: [00:39:25] Thank you for listening. This has been a production of the 3C Digital Media Network.




Episode 63: empowEAR Audiology - Dr. Kari Morgenstein

Announcer: [00:00:00] Welcome to episode 63 of empowEAR Audiology with Dr. Carrie Spangler.


Carrie: [00:00:14] Welcome to the empowEAR Audiology podcast, a production of the 3C Digital Media Network. I am your host, Dr. Carrie Spangler, a passionate, deaf and hard of hearing audiologist. Each episode will bring an empowering message surrounding audiology and beyond. Thank you for spending time with me today and let's get started with today's episode. The airing of this episode also marks the beginning of 2024. Happy New Year, everyone! This episode that you will be listening to was recorded a little while back with Dr. Kari Morgenstein. This episode actually motivated me to sign up for her energy leadership, assessment and personal coaching session. Wow, what an insightful investment to dive deeper into ensuring that I am the cause rather than the effect of my life. These sessions with Dr. Morgenstein also propelled me into exploring becoming a certified coach. As you listen to this episode today, take inventory of you. A certified coach can help you redefine your career goal or personal goal, overcome obstacles, help you clarify and make difficult decisions, increase leadership and energy, and become confident as well as develop deep self knowledge and awareness. Tune in today with Dr. Kari Morgenstein and stay tuned for future empowEAR Audiology episodes as I will be sharing my coaching journey as well. Okay, before we dive into today's episode, I wanted to take a moment to give everyone a background about my guest that I have today, Dr. Kari Morgenstein.


Carrie: [00:02:08] Dr. Kari Morgenstein is an experienced, genuine, and goal oriented certified coach and speaker. She received her coaching certification from the Institute for Professional Excellence in Coaching, or iPEC, and is a master practitioner of the Energy Leadership Index Assessment. Dr. Morgenstein is the co-owner of DB coaching Group with over 15 years of experience teaching, mentoring, presenting and coaching and her coaching group, she helps early career to mid-career health care professionals find their voice so that they can lead with confidence, courage and she began her career at the University of Miami Department of Otolaryngology as the founding director of the University of Miami Children's Hearing Program. Under her leadership, she designed, developed, and led a multidisciplinary team of healthcare hearing healthcare professionals. In this role, she managed a multi-million dollar budget while gaining international recognition. Dr. Morgenstein was the youngest individual to have served as the president of the Florida Academy of Audiology, and sit on the American Academy of Audiology Board of Directors. She is a proud member of Women in Academic Medicine, and was chosen in 2019 to attend the AAMC Early Career Women Faculty Leadership Development Seminar. Dr. Morgenstein has a passion for supporting women in medicine and challenging the status quo. I am so excited to have you today. Thank you for joining me.


Kari: [00:03:52] Oh, I'm so happy to be here. Thank you for having me.


Carrie: [00:03:56] Well, I love your passion statement, supporting women in medicine and challenging the status quo. And that's another reason I'm excited that you're going to be on the EmpowEAR Audiology podcast. And I'm sure all of the guests listening today will really enjoy everything that you have to say. But as I read in your bio, one of the things that you started out as a career in audiology and I just love to hear how people somehow get started in that direction. Do you have a story behind that?


Kari: [00:04:32] Yeah, I do have, um, I do have a little bit of a story. So, you know, just like many people, I was trying to figure it out in undergrad. And, um, at the time, I really knew that I wanted to help people. Um, from a very young age, I knew that I wanted to be in a profession that helped, um, others, whether that was children or adults. And, um, you know, so through that one thing kind of led me to another. And I was at home in Chicago and was able to do, uh, shadow a pediatric audiologist. Um, her name is actually Beth Dr. Beth Tournis at um Children's Hospital of Chicago. And I give her a shout out because she she forever changed my life. Um, I was able to shadow her for a couple days. She was mostly pediatrics, a little bit of, you know, audios and hearing aids, and then a lot of cochlear implants. And just getting to see a kid hear for the first time, and how it has the ability to forever change the life not only of the child, but also of the parents and the extended family. Um, I was sold, I was I was like, I, you know, I could do this. And I was super excited about it. So I'm forever grateful that, you know, they let me come in and observe. And that Dr. Tournis was so willing to let me learn and just be a part of her days for a couple days.


Carrie: [00:06:12] Well. Wow. And then you landed in Florida, obviously, and had a career at, um, with children who have hearing needs too in Florida. So how long were you there?


Kari: [00:06:28] Yes, I did my graduate work at University of Florida and then did my last year externship at the University of Miami, and I was there for about ten years. I ran and directed the children's hearing program there, and, uh, it was awesome. It was a really neat opportunity. I was able to step into leadership early in my career, which had it was amazing and awesome, and it had its own struggles. So it was really, really neat to be a part of a large university and to just be part of such a well rounded, incredibly smart, amazingly supportive team.


Carrie: [00:07:17] And I'm sure all of those stepping stones in your early career with leadership kind of got you to where you are now. And in your bio, you mentioned that you're a full time with DB coaching group and that you wear many hats in your own family. You're a survivor of several life threatening health conditions. You're a former Division one college athlete. You're a TEDx speaker alum, and a recovering workaholic, as you call it. Did any of these personal characteristics, characteristics that you mentioned with you and your website lead you to pursue what you're doing now, which is coaching?


Kari: [00:08:01] I, I think yeah, it's a good question. I think in many ways, um, for all of us, like our, our past experiences, especially our past hardships, often mold and shape the direction that our lives lead. Um. And I was no different. I, um, I think a big part of, uh, for me was being always an athlete. Um, growing up, I was always involved in athletics, went on to Indiana University to play college volleyball. And it was through that experience that I, I remember at any given time, just having six, seven coaches surrounding me, and there was coaches there for conditioning and strength and your mental health and you know, your your specialty coach. Right? So if you play defense, you had a specialty coach, then you had the head coach. And it just felt like an environment that was so rich in supports and, um, grace and compassion and also people there that were willing to challenge you to make you better. And when I got into the real world. I guess I was a little naive because I felt like, yeah, like this, this sports bubble is going to be, you know, in, in, in the real world. And I remember just kind of like looking around and being like, wait, like, where are my coaches? Like, where are my people? And I remember thinking that like, wow, like this is really hard to navigate without a coach, without a playbook, without kind of guidelines to, you know, boundaries to kind of work within. And then you had mentioned I, I battled a few health conditions that were life threatening. And I think through that experience, you just see the world completely different, you know, for good or bad. And I remember through one of the conditions I was battling, um.


Kari: [00:10:23] A colleague had a coach and part of that part of that of having a coach. The coach, um, met with me and talked to me just to get input. And I'll never forget, she said to me, like, have you ever thought about coaching? And I was just sitting there like, no, I'm just trying to get through the day, you know? Like, I am just trying to survive. Like you have no idea, like what's going on in my life right now, like coaching? And I remember getting off the phone with her and saying to my husband, like, do you know that there's like, professional coaches? Like it's not just, you know, on a field or arena or a court, like there are people that are coaching professionals. And I remember thinking, gosh, two things. Gosh, that makes so much sense. And the second thing I thought is, could I do that full time? Because that sounds amazing. And, you know, through my illnesses, it was just always it was always on my mind. And then I, you know, I, I when I got healthier and stronger, I looked into different programs. And that's kind of what led me to IPEC and, uh, started the coaching group with my business partner, Dr. Amy Badstuber. And it's it's just been so much fun and such a neat experience. And so, yeah, I think the answer is, yeah. Like my lived experiences being an athlete, battling health issues, having different leadership roles early in my career, and then also being a mom and transitioning to that role and wearing that hat. I think all of it kind of led me to where I am today.


Carrie: [00:12:11] Yeah, that makes so much sense about your college career and coaching and having all of these people supporting you. And then you get out into the real world and you're like, wait, I need to have these people to kind of get me to the next level or to keep me going and whatever path I want to go, or thinking bigger however that might be. And I feel that coaching is really kind of a growing certification or a career pathway in different areas. Can you you you mentioned professional coaching and can you just maybe share a broaden a little bit more about how professionals and individuals might view coaching? Because I think what you said coaching typically you think about athletes, right? But you don't think about, oh, wait, there's a whole other world out there that people can benefit from coaching.


Kari: [00:13:10] Yeah, totally. I always I always say this line, I always say professional athletes have coaches. Professionals need coaches. and the so coaching really you're right Carrie. It really has taken um it's become more popular and it's become almost like a buzzword that people talk about. Or some companies, you know, say, oh, we offer coaching. Um, and I think it's important to recognize that. True coaching is very different than, let's say, consulting or mentorship. Um, so consulting, right. It serves a purpose. It's great. But it's really hey, here's a roadmap. This is how you're going to do it. And here's our advice. Mentoring also serves a purpose, right? I have incredible mentors that supported me and my career and still support me. But the issue that can happen with mentors is that sometimes it's a let me show you how I did it and hey, come with me, which can be okay and it can be really helpful. But if your path and your desires and your interests are a little bit different than your mentor, that can be kind of how you go on a path that might not be a good fit for you. Um, and then the other one that gets thrown in with coaching a lot of times is therapy or counseling, and that is a bit different too, than, than coaching.


Kari: [00:14:41] Um, therapy really is something that kind of stays in your past. It looks at your your past experiences. What about your past is showing up today. It often takes people from dysfunctional to functional and with true coaching, the coaching that we do with our group, it really gets at the core of who you are today and where you want to be tomorrow. And the neat thing about coaching is that it's a true partnership so we don't guide it. We're not telling you do this, do that. It's really having that person to ask the right questions, ask the tough questions so that you can kind of go inside and say, hey, you know what? For the first time, I'm listening to myself, my heart, my head, and I'm choosing to move forward a certain way. And so coaching, they often say, takes people from functional, right? They're they're doing pretty good. They're functional and makes them more optimal. So that idea of taking someone good to great. Hmm.


Carrie: [00:15:53] I love that and I, I think I know your answer, but why? Or who should get a coach or want a coach?


Kari: [00:16:05] I mean, obviously everyone.


Carrie: [00:16:08] I thought that was going to be your answer.


Kari: [00:16:12] You know, and we laugh about it and we joke about it. But man, like, it's so true. Like, everyone could benefit from a coach. Um, you know, I guess I guess there's three things that stand out to me. Um, I think besides everyone, I think somebody who's. Looking to be to show up, like to just show up in their life and show up authentically and show up in a raw form. And it's just like, okay, bringing all of themselves to the session or to the appointment, the good, the bad, the otherwise right. They're just ready to, to be, to, to show up all of themselves. They don't want to put a mask on anymore. They really want to dig deep and show up. Um, I think the second thing is someone who is just open to growing. You know, I think a lot of times lately we hear about this growth mindset. And for me, it's just having the ability to to have the courage to self-reflect because my goodness, it is way easier in this world to just go, go, go work, work, work and not stop and think about your feelings, your emotions, your actions. It is your thoughts. It is so much easier to just hit fast forward and go, go, go. I'll worry about that later. I'll worry about that later.


Kari: [00:17:54] That's not my problem. I worry about it later. And so I think someone who's ready to have a mirror held to them, which is not always easy, you know, and to do to do the work of reflecting and being willing and open to grow. And then I think the third thing is they're ready to accept a partnership. You know, we know in health care that there's many professions, one of which is audiology that is dominated by women. And women often struggle with asking for help and asking for support. And so it seems like such a. Simple thing, but we often have clients that'll say, like, I just had a client last week who said to me, wow, for the first time in my career. I'm asking for support, and it finally feels like I'm not alone in my career. And so I think someone who's ready to accept that support and they don't have to be like, oh my God, I'm ready, you know, let's do this. Yeah. Give me all the help. But just like has an openness to it that like getting support and having a partnership in your career and your leadership journey and your transitions that happen in your life and in your career. They're open to getting support and collaborating in a true partnership that is coaching. Mm.


Carrie: [00:19:33] That's a great explanation of the everyone but drilling down to really, who you know, may benefit being open and ready to kind of, um, have that mirror held to them. Is that the person that you've probably looking for in that partnership? So if there's someone who's out there who's listening and thinking, yeah, maybe this is something that would be beneficial for me. Can you share what maybe a coaching session might look like or how does that work?


Kari: [00:20:09] You want to do one now?


Carrie: [00:20:12] We could I don't know how good it would be. Yeah.


Kari: [00:20:15] We'll do that for the next podcast.


Carrie: [00:20:17] Okay. There you go.


Kari: [00:20:19] Um, yeah. What does it look like? So. Logistically it is typically 60 minutes. We um, with our coaching group, we have two different programs. Um, we have a program that's three months or 12 sessions and then a program that's six months, 24 sessions. And the reason that it's the three month or six month commitment is that it in order to see sustainable changes for yourself, it's really requires a good amount of sessions, you know, to look at things, to kind of pull back the layers and get to that core of what your blocks are, what your limiting beliefs are, what your assumptions are. Because we all show up with filters and baggage that we see the world with. And coaching, you really need that time and that commitment to identify those blocks and those limiting beliefs and to break through them. Um. Outside of the logistics. And of course, we have people who are like, I just want to work on this problem. And so we offer some smaller opportunities where there's 2 or 3 sessions where we might do an assessment and then offer 2 or 3 sessions. And that's really for people who are like, I have a meeting in a month. And I, you know, I want to ask for a promotion. Can you support me with that? So it's really specific to a specific issue or problem that they want to work through. And then, like each session, looks a little different. The client really guides the sessions and what's on their mind, what's showing up for them personally, professionally. And it's kind of becomes this harmony, this like beautiful, beautiful song that just comes together with the client and with the coach, and you just harmonize through your journey together to figure out how you can best support them to achieve whatever their goals may be.


Carrie: [00:22:27] Mhm.And how do you is there ever like a determination of who would be a good client or that kind of thing. I know the harmony and I can't imagine anybody not clicking with you because you have this personality that just shines. And I feel like I could just spill out anything to you right now, and you would be such a great listener. But I'm sure there's just different personalities. And how does that work?


Kari: [00:22:58] Oh, that's a great question, Carrie. So we do, um, we do offer, uh, complimentary, uh, 45 minute intro call. And in that, in that call, like, we can, we can figure out, you know, is coaching right for that person? Um, maybe they need some other support. Maybe coaching is not the right fit for them. Um, and then, like you said, you know, if there's. You know, different. You know, everyone has different styles, right? Just like different athletes click and resonate with different coaches, right? I know even for me there's some coaches I had that like it just it just worked. You know it was I appreciated the how they gave me feedback. Um, I appreciated the way that they they connected with me, the way that they coached me. And so you yeah, you see that a little bit with clients as well where maybe it's not a great fit. Um, but I most of the time, people that reach out and jump on these intro calls with us, most of the time it does work, it does click. And the reason for that I think, is, well, two things. Um, we're unique. We have more than one coach, so we have myself and Amy. And so Amy and I are both different, right? She has a different personality than me. And so maybe they click with her and they don't click with me. So we're really unique that it's not just one person. If they feel more connected with her or they feel like her skill set might be better for them, then she can see them, or I can see them, you know, vice versa. And so we're really, really unique in that sense that most of the time, like whether it's either a good fit for me or it's a good fit for Amy. And like I was saying, most people that jump on these calls like they're ready, you know, they're just they're tired of feeling drained and overwhelmed and anxious and they're ready to show up with having more peace in their life, finding more joy, and not being that workaholic that I can so relate to.


Carrie: [00:25:13] That. Yes, that makes a lot of sense. And I can see how when somebody sets up that 45 minute call with one of you, they've already done a lot of thinking and research, and they're just ready to take that next step. So I can see how that would click really quickly to. In your bio, you also mention that you are a master practitioner of the Energy Leadership Index Index. How does that play into your coaching?


Kari: [00:25:46] It is. It is plays in a ton. Um, so the ELI so the Energy Leadership Index is a really cool, really powerful assessment. It's different than a personality test. So I think many of us are used to personality tests, maybe a disk or a Myers-Briggs. And it's different because this is an attitude test. So it looks at the attitude and the filters that you show up with on a day to day basis. And then what's really cool is it shows how you show up and what energy you bring when you're under stress.


Carrie: [00:26:36] Mm.


Kari: [00:26:37] And what's really important about having this assessment for us in our coaching group is that we know that many people in health care are kind of living in that constant state of stress.


Carrie: [00:26:49] Mhm.


Kari: [00:26:50] And so we, we care of course, how you're showing up on day to day. But we really want to know how you're showing up under stress and what stress is doing to your energy and to your attitude. And the other thing that's really neat about this assessment is that, you know, with a personality and you have kids Carrie like I think in a lot of ways, like they're just kind of born with their personality. Wouldn't you agree?


Carrie: [00:27:18] Like, oh yeah, both my kids are so different. And I'm like, they've been raised but under the same roof. But I'm like, they definitely were born with their personality too. They're enhanced by us, but they're definitely different kids.


Kari: [00:27:38] Mhm I love that I love that word enhance right. You're right. So like it's almost like a work with approach. Mhm. Right. Like this is your personality. Like let me do all that I can do to enhance that. And so. Well, it's it's kind of difficult with a personality test. You're like, well, that's your personality. And like, we're going to do our best as the, the, the leader here to kind of work with your personality and enhance it, like you said. And the neat thing about attitude is that we can all change the way that we it's a choice, right? The attitude that we show up with on a day to day is a constant choice. And so what's neat about the ELI and the debriefs that we do is that it just you just gain a lot of awareness, a lot of clarity about how you're showing up. And then you can choose if you want to change that. And so we're, we're, we're it's a really, really, really neat, really powerful assessment. And. Yeah, it's. I can't say enough about it.


Carrie: [00:28:43] Well, I know that you had put that bug in my ear a while ago about the, um. ELI. And you're making me excited to, uh, connect with you about doing that and kind of pulling, seeing what filters I have and what I bring to stressful situations. Because, as you said, in health care and in our jobs, we just are under the, you know, like under a lot of stress. And what you said earlier, we don't take the time to think about anything. We just kind of get up and go and never have that reflection time. So I'm sure that shows up too, within the assessment, too, of how we look at life.


Kari: [00:29:31] Absolutely. I'm ready for you. Let me know.


Carrie: [00:29:33]  I know you are. I know you are. We'll set this up for sure. This would be like a whole another reveal after, um, see what's happening. But I know that you said that it's Amy, right? Is your, um, the other coach. And tell me a little bit about your name. Do you dB coaching group and where did that come from?


Kari: [00:29:57] So D is my married last name. So Dermer and Amy's last name is Badstubner. So there's the D, there's the B, but it's of course lowercase and capital like decibel. And it's done on purpose. We both Amy and I met in graduate school at University of Florida, and Amy went on to, um, build and run her own audiology practice, which she recently successfully sold. And I obviously had a very fruitful, amazing career in audiology on the academic university side. And it was really important as we were creating our business, to have a tribute to audiology and kind of where we came from. And for me, I'm forever grateful for all the people in audiology that shaped me as a person and as a professional and ones that continue to to I mean, just last week I was talking to a mentor of mine, um, and, and it was just really important to both of us to just kind of give a shout out to where we came from and to not lose our connection with audiology, which, as you know, is such an amazing profession and has given me so, so much. And then the last thing was dream big. And I think, Carrie, when we first started, I think you said like think big.


Carrie: [00:31:27] Mhm.


Kari: [00:31:29] Um, which I was like, oh like I totally yeah think big, dream big. You know, Amy and I live by that. We really try to challenge each other within our business and on our team to challenge the status quo. To what? No idea is too big, no thought is too crazy and just kind of see where it lands. You know, life is too short to play small and to, you know, be timid. And so it's a reminder of, hey, you know, building a business might be hard. It has its own ups and downs, but never to forget that dreaming big is important.


Carrie: [00:32:11] I love that with it. Keeping your roots in audiology with the with the name, and then having a partner that happened to be in grad school with you. So that is so cool. And I know on your web page you and within your bio, you said you focused a lot on supporting those early career to mid-career professionals in healthcare. Why did you kind of use that as a focus?


Kari: [00:32:40] I think it was, you know. I think because that was the area that we found that we needed the most support, and it wasn't always available or easy to find. I think that group is interesting. Um, you know, early career, you're trying to figure things out. You're trying to figure out your professional fingerprint, mid-career. Sometimes your personal life changes, things get a little crazy, and that might show up professionally and I think. It's a group that needs a lot of support. There's a lot of things happening, a lot of transitions, again, personally in people's lives or professionally and or professionally. And Amy and I really wanted to be support to that group and make sure that. You know, I don't believe that you need to learn things the hard way. A lot of people say that, that you just got to figure it out yourself and that you got to figure things out the hard way. And it's I don't believe that. And so I think that if you know someone is in their early career or mid-career and just trying to figure it out, if we can make it a little bit easier, that feels incredibly rewarding. Mm.


Carrie: [00:34:20] Do you have any other target groups that you have besides health care professionals? And I know you like women is a big part of of your group too. And supporting women who are in leadership positions too. But outside of that, do you have focuses?


Kari: [00:34:37] Yeah. We're really focused right now on health care. You know, there's such a need, especially post-pandemic. We have clients that range from nurses to audiologists to speech language pathologists to physicians. And there's a lot of patterns, you know, that they're showing up with. And there's a ton of burnout and a ton of just kind of reflection happening. And so for right now, our group is really focused on health care. You know, who knows, maybe in a year from now or two years from now, you know, Amy and I have different interests and different passions. We both have pretty diverse backgrounds and we have ideas in mind. Um, but for right now, we're really focused on supporting those early career and mid-career professionals in healthcare.


Carrie: [00:35:29] Well, that's where your dB comes back into play, right? Your dream big.


Kari: [00:35:34] Exactly.


Carrie: [00:35:36] If listeners wanted to get connected where they're like, hey, this sounds like something I would like to explore or get more information about, how can they get in touch with you or with Amy?


Kari: [00:35:49] Yes. So they can go to our website. Our website is dB coaching Group. Com, or you can find us on LinkedIn. Uh, I'm on LinkedIn. Kari Morgenstein Dermer, you can send us a message. Um, Amy, is Amy Badstubner. Um, and you can send her a message. We love just talking to people. You know, we do, like virtual coffee dates and things like that. And, you know, I really encourage any of your listeners that if they just are, they just want to chat or want to hash something out, or they heard about coaching, but they don't really know what coaching is and they want to just talk about it, reach out. We're we're we're super available. We want to have conversations. It's really fun to meet new people. And, um, yeah, just send us a message and we're we would love to connect.


Carrie: [00:36:42] Well, I can definitely link the website or the your website in the show notes too Kari. Is there anything that I forgot to ask you that you were hoping I would ask you?


Kari: [00:36:56] No, I think you covered it all. It was so fun. It was so good to talk to you.


Carrie: [00:37:01] Thank you. I'm so glad that we had this conversation. And I'm sure there are a ton of listeners out there who are just feeling that burnout, whether it's if they're the healthcare or the schools or whatever. But as professionals who are, um, in this focus in speech and hearing, who just really want to kind of see what their next step might be or just kind of make it a little bit easier. And I hope that they reach out to you guys. So I just want to say I am amazed at what you guys have done to, um, with dB coaching and just kind of, you know, taking, I guess, that, um, dream big that you both had together and just making a move and, and going in that direction. I know that takes a lot of courage too. But obviously it was the right thing for both of you and how exciting to kind of have your roots in audiology, but really go in another direction to, to to help more people in a different way. So thanks for all that you do.


Kari: [00:38:08] Oh, absolutely. That's so kind of you. Thank you. Thank you for all you do, Carrie. You're incredible. And yeah, and you're changing so many lives. So I'm really grateful for the opportunity and to be able to chat.


Carrie: [00:38:21] All right. Well, thank you, listeners for listening to the Empower Ideology podcast, and I hope that you will visit Dr. Kari Morgenstein at her website and reach out to her in the future. Thank you.


Announcer: [00:38:34] Thank you for listening. This has been a production of the 3C Digital Media Network.




Episode 62: empowEAR Audiology - Sydney Bassard

Announcer: [00:00:00] Welcome to episode 62 of empowEAR Audiology with Dr. Carrie Spangler.


Carrie: [00:00:15] Welcome to the empowEAR Audiology Podcast, a production of the 3C Digital Media Network. I am your host, Dr. Carrie Spangler, a passionate, deaf and hard of hearing audiologist. Each episode will bring an empowering message surrounding audiology and beyond. Thank you for spending time with me today, and let's get started with today's episode. Okay, today I am excited to introduce to all of you Sydney Bassard and she is an ASHA certified Speech-Language pathologist. She received both her Bachelor of Science and Public Health and her Master of Speech Pathology from the University of South Carolina. Sydney is licensed in Virginia, North Carolina, and South Carolina. Her clinical focus areas are working with individuals who are deaf and hard of hearing, and those with literacy challenges. Her motto of listening, learning, and advocating stems from the three principles that guide her clinical practice. Sydney, I want to welcome you to the empowEAR Audiology podcast. Thanks for being here.


Sydney: [00:01:29] Thank you so much for having me, Carrie. I'm really excited.


Carrie: [00:01:32] I'm excited to have this conversation with you, too. Before we dive into today's topic of health literacy, I would love if you could share with our audience a little background of how you ventured into the field of speech-language pathology, and then your interest of working with children and individuals who are deaf and hard of hearing.


Sydney: [00:01:56] Yeah, so I have like an unconventional way that I came into the field. So I actually went to school to be a pharmacist and thought that that was going to be what I was going to do. And then over time, my brother, who's younger than me, got diagnosed with dyslexia and ADHD. So I ended up working for a literacy intervention company and loved the work that I was doing there. It was far better than the hard sciences that I was having to take in order to try to become a pharmacist. So I ended up switching my major and became a public health major, and then ultimately went to grad school to become an SLP. So that's kind of how I got into speech language pathology. And then specifically with the deaf and hard of hearing population, I met a professor who does research in that area, and she was looking for people to help volunteer in her lab. I signed up and said, sure, I'd love to. Like I want to make connections. And that's where I started learning a lot more about this particular population, specifically looking at listening, spoken language and literacy outcomes. And ever since then, I've been here.


Carrie: [00:03:03] Well, yeah. That's exciting. I love hearing everybody's stories of how they kind of venture into it, because everyone has such a lot of people have an unconventional way that they get into it. I also wanted to ask you a little bit about your listeningSLP. I feel like that's how I know you because of a lot of your social media, which is amazing what you put out there. But can you just share about your work experience and your business?


Sydney: [00:03:32] Yeah. Thank you. So I used to work outpatient pediatrics on a cochlear implant team, and I loved what I was doing. But coming from a public health background, one thing that I always was able to notice is when people had a good grasp and understanding of some of the things that they were being asked to do for their child with following up for audiological appointments, whether it was going to weekly speech therapy sessions, charging the device, all of those different things. Right. And so when people had a good understanding, you saw that they did them pretty naturally versus when people didn't have a great understanding. Sometimes it came, it could come off to professionals as if they didn't care. They weren't trying when really it wasn't any of those things. It's that they didn't have a good understanding or knowledge of what they were supposed to do. So I was like, you know, I have all of this knowledge about hearing loss and working with the population from grad school. I would love to just share like little tidbits and things that people could do at home. So it really started on. I just wanted to share about listening and spoken language on Instagram, and it's kind of morphed since then, as my own thinking has morphed a little bit too. And now our goal is really just how do we support language development for deaf and hard of hearing children, and then also to how we can find different resources and supports that families may not know about.


Carrie: [00:04:59] Yeah, well, I know your little tidbits are just like those little bytes of information kind of stick with people. So it's nice to have that. And I know today we had talked ahead of the podcast and wanted to dive deeper into a conversation about health literacy and how that can impact a lot of the families that our listeners are working with. And I can see now that your combination or your background with public health and Speech-Language pathology really kind of tie into this. So on a general level, can you just share with the audience what is health literacy and what are some of those key components of health literacy?


Sydney: [00:05:45] Yes. So health literacy just actually got a new definition. So we can think of it as two kind of constructs. You have personal health literacy. And that's just really more so about the degree to which an individual or a person is able to find, understand and use information in order to make health-related decisions and actions for themselves and others. And then the other one is about organizational health literacy. So that's being able to understand how to navigate and work within a system in order to make those informed healthcare decisions for themselves and for other people. And both of those are based on the CDC definition of what health literacy is to this point. So when I think about health literacy, there's the three A's that we can always have. And this is what I encourage people to think about when we are looking for information or creating information. It should always be accurate, accessible and actionable.


Carrie: [00:06:46] I like that acronym or the accurate, accessible and actionable and. For having those three A's. How can how does that impact the well-being for families and and individuals? How can we make the three A's come alive for families?


Sydney: [00:07:09] Oh, I mean, I personally think that having a good understanding of whatever is going on is like the driving force to really committing to care, but also understanding the importance of it. So when we think about like information needing to be accurate, right, we know that sometimes pseudoscience is excuse me, we know sometimes that pseudoscience is out there. So that just means like information that's not accurate. So whenever we're sharing things we want to make sure that it is accurate. It's based on evidence that's based on the science that we know is there. So that we want to share with families like things that they're actually able to understand from that perspective. Then it should be accessible. So accessibility sometimes is not always in like just the print form. That may be multimedia. It could be video. And then we should always think about the fact that the average reading rate is around eighth grade for adults across the US. So when we are looking for resources, if they have a higher reading level and in order to understand them, meaning that they're filled with professional words and jargon that may not be accessible for people, like for the general public or population and then actionable. So one thing that we know, like coming out of the field of public health, is that information alone is not enough. So it's great that they have accurate information that it was accessible for them. But if there's no actionable steps based on what's being presented, what exactly are they supposed to do with that? And so sometimes too, when we don't talk about what is actionable, that's maybe where we see like a breakdown in communication and fall off with care.


Carrie: [00:08:53] Yeah. Which is kind of leads directly into my next question is like, what are some of the challenges that families face as it relates to health literacy, too? I mean, you talked about this breakdown with actionable items, but it probably breaks down on all of these three A levels.


Sydney: [00:09:17] I think the biggest one that I've seen is like lost to follow up with care. So we see a lot of people who we know in the US. We're really fortunate that we have a newborn hearing screening program that's universal in all 50 states, but people go through that, right. And then there's no sometimes kids have no follow up and no follow up can happen for many reasons, right? The parents just don't follow up. People move. Things happen. Like somebody may be feeling overwhelmed with having a newborn and then also having to do an additional appointment. In addition to like the well-baby appointments, there's so many things that can happen. But when we're talking about after the screening, if it just says your child, you know, did not pass, this is what we want you to do. But it's not like written in a parent-friendly way. If it like the steps are not actionable in the sense of like you just told them that they should follow up, but like a list wasn't provided or hyperlinks to a website for them to make the appointment online weren't provided. Is that actually actionable? Maybe. Maybe not. So we see that, I think on the early end, but then even to his kids kind of progressed. I mean, sometimes people have difficulties where they don't go to mappings or they're not able to make it to mappings. Do they understand the importance of like why we do CI mappings, why going to those appointments are important? Do they understand the importance of speech therapy and not just being like, oh, so my kid can talk, but to have like a better and more accurate understanding of exactly what they're supposed to be doing in order to benefit their kid. And if they're not provided with that information, maybe they just don't know, especially if this is their first encounter with like, children, or if it's their first encounter with like navigating the deaf and hard of hearing space.


Carrie: [00:11:09] Which is statistically about 90% of our families who are kind of navigating through that space. Because a lot of times that the child is the first person that they've met who happens to be deaf or hard of hearing. Do you see? Um. Any other barriers as it relates to maybe cultural differences or language differences that kind of contribute to the health literacy challenges too.


Sydney: [00:11:44] Yeah. So we know that these kind of what sometimes are called disparities in the field exist across the board. And so we see it even with health literacy and how it comes into play, is that information being presented in a way that is culturally mindful. So just because I have an infographic, maybe knowing that, like a family might have distrust of the medical system or people is like giving them a handout and sending them out the door. The best way to do it? Maybe not. If I have a video version of the same thing that shows real people talks about real experiences, maybe that would resonate more, especially if we know that there are people that like, look like them or that are within their culture kind of represented within those spaces. Um, I think too, sometimes, like we as professionals tend to be some of that barrier when it comes to health literacy and health information. We want to think that we're not gatekeepers of information, but I've sat on many different sides with many different families, and sometimes it's the professionals like we are not freely sharing all of the different resources in a responsible way. We might just start rattling off about 5 or 10 things, but what we never did was spend time to send a follow-up with actionable hyperlinks that people can go and look for more resources, or even sometimes to like after you give people information, asking them what questions do you have and not do you have any questions? Because most people will be like, no, no, no, no. Like what questions do you have? Most times somebody at least comes up with one and it kind of opens that door for a conversation.


Carrie: [00:13:23] Yeah, those open-ended questions are really important in that kind of a situation, and probably giving some wait time to just let them process and think about all of that. You shared a lot about some of these barriers, especially as professionals that we kind of, you know, put up, I guess, are kind of gatekeepers of information. Do you have some specific strategies that could be employed in order to enhance health literacy for families, especially our families who have children who are deaf or hard of hearing?


Sydney: [00:14:02] Yeah. So I always think that before you provide anything, you need to have gone through it yourself. That sounds a little silly to say, but in being transparent, I've done it like I have done the thing of like, you just pick up a resource, you skim over it really quick and you're like, okay, this looks good enough. And you, you hand it to somebody because we know that we're busy and sometimes things happen, but really making sure that we take the time to read this through, is it riddled with a bunch of technical terms that may make it difficult for a family, that maybe that's not one that I'm going to share, or I might modify it in a way and like on my own, make notes on the side for somebody to be able to follow along with it. So looking at it from that standpoint with accuracy and making sure like the readability of the information is good, I think with accessibility, especially with individuals who are deaf and are hard of hearing, not just always providing things in printed form can be helpful. And then even like an aside, thinking about where the printed materials are. So if they're readily available but they're, you know, not in a place that's easily seen, that can be challenging.


Sydney: [00:15:14] So having them in multiple different places around the office could be good. But then also thinking about the way that the media is presented. So printed form tends to be the way that we do things. But we know that like the reading rates for adults are low in this country. We also know too that most people don't actually read. I mean, think about when your doctor gives you something about your health, or even better, when you get medication from the pharmacist. And it's like, here's this pamphlet for you to learn all about it. And you do what? You rip it off and you throw it in the trash. Same thing is happening with most people. So if you can provide something in a video format, and then we know that with videos we always want to make sure like captioning is available. So looking to see if those things are kind of out there as well. And then always, always, always there's something actionable that there's a website or even a statement like, you know, call your pediatric audiologist now or contact your local speech-language pathologist for questions. Here's how you can find one. If you don't have like, give the people something for them to have to do after they've soaked in that information.


Carrie: [00:16:20] And you talked about the different ways of presenting it, like print and like video and different ways like that. Do you feel that actually sitting there with them is helpful too, or that's just probably not always. A way to do it or it's not available. You're not with them?


Sydney: [00:16:44] Yeah.I think sitting with people as they watch it is really beneficial. Well, one, you can assure at least if nothing else, they got the information right, but two, then you're there for whatever questions they may have. I think the internet is a beautiful place. I don't know what I would do without the internet. It provides lots of great resources, but the internet is not a replacement for a professional. So sometimes if we give somebody a resource and we're not there to help guide and scaffold their understanding of what is available, they turn to the internet. And sometimes they may get really good responses and advice, and sometimes they're getting advice and responses that were going, oh no, that's definitely not where we need to be. So kind of handholding. I don't see it as hand-holding. I see it more so as like you're ensuring that people at least have the baseline of what they should.


Carrie: [00:17:45] And. Going off of that. You know, I know all of us use like social media, whether it's, you know, Instagram, Facebook, TikTok, all of that good stuff that is out there. How how can families really discern reliable and accurate health information because they're getting it from these different avenues?


Sydney: [00:18:12] Yes. And I think that's where the tricky part comes in. Right. Because as professionals, to a certain extent, we have a little bit of training of how to evaluate for this information of being good. But if you're a family and you're like, I'm just grasping for anything, you may not have the skills to do that. So the one thing that I look for when I'm looking for any type of support is, is this citing other resources? Right. So one person should not be like the sole idea bank, even when you look at the CDC website, which is very helpful when looking at different information, they are citing research articles or other places for where they got some of the things that they're supporting. So for families, I think always looking to see like are they referencing some other bodies of work in some aspects is going to be good because you know that they're not just relying on themselves, they're using something else. To kind of seeing like across different things. And now this is going to take a little work. Sometimes we like having that one stop shop of I got this and I'm good to go and I'm walking out the door, but especially if you don't know a lot of information about it, I think getting a couple of different things. And pulling from multiple places is going to be beneficial and helpful, because then you're able to do a little bit more of a comparison of what this particular resource says, that this resource says and what this resource says as well.


Carrie: [00:19:41] Yeah, which can kind of be overwhelming for families. As we shared at the beginning, you know, 90% of families, this is the first time that they're going through that. And if they have these different resources that they're looking at, how can families really make that informed decision as far as like, which one should I be? You know, I guess believing or kind of investing so that they're making the best decision for their child.


Sydney: [00:20:16] Yeah. So I think that doing your own research is good. I am a big personal believer in, like, we are our own health advocates. Like we have to have understanding, but that's where professionals come in too. So like, even if you've kind of looked at a couple of different resources and you still have questions, reach out to reach out and get professional support and help. And I know that sometimes that comes with a cost, but there are definitely opportunities out there that are not as expensive. Um, or places I think where you can like basically phone in a question and see if you're able to get a response. I think that that helps alleviate a little bit of the burden on families like your goal is to be informed, but your goal is not to become the doctor. So you may have to do a little bit of your own research, but you don't have to take on fully understanding and comprehending everything on your own.


Carrie: [00:21:10] And kind of on the flip side, to help families along, what can we as communication professionals, speech-language pathologists, audiologists, teachers of the deaf, anybody kind of related in our field? What role can we play in educational programs or initiatives to really address health literacy with families?


Sydney: [00:21:33] Yeah, I think the biggest thing is looking at the readability of text and start curating resources. So I always like to have multiple resources that talk about the same thing, but they might talk about it in a slightly different manner. So depending on who's in front of me, I'm not just constantly saying like, here's here's this information on this, it's no, you're able to modify and adapt for the individual and the needs that are in front of you. And then I think we have to spend time. And I know that time is limited. Like, this sounds lovely. And in a perfect world, we do this, but we do need to have time within our days and our schedules to look for these resources we do not know at all. Like I love audiology. If I could, I would be dual certified, but there's so much that I don't know and it would be an injustice to the people that I serve to try to like, give them all of this information and say, here you go. Like, no, no, maybe I have 1 or 2 pieces of information about audiology, and then I'm putting it back on, like referring to the professional helping to direct them and kind of guide them back. And then we as professionals too, can whenever we see some of these initiatives or things take place, like reach out and figure out how we can support and help, and then also to kind of learning from these other people that have started doing some of this work, how to present information that way. I mean, 90% of the things that have come from the Listening SLP are because I couldn't find it somewhere else. And but these were things that I needed or things that I wanted for people to know or to be able to share. So being able to kind of create your own is also something that you can do too.


Carrie: [00:23:24] Yeah. And kind of looking forward. I know you're you have creative mind and the comment that you just made of like I couldn't find it anywhere else. So I did some of that accurate research myself to put something accessible together that might be actionable for someone else. But how do you envision the future of health literacy as a whole?


Sydney: [00:23:51] Oh, I see health literacy coming into play more and more, and I'm really excited to hear that more grad school programs are doing a little bit more with public health and realizing, like the impact of public health within our field, public health impacts every aspect of an individual's life. Being able to have good understanding, like the decisions that we're asking people to make when it comes to health-related things, are going to impact them or their child for the lifetime. So we can't take these things lightly and just be like, okay, well, you're making a decision like, no, people should be able to make well-informed decisions, and the only way they can do that is by fully understanding and grasping all of the information there. So as we see like the not the invention, but like more prevalence of people using video as a way to communicate and things like that, I think we're definitely going to see more of an increase for all populations, but especially like this population, about what exactly like initial steps look like, what follow up looks like and supports that are there.


Carrie: [00:25:04] You. And hopefully, with all of that, we will have more informed parents who, like you said, that have the direct impact on the outcomes of children who are deaf and hard of hearing because they are the number one advocates and they're always going to be there for them.


Sydney: [00:25:25] Yeah, absolutely.


Carrie: [00:25:28] So Sydney, as we kind of wrap up today, is there anything I didn't ask you that you wished I would have asked you?


Sydney: [00:25:37] I don't think so. Um, no. I was just so happy to be here and kind of chat about health literacy. Like, this is definitely been my first love. Um, long before doing anything like super speech-related. I've always loved health literacy and just have seen it as such an important thing that we as professionals just don't talk about enough. But we are now. And so that, I think, is the the best thing that we can do.


Carrie: [00:26:12] Well, Sydney, if there are listeners out there who would like to get a hold of you, how can they do that? How can they find you?


Sydney: [00:26:26] Uh, so you you can find me at the Listening SLP on all social media platforms, dot the listeningslp.com. Or you can send me an email at hello at the listening slp.com.


Carrie: [00:26:41] Okay, well, I will definitely make sure to put those links in the show notes so that people can directly link and follow you and all of your social media platforms, as well as get a hold of you through email. And Sydney, thank you so much for being a guest today on the EmpowEAR Audiology podcast. It was a great conversation about health literacy and where how we need to be thinking in order to be advocates and in our profession, but also for the families and children that we work with on a daily basis.


Sydney: [00:27:20] Yeah. Thank you so much for having me. Really appreciate it.


Announcer: [00:27:24] Thank you for listening. This has been a production of the 3C Digital Media Network.




Episode 61: empowEAR Audiology - Valli Gideons

Announcer: [00:00:00] Welcome to episode 61 of empowEAR Audiology with Dr. Carrie Spangler.


Carrie: [00:00:14] Welcome to the empowEAR Audiology Podcast, a production of the 3C Digital Media Network. I am your host, Dr. Carrie Spangler, a passionate, deaf and hard of hearing audiologist. Each episode will bring an empowering message surrounding audiology and beyond. Thank you for spending time with me today, and let's get started with today's episode. All right, welcome to the empowEAR Audiology podcast. I am going to read a little bio about a return guest that I have on the podcast today, and I'm really excited about our conversation that we are about to have. I have Valli Gideons with me, and she is an author, speaker, and mother of two teenagers who were born with hearing loss with a degree in journalism she transitioned from everyday stories to sharing her family's hearing loss journey to date. Her work has reached millions of people across multiple platforms with an engaged community. She is passionate about her role as an advocate for children who are deaf and hard of hearing. Valli is also the author of the children's book Now Hear This Harper Soars with Her Magic Ears, which she co-wrote with her daughter. Um. And you can also follow her journey at mybattlecall.com. So, Valli, welcome to the empowEAR Audiology podcast.


Valli: [00:01:47] Thank you for having me back.


Carrie: [00:01:49] Well, I'm excited to have you. And for all of our listeners out there, I actually had the opportunity to interview Valli, and she was a guest for episode 29, and we talked a lot about her, um, social media and her blog called The Battle Call. And since that time, she has become a author of the book Through the Fog Navigating Life's Challenges While Raising Kids with Hearing Loss. So I just wanted to encourage all of our listeners to go back and listen to episode 29, which I will link up in the show notes today, and you can hear a lot more about her story of raising her two children with cochlear implants, and also about her social media reach with my battle call. But again, welcome. Thank you for being a return guest. I was excited that your book was published. I know it was in the works the last time we were together. Um, and I'm still bummed we haven't met in person yet.


Valli: [00:02:55] I am also bummed because I see you in pictures at conferences, and when one I'm always sad I'm not there, I have the biggest FOMO. And then also you're always in other. You're in pictures with other people who I may know virtually but haven't met in person, and I just get very jealous. So someday.


Carrie: [00:03:15] Someday it's going to happen. It's going to.


Valli: [00:03:17] Happen one day.


Carrie: [00:03:18] Going to happen.


Valli: [00:03:18] Yes.


Carrie: [00:03:19] Well, I know that people can go back and listen to episode 29, but just to give everybody a frame of reference for Through the Fog and what we're going to talk about, is there anything you just want to give a background about for your kids or your backstory?


Valli: [00:03:38] When was episode 29? What was the date? I couldn't goodness.


Carrie: [00:03:43] I'd have to go back and look. I want to say, I mean, it was before you had your children's book. You were just releasing it and remember I had just ordered it.


Valli: [00:03:58] Okay, because that was February 2020.


Carrie: [00:04:01] Okay. So I think it was right after that because you talked about having to cancel all of your, like, book. You know, you were going to go on your tour with Harper and then we shut down.


Valli: [00:04:14] Yes. Wow. That seems like yesterday. And it seems like a lifetime. So, yeah, I mean, I'm not going to bore your audience. You're my bio. My gosh, that's embarrassing. It's kind of long, but, yeah, I'm just, uh. Now my kids are. Well, now a junior and senior in high school. Battle and Harpe;  Battle’s the oldest. He's who the blog is named after. And I started writing about kind of what it was like raising two kids with hearing loss and being a military wife and, um, all different aspects of my life, but particularly, you know, focused in on what it was like to raise two kids with hearing loss. So.


Carrie: [00:05:00] Yeah. And so you went from this blog and social media presence to, hey, I'm going to write a book. So how did that what prompted you to go from that blog to a book?


Valli: [00:05:14] It probably depends on what day you asked me if the story changes. Um, because it's a blur. It's a bit of a fog, but I didn't actually have any motivation to write a book, so it's just kind of still baffles me that one came to fruition. That was my story. I thought our next book would be another children's book, this one about B attle, because the first one is about Harper, and we're creatively that one's in the works. But. I think what it how it initially came to be was I was doing a lot of speaking engagements, and I thought it wouldn't it be nice to have something when I am there to, for people to leave with? There was more about my story, not my kids. And so I talked to one of my best friends from college, Vinnie. She writes the opening, the introduction in the book. She had helped edit my children's book, and I asked her if she'd be willing to help me edit some essays that I'd already written together, and just I was going to self publish and it wasn't going to be a big to do. Oh my gosh, I think it must have been getting Vinny involved because what she did, she does nothing.


Valli: [00:06:36] Halfway. She printed out everything that she dug and dug and printed out everything I had written. And she's like, I'm going to send this to you. I want you to print it, and I want you to lay it out on your dining room table. And when I did that first I was overwhelmed. It was like 25,000 plus words. And the themes were just jumping off the pages, which was navigating, navigating through the fog. It was just I didn't purposely have that metaphor. It was just all over the place. And then she's like, I think this is more than just putting some essays together. I think you really should rethink this. And then that's kind of where we started adding, you know, I added more stories, lengthened stories. It if I had been more patient, the book probably would have been fleshed out even more because, you know, you put these kind of deadlines in your head. And so I was trying to really make that deadline. Um, so and at a certain point, you think, okay, I'm done, I need to just stop or it'll never. You hear people or spend 20 years writing their book.


Carrie: [00:07:49] Right.


Valli: [00:07:50] So that's kind of how it evolved.


Carrie: [00:07:53] Yeah. So you were talking about spreading everything out on your dining room table, and then the theme kind of popped out like through the fog. Do you want to expand any more on the title and.


Valli: [00:08:08] Well, I think I realized that in every experience in my life, I had gone through, like most people, like, periods that felt like you're kind of in a fog. You don't have your footing, you can't see clearly. And then after the fog comes the light, the rainbow, after the storm. And like I realized that pattern was just kind of throughout every experience I had had. And it I mean, it was really profound. During the initial hearing loss, when Battle was identified with hearing loss at birth, it literally felt like we were living in a fog. I mean, like I can remember like yesterday and he's 18. Like I can remember just feeling a fog and then just realizing how we got we got through that. And then there's another fog and then we get through that and it's just a constant all. And so the theme for me is just always keep looking for the light like fog was going to come and go. It'll be dense sometimes it'll be hazy sometimes, but there is always light. You just have to believe. Yeah. I mean it's so corny, but it actually, no.


Carrie: [00:09:22] It's not corny.


Valli: [00:09:23] It was an actual pattern in my life that I didn't ever really put together.


Carrie: [00:09:30] I was thinking about you. I was just sharing that. We drove down to Charlotte from Ohio a couple of days ago, and I would say 80% of the trip is going through West Virginia and Virginia, and you're driving through the mountains. And it was I knew we had this podcast coming up about through the fog. And I'm like, this is so true, because that's exactly what I was going through, through the mountains. I mean, it's just a good visual. And you're driving through the mountains and it's clear and then like one second later you can't see in front of your headlights because there's such dense fog. And then you get through and there's little patches of fog and then there's sunlight. So it is a very good visual for your book. And I was thinking about you as I was driving.


Valli: [00:10:15] I love that, you know, I just hadn't thought of this either. But we live. I write about it. I think in the opening chapter about we have settled in our favorite little beach town in Southern California that's known for what they call June Gloom. It's a coastal fog, and we kind of live up a canyon, but we can see the ocean like I'm looking at it right now, but the fog rolls in. It's just part of what living here is like. And then almost always, you can it's guaranteed that eventually it's going to part and you're going to see the sun. And I've never stopped appreciating like that. Cool coastal dewiness reminds you where you live. You know, you can smell it, you can feel it, but you can't see the ocean. And then it clears and it. And I'm grateful for it every time. Like my kids are annoyed by I'm. It's my favorite sun. It's my favorite sunshine day. Like, because the sky gets blue. The air is crisp. It's like it's so perfect and I live. This is where we live. We live in a fog of coastal fog.


Valli: [00:11:27] Yeah.


Carrie: [00:11:27] So again, a great analogy for the title of your book. So and so when you had all this on your, on your table with all of these papers and different stories and essays that you have written, can you share how you really thought about your chapters and how they were set up that collection?


Valli: [00:11:53] My process was kind of an interesting one. I think initially it would seem that it would have made sense to start in chronological order, but then somewhere along the way, I just left that whole idea and kept adding stories from childhood. Or as when I'm a newlywed or.


Valli: [00:12:20] Um.


Valli: [00:12:22] Because what that really and one of my editors was not such a fan of that. She's like, I think it would be, you know, here we are in chapter 15, and I'm talking about my marathon before I have kids, and I got hypothermia and went down. And it's a whole kind of signature kind of part in my running journey. She's like, I think if that came before, it would make more sense about some of the feelings you're having once you have kids. And I'm like, but for me, what makes sense is. I didn't learn the lessons in life linearly. And so I didn't want the story to read. I didn't want to say. For you to be reading it and go, oh yeah, that makes sense. Oh, it makes sense that you married someone in the military because your were military child, it's like, um. Because I think even talked about my childhood. Being in a military family comes somewhere in the middle, middle of the book, where I start with meeting my husband in the beginning of the book. So I feel like it was just organic how that kind of came together. It did annoy a couple people who wanted those, you know, to be more of an obvious, I shouldn't say, annoyed. But, you know, they wanted the metaphors to be more obvious. And I was like, but it hasn't been obvious.


Carrie: [00:13:53] And probably some of those stories, you didn't really know what the message was until you were later on and reflecting on it. You didn't know what that was in the moment. So it makes sense that when it kind of was clear to you to put it at that point in your life or the book.


Valli: [00:14:12] Yeah. And I would I would be curious. My daughter just reread the book this summer.


Valli: [00:14:18] Oh, did she picture.


Valli: [00:14:19] Of her sitting in our backyard in our pomp? What are the pompous chairs?


Valli: [00:14:24] Oh, yeah.


Valli: [00:14:25] A papasan chair. It's like those big cushion chairs, outdoor chairs. And she's sitting in it reading. And first she was like, mom, that's a really good book.


Valli: [00:14:39] Which I thought was cute.


Valli: [00:14:40] She complimented me, but she said, yeah, I didn't even realize like some of the the themes till I reread it the second time. Like it made more sense and I thought, oh, that's kind of cool. She knows me. And she still picked up on something different.


Carrie: [00:14:56] And that was one of my questions later on too, is did your kids read the book and what what was their reaction reading about themselves from your point of view.


Valli: [00:15:10] Yeah, so battle hasn't read it. I think he might have read his one chapter. That's like kind of a love letter to him. I left it on his bed with a little note and said, I know you're not going to read the whole book, but, you know, I think it was on his birthday. And I was like, but this is for you. Like, I don't know if he read it, but Harper was my first reader. She read it when I got my a proof copy, and she read it when it first came out, and then she just reread it. So like a year later. And her reaction, she's like, it's really weird to read because I know you, but you're you're you're a mom. But then you were like a you were like a person. You were a child.


Valli: [00:15:52] You were.


Valli: [00:15:53] A newlywed. Like I you know how kids don't really see them, their parents that way. And she's like, and you're talking about me. And it's weird because I was there, but I don't remember that. And so it was I think it just a lot of light bulbs went off for her.


Valli: [00:16:11] That's so neat.


Carrie: [00:16:12] Well, hopefully that's supportive. Yeah. Well Battle read it like when you know he's 35.


Valli: [00:16:20] Yeah.


Valli: [00:16:21] And if he doesn't want to read it I think he's not not reading it for any reason other than just. Hasn't made the time to do it, so.


Valli: [00:16:31] Yeah, but.


Valli: [00:16:32] She's more, you know, she's my writer, so I think. It was more interesting for her because she's. And she probably likes that she's, you know, the star of a book.


Carrie: [00:16:43] Well, throughout the book, you also write a lot about what you were so vulnerable and open, sharing different stages of, you know, grief and shock and just kind of coming to terms with things. What was. How was it to write about all of that, knowing that anybody can buy this book and read it?


Valli: [00:17:09] I think the only way you can publish a book that's so personal is you can't think about that. You cannot be self-conscious. Like sometimes. Now I'll think, oh my gosh, what if I decide I actually don't want to share that? I can't. That's out of the, you know, the genie's out of the bottle, but I just didn't think of it that way. I just was telling my story. And I'm not telling anyone else's story. I think that's the key is to stay true, to like my siblings see certain things differently than I do. My mom sees things differently. Sure, my husband would. My kids. I'm not very careful not to tell their story because I didn't.


Carrie: [00:17:58] Ask you about your husband. Did he read the book?


Valli: [00:18:01] I don't think he's read it completely either. I think his fear. Is it'll make him feel bad for. Are guilty for so much of the time not being there because of his military career. And I think he already feels guilty about that. And I think he fears that this will make him feel certain way. And I'm like, well, don't flatter yourself. It's not. It's not that much about you.


Valli: [00:18:35] It's about my experience.


Valli: [00:18:36] But that is a. That was a big part of what made it so hard. I was often doing it alone. Yeah, it was hard.


Carrie: [00:18:44] Yeah, well, I mean, putting those words out for other people who are going through the fog in their own journey, I'm sure is helpful to know that, hey, there's other people that have gone through the struggles but have seen the the light too.


Valli: [00:19:03] Yeah.


Valli: [00:19:05] I, I just love storytelling, I always have, I love reading and hearing other people's stories. And so probably the most meaningful thing that's happened besides having this for my kids, for them someday, is having people who connect in different parts resonate parts you would never expect, like the story I shared about being on my yoga mat and having a complete breakdown. I've had quite a few people say I have had that moment over something different, but literally come to Jesus moment on a yoga mat. And runners of the parts of my marathon training have resonated with runners. A lot of people about grief, of losing people because my dad and he. It's not a I'm not giving anything away, but he dies when he's 50 and that really shapes me. And people who have lost loved ones particularly young, that really resonates. And I love that because it just connects us.


Carrie: [00:20:18] Yeah, well I had I'm going to ask you if you have a favorite chapter, but I picked out a couple of points that kind of resonate, resonated and I thought would resonate with listeners too. So do you want to share your favorite chapter, or do you want to hear some of the things that I picked out?


Valli: [00:20:37] Oh, really excited and curious to hear what you have to say, and I would. I have some chapters. Like every once in a while I'll skim through it when somebody refers back to something because it's almost like it's a big blur. You would think I would know where every single word was, but like someone will say, I loved this part and I have to go digging for it, and sometimes I'll skim and. And there are still parts that make me cry. And I would say one of the most. Poignant moments.


Valli: [00:21:13] Um.


Valli: [00:21:14] There's a lot, but. I love the story I shared about my dad in the van, my mom backing into his car. With her custom van. And then I also love the description I use sharing me and my son snorkeling together and seeing that sea turtle and him putting his hand on my shoulder and giving me like a thumbs up that you've got this mom, because that visual is still crystal clear in my head. And now I have it in like an essay. So, you know, when I'm, you know, God willing, 9500 years old, that memory will still be there. But they're like your kids. They're all your favorites.


Carrie: [00:22:04] Okay, well, I have a couple of things that I thought I would ask, so. And I and I wrote something down. So I'm going to read a couple of things because like you said, you probably need to jog your memory. Right. So in chapter 16 it was titled I Am here. And you talk about throwing up the white flag and dragging yourself into a therapy room. And I think as women, as mothers, as caretakers, we sometimes think we need to carry all of that weight and be strong at all times. Can you share how you came to the realization that we, whoever is listening, also need to throw up that white flag in certain situations?


Valli: [00:22:48] I hope I have friends that write about it. They write about therapy. They write about depression, mental health. Like a lot of my online circle of authors and friends write a lot about it. And I think the more we normalize. These discussions that motherhood. Parenting is hard. A military. Being a military spouse is hard, like losing a loved one is hard. Having a child identified with something out of the ordinary that requires extra medical is hard and just being allowed and safe to say. It's hard. It's both. I think I do write about it can be both. It can be hard and amazing and it doesn't make you feel. It shouldn't make you. Anyone think you're a bad mother. You're complaining. You don't. You're not grateful. Um, I think therapy. I'm a huge fan of therapy. I am a huge fan for my kids, for my marriage, for myself. Like I think it's so even when things are good. To just reflect and make sense of things. I think it's just I think it's really healthy. So I went a long time in life thinking I just needed to suck it up and put on this. I don't know, perception that I was just so strong. And I had a moment. I'm not going to go into it, but where I was walking my dog when it happened, and I just felt the weight of what I had endured on my shoulders like. This has been hard. This has been really hard.


Valli: [00:24:43] We need to talk about the hard more. So people don't feel as alone because most likely someone else is going to throw their hands up and say, oh my gosh, me too. Like, I had a my first piece I wrote about military being a military spouse and deployment.


Valli: [00:25:30] Went.


Valli: [00:25:31] Viral.


Valli: [00:25:33] And.


Valli: [00:25:33] I could not believe how many people were saying, oh my gosh, me too! I've always wanted to say this, but I was afraid I was going to be judged. People were going to say, well, you knew what you were getting into or you're not, you know, you're not supportive, you're not patriotic, you're not this, you're not that. And it was like almost like ripping the band aid off to say, yeah, I, I'm married to a colonel in the Marine Corps. I've been with him his entire career. I've never stood in the way. I've been a supportive spouse, and it's been hard.


Carrie: [00:26:11] Yeah, well, I think putting that out there so other people realize it's okay to put the white flag up and wave it and be like and have a community of people that you can go to and talk to. And whether it's professional or your so-called friends and family around you is so important too. Yeah.


Valli: [00:26:34] For sure.


Carrie: [00:26:36] And then there's another chapter that you talk about being in the trenches and how one day you woke up and you have teenagers. So and that chapter, you reflect on decisions and emotion that you had and have as a hearing parent raising two deaf kids. So statistically speaking, that's probably like 90 to 90% of families. What can you say to parents or professionals listening today of like being in the trenches at the moment? And then all of a sudden you have they they grow up, but reflectively as a hearing parent, do you have any anything that you want to say?


Valli: [00:27:18] Oh, geez. Well, first, you know, it's very annoying when you have two toddlers, but when people say go so fast. But it's true. The day, the days are long and the years are fast. Is that the saying? But. Particularly people who are in a really hard maybe phase or season. You know, I can think back to like the pulling the devices off, if that's the route that, you know, if you're dealing with hearing aids or cochlear implants and. You just think it's never going to end and it totally ends. It's like phase. And I think that's why another theme in addition to The Fog is grace. And it took me a long time to be able to give it to myself. And I think that is what I would tell parents is to just give yourself grace through the process. It's, you know, it's challenging and it's okay to. You're going to make mistakes. You're going to sometimes maybe feel judged. You're going to get the opinions of so many people who want to tell you what you should do, how you should do it. I mean, that's just true in parenting in general, but. And with the internet because my babies you know, it's I write about it that, you know, it's before Facebook, it's before there's no social media groups and people can't comment and tell me, you know, I've made the wrong choice, or I should do this or I should do that. Like sometimes. Maybe parents now need it can be helpful to have that social media and. That connection, but it can also be too noisy. Letting the opinions of a few. Drown out what you think you know you've decided is best for your family.


Carrie: [00:29:22] Yeah, that's good advice. I like that it's it is noisy and so how can you kind of clear some of that fog. Right. That you, you talk about so you know and feel in your heart that you've made the best decision for your family.


Valli: [00:29:38] Yeah. I think also be willing. I feel like luckily we were pretty open to pivoting. And learn as we go. I didn't think I had to know it all. And if we had tried something that didn't work, we were kind of open to trying something different. So don't dig in and be set. There's not one way. And each kid is so different. I mean, I have two kids, same syndrome, and they experience it so differently. It's really they should be studied these two. They really should. I mean, I think siblings would be a really interesting. Thing to look at is just how different their experience is.


Carrie: [00:30:32] Right? Yeah, I know we always say like, especially if you have a boy and a girl like you do, like they live under the same household with the same family members, how can they be so different in different things? But it would be interesting to as far as hearing loss goes, to see if there's anything that stands out that way.


Valli: [00:30:53] Yeah, I think it would be. Um, and then the flip side, they're so different. Yet sometimes, like last weekend, we were at my brother's house and the two of them were in the pool together. It was just the two of them. And they were talking. It was probably for like two hours straight.


Valli: [00:31:12] Um.


Valli: [00:31:13] Floating and talking. And I'm like, they have a connection that is like nobody else in this world has, like, the two of them. It's it's really fun to see.


Carrie: [00:31:25] So just a side question. Did they do they have water devices for the cochleas or were they like just trying to read each other's lips or what were they doing.


Valli: [00:31:37] So in this case, they both had their devices on without the water cases, which, you know, normally I'd be like, you know, we're on, we're on a trip. This is a bad idea. But it was like kind of they kind of controlled the environment of just floating.


Valli: [00:31:51] Yeah.


Valli: [00:31:52] But even when like. So Battle will use his water ear and Harper because she still has residual hearing on one side. She's only single a single. What's it called.


Carrie: [00:32:04] Bimodal or. Yeah.


Valli: [00:32:06] Bimodal.


Carrie: [00:32:07] So yeah.


Valli: [00:32:08] Yeah.


Valli: [00:32:09] So she still has a residual hearing which she shouldn't really be able to make out speech as well as she does. But it's as if she's still wearing her devices. It's strange. They can communicate.


Valli: [00:32:25] Um.


Valli: [00:32:26] Yeah. It's.


Valli: [00:32:27] Yeah, it's.


Carrie: [00:32:28] Well, that was a little side note when you said that. I was like, oh, that's interesting. That connection between between them.


Valli: [00:32:35] But parents piece of advice, if your child is not 18 and doesn't understand actually, you know, impulse control and all this stuff, I would never let them be in a, in the water with their devices on and think they're not going to go under like.


Valli: [00:32:51] Right. Yeah. It's been a lot of.


Valli: [00:32:53] Years in the making and all their cousins know and everything. So like you're not going to jump in and Cannonball and.


Carrie: [00:33:00] Yeah yeah yeah.


Carrie: [00:33:02] And then you have a mini heart attack in the process. Right. Thinking about that. Oh so you did know earlier that the days are long, but the years are short. And since writing and publishing this book, Battle and Harper are a little bit older and entering almost into, like the young adulthood of you, late teens and 20s. Before long, if you could add another chapter to Through the Fog, what would that title be and would do you have any thing that you jumps out to share?


Valli: [00:33:40] Oh, dear.


Valli: [00:33:42] That chapter still being written because now we're in the Battles going into senior year, and he's been been pretty heavily recruited for football. So we're going through this whole process pretty I mean, it's early in. He still has a senior year ahead of him. But it's the preparing to launch. And I know this is going to be filled with lots of stuff.


Carrie: [00:34:09] Yeah.


Carrie: [00:34:10] So that's the title preparing to launch.


Valli: [00:34:12] Right to launch.


Carrie: [00:34:14] Love it.


Valli: [00:34:15] I'm tethering. Just trying to mentally prepare. Um, baby steps I can't imagine. I mean, I still can't imagine.


Carrie: [00:34:26] Yeah, it goes like you said. It goes really fast. I have a daughter who will be a senior this year too. So that lots of decision to be made in the next year.


Valli: [00:34:38] Yeah. It's again, how did we get here? I'm so proud of the kids though. I mean, I'm it is really this stage in life is so fun to see who like they really are. You know, you see who they're becoming. And I love hanging out with them. You know, it's traveling is fun. Like, just hanging out is fun. They're really interesting, cool people. I like the people they are so.


Carrie: [00:35:08] Yeah.


Valli: [00:35:09] Worth the wait.


Carrie: [00:35:10] It's worth the wait. In the moment it's hard. But reflectively you get through and you're always going to be their mom. So you're always going to have some kind of fog that you're going to be looking through.


Valli: [00:35:25] Exactly.


Valli: [00:35:26] That's what my mom says. She's like, you think kids are stressful? Wait till you have grandkids. You know, you worry about them even more. I'm like, oh dear goodness. But that's what for anyone who's in the fog, you know, and you in the young, you know, the younger years.


Valli: [00:35:45] Um, it's.


Valli: [00:35:46] Just like, stay the course. It's gonna pay off everything you invest in your kids. It does. It pays off.


Carrie: [00:35:53] And then you enjoy it differently later. Later on.


Valli: [00:35:58] Yes.


Valli: [00:35:59] That's the goal.


Carrie: [00:36:00] Yeah.


Carrie: [00:36:00] So wrapping up today Valli with today's episode. Do you have any final thoughts that you want to share?


Valli: [00:36:09] Besides, I hope we get to see each other in person.


Valli: [00:36:12] No.


Valli: [00:36:14] I don't know. I hope that people will support the book. It's, you know, it's a labor of love. I don't have a marketing team. It's just me. It's available on Amazon. I love hearing people's feedback. Um, the reviews are very helpful. And then just following along on social media so we can connect. I really read every comment. I respond to as many as I can. My message is like, I love connecting with people and hearing their stories. So, um. I would love to hear from people.


Carrie: [00:36:51] Well, I just want to say thank you again for being a guest on the empowEAR Audiology podcast. And like I said earlier, I will link up the previous episode if people want to go back to that. And as you said, people can get onto your web page, My Battle Call and I can link that up too. And they can find your book on Amazon and order it and have it delivered right to their house, too.


Valli: [00:37:19] Oh, I know.


Valli: [00:37:19] What I was going to say is for organizations, audiologists, class classes, groups, I can also do bulk author copies for a better rate and ship them right to those. I've done it for quite a few. Our audiologist has a stack of them on hand that she gives out to new parents, and so somebody if anyone's interested in that, I'd love to offer that for people. They can contact me through my website. I think my email address is on there or through any of my social media. They can message me, just say they heard about the book. Book bundles.


Carrie: [00:37:57] All right. Well, that's a great way to get the book out there, and probably a great tool for parents to have and read. So again, thank you, Valli, for being a guest. And, um, I can't wait to meet you in person sometime soon.


Valli: [00:38:14] Thanks, Carrie. Take care.


Announcer: [00:38:16] Thank you for listening. This has been a production of the 3C Digital Media Network.




Episode 60: empowEAR Audiology - Drs. Ashton and Riley

Announcer: [00:00:00] Welcome to episode 60 of empowEAR Audiology with Dr. Carrie Spangler.


Carrie: [00:00:14] Welcome to the empowEAR Audiology Podcast, a production of the 3C Digital Media Network. I am your host, Dr. Carrie Spangler, a passionate, deaf and hard of hearing audiologist. Each episode will bring an empowering message surrounding audiology and beyond. Thank you for spending time with me today, and let's get started with today's episode. Welcome everyone. It is Educational Audiology Awareness Week and this is going to be from October 16th through the 20th and it's 2023. And it is an honor to be able to coordinate with the Educational Audiology Association leadership to spread awareness. The goal of the Educational Audiology Awareness Week is to foster public awareness and knowledge of educational audiology services, including the benefits that these essential services provide children, their caregivers and other professionals. And the mission is to educate our stakeholders by enhancing interprofessional perception of educational audiology and strengthening community knowledge through promotion, outreach and advocacy efforts. And today on the EmpowEAR Audiology Podcast, I have leadership from the Educational Audiology Association. Joining me today, I have Dr. Tori Ashton, who is the president elect of EAA, and Dr. Kathi Riley, who is the vice president of Advocacy. And I'm just going to share a little bit about both of them, and I'm going to welcome them onto the podcast.


Carrie: [00:01:57] So we have Tori, who will be starting her ninth year as an educational audiologist with a cooperative educational service agency number 4 in Wisconsin. She provides services to 12 school districts within a 60 mile radius. Tori started as one of the Wisconsin state reps for EAA and then became the VP of Membership and Public Relations for three years, and she is currently the president elect for EAA. And I also have Kathi with me, who was an educational audiologist for 34 years in Delaware, where she provided services to students at the Delaware School for the Deaf and provided outreach and consult services across this tiny state through Delaware statewide program for the deaf, hard of hearing, and deaf blind. She now teaches educational audiology and oil rehab at the university level. Kathi has been an EAA state rep for Delaware for many years and she joined the advocacy committee a number of years ago and accepted the role as VP for Advocacy two years ago. So Kathi and Tori, welcome to the podcast and I'm so excited to collaborate for Audiology Educational Audiology Awareness Week.


Tori: [00:03:19] Hello.


Kathi: [00:03:21] Thank you.


Carrie: [00:03:22] Thanks for being here. What an exciting week as we kick off this week and just to kind of get the conversation started, I thought I would ask Tori or I mean, Kathi, how did the idea of Educational Audiology Awareness Week come about?


Kathi: [00:03:42] Well, it actually happened very organically. We had a member who on our community page, our listserv posted a request for ideas and templates for creating a PowerPoint. She was asked to do a professional development activity for her school district and she was looking for some ideas. That then led to several responses and one member kind of sparked this idea that we could create a national EAA day or a week to promote our profession. So the idea was approved by the board, and then a subcommittee was set up for this project and it was placed under the advocacy umbrella.


Carrie: [00:04:29] All right. And that's how you've been really involved in this. And Tori for listeners who might not know what the Educational Audiology Association is, can you share a little bit about this great group?


Tori: [00:04:43] Yeah. So we are an international organization that consists of audiology or audiologists as well as related hearing professionals. So that could be speech language pathologists, our teachers of the deaf and hard of hearing. We provide a full spectrum of hearing services to children, primarily those in educational settings.


Carrie: [00:05:05] Okay. And so when we have an educational audiology week and we're really focusing on that, how is that different than maybe a pediatric audiologist or a clinical audiologist? I feel like there's so many different roles that audiologists can play, but what is kind of that difference with education?


Tori: [00:05:26] Sure. So the difference mainly is or I feel is the location that we work in. So for educational, obviously we're primarily in the schools. Um. You know, we do a lot of similar things to clinical or pediatric, but there's also things that we do that aren't done at the clinic. So we might assess how a student is hearing in a classroom, um, provide accommodations and modifications for them so that they're successful in those classroom settings. Um, we also help schools with hearing screenings and promoting good listening environments with classrooms. Um, and then just making sure our students have the full access to their education. Where clinical is more in the clinic testing, hearing, fitting the hearing aids. There is um, collaboration between the two, but also a lot of cross of what we do. Kathi, i f you have anything you want to add to that?


Kathi: [00:06:29] Sure. You know, I think one of the issues is that programs, most of them do not have strong educator national background provided in terms of educational audiology. So the learning curve is very steep from being a clinical audiologist to being an educational audiologist. Educational audiology requires you not only to know all of your audiology, but also to understand the entire education system and how it works. We all know both regular and special ed law. We focus on classroom acoustics and how the environment impacts access to instruction. We coach teachers on effective teaching strategies. We manage and fit their hearing assistive technologies across the school day, which might look different in different environments. We take data on the effectiveness of those and we make recommendations for changes to their IEP or 504. We sit in on those meetings and we are an advocate for the student.


Carrie: [00:07:41] And does a student legally need to have an educational audiologist on their team, or is this just something that might be nice to add?


Tori: [00:07:56] I mean, legally it is in IDEA that they have access to educational audiologists. Um, each state does have different criteria that to for a child to receive an IEP or to qualify for a 504, you do have to go through the steps and show the evidence that they do need those added supports. Um, but legally, yes, they can all have access to it if they qualify for it.


Kathi: [00:08:24] Right. Right. That makes.


Carrie: [00:08:26] Sense. Go ahead, Kathi.


Kathi: [00:08:27] We are also working on strengthening the regulations around children who have 504s and their access to educational audiology. Educational audiology is by far the least utilized service that appears in IDEA. And there's a misconception that it is only a medically based service rather than an educational service. So we are working hard as an organization to change that perception and part of our EAA awareness week is to get the word out about who we are and what we do.


Carrie: [00:09:05] But that makes a lot of sense.  In addition to the advocacy that we do as educational audiologist for students who are deaf and hard of hearing, who have maybe auditory processing, different auditory needs within the classroom, educational audiologist are also concerned about ALL kids who are learning in the classroom. And I know through the advocacy work that EAA has done, you have been working on a couple of different projects that really promote access for any child that is being educated. Do you want to share a little bit about some of those other projects that EAA is working on?


Kathi: [00:09:53] Sure, um, part of our role in the advocacy committee is to create resource documents that provide best practice or best guidance, best practice guidance for educational audiologists in a wide variety of situations and responsibilities that we encounter. And we hope that those members then can use those documents to advocate for specific practices and share that with administrators, teachers, school professionals. So one of the things we've been working a lot on lately is hearing screening importance, and ASHA is actually rewriting their guidelines for the practice portal. So we've been involved in that. And oversight of the hearing screening program is one of the responsibilities that is written into IDEA for audiology. So we've been working a lot on that arena, especially on a document that explains the legal rights of hearing screening for children with significant disabilities who are often overlooked or marked as could not test. We also have another subcommittee that's working on classroom acoustics. So we have a committee that has not only audiologists but researchers and an architect and an acoustical engineer. And we are working hard to update classroom acoustic regulations across the US. So part of that work we created a one page document that explains the components of acoustics and how it decreases auditory access for deaf and hard of hearing children, as well as other children with special learning needs, such as kids with auditory processing disorders, children who are English language learners, children who have attention issues, and a whole host of other kids. So we're really proud of that and we hope that educational audiologists will share that with their school teams.


Carrie: [00:12:00] That mean educational audiologists really wear quite a few hats when you think about it in the school and educational setting from the advocacy piece to actually working directly with students and teachers and teams and parents and everyone that is involved. So it's exciting to be in the schools and be an educational audiologist and this week is so amazing because we get to really promote everything that we are doing. And one of the things that I thought we could talk about next would be what are some of these activities that we have planned for Educational Audiology Week? Does somebody want to just share some of the excitement that's going to be happening this week?


Tori: [00:12:52] Yeah, I can touch on. So for like social media, we are encouraging, you know, all educational audiologists to share on their social media throughout the week. Um, you know, whether it's sharing those advocacy documents that we have, um, different graphics that might be posted up by EAA if they reshare them and just kind of getting the word out that way. Along with that, We do have two primary hashtags that people can use when they're making their posts. We have hashtags for #EdAuDweek and then at #EdAuDadvocacy.


Kathi: [00:13:31] Right? The other things that we're working on is a Zoom background that educational audiologist will be able to download. And we actually have come up with three of them. One is for Educational Audiology Week, and then the other two are simply Educational Audiology Association and those are going to be approved by the board hopefully next week and then they'll be posted on our. You'll be able to, to find them by using the QR code that we have created. So the educational audiology QR code right now that page is blank, but we are working on getting everything uploaded into that. Unfortunately, Facebook has really restricted who can have a ribbon. So you know that frame for Facebook, you have to be an approved and recognized organization. So that won't be able to happen this year, but we hope to have it in the upcoming years because we do expect this to be an annual event in the third week of October.


Carrie: [00:14:48] Okay. So that was another question. Is this going to be an annual event? And Kathi, you just said that it will be. So that is that is exciting, too. For the activities. Do you guys have different topics that you're going to kind of be sharing out on social media every day that really highlight educational audiologist or educational audiology week or that a surprise for all of us to see this week?


Kathi: [00:15:17] We actually are targeting different groups every day. So our infographics will be hopefully valuable to a variety of stakeholders. So school administrators, parents, clinical audiologists. I actually forget what the other two are. But we have a different we have a different focus for every single day. And we have different team members from this subcommittee who are putting together the resources for that.


Carrie: [00:15:50] Well, what a great way to share out and for educational audiologists to have access to important resources to share with their school teams and families and whoever they might might might need to raise that awareness about for educational audiology during that week. Is there anything else that you guys can think of that you want to share as we kick off Educational Audiology Awareness Week?


Tori: [00:16:18] I think we're all just very excited about it. This is something new and a great way for us to obviously bring what educational audiology is more out there to everyone, you know, whether it's our schools, our families, just explaining what we do and then how we can support schools and our students.


Carrie: [00:16:41] And how would people make sure that they're getting that information if they maybe if they're not a member of EAA, how can they find membership information and how can they make sure they stay in the loo this week as we kick off Educational Audiology Awareness Week?


Tori: [00:17:01] And they can always go to our website which edaud.org. And there's all kinds of information not only about this week and what will be taking place and different links to our um, you know, like our zoom backgrounds like Kathi mentioned and those different. Outreach advocacy documents, but also about our membership and who we are and just more information about us as an organization.


Kathi: [00:17:31] And don't forget social media. So we have a team that works on social media. And so there will be posts on all of our social media sites. So that's a great way to take a quick look at what's there and download it and share it with colleagues.


Carrie: [00:17:51] Yeah, share it, put the hashtag out there for everyone and it would be a great way to promote. So Tori and Kathi, thank you for joining today for the kickoff of the Educational Audiology Awareness Week. And we're just hoping that all of our members and hopefully new members really join us and promoting everything that we have to offer as educational audiologist in the schools. So thank you.


Tori: [00:18:20] Thank you.


Kathi: [00:18:21] Thank you.


Announcer: [00:18:22] Thank you for listening. This has been a production of the 3C Digital Media Network.



Episode 59: empowEAR Audiology - Dr. Erika Gagnon and Erin Thompson

Announcer: [00:00:00] Welcome to episode 59 of emmpowEAR Audiology with Dr. Carrie Spangler.


Carrie: [00:00:14] Welcome to the empowEAR Audiology Podcast, a production of the 3C Digital Media Network. I am your host, Dr. Carrie Spangler, a passionate, deaf and hard of hearing audiologist. Each episode will bring an empowering message surrounding audiology and beyond. Thank you for spending time with me today, and let's get started with today's episode. Today I have two guests from North Carolina with me, and I am going to take a second and read a little bit about their bios. They are an SLP and audiology duo. I have Erin Thompson, who has been working with the Children's Cochlear Implant Center at University of North Carolina since July of 2004. She earned her bachelor's from Appalachian State University and her master's in speech and hearing science from UNC Chapel Hill. She became a listening and spoken language specialist in 2009. Erin conducts listening and spoken language parent participation sessions, speech and language diagnostics for children who are deaf and hard of hearing. A passion has been mentoring students and professionals across North Carolina, the US and abroad. Erin has been a member of the Global Foundation for Children with hearing Loss and has traveled to Vietnam on three occasions and also Mongolia on one occasion to help provide mentoring and training abroad. She has spent time coaching a team of speech language pathologists in Auckland, New Zealand. Erin expanded her interest in 2019 to include the role of Family Care coordinator for the Children's Cochlear Implant Center at UNC. She helps manage, facilitate and coordinate cochlear implant consultation referrals supporting all families through the CI consult process at UNC. I also have Dr. Erika Gannon. She is earned her bachelor's and doctorates in theology from the University of North Carolina at Chapel Hill. She is a pediatric cochlear implant audiologist at the Children's Cochlear Implant Center at UNC. In addition, she is the Audiology Clinic manager and program director of the CDP Grant. Erika's research interests include pediatric cochlear implant, device use and pediatric electric acoustic stimulation. Erika enjoys teaching and mentoring students. She co-teaches the cochlear implant course to UNC's audiology graduate students. So Erin and Erika, welcome to the EmpowEAR Audiology podcast. I'm so excited to have both of you.


Erin: [00:03:03] Thank you so much for having us. This is really great.


Carrie: [00:03:07] Yeah. So I know before the podcast started, we spoke a little bit and I had heard Erin talk at, I believe, the AmErikan Cochlear Implant Alliance Conference as well as the EDHI conference. And then as I reached out to Erin, she also looped in Dr. Gannon and Erika. And we to talk about two important topics today. And I am really excited for our listeners to hear all about their work with full time use of hearing technology and its impact on language development, as well as the importance of co-treatment and strength based coaching to impact device where time and probably many other things with strength based coaching. So I am glad both of you are here and because this is kind of a audiology, professional and related services podcast, I always like to find out from my guests, how did you actually venture into the field of audiology and speech language pathology? So I don't know. Erin Do you want to start with your venturing into speech language pathology?


Erin: [00:04:23] Sure. This is kind of funny because I think it's kind of a throw out to like all the moms out there who encourage their kids or think, Hey, you'd probably be really great at X, Y or Z. And my mom in high school was like, Really I think you'd be great as a speech pathologist? And I took one of those, or she had said that and I had taken one of those personality typing, What should you be when you grow up kind of thing? And speech pathology and audiology were in the top three and I was like, Oh, absolutely not. My mom wants me to do this. No way am I doing this. So I went in. I went to Appalachian, undeclared and undecided. And my roommate at App my freshman year was in the speech pathology program. And so I got to see what she was doing and I was like, you know what? Maybe I do want to take some intro classes. And so I did and loved it and then had the challenge when I graduated from APP. On whether I wanted to go into speech or audiology. I was really torn and then found my my perfect match at UNC as a speech pathologist working with kids with hearing loss. So kind of a perfect fit. So that's a.


Carrie: [00:05:43] Great story about my mom's, right? Yeah. I was just going to say, your mom's always right. Right? Yeah. Um, Erika, how did you venture into audiology?


Erika: [00:05:55] I knew I always wanted to be in health care. I originally thought I wanted to be a nurse and figured out quickly that I don't do needles or blood. And so as I was trying to explore other options that still left me in health care, I had a friend who was in the audiology program and recommended I observe a little bit and I was volunteering at the hospital and got to observe someone like two weeks out from their cochlear implant activation. And I was I was hooked ever since.


Carrie: [00:06:26] Another great story, too. So both of you are at UNC. Do you want to do you want to share a little bit about the Children's Cochlear Implant Center? There you have a lot of great people that are part of your network. So one of you wants to take that lead.


Erika: [00:06:46] Sure. So the Children's Cochlear Implant Center at UNC. We've been seeing children with hearing loss in North Carolina for over 30 years and have performed over 2000 pediatric cochlear implants. We are a part of a multidisciplinary team and we have both pediatric cochlear implant audiologists, speech language pathologists that specialize in listening and spoken language. We also have a pediatric research group in the office as well, and we are a teaching clinic for both audiology and speech language pathology grad students, and we work with a greater interdisciplinary team at UNC, with our pediatric pediatric diagnostic team and our ear, nose and throat physicians.


Carrie: [00:07:30] Yeah, lots of opportunities to see lots of kids and be involved in a lot of research, which kind of is a great segway into the things that both of you are interested in, and that is that language development and how that impacts kids who are deaf and hard of hearing. And I think when you think about the world of pediatric deafness, a lot of the studies talk about the importance of early identification. We have newborn hearing screening, all of those important things. We talk a lot about technology and early interventions as part of language development, but one of the things that is typically not talked about that your group has spent a lot of time on, is that focus on on wear time can you one of you start sharing a little bit about your research and clinical experience in this in this area and why this is really important to consider?


Erika: [00:08:26] Sure. So wear time or getting the objective data from the speech processor regarding device usage for cochlear implants is a lot more recent than it is for hearing aids. We've only had access to this since maybe around 2014 or 2015. And so as this as a clinician, as this information became available, we felt like this was really a game changer because we're like, is this explaining why somebody isn't doing as well as we would want or not making the progress that we'd expected? And so we just we had all of this new information about patients we were seeing, you know, different where time and trends for babies versus teenagers. And it felt like we really had this key piece to something important. And so we really wanted to dive harder into that. And so we've looked at some some wear time information for this youngest group of babies, like birth to three. We have several articles on that. And also have looked a little bit about where time and the single sided deafness population.


Carrie: [00:09:32] So when, as you said, you know, for cochlear implants, this is been about 2014, 2015 that we've been able to have this data logging and hearing aids was a little before that. But again, a lot of great information. Do you as practitioners, whether from speech pathology, audiology? Do you ever ask parents like, Hey, how often is your child wearing the cochlear implant? And then do you ever see kind of a mismatch between what you're pulling up on the computer and what a parent might be reporting?


Erika: [00:10:09] Yes. We always try and ask the question, How's it going? How? How is wear time device use, especially, you know, use of like retention Aids. And unfortunately there is a trend that. Over or over reporting device usage. Parents often say they're wearing it more than the objective data shows. This is a trend in more than just cochlear implants. It's also present in hearing aid literature as well. And I think it's likely just little ones are so dynamic with eating and napping and multiple care providers. I think it's I think it's easy to overestimate the usage.


Carrie: [00:10:47] And that's kind of another way that you started thinking about looking at this was looking at this concept of hearing hours percentage. Can you share or explain what this is and why this might be a better way of looking at things rather than like kind of full time usage?


Erika: [00:11:10] Sure. So full time usage in the literature, it wasn't consistent. We were seeing, you know, 8 hours or 10 hours or clinicians were using phrases like eyes open ears on, which is a wonderful phrase and a and a great goal for parents. But sometimes, you know, that vague term isn't concrete. And then 8 or 10 hours, we were just seeing that, you know.


Erika: [00:11:34] It.


Erika: [00:11:35] Sleep wake time is so different for babies versus teenagers that.


Erika: [00:11:41] You know what is.


Erika: [00:11:41] Actually the best way to talk about wear time. So we noticed trends are like teenagers are wearing their equipment, more toddlers are wearing their equipment a little less. And we started to incorporate the sleep wake into how we define full time use or this hearing hours percentage. This was first published and Lisa Parks age at full time use predicts language outcomes better than age of surgery. In children who use cochlear implants and essentially the takes where time as a percentage of wake time based on the age of the child. So an example is a 15 year old is awake 15.5 hours a day on average. A 12 month old is awake 11 hours a day. If you take eight hours, if we were using, you know, full time use at eight hours for the 12 month old, that's 73% of their waking hours. But for a 15 year old, it's only 52% of their waking hours. So HHP better reflected the age of the patient.


Carrie: [00:12:43] Wow. Just out simple example right there with the difference of the age and the average sleep time really is telling of the you know, what we want to achieve. Is there a. I guess, percentage that as audiologists and speech language pathologist you would like to see for the hearing hours percentage.


Erika: [00:13:09] We would always love it to be 100%, but we are practical. Our research has found 80 to 100% is really the goal.


Carrie: [00:13:19] Okay, that makes sense. So it kind of factors in maybe bath time, shower times, those waking up and just kind of getting started with your day and then kind of going to bed having a couple of hours right there.


Erin: [00:13:33] Yeah. And that's where we really saw the research to show that kids had typical language scores when they hit that 80%. And that's where we were really seeing kind of the magic number kind of all align. 80% equaled some of those those stellar language scores.


Carrie: [00:13:52] Okay. And yeah, I would love to dig a little bit deeper into that as well. One of the other questions I know, Erika, you had mentioned that you there was some different research, too, with single sided deafness. And, you know, we're seeing younger kids get cochlear implants who have maybe typical hearing in one ear and a profound hearing loss in the other ear. Does the hearing hours percentage matter for those kids, too?


Erika: [00:14:25] Yes.


Erika: [00:14:26] So. The information we have for the single sided deafness. Population isn't for language scores on the whole, but we have that linked with single word scores for CNc, and so the higher the hearing hours percentage, the better the CNC outcome. There's also a positive correlation with HP and spatial release of masking scores. So a true measure of binaural hearing. So we are seeing that HP is a factor for those things in that single sided deafness population.


Carrie: [00:15:00] Okay. Do you see that? This is just a sidebar question to more acceptance of the cochlear implant if they increase their wear time to. What have you not looked into that.


Erika: [00:15:14] For.


Erika: [00:15:15] Patients or in.


Erika: [00:15:16] General, just.


Carrie: [00:15:18] Patient? Because I know sometimes they may not always kind of acclimate to the cochlear implant, but do you find that with the increased hearing hours percentage, they may acclimate or be better users of the cochlear implant?


Erika: [00:15:34] What we saw was.


Erika: [00:15:35] That as kids got into their teenage years wear time dropped. And we think that's just a matter of calling attention to something and kind of those really vulnerable teenage years, but started to see an uptick as patients got a little bit older. So I'm hoping once they get past some of those teenage years, we can expand our data and and look a little bit more into that. But honestly, a lot of it was related to age.


Carrie: [00:16:01] Okay. That makes sense too. So I know that article that both of you authored with some of your colleagues titled Age at Full Time Use predicts language outcomes better than age of surgery and children who use cochlear implants. And you kind of touched on this a little bit, but you found that for both receptive and expressive language, age of full time use was found to be a better predictor of outcomes than than the age at the surgery. So in your literature, you also found that it took an average of 17 months for children to establish that use, and only 52% reached that milestone by the age of three. So as you guys are thinking about where you're at in a big cochlear implant center and co treating and certain occasions and thinking about that whole child and the family and everybody else that's involved. Educators, early interventionist. What are some of those factors that might contribute to that statistic? Because I feel like. That is kind of a lower statistic overall.


Erin: [00:17:13] Yeah. So a couple of things there. I'm going to take over for a second and kind of jump in. Um, one of the things is that I want to touch on because I always stress this in our presentations as well whenever we're talking about this. We were finding that full time use is a better predictor of language outcomes at age three than age of surgery. We are just clear, always clarify. We are not questioning or saying that they shouldn't have surgery later, that we still absolutely you know, are proponents and promoting earlier is better. We aren't questioning that. We aren't looking we're not changing that at all. But they do have to wear it after surgery. You can have surgery at any time at six months. Not that we're doing them at six months right now, but eight months, 12 months. But if they aren't wearing it, then it does impact outcomes. Um, but back to the, you know, it takes an average of 17 months to reach full time use and only 52% did that by age three. It's almost, you know, the question of what are the factors that contribute to this.


Erin: [00:18:20] It's almost in reverse of what doesn't impact this. Everything impacts it. Um, some of the first things that we that I think folks notice or think about are any additional diagnoses. Are there other things that are even more of the higher priority for a child's health and well-being is and taking care of of those other health factors. Um sensory needs we find impact where time we of course see differences with different socioeconomic factors, parents schedules, um, kids at home versus in daycare potentially pending what education or what the what the what the the families or the child care providers have been taught about the importance of where time not that they aren't educated, but what have they been taught about where time and how important that is. Um, distance from school, distance from clinics, those kinds of things. Then the access to that education about the importance of, of wear time and then sometimes just the differences in counseling techniques and coaching techniques and, and how have their school providers, clinic providers, private providers, audiologists, um, pediatricians, ENTs explained the importance so many things have have impacted and can impact this these statistics.


Carrie: [00:19:58] Yeah, which is, I think, a great way to kind of get into what your team at UNC has really looked at to try to maybe close some of those gaps and increase the number that reached that milestone by three years of age. And I think our conversation about hearing hours percentages is really an important factor in that too. But one thing that you have shared is that you have talked about the need for strength based coaching, and that's really helping with working with families. Can you share a little bit more about this model too, of co treating with audiology and speech and how this really impacts families as a as a whole?


Erin: [00:20:46] Absolutely. So the the quick, easy definition of co treating is audiologists and speech pathologists working together in an appointment and treating a child and family at the same time. Um, it's something that has kind of been brewing at UNC since 2011 when we actually got to hear Dimitry Dornan and the Hear and Say crew from Australia talk at the AG Bell Conference in Scottsdale, Arizona back in 2011. But then we weren't able to kind of put it into practice at UNC until a few years later. We had our director at the time had to work to find some grant money to help us be able to account for our time because you couldn't bill for coach reading. Um, and so we were able to, to put that in into play in 2015. But in depth it's speech pathologists and audiologists collaborating. We talk ahead of time before an appointment to see what are the needs of that child and family. What are some things that we want to work on together? Um, make a goal. Make a plan. We collect information during the appointments about auditory skills, we use our functional listening index to track audiological audiology skills, audition skills. Um, we are providing caregiver support and that's where our strengths based coaching comes in. And then we are also communicating afterwards. We're talking to local providers, sharing, updating school professionals, educational audiologists, early interventionists, private therapists. So we're all kind of working on the same page. Um. And then that kind of leads into that strength based coaching. Yes.


Carrie: [00:22:44] So share a little bit more about that and how your team's kind of been trained and how that impacts family connections.


Erin: [00:22:53] Um, yeah. So we have all and Erika has done this as well. Think all the audiologists have had some level of training exposure to the formal, um, program, which is through the Center for School Transformation. Um, and it is an Evocative Coaching, strengths based coaching program that we have all been through. Um, and it is looking at things and very asset based, strengths based taking what is important and a strength for a professional, a parent and building off of that. Um, in all very positive ways. Um, it is learner driven. It's what is important to the family and it's based on evocative coaching and positive psychology, adult learning theory, appreciative inquiry and nonviolent communication so that you should do versus how could you what would you want to do? What would that look like moving forward with your family?


Carrie: [00:24:02] So if I would put both of you on the spot here as kind of thinking about all of the topics we've talked about in particular, like maybe you have a family who comes in and says, hey, you know, I'm wearing my child's wearing this device all the time. And as your co treating together, you realize this really isn't what's happening. Would you be able to roleplay maybe a short conversation that you may be having to discover, um, maybe the hearing hours percentage or, um, you know, what are some factors that might be happening that is reducing that  time? Could you use some of those strength based skills to kind of role play for listeners?


Erika: [00:24:53] Sure.


Erin: [00:24:56] All right. I'm going to be the clinician and Erika is going to be our parent or guardian in the clinic. And so I'll take that start of the scenario, Carrie, of, you know, looking at. Okay. All right, Erika, it's good to see you guys today. Pierce is now six months out from getting his implant. You know, you talked about coming in that you're feeling like things are going well and that you're looking at full time. You know, he's wearing it a lot and wearing it all the time. And, you know, we we looked at the data logging and and it looks like it is up from your last appointment. Last time it was around three hours a day of an average and now we're up to four hours. Um, and based on his awake time, um, of about 11 hours a day, that gives us a 36% HHP. And again, that's up from last time. Tell me something that has gone really well over since you were here last time.


Erika: [00:26:05] Yes.


Erika: [00:26:05] So since the last time we were in, we've started using a headband and I have found that that has been helpful. I find that the the easiest time is in the morning. It's a little hard to get it on when we're trying to get breakfast and everybody awake and out the door. But once once it's just he and I in the morning and we have some time to really have one on one interaction. I'm finding that we're we're more successful at that time, especially with the headband.


Erin: [00:26:34] I'm really glad to hear that the headband's been helping. I know that we talked about that last time and you were going to try it out. So I'm really I'm really glad to hear that that has been has been a benefit. Um, and that it sounds like some one on one time together in the morning has is is good as well. So what tell me about a time that's a little more challenging. What is a time of the day that's more challenging but also kind of something that feels important to you where there's a lot of language or just a special time with family? What where is a time like that during the day currently?


Erika: [00:27:12] Yeah, I.


Erika: [00:27:13] Think maybe the hardest, the hardest time of the day, but the time that we could all get the most benefit from is like the dinner prep and then dinner time. It's hard with older sister and then playing and maybe being kind of far away from me in the kitchen when I'm trying to cook and that their interaction together, it's just hard for me to keep it on them during that time. But there's lots of talking and as we're talking about dinner and you know, how is your day? I feel like that that would be a time that we could improve on. That would be important.


Erin: [00:27:45] Dinner, that dinner time after work, school time is so language rich. A lot of times that is at my house as well. So with my guess, he's probably already you're probably trying the headband after dinner right now would be my guess. Okay. Well, that's good. That's good. I'm wondering, what do you think it is about the morning time that's going so well that maybe we could add in and kind of brainstorm a way to add that into that dinner time.


Erika: [00:28:16] Yeah, he's he's playing with sister a lot, and they're in the living room and I'm in the kitchen, which are kind of connected, but, you know, a little bit farther away. I don't know. I'm wondering if while they're playing, if we could kind of try and bring them a little closer to me and have her maybe not put the devices on him, but just maybe help me monitor it more or just her interaction one on one interaction with him. Um.


Erin: [00:28:41] I like it. I like that idea. So that sounds like some one on one attention is what's been helpful and how do we create that around dinner time? And maybe, maybe Emmy, um, who knows, She might be able to put equipment on at three or so. She's four now, isn't she? How old is five? Oh, my gosh. Okay. She's five. Um.


Erika: [00:29:04] But she.


Erika: [00:29:05] Could probably.


Erika: [00:29:06] Play with him. And he loves books, so I'm sure she could sit with him and he loves to be read to. So if she could sit with him and maybe flip through some stories and books, I think he would really enjoy that time. And maybe that would help distract him.


Erin: [00:29:18] Yeah, maybe he wouldn't. Yeah. Leave him. Leave him be. I think that's a great idea. How do you feel about trying that out between now and our next? Um, next time you guys are here?


Erika: [00:29:31] I think that feels reasonable.


Erika: [00:29:32] We've got, like, a basket of books that we could kind of position in a spot that would kind of be close enough to me, but they could still have their their place to play and I definitely think that's something we could implement together.


Erin: [00:29:45] All right. Let's try it out. Let's see. Let's see if taking what we know has been helpful in one part of the one part of the day and see how that kind of can maybe carry over and and maybe Emmy won't be ten by the time you come back.


Carrie: [00:30:04] But that was fabulous role playing Erika and Erin. And and I love it. But I guess just listening and thinking about what you guys did and I want you to jump into I loved Erin, how at first you kind of laid the facts down, right? I mean, in a very good like, you know, easy to understand way. And then right after that you were able to ask or like what, you know, celebrate those small successes. So even though it wasn't where probably you would want to see it, it had increased since the last time. So, you know, celebrating those small, you know, successes all of the time is probably really a critical piece of that strength based coaching. Um, but I love how you always reflected too, on what the parent said. So you would just kind of, you know, letting Erika share and then you would just really rephrasing or reflecting and what she said. So you would. And then from there you would kind of jumped into like, can you tell me some of those challenges? You told me your successes. Tell me your challenges. And, you know, she brought up the dinner time and things like that, but then you went right into, you know, validating, you know, oh, this would be a great time to, you know, try out some more language and maybe help with that.


Carrie: [00:31:27] And then I love what you say, too, that you're like, I'm wondering. So you kind of get that wonder piece in. But for the parent and how you know, how I wonder if you, you know, can you know, and kind of help them wonder, too, in that situation. And then that really led into mom coming up with her own solution. Right? Like her own goal for what that next step was. And then Erin validating again and rephrasing, um, that was helpful, you know, for think, Erika, to kind of process that and then just asking, how do you, you know, how do you feel about this? Do you think this is something that you can do and, you know, kind of how are we going to check in next time? So does that mean feel like that was kind of what you guys were sharing?


Erin: [00:32:19] That was our hope. That was our hope. And that's always kind of our hope. And we know that families really are trying. We don't have a single family that's really literally not ever trying to keep devices on. So we know there's always something to celebrate. There's always a success in there. And pointing that out because we could focus on the hard part and the quote unquote negative, but that's not going to refresh them to keep trying harder. So finding out what is what went well for them, their success, what was great for them might not be what we would have picked out as being a success and what is motivating or an important time of day. I might have all kinds of ideas of what would be a great the most perfect language, rich time of day to focus on. But if that's not the important motivating part for the family of what is important in their home and important to them, then it might not be as motivating for them to go home and try. So we do try to to focus on what is important to the family and it is their goal for their child. This is not my goal. It's what they have they're choosing to pursue. And so I do reflect back on a lot of those things. And we do. We all do so.


Carrie: [00:33:39] And if it's their goal, I'm sure they're more likely to implement it and follow through with it. I mean, that's the hope of it as well. What happens when you have a family that you've been doing co treating with and they aren't moving as quickly as you want? Do you see that more often? Do you bring them in more often? Do you connect with them virtually more often? Like how does that work to kind of keep the, I guess, ball going in the right direction?


Erika: [00:34:11] Yes.


Erin: [00:34:14] I think and again, you know. Erika, please jump in. Um, think I think we do think it always is just very dependent family to family on why or what seems to be the hurdle or hurdles. And then if it's distance or scheduling, then we might not try to get them in more often. It might be more phone calls or touching base or connecting with their local early interventionist or school provider or something like that to or phone calls or emails or. Kind of trying to figure out what the hurdle is and then not creating more of a hurdle, but some sort of bridge. What do you think, Erika?


Erika: [00:35:00] For sure. And if there's.


Erika: [00:35:04] I don't want.


Erika: [00:35:05] To put a bigger burden by having more appointments, but I also would want to be mindful that if we're not meeting the goals that we that we'd hoped, you know, continuing to touch base and maybe having like a shorter duration between appointments if that was feasible. Um, there's also some good feedback from the cochlear implant manufacturers on the apps so you can kind of help point the parents towards that and some goal setting and letting them have some reflection of that at, at home and really just talking through, you know, what are the barriers. We tried this, okay? That didn't work. You know, let's brainstorm again. You know what? What can we continue to brainstorm through and how can we work together?


Carrie: [00:35:50] The great. So one other question kind of before we wrap up. I know that you have said that you implemented this co treat model not just a few years ago. And so have you noticed that by implementing this, you have seen, you know, greater success with just whatever you're trying to measure, whether it's hearing hours, percentage and goal setting and things like that and moving in the right direction.


Erin: [00:36:24] Do we have that data?


Carrie: [00:36:27] Or maybe you just it doesn't really need to be data, but just as clinicians in general, like do you just feel like from that family perspective and working with families over time since implementing this co treat? Do you feel like you're making a lot more progress than if you were just kind of in your own silos of like speech pathology over here and audiology over here?


Erin: [00:36:50] 100%.


Erika: [00:36:51] Absolutely. I feel like the family feels more supported as the audiologist there. They want to hear so they can talk. So I'm the hearing piece, but having the talking piece there is so important. So, yes, I definitely I feel like there's been a lot of success with that.


Erin: [00:37:09] We get a lot of positive feedback from families. We get a lot of positive feedback from the professionals that we talk to that they're local professionals. We are tracking their auditory skills. So we have a lot of children that we see. There's a red dot on the graph every time we see them and we can see things going in the right direction is going in the right direction, even if it's very slow. We do get a lot of. Positives from it.


Carrie: [00:37:41] Yeah, I do. I've always believed that, that the relationship between the speech pathologist and audiologist is so critical and is like what you just said, such a valued input for the families to, to have everybody kind of working together to. But as we kind of wrap up with today's episode, is there anything that you would like to add that I didn't ask you?


Erika: [00:38:11] I think it just.


Erika: [00:38:12] Really takes a village in that communication with the entire care team and the family is is vital, especially with these young ones. There's a lot of dialog with the early interventionists. Other resources, family caregivers. I think just the open communication with everyone is just really important.


Erin: [00:38:33] I definitely agree. And there's no one size fits all approach to where time or retention aids. There are so many different companies out there on Etsy and and different things to help and just, you know, figuring it out on what works best for each individual child and family. And if one doesn't work, that's okay. Try another one. And connecting families, we connect a lot of families to talk to each other because we can talk all day about things that have worked or we've tried or have tried worked for other people, but we haven't, you know, haven't experienced it ourselves. So.


Erika: [00:39:21] No.


Erika: [00:39:21] I've also reframed some of my counseling, at least from the beginning, as someone is starting the cochlear implant process to at least say the wear time on the front end will be a challenge just so it's not a surprise. And so if we easily move past it, then great. But sometimes I think parents are a little surprised by the need for the retention aids and the things like that. So I'm just kind of trying to set up the. The brainstorming.


Erika: [00:39:49] Later.


Carrie: [00:39:51] Yeah, which is probably helpful when you go through the the strength based coaching with the families. You've already kind of planted that seed before they've even started that journey, so they expect you to be asking about it later on.


Erika: [00:40:05] Yeah, and.


Erin: [00:40:06] We talk about it ahead of time, so it's not a surprise when it's a challenge later like.


Carrie: [00:40:14] If our listeners want to get a hold of you or do you guys have any resources for for just the topic that we talked about today, like hearing hours, percentage or anything that you guys use in your toolbox that's out there for others to use?


Erin: [00:40:35] You can definitely reach us via our email addresses. I think we've shared. You have those, please. You know, we are fine with sharing those. We definitely have social media for our clinic, um, and Instagram, Facebook and Instagram for the clinic. Um, Erika has designed some infographics, don't know how where those technically live, but.


Erika: [00:41:02] I'm happy to share infographics with anybody. You can reach out to me via email. Um, is it helpful to go ahead and state my email now?


Erika: [00:41:10] Is that something you want.


Carrie: [00:41:11] To go ahead and do that? And then I can definitely link it in the show notes as well.


Erika: [00:41:16] Sure. My email isErika, Erika dot Gannon g. A g n o n. At Unk Health unk.edu. And I'm happy to share any infographics and resources we have to help with this dialog.


Erin: [00:41:32] And my email address is is the same as Erika's. Except Erin. Erin Dot Thompson. Thompson.



Carrie: [00:41:45] All right.Well, Erika and Erin, I want to thank you both for being wonderful guests and participating in role play and and the EmpowEAR Audiology podcast. That was in wonderful conversation. And I'm sure all of our listeners will be very excited to hear all of the information and hopefully they will reach out if they would like more. So thanks again for being a guest.


Erika: [00:42:09] Thank you so much. Thank you.


Erin: [00:42:10] So much.


Announcer: [00:42:11] This has been a production of the 3C Digital Media Network.



Episode 58: empowEAR Audiology - Dr. Jace Wolfe

Announcer: [00:00:00] Welcome to episode 58 of empowEAR Audiology with Dr. Carrie Spangler.

Carrie: [00:00:14] Welcome to the EmporEARAudiology Podcast, a production of the 3C Digital Media Network. I am your host, Dr. Carrie Spangler, a passionate, deaf and hard of hearing audiologist. Each episode will bring an empowering message surrounding audiology and beyond. Thank you for spending time with me today, and let's get started with today's episode. Hey, welcome to the EmporEAR Audiology podcast. I am really excited today to have a friend and a colleague with me, Dr. Jace Wolfe, and I'm just going to read a little bio about him before he comes on the air and shares a little bit about himself as well. But Dr. Jace Wolfe is the senior vice president of innovation at the Oberkotter Foundation and Hearing First. He is an adjunct professor at Salus University. He previously served as the editor for the American Speech Language and Hearing Association Division 9 Journal and is currently a co editor for plural publishing Core clinical concept series and cochlear implants. He is the author of the textbook entitled Cochlear Implants Audiologic Management and Consideration for Implantable Hearing Devices. And he is the co editor with Carol Flexer, Jane Madell and Erin Schafer. And for the textbook pediatric Audiologist, Audiology, Diagnosis, Technology and Management. The third edition and Pediatric Audiology Casebook. The second edition. He is also a coauthor of the textbook entitled Programing Cochlear Implants The Third Edition. His areas of interest are pediatric amplification and cochlear implantation, personal remote microphone technology and signal processing for children. So Jace, welcome to the empowEAR Audiology podcast. I'm so excited to have you.


Jace: [00:02:17] Thanks, Carrie, so much. I'm excited to be here. As I've told you before, I think the world of you both as an audiologist, even more so as a wonderful person and as an advocate who's passionate about advancing the outcomes of children with hearing loss. So it is an honor to be able to talk with you today and to be a guest on your podcast.


Carrie: [00:02:40] Well, thank you for being here too. I want to say thank you. And I met oh, goodness. It's been probably. I want to say it was like 12 or 13 years ago over in Berlin.


Jace: [00:02:53] Yeah, that's true. We're getting old for sure. I can't remember. I was. Yeah, it could have been 12 or 13 or 20. I'm not for sure, but it's been a long while now.


Carrie: [00:03:01] It has been. So what? Seasoned professionals now, Right.


Jace: [00:03:06] See, I like that a lot. That works a lot better than old.


Carrie: [00:03:09] Yes, exactly. Well, since you are a seasoned professional, I always like to ask audiologist or other professionals who come on the podcast, how did you venture into the field of audiology? Do you have a story behind that?


Jace: [00:03:25] Great question. I knew for certain, even when I was a small child, that I wanted to do something in the health care field. And gosh, in elementary school I can't remember the exact grade, but I started wearing contact lenses and I loved my optometrist. And so for a while, while I thought I'd be an optometrist, but when I started my freshman year at the University of Oklahoma, I took a survey course and every week a different health care professional would come in and talk about their discipline. And one week, a gentleman named Dr. Stephen Peyton came to the class and talked about audiology, and he was just on fire about audiology. He's very, very charismatic person. He's very well-spoken. But you could tell he loved what he did and he talked about what he did and really kind of entertaining and exciting ways. And it got me interested in audiology. And so I went and shadowed him a couple of times. And watching him work, you could see his love and passion for his work, even more so in the clinic than when he was lecturing about it. And his patients loved him. And you could tell the difference that he was making in such a positive way in his patients lives. And so I really have to say that a lot of my interest in audiology, I really attribute that to meeting Dr.


Jace: [00:04:48] Peyton and just observing what he did. And I will say that I probably stayed in the audiology program because he was an instructor at the University of Oklahoma where I attended and got my master's degree in audiology and then eventually my PhD degree. He introduced me to my wife and yeah, I stayed and got a PhD degree because of him as well. So I owe him a ton and you know, I have no regrets. I'm so grateful that I didn't skip class that day that he came and talked about audiology because I love my job. It's been a perfect fit for me. I know I'm biased, but I think audiologists are so important just in really promoting the quality of life of the patients that we serve. And that's true if you're a pediatric audiologist. But as we've seen even most recently with the presentation of the results of the Achieve study with older adults, our work makes such a big difference in the quality of life and the cognitive and neurological health of adult patients with hearing loss as well. So very grateful to be an audiologist, very grateful for Doctor Peyton as well.


Carrie: [00:06:02] Well, that's just a great testament for anybody listening out there. If you're asked to go into a college or a university class and talk about what you do, if you're passionate about it, you may get someone like you who is interested and follows that path.


Jace: [00:06:22] That's true. I hadn't even thought about it from that perspective. But yeah, we are definitely walking advertisements for the field of audiology, so it's probably important to always put our best foot forward.


Carrie: [00:06:34] Right, exactly. So I know recently you've kind of made a little shift in your role as an audiologist and you do have a new role with the Oberkotter Foundation and Hearing First, do you want to share a little bit about what you do and maybe a little bit about hearing first as well?


Jace: [00:06:54] Sure, sure. So you're exactly right. I did, about four months ago, make a big professional career change For the 20 years prior to that, I had worked at Hearts for Hearing, which is a great place. And I still think the world of hearts for hearing. It's a speech and hearing clinic that serves both children and adults in Oklahoma. I love the people I worked with at Hearts for Hearing. It was a great experience. Still, obviously no regrets there, but I had worked there for 20 years and I'd kind of reached a point in time in my life where I thought that a change might suit me well in this position. This opportunity came along with the Oberkotter Foundation. It just really suits my skill set and my passion for where I think I can make my biggest difference for children with hearing loss in particular, which is always been my biggest passion. I've worked with both children and adults, but my my focus for most of my career is really kind of resided more in the pediatric space. So in March of this year, 2023, I accepted a position as the senior Vice President of innovation at the Oberkoter Foundation and the Oberkotter Foundation. It's a private family foundation. It was started by Paul and Louise Oberkotter back in 1985. So almost 40 years ago they had a daughter named Mildred or Mildie Carter, who was born with hearing loss and Mildie through a lot of work, learned to listen and talk. And she became a very successful, independent, very charming adult. But back then, it was really challenging to learn to listen and talk because we didn't have things like cochlear implants and universal newborn hearing screening and and even the type of hearing aid technology that we have today.


Jace: [00:08:49] And so this foundation was really developed to try to really optimize the outcomes of children with hearing loss to help them reach their full potential, to learn to listen and talk and just their overall outcomes that they would achieve in life. The organization has evolved over time as technology has evolved. Starting in 2013, they formed a subsidiary called Hearing First and Hearing First is a fully online digital community that has aimed to provide information for the families of children with hearing loss and then also the professionals who serve those families and those children as well. Up until about a year and a half ago, the primary focus of hearing first was to provide education and information both for families and listening and spoken language specialists or little providers. But more recently, there's also been an increased focus to provide information and education for pediatric audiologists as well. And that's one of two areas where I'm going to play a big role is in leading our efforts to provide best in practice educational experiences for pediatric audiologists. Also to I think they'll be really well received by the community still and educators and early interventionists, maybe in some cases physicians as well. And then eventually I will also lead an effort to support science and innovation, development of technologies and services that will hopefully address some of the challenges that we faced for many years and maybe move the needle or improve outcomes and quality of life for children with hearing loss. More on that later as that develops. But at the current point in time, my focus is really on the learning experiences for pediatric audiologists.


Carrie: [00:10:49] Yeah, and I know hearing first has really been a great resource for a lot of families out there for listening and spoken language professionals and those who work with children who are deaf and hard of hearing. I know I've taken quite a few courses and I've had the opportunity to present as a professional to for the hearing first community and love the learning community and the resources that they have and materials their podcast, their on demand learning. There's so many resources to explore within the hearing first community. But one of the things that I know you mentioned as your new role as innovation would be to really develop the audiology content or offerings that that hearing first is going to have. So can you maybe share a little bit about some of these upcoming learning courses that you have in the works, or is it a secret?


Jace: [00:11:51] Yeah, no, it's not a secret. We've got our calendar for the entire 2024 year finalized now and I am so excited about it. Carrie I think that that you'll be excited about it too, and I hope the pediatric audiology community is excited about it as well. And as we were developing that calendar, we really wanted to come up with subject topic areas that were really relevant and timely. We wanted to identify the areas where audiologists felt like they could benefit the most from from education, from new information. We wanted to identify areas that maybe weren't covered comprehensively in many of the pediatric audiology education programs, and that's no slight to the audiology programs. When you think about audiology and the way technology has expanded goodness, the scope of practice has become so large. And to be able to cover everything that an audiologist might do even in three years of courses and then a fourth year with the externship is really almost impossible to do it at a really in depth level. And so we're trying to identify some of those areas where either because there's not enough time to allocate to that in the programs or maybe technologies just changed so much in the last few years that there's a need to maybe bring everybody up to speed in the latest that's happening in a certain kind of sub topic area within pediatric audiology.


Carrie: [00:13:30] Okay. So I kind of think of that as maybe just in time learning when you're out there in the field and you have, um, whether it's your patients or you're getting your feet wet, you realize what some of those gaps you might have that you didn't get within your audiology program.


Jace: [00:13:51] Yeah, I hope that we meet that need for sure. We want to start out with the bang. And as I talked to a handful of people in the pediatric audiology space over and over again, I heard that genetics was a really big area of interest for for pediatric audiologists for a number of different reasons. I mean, one, maybe because it wasn't a topic that was covered in depth or in detail in their program, but also we're seeing such an increase in the number of children who are getting genetic testing. And as we will talk about in the course, there are new resources available to allow children to get genetic testing where in the past it may have been cost prohibitive to do so because sometimes the testing can be so expensive. But I can even speak from personal experience that when I receive the reports from those companies that do the genetics testing, sometimes those reports make my eyes kind of glaze over in my head spin because they're pretty complex, you know, in the way they describe the test findings. So our goal for this genetics course are really courses. It's really three fold. And one, we want audiologists to be able to review those reports and understand every aspect of the report so that they have a clear understanding of how the genetic testing would would really impact the long term outcome of that child. And we want to do that because we want the audiologist to know how they can best serve that child.


Jace: [00:15:30] Number two, And that would be just understanding how the diagnosis or the etiology might affect the child's outcomes. What type of management strategies might be best help the child to overcome any kind of challenges working with other professionals, interdisciplinary teams to address some other problems that the child might experience relative to any kind of genetic cause of the hearing loss. And then also to be able to inform families in a very family centered and also evidence based way as well, because oftentimes families have a ton of questions about those reports. And we want audiologists to be able to speak intelligently about what those reports mean for just the overall quality of life and outcomes of that child. And then finally, in third, we want audiologists to be equipped to be able to talk with other professionals at a high level about genetics and understand when genetic testing might be helpful and what the results mean as far as the management of that child is concerned. So super excited. In January, we're going to have a course that just talks about the basic fundamental science behind genetics. So it'll be chromosomes and DNA and RNA and transcription and the Molecular inheritance patterns, all the different things that you would need to know to really understand and have a good kind of foundational knowledge of genetics.


Jace: [00:17:04] And so that'll be good for a number of different people. And we're going to offer that course not just to audiologists, but everybody in the pediatric hearing health care community, including physicians and nurses and physicians assistants. Then in February, we'll follow that up with a course that talks about genetics as it relates to childhood hearing loss. So we'll talk about all the different types of recessive and dominant causes of childhood hearing loss. X-linked We'll talk about the different Nomenclatures like DF and A and DF and B and Gjb2 and what all that means. We'll talk about genetic counseling. We'll talk about how to counsel families. We'll talk about genetic therapies that might be on the horizon and what the timeline looks like for that as well. And that'll all cover the first couple of months of the year. And we were able to talk Hela Azaiez, who is one of the foremost researchers in genetics as it relates to hearing loss. She's at the University of Iowa, which has a phenomenal, just wonderful program, genetics program that focuses on childhood hearing loss. And I've heard her present before on the topic. She's a wonderful presenter. She can take really complex information and share it in a way that's easy to understand. So I think the. The pediatric hearing, health care community and beyond will really love these first two courses that we're going to offer.


Carrie: [00:18:36] And how are those courses set up? I know in the past when I've taken courses, they've all been free. You have to be there to attend to get your, you know, professional hours. But how are these how are these set up?


Jace: [00:18:50] Great question. So they're all free of charge. There's there's no cost to take the courses and every course will provide CE credits. And the way we're going to set them up for 2024. And this we have ongoing discussions right now about the length of courses and the type of courses that we would offer. We we used to have 90 minute lectures and for busy clinicians, that's a big time commitment. So we're scaling it down. And each week, like the genetics course in January, will be four weeks long to cover all the basic science behind genetics. And there will be four 60 minute recorded lectures that the audiologist can watch on their own time. And then each week there will be a live session on Monday, and that happens at 8:00 Eastern Time. And that live session will give participants an opportunity to interact with the instructor. And that'll also be 60 minutes long as well. One huge difference for what we're going to do in 2024 compared to the past is that we will make the live sessions available after the fact. So busy clinicians with busy lives they might have a child who has basketball practice on Monday night at eight Eastern, or they might want to go see a show or something like that or watch The Bachelorette on Monday night, you know? And so if they have something, some kind of conflict on Monday night, they'll be able to watch it later and they'll have 30 days after the end of each course. So for the January course, you'll have all the way to the end of February to watch all of those lectures, both the recorded and the live lectures, and you'll be able to get full credit for that.


Carrie: [00:20:41] Oh, that's nice because I know like, yeah, that's been a challenge sometime for me is to in order to get all of the credit, I wasn't able to attend every single, you know, lecture. And then if you miss one, you don't get the credit. I mean, you still can get the information, but you don't get the credit.


Jace: [00:20:58] Yeah, you know, we want to we our primary goal is to to improve the outcomes of children with hearing loss. That's that's the primary mission. And so I think the best way to do that is to make sure that the information is as accessible as it possibly can be and that it's convenient as it possibly can be to access. And so we need to make sure that when clinicians are going to invest time in this, that they can get the full benefit and reward. And part of that is getting CE credits. You know, you only have a finite amount of time and as a busy clinician, you know, at the end of the day, you might just simply be tired or you might not feel well. And, you know, even if you don't have a conflict, it might be difficult to do it at a certain night, but you might find yourself waiting outside of your daughter's volleyball practice with 30 minutes to spare in the parking lot. And you could watch the lecture at that time, you know. So and we're also experimenting going forward, probably not in 2024, but with micro learning, because right now, especially younger generations, they learn in, you know, 140 or 280 character chunks, you know, on Twitter or they watch videos for 15 or 30s on TikTok. And so how can we package the most important information in a really concise way, too, so that, you know, it comes across on your social media feed or an email and you get the highlights that could really make a difference in how you serve children with hearing loss. So more to come on that front, too.


Carrie: [00:22:32] Yeah. So that were all of your innovation comes in into play, right?


Jace: [00:22:38] That's going to be a part of it for sure. Um, and you know a lot of pie in the sky stuff. I mean, with artificial intelligence. Now I've played around with, you know, presentations where you can create a PowerPoint presentation and then you can have a digital avatar that is indistinguishable from a real human, and that digital avatar can give your presentation. And so the sky is the limit on what we can do in the future. I think we might be able to create programs that would be digital avatars of parents and maybe professionals could practice providing, you know, news about, you know, a new diagnosis of a child with hearing loss and new identification. And they could get real time feedback from a digital avatar, and that would give them an opportunity to experience that before they have to do that, live with real people. And again, that's kind of pie in the sky. There's still a lot of development that would be necessary to make something like that happen. But those are the types of things that I think we can do in the future and types of things that we're considering for professional education may be a program that would generate simulated ABR waveforms, and you could mark those and analyze those on the fly because there's obviously so much knowledge and experience required to do that well. So I think it's going to be a lot of fun as we leverage some of this explosion that we're seeing in AI and technology and how we can apply that to the education of audiologists, both in professional settings and at the level as well.


Carrie: [00:24:10] And there's so much to explore at such a fast pace, too.


Jace: [00:24:14] Yeah. Oh, yeah, yeah.


Jace: [00:24:17] Without a doubt. But I'm so excited. I don't know. You know, there's 12 months obviously in the year and so we have a different topic for every month. But yeah, I would love.


Carrie: [00:24:26] To hear about you kind of talked about the first couple of months, but you, you got us through the winter here. Jace What what's coming up in the spring?


Jace: [00:24:39] Well, you tell me to stop when you want me to stop because I could stay here all day and talk about what we're going to do with the learning experiences in 2024. But in March we're going to have a learning experience on autism and the optimal audiology management of children who either have autism or there is a suspicion that the child has autism because so many kids, you know, if they're not speaking and the language doesn't appear to be developing, one of the first steps is to get a hearing test, to rule out hearing loss before they move on and have neurodevelopmental testing to diagnose autism. And so we were fortunate enough to get Jim Bodfish, who is a psychologist and a neuro developmental specialist at Vanderbilt. He's invested his entire career in studying autism, and he's going to give a lecture just kind of on the fundamentals or basics of autism. And then that's going to be followed up by two weeks where Ann Marie Tharp will talk about assessment, audiology, assessment issues with children who have autism. And then in the third week, management of children with autism, special considerations for fitting hearing aids, cochlear implants, that sort of thing. So I think that will be well received because I know as somebody who recently was in the clinic, that that can be really challenging to make sure you provide the best care for for children sometimes who, you know, are kind of averse to that care being provided.


Carrie: [00:26:09] Right? Yeah, We see a lot of that in the schools Having that dual diagnosis or trying to get a dual diagnosis I guess would be another challenge too. So we've got genetics and autism. What else do you have? Do you have a summer summer thing?


Jace: [00:26:26] Yeah, well, we can keep rolling in April. We're going to have a best of in the 2023 pediatric audiology literature. So we're going to have an all star cast. Jay Hall, Marlene Bogado, Renee Gifford and Ryan McCreary. And they're going to review some of the best articles that were published in 2023 and diagnostics and hearing aids and cochlear implants and then in miscellaneous issues. And so that should be a lot of fun because again, oftentimes when you're super busy in the clinic, it's hard to keep up with the literature. And there are so many journals out there, Even if that's all you ever did, it would be impossible to find all the best that's out there. So I think that this will provide something for everyone who would participate in that course, because I'm almost certain that at least some of these articles will be articles with which the participants aren't familiar. After that, in May, one of the things I'm most excited about a gentleman named Anthony Alleman, who's a medical doctor, he started out as a cochlear implant surgeon. He had completed a Neurotology residency and fellowship, but then went back and got or completed a fellowship in radiology as well. And he's a diagnostic radiologist now, and he's going to talk about imaging of the auditory system. And the goal will be the audiologists will be able to look at an MRI scan or a CT scan and identify all the relevant structures of the ear and be able to determine if it looks atypical or if it's typical and what that would mean for the management of the child as well.


Jace: [00:28:01] So I think that will be really exciting because that's something that we typically don't get a lot of in the program and it can kind of be intimidating if those kind of images are are put up in a staffing with other professionals and it just looks like a big black and gray bob on the screen. And it's kind of challenging to know what you're looking at. So I'm hopeful that that will be helpful as well. Um, and then in June, we're going to have a series of classes on optimizing the outcomes of children with exceptional needs. And we're going to have Angela Bonino from Vanderbilt University, who does great work in this area. Children with neurocognitive disorders, visual disorders, motor disorders. And she's going to talk about assessment and management for two weeks. And then Schuman He and Holly Teagle are going to finish up that course talking about cochlear nerve deficiency and how that's diagnosed and ideal management for that. So that'll take us through the first half of the year.


Carrie: [00:29:05] Wow, that's a great lineup. And are all of these going to be I think you mentioned Monday nights for the genetics or are they kind of different depending on the speakers?


Jace: [00:29:16] That's a great question. Most likely we'll have Monday night that will feature new courses for audiologists and then many months we will also have a Thursday night course that will be a repeat of a course that's been offered in the past. So like a repeat on middle ear measurements and otoacoustic emission measurements and a repeat on programing cochlear implants as well. So it's going to be a really full calendar. And I don't want to again, I don't want to bore your listeners, but we're going to have the rest of the way. Balance Assessment Management. Violette Lavender at Cincinnati Children's. I just want to say this because I'm excited about the topics and I don't want any of our great instructors to be left out, but I think that will be a really interesting course. Dr Lavender is an expert in that area and also sees patients clinically at Cincinnati Children's. In August, we're going to have a three week course on auditory Neuropathy spectrum disorder, led byThierry Morlet, who has worked his entire career with Chuck Berlin. And Linda Hood just published a two series article in ear and hearing looking at outcomes of 260 children served between 2005 and 2020. He's a subject matter expert in that area, and I think it'll be great. I know a lot of clinicians have a lot of questions about how to best serve children with auditory neuropathy. September, we're going to have a summary of the latest outcomes of some of the biggest studies in audiology. The LOCHI study out of Australia will cover that the outcomes of children with hearing loss study. Elizabeth Walker at the University of Iowa will cover that research out of Melbourne, where they look at outcomes of children who have been implanted before nine months of age with Shani Dettman and then the child development after cochlear implantation study, which was started by John Niparko many years ago.


Jace: [00:31:21] But they have outcomes now for children who are well into their teenage years. And Andrea Warner-Czyz is going to talk about that. Three more months October single sided deafness with Hillary Snapp at the University of Miami, who's an expert in this area, particularly with bone conduction devices and cross devices excuse me. And then Lisa Park, who is an expert in this area as well, particularly with cochlear implants, November, we're going to have beyond the audiogram Ben Hornsby and Hillary Davis of Vanderbilt. We'll talk about fatigue related to childhood hearing loss. Andrea Warner Czyz will be back to talk about social emotional issues, including self-esteem and quality of life and bullying and how to help children in those areas. And then we will have Irina Castellanos, who worked with David Pisoni for years. She's now at Ohio State University. She's a psychologist and a neuro developmental specialist. And she's going to talk about executive function, theory of mind, working memory and sensory integration as well. And then the very last month, we will have Kelly Baroque and an anesthesiologist from Cincinnati Children's, and they're going to talk about sedated ADR assessment and best practices in that area. So if you can't tell, I'm excited about this, I can't wait for it to start. I'm going to take all the courses myself, and I hope it's really beneficial for professionals and even more so, I hope that this information is beneficial ultimately for the children we serve.


Carrie: [00:32:59] Wow. Yeah, that's an incredible lineup and I know many of those presenters. So you definitely have top people who are presenting their research and their clinical expertise coming up. So I'm excited too. I'm going to have to like carve out my Monday night starting in 2024.


Jace: [00:33:23] Well, thanks so much. You know, in the future, we're going to have to get you on as well to talk about everything everyone needs to know about educational audiology and the latest and greatest in that topic area. So I will definitely be getting back. Can touch with you.


Carrie: [00:33:37] Yeah, well, I would be happy to talk about my passion and purpose as well. So thank you for. For that too. But if people are interested in this lineup, can you just share a little bit more about how they can find the lineup and how they can, you know, sign up for these classes?


Jace: [00:34:00] That's yeah, that's a great question. You can go to hearing first.org and there's a professional learning community there and you register as a professional in the professional learning community. And then if you wish, you'll start getting updates or regular correspondence via email from hearing first. And we we are targeting the fall as the point in time where we'll start really promoting these learning experiences and providing more information. So they'll definitely be more to come in the not so distant future, but between now and 2024, we also have some great courses that professionals can take. Now there's one ongoing right now where Nancy Young from the University of Chicago, where they have maybe the largest pediatric cochlear implant program in the country, is talking about medical management of children with hearing loss. And it's been great as well. So you can go there now and get involved with the courses that we have scheduled between now and the end of the year and then there'll be more to come. Once you're registered, you'll get that information in the future and we're going to have a really big marketing effort to to reach out to the pediatric hearing health care community starting in the fall to make people aware of these offerings and the opportunity to get the latest and greatest information at no cost with credits as well.


Carrie: [00:35:26] That is great because I know getting CEUs sometimes and the cost can be a challenge and to be able to really have a focus on that pediatric audiology population is going to be amazing and a great addition to the hearing First Community, Are you guys still going to be targeting like the deaf educators and speech language pathologists and parents as well?


Jace: [00:35:52] Yes, Yes. Without a doubt, there will still be a very concerted effort to have lots of products and cutting edge information for providers. And then, of course, families. We want to be a lifeline for families who are newly diagnosed or children with hearing loss. And then as they progress through the journey up until adult independence. And so that will definitely still be a core focus in the middle of the wheelhouse for for hearing first. And we will continue programs that have been exceptionally successful, like the Starts Here program, which seeks to educate expectant mothers about the importance of hearing and the hearing screening prior to the child. Even being born as well. And we've been able to touch almost a countless number of expectant mothers with that program over the past two years. You can learn more about the Starts Here program and how you might be able to get involved with that at the hearing first.org website as well.


Carrie: [00:36:53] Oh, good. Well, I'm glad we were able to touch base today. And I know you are new to Oberkotter to the hearing first. Um. And being able to get your skills and use them in a different way. I'm sure it's going to continue to grow over there. Hearing first, and I'd be interested to hear what your next round or your next innovation with science and technology and how that continues to evolve too, in your role.


Jace: [00:37:24] Well, let's do this again next year and I'll be able to tell you more.


Carrie: [00:37:28] Okay, We can definitely do that. So. Well, Jace, I just want to say thank you again for being a guest on the EmpowEAR Audiology podcast. And people can get on the hearing first website and get a hold of you if they have any other questions, and then find out about all of the resources and offerings that will be happening starting in August and leading up through 2024.


Jace: [00:37:53] Well, you're very welcome. And Carrie, thank you so much again for the privilege of being on your podcast and for your friendship. It's been an honor, and I've really enjoyed it.


Carrie: [00:38:02] All right. Well, thank you, listeners, for listening to the EmpowEAR Audiology podcast. If you enjoy this, please take a moment and give a five star review that helps other listeners to find the podcast and share it with others. Thank you and have a great day.


Announcer: [00:38:19] This has been a production of the 3C Digital Media Network.



Episode 57: empowEAR Audiology - Dr. Sarah Sydlowski

Announcer: [00:00:00] Welcome to episode 57 of empowEAR Audiology with Dr. Carrie Spangler.


Carrie: [00:00:14] Welcome to the empowEAR Audiology Podcast, a production of the 3C Digital Media Network. I am your host, Dr. Carrie Spangler, a passionate, deaf and hard of hearing audiologist. Each episode will bring an empowering message surrounding audiology and beyond. Thank you for spending time with me today, and let's get started with today's episode. Today I have the honor to have a special guest today on the Ear Audiology podcast, and I have Dr. Sarah Sydlowski and she is the audiologist audiology director of the Hearing Implant Program, the director of Audiology, Innovation and Strategic Partnerships and Associate Chief Improvement Officer at the Cleveland Clinic in Cleveland, Ohio, where her clinical and research interests focus on implantable hearing devices. Optimization of practice efficiency while maintaining strong outcomes and development of innovative clinical delivery models. She earned. She has earned the Cleveland Clinic Distinguished Educator Certificate and is the adjunct faculty at the University of Akron, where she teaches the Graduate Implantable Technologies Course. Dr. Sydlowski completed her clinical doctorate at the University of Louisville, her externship at Mayo Clinic in Arizona, and her PhD at Gallaudet University. Most recently, she completed her executive MBA at the Weatherhead School of Management at Case Western Reserve University, where she was the recipient of the MBA Leadership Award.


Carrie: [00:01:57] Dr. Sydlowski has been a very active and professional organization serving on the American Academy of Audiology Board of Directors as a member at large and President during the 2021 2022 term, as well as on multiple program committees and subcommittees for the National Conference. As a trustee of the AAA Foundation and as Chair of the Governance Audit and Student Academy of Audiology Advisory Committees. She is the past president of the Ohio Academy of Audiology and has served on a task force for the American Cochlear Implant Alliance related to expanding cochlear implant candidacy and was co-chair of the American Cochlear Implant Alliance Program Committee in 2021. Most recently, her interests have focused on developing interdisciplinary relationships to advance the successful identification and management of individuals with hearing loss through. As co-chair of the newly formed Hearing Health Collaborative, which is a think tank of audiologist, otologist and patient advocates charged with developing a blueprint for changing the landscape of hearing health care. She is also principal investigator of a study focused on integration of tablet based hearing screeners in primary care and geriatric medicine practices. So again, I am really excited to have Dr. Sarah Sydlowski i with me today. Thank you for being a guest on the EmpowEAR Audiology podcast.


Sarah: [00:03:29] Oh my gosh. I was so excited to have the invitation. Thanks for having.


Carrie: [00:03:32] Me. Well, I am really excited to have a conversation with you about a couple of topics that I feel passionately about, and I know you do as well. But whenever I have an audiologist on my podcast, I really like to find out how did you even get into the field of audiology? Because I feel everybody has a different story that led them there.


Sarah: [00:03:55] That's very true. You know, mine was kind of a long and meandering path. I always knew that I wanted to work in health care. I knew that I wanted to help people. I was always really good at writing and I loved communication. I thought I wanted to be a journalism major. For a while. I thought that I would be a writer, um, but I wanted to somehow combine these two loves that I have. And for some reason initially I thought that meant that I should be an orthodontist. I come from a family of dentists, and so I originally thought that's what I would do. So I was pre-dental for most of college. And then I have a grandfather who got a cochlear implant when I was in graduate school, and I don't know that his hearing loss directly impacted me, but I think it must have had some role at least. And somehow I stumbled onto audiology and I came to the conclusion that audiology was a fairly small field and that there was more opportunity to have a bigger impact. And so I decided to be an audiologist. And actually when I first started in graduate school, I almost went back to dental school because in my first semester I thought, I don't know if this is for me. It was initially, you know, audiograms and hearing aids and I just wasn't sure. And my program director at the time told me that there Is so much more to audiology, you need to stick it out and find the thing that inspires you and challenges you. And there are so many things that you can do. You don't have to do any one thing. And that was really true. And for me, cochlear implants was the love that I found in audiology.


Carrie: [00:05:31] Love that story. How just something in your family kind of clicked and got you on another path. And obviously you've made a huge impact in the field of audiology and you continue to do so with your passion and what you love to do. So thank you for all that you've done. I am excited to really dig into a couple of topics today with you one being cochlear implants, which we both share a passion for me personally and you professionally. And then to dig in a little bit more with the Hearing Health Collaborative and the impact that is making nationally and then internationally as well. But just to kind of get started with cochlear implants, and I know most of our audience today probably knows what a cochlear implant is, but can you just kind of give a quick overview of what a cochlear implant is just in case somebody wants to know or have a little background about that?


Sarah: [00:06:34] Sure. So my simple explanation of a cochlear implant is that for hearing aids, we're assuming that the ear is still working the way that it typically does. And if we can just make sounds louder, then they're more accessible and can be passed up to the brain the way that we would expect. But sometimes it's not enough just to make sounds louder. We also need to make them a bit clearer. And so a cochlear implant essentially takes the place of the sensory cells in the inner ear that aren't working the way that they used to. And we directly stimulate the hearing nerve and send the signal up to the brain.


Carrie: [00:07:10] Good. Thank you for having that quick overview. And with cochlear implants, they've been around for quite a few years, really kind of starting out with that FDA approval back in the 1980s and then kind of early 90s for kids. But there's been quite a few changes over the years and technology technique techniques, candidacies and outcomes. So can you kind of maybe give an overview of how this candidacy has changed over the years?


Sarah: [00:07:42] Sure. Absolutely. I think it's so exciting actually, how much cochlear implants have changed in my career. It's one of the reasons I love it is that year to year you have to keep learning and doing things differently because it's constantly evolving. Initially, cochlear implants were a last resort. They were saved for when a hearing aid could not help at all and somebody was really struggling and just couldn't function with the hearing aid even. And today we know that the sooner that we offer a cochlear implant, the sooner someone has access to that technology, the better. So today we don't look at the overall hearing as much as we look at each ear individually to try to make sure that each year is functioning the best it possibly can. We also tend to use words more than sentences, So we realize that when you have context, sure, you can maybe figure out what's being said, but you're using so much cognitive energy that you might be really tired and exhausted by the end of the day. And so it's more realistic to look at individual words where you're not having to draw on those cognitive resources and can hear the individual sounds. And then the last thing I'd say is that we don't have concerns like we used to have about when someone has residual hearing. So even if they have natural hearing, that's maybe within the normal range or a mild hearing loss, particularly in the low pitches, will still offer an implant because we know not only can we preserve it and not necessarily lose it, but it can add to the quality and the overall outcomes that the patient has, especially in situations like groups and background noise or enjoying music.


Carrie: [00:09:28] Yeah. So I feel like, um, you mentioned earlier that early cochlear implants were a last resort and with a lot of the changes in the candidacy and having more residual hearing and kind of measuring different ears, that has changed a lot. But I feel like maybe hearing health care professionals in general who are not working directly with the Cochlear Implant Center, they may not know that there been changes in that. So can you maybe update a little bit about some of those next steps that if somebody was working in a clinic that they may be looking for?


Sarah: [00:10:13] So I'll give you a really simple and easy way to know if you should send someone for a cochlear implant evaluation. And this is what we use at the Cleveland Clinic, and that is if someone has an ear, any one ear, that's understanding less than 60% of words, we'd like to see them. And we did a project probably seven years ago now because we had seen that the candidacy criteria were changing. We knew we were offering implants to many more people, but we weren't seeing more people coming into our practice and we couldn't figure out why. And so we went through a program that we have here at the clinic for our continuous improvement department. We use some structured problem solving to ask why that was happening. And one of the things that we learned is that people felt like they were sending someone for a cochlear implant, not a cochlear implant evaluation. And those are very different. So I would want referring providers, audiologists in the community who don't work with cochlear implants to know that when you tell someone they should consider a cochlear implant, it doesn't mean that they absolutely have to get one.


Sarah: [00:11:25] I know that can feel nerve wracking to make that recommendation often, but I look at it more like a hearing aid benefit appointment, so we're able to measure how much is this individual understanding with their hearing aids? What's the best hearing aids can do for them? And if the answer is it's not as much as what a cochlear implant can do, then we should talk about a cochlear implant. But oftentimes what we learn in that appointment is that there's programing adjustments that could happen for their hearing aid, or maybe they need to be using assistive listening devices. It's really an opportunity just to better understand what are they experiencing right now, what's the best that they can do? And maybe cochlear implants are part of that conversation. So, you know, I just hope that people aren't nervous to send someone. And I think it's important to know you're not recommending the surgery you're recommending. Let's look at all your options and making sure you're doing the best you can.


Carrie: [00:12:22] Yeah. And I'm sure from a patient perspective, I know it's a scary thing to do. And but then in hindsight, like getting that extra information and being able to process it may help you later make a decision for that is better for your hearing health care as well.


Sarah: [00:12:42] Yes, absolutely. Absolutely.


Carrie: [00:12:45] Are there other barriers that you have seen as a cochlear implant audiologist and being at the Cleveland Clinic of whether it's from the audiologist, not referring or patients not coming as far as a cochlear implant? Just even the evaluation goes?


Sarah: [00:13:05] That's a great question. I don't think that we really know all of the reasons yet. I do think that referring providers, whether that's an audiologist or an ENT or even a primary care provider, it's really important that they feel confident and comfortable making that recommendation because I think patients look to you, you know, to provide the best recommendation possible and they trust what you offer. I think it's typical and normal for people to want to dig to the bottom of their toolkit to offer whatever they can. And so we see that happen a lot, that we'll have patients come in who have tried 5 or 6 different sets of hearing aids. And the thing about that that's really interesting is often from patients I hear the comment, why didn't my audiologist tell me about this sooner? And they're frustrated and they've even lost some trust. And so I think that being open and candid about having these conversations early actually helps to build your patients’ confidence in working with you, knowing that you have their best interests at heart. So definitely that's an important piece of it. I also think there are a lot of misconceptions about the surgery itself. I've heard people say it's brain surgery. I've heard people believe you have to stay in the hospital, you know, for a number of days.


Sarah: [00:14:28] This is an outpatient procedure. It's not actually anywhere close to the brain as far as Otology surgeries go. It's fairly straightforward. We see very low complications. There are always risks to surgery, of course, but I think that there are some misconceptions about how invasive the procedure really is or what the recovery is like. Certainly, there's some risk for dizziness, sometimes an increase in tinnitus, sometimes a metallic taste. There's a few other things that patients should be aware of, but for the most part, we see these as pretty low occurrences. So that probably factors in as well. And then I think what you mentioned, which is just a fear of the unknown. Cochlear implants are hard to talk about because you can't let someone try one and see, Oh, is it better? And so it's really a leap of faith and trusting in your providers. When we say we're pretty confident that you're going to do better with this device than you can with the hearing aid, but there's no going back. And so I think that it that can be a hard a hard decision to make and people often have to feel like. There at the end of their rope before they're ready to let go.


Carrie: [00:15:45] Yeah, no, I can relate well to that. I think one of my the best things that helped me was being able to talk to other cochlear implant recipients as well who have gone through the process and they were able to share some of those similar concerns. But then you see that they're they most of the time people say, I wish I would have done this sooner rather than waited. So that kind of been the the answer that I get most of the time.


Sarah: [00:16:13] That's I'm so glad you said that, because that is the most common thing I hear is why didn't I do this sooner? And actually, one of my favorite parts of my job is that when I see patients for cochlear implant evaluation, they're usually thinking there's nothing else I can do. I've tried everything and I feel like I have this little secret, like I have this great answer and I know what your experience is going to be like in six months from now and your life is going to open up. And so it's just such an honor really to be able to provide that for the patients I work with.


Carrie: [00:16:50] Yeah, just getting them to that that appointment so they can have their eyes opened or at least learn more about what their options are and be able to make a decision at some point. What is the, I guess, percentage of individuals who may qualify for a cochlear implant but have not taken that step?


Sarah: [00:17:13] A great question. So I know that the number is low, but I was shocked to read a recent article that was published, I think just in the last year by Ashley Nasiri, who was up at Mayo at the time, and some of her colleagues, and they looked at very current numbers for cochlear implant candidates as well as who could benefit but hadn't proceeded. And they estimated that for those who meet, the more expanded criteria, only 2% of people who could benefit from an implant have one, which means 98% of people who could be doing so much better with their hearing and enjoying life and being able to do things they care about don't have one. So that's why I'm so committed to trying to work hard to spread the message that many, many more people could be candidates and they just need to get to a cochlear implant program.


Carrie: [00:18:10] Wow. To think that 98% have not taken or even explored it yet is quite alarming. I guess.


Sarah: [00:18:20] It's unbelievable. Like how many, you know, medical interventions do we have where 98% of people who could benefit from it don't have it, don't actually know the answer to that question, But I can't imagine it's many. And it just seems amazing that we have such wonderful technology. And then to not use it is such a shame.


Carrie: [00:18:40] Yeah. So we definitely have a lot of work to do on both sides. I know you had just was back in, I think, 2022 September, October of 2022. You had an article that you authored in Audiology today titled Cochlear Implantation The Most Misunderstood and under Recommended Treatment Option in Audiology. And I think we kind of covered that. But do you want to maybe summarize that answer? Because it it definitely the most misunderstood and underutilized.


Sarah: [00:19:18] But I hope that title would catch people's attention. Yeah. So basically what I wrote about are some of the things that we talked about today too, which is the idea that we're looking at individual ears and residual hearing is okay. And there are many people that you probably wouldn't look at and think of them as a cochlear implant candidate. Most of us have in our mind the idea that someone has to have severe to profound hearing in both ears, and then they could be a cochlear implant candidate. But most of my practice anymore, that's actually a pretty small percentage of who we see. I would say the majority of our patients now have asymmetric hearing loss where one ear may very well be outside of the typical range for a cochlear implant. Many of our candidates now have completely normal hearing and at least one ear. And the other thing that I wrote about in the article is that oftentimes, very often, actually, people think of who is a candidate for a cochlear implant based on if they meet FDA labeling or if their insurance would cover it. And the reality is that clinically, we are implanting many individuals who exceed FDA labeling. And there's a difference between candidacy and coverage, and we use that term interchangeably.


Sarah: [00:20:44] And I think it's very dangerous and harmful, actually. So we've made a really big effort at our program to first say, is this individual a candidate? So would they would they benefit from a cochlear implant? Could their hearing be improved by having a cochlear implant, yes or no? And then we'll answer the question, will someone pay for it? Which is a totally separate issue. As you know, cochlear implants are covered by most insurances, but oftentimes their policies are still fairly outdated and they tend to list those older criteria. But oftentimes we're able to go through appeals and we're able to convince them that based on this particular circumstance, the patient would benefit. And so I think being able to deal with those two issues separately is really important because we've seen many patients in the past and from other programs who are told you're not a candidate for a cochlear implant, but really they are a candidate. They could benefit. Either their insurance won't pay for it or the clinician who saw them didn't, or they knew that they didn't meet FDA labeling or Medicare criteria, which is a totally different issue.


Carrie: [00:21:55] Yeah, no, that's good to kind of clarify that difference between candidacy and coverage. And I think you're right, a lot of people get confused. They just say, I'm not a candidate. But in reality, they are. They just may not have been approved or they didn't go through the right channels then.



Sarah: [00:22:14] Right And I think it's important for patients to know the difference because we need we need them to be advocating to if they're telling people, oh, wasn't a candidate, that's very different than I am a candidate. And can you believe my insurance won't cover it? This is ridiculous. And I think that we need, you know, people to have that frustration and be able to share their stories so that we can continue to move the needle.


Carrie: [00:22:40] Yeah. Which I think is a great segue . In that article that you wrote, you presented a case scenario and it is kind of the I don't want to say untraditional, but like the a case scenario that maybe people would not have referred for. So I thought just for our listeners, it might be beneficial if I read your case scenario and then you kind of walk through for our listeners what those next steps might be so that we can kind of dispel some of these myths of not referring along the way for a candidate that they might not have thought would have been worthy of referring, I guess. So your scenario talks about a 61 year old female that has adult onset progressive sensorineural hearing loss attributed to an auto immune disease. Her audiogram, which you can't see right now. But if you just want to picture it as a listener, suggest a moderately severe sensorineural hearing loss from 750 to 8000Hz with poor word recognition ability. She wears hearing aids in both ears, but reports that she is increasingly frustrated and has difficulty in a variety of situations. She's anxious and groups and crowds and is withdrawing from public speaking engagements that have always been a key aspect of her work because she feels uncertain fielding questions from the crowd. So if someone came in to a practice with this kind of setup, what would be the next steps for digging deeper?


Sarah: [00:24:22] Yeah, a great question. So I think an important question that we don't ask and answer often enough in a typical audiology appointment is how much are your hearing aids helping you? So we program the hearing aids. Some audiologist is programmed to first fit and may not do objective testing. There's lots of conversation about how important real ear measures are. And I of course 100% agree with that. But it's important to remember that real ear measures are really just showing us the output of the hearing aid and what the hearing aid should be able to provide as far as audibility. But I believe we need to take it one step further on a regular basis and do aided speech recognition testing with all of our hearing aid recipients. We tend to think of that as part of a cochlear implant evaluation, and it is it's an important part. But don't think that we should be waiting until we think someone's an implant candidate to do that testing. So for this patient in particular, she didn't have, I don't think any thresholds that were worse than 65 DB No.


Carrie: [00:25:31] 75 at 8000 for the right ear. But that was it.


Sarah: [00:25:35] That was it. Yeah. So most people, you know, especially with those good low frequencies up in the mild range at 250 and 500, most people would look at that and say it's a hearing aid patient. And she was. But she was also still struggling with those hearing aids. My recommendation would be that any audiologist, every audiologist, even if you don't work with cochlear implants, should put that patient in the booth and measure their ability to understand spoken words with those hearing aids on programmed and verified. And if the word understanding is worse than 50%. Consider them for a potential cochlear implant.


Carrie: [00:26:21] Yeah. And it looks like for this case, when they put her in the booth, the right ear best aided was 40% for words and the left ear was 36%. But can you expand a little bit more on maybe sentences too? You've touched on it earlier, but she had 72% in one ear, 74% in the other ear in quiet. And that obviously went down in noise. But people might look at the sentences and be like, wow, she's getting she's pretty good.


Carrie: [00:26:52] Yes, that's exactly right.


Sarah: [00:26:53] Most people would look at sentences and, you know, in a in a day to day conversation, especially if she's in quiet and especially if she has lip reading, it might appear that she's doing reasonably well. But what we don't measure well, we don't necessarily even ask about well, is how hard it is for her to do that. And so the listening effort that she's putting in and the cognitive resources she's having to dedicate to getting that 72% is probably pretty significant, especially when you look at the fact that if you do take context away and now you're just hearing individual words, her scores drop almost in half. And so that alone can tell you that, you know, she's relying very heavily on contextual information. So if we look at just that word understanding on its own and it's, you know, 30, 40%, that means that there are many sounds of speech that she's not hearing, that a hearing aid simply can't provide, that a cochlear implant could. And indeed, that's what we saw when we moved her forward to a cochlear implant.


Carrie: [00:28:00] Right.


Carrie: [00:28:01] And then you went even further with her and talked about more of those subjective experiences too. So can you share just a little bit more maybe for audiologists and clinics of different tools that they might want to incorporate to get that information?


Sarah: [00:28:23] Definitely. I think that's probably also a fairly overlooked aspect. Most of us ask informally, you know, how do you feel like you're doing in different situations, But having a more standardized questionnaire that patients can complete, I think gives really great information about what they're experiencing and what they're perceiving in a way that's measurable and something that you can compare, you know, pre and post when you've made some changes. So for our patient, we use well, really for all of our cochlear implant evaluations, we use the hearing handicap inventory for adults or the elderly, depending on the age of the individual, a tinnitus handicap inventory, dizziness, handicap inventory. And then we also usually use the SSQ, the speech Spatial Qualities questionnaire. And the combination of those measures give us a good sense of how the individual is perceiving they're doing in their day to day life. There are a lot of other measures, of course, that can be very helpful. I think it's important to consider, number one, what questions are you trying to answer? And number two, when are you using those questionnaires? Is it before and after an intervention? Is it something else? But for us, you know, we were able to see that her hearing handicap was 100, which is as high as it can go. And so that was very helpful in understanding really the impact the hearing loss was having, even though I would guess that you'd look at that audiogram that you described so well and you'd probably wouldn't think that was a 100 HHI score. So it was important to have that additional information about her experience.


Carrie: [00:30:05] And with all of this information, she. You talked a lot about earlier, those looking at your specific, you know, the ears differently and then that residual hearing and taking all of that together, what was the next step in almost, I guess I'll say, the counseling process of getting her to, um, maybe think about a cochlear implant.


Sarah: [00:30:35] A great question. Oftentimes, if someone makes it to my office, they already are struggling enough that they want to know about any options that are available to them. So remember, there wasn't a whole lot of counseling that really needed to happen. I actually can distinctly remember, she said. I don't care if you want to put reindeer antlers on my head, I will do it because I want to hear better. Wow. So that in and of itself was really impactful. Sometimes I think people come in and they're skeptical, in part because they've already been told in the past, you know, let's get a new hearing aid that will help you. And oftentimes it doesn't help as much as they want it to be able to help. And it's not because their audiologist hasn't done the best job that they could. It's not because it's not good technology. It's just because their hearing has exceeded the capability of acoustic technology. And so it's important that they're able to move forward. So sometimes the counseling is overcoming their past experiences and helping them understand why this time is going to be different. And that goes back to what I mentioned earlier. You know, sometimes when audiologists have tried three or 4 or 5 sets of hearing aids, it actually makes it even harder for patients to move forward to the next step because they've been burned so many times. And so they are more skeptical and they are less trusting. And so I think the patients who get to me sooner who get to have the conversation earlier, it's also easier.


Carrie: [00:32:17] And just to have a kind of wrap up of the case scenario, what was so she went through with the cochlear implant and what happened after that.


Sarah: [00:32:29] So she did great. That's that's a happy ending. But the biggest improvement we saw was, in her word, understanding ability, which is exactly what we expected, that in those situations where context goes away. Her word scores doubled. She was implanted in an ear that had 36% word recognition, and it went up to 84%. And then the great thing is that she still wore a hearing aid on the other side. And so she had the benefit of acoustic hearing there and put together her word understanding was 96%. Take it. A whole lot better than that. Noise, of course, was still difficult, which it is for all of us, especially when you have a hearing loss with the cochlear implant by itself, she was able to understand 46% in noise. But with the addition of the cochlear implant, which she had both cochlear implant and hearing aid together, her understanding was 82%, which before the implant she was only getting 26% in noise. So that was a huge, huge improvement.


Carrie: [00:33:35] And did she do any kind of like aural rehab or any training in order to kind of have that bimodal benefit?


Carrie: [00:33:43] Yes.


Sarah: [00:33:43] I'm so glad you asked that question, because I think when we talk about hearing devices, everybody thinks the magic is in the device. And partly it is, but partly it's in that work that the patient puts in. So we push auditory training really heavily here for everybody. But I have also seen this is just anecdotally the patients who have more residual hearing, especially like a single sided deaf patient who has a normal ear and then a cochlear implant ear. They have to be absolutely committed to doing this practice on a regular basis. So I tell everybody at least an hour a day, at least five days a week for at least the first six months after their cochlear implant and probably periodically forever. The more they do, the better outcomes we see for sure.


Carrie: [00:34:30] Yeah, I just wanted people to be aware that, like, the cochlear implant is not a quick fix and there's definitely some work that needs to be done after that too. But I also think it was telling with the questionnaire to post implant like even one month post implant when you re-administered the hearing handicap inventory.


Carrie: [00:34:53] Yes. Yeah.


Sarah: [00:34:54] Her her HHI score dropped from 100 to 22 in 1 month. I think that's also a misconception is that you're absolutely right. Like there's going to be months of work that goes into getting the most out of the implant that you can, but also within a couple of weeks, most people are doing better than where they started. And we measure everybody's hearing and understanding ability one month after we turn the implant on. And, you know, I won't say universally, but the vast majority of people are already demonstrating benefit just one month later. So many people think it'll be months and months before they have any improvement, which is definitely not the case.


Carrie: [00:35:36] Wow. Well, that was just a great way to highlight, I think, all of the different changes that have happened in candidacy and how hearing health care professionals really need to be thinking differently about their patients so that they can get the best benefit that they need, which I wanted to also talk about the other project that you are involved in too, called the Hearing Health Collaborative, because it really looks at hearing health care in a in a different way. Would you be able to share a little bit about your involvement with that? Because I know you were a part of the brainchild of developing it and really starting and getting this group going.


Sarah: [00:36:22] Sure. No thank you for asking. I'm really proud of this group and very honored to be involved and had the privilege of participating from the early days, which is great. So I co-chair the Hearing Health Collaborative with Dr. Matt Carlson, who's a neurologist at Mayo Clinic. And gosh, I've even lost count of how many members we have now because it's been growing so much. But I would estimate we probably have 40 or 50 people from across the country neurotologists, audiologists, representatives from our professional associations, some epidemiologists, primary care providers, geriatricians. It's a wonderful group of of people. And the purpose of the collaborative is really to get everybody at one table, you know, to try to cut through some of the bureaucracy. That can happen when we're looking at individual organizations or individual programs. We all want the same thing. And we know that there's power in all working together. So that's our intention. We've really become a think tank of people who are trying to move forward. How we manage hearing and hearing care in America. What we did that I'm particularly proud of is that we used structured problem solving approaches from continuous improvement. It's called A3 thinking to really understand the root cause of the problem that we're dealing with. And you mentioned earlier, you know, part of my time I spend now in our continuous improvement program, which is something that came to my career just recently, really in the last few years, but it has been so empowering to see the impact that using this methodology can have and the change that it can drive and the really strong results that we can have.


Sarah: [00:38:15] And so I was excited that the group embraced this methodology. I think one of the challenges that we've had with hearing care is we all make a lot of assumptions about why people aren't using hearing devices or why people aren't seeking our services. But to my knowledge, I don't know that anybody's really sat down and and gone through this structured problem solving to get to the root cause. So that's what we're doing with the collaborative. And through that process we identified three key countermeasures that we are focused on. The first is to identify a vital sign for hearing. We believe that there needs to be a number that people can look to, just like we do for blood pressure, knowing 120 over 80 abnormal or vision 2020, we don't have something comparable for hearing. Secondly, we know that we need to have a staging system for hearing loss. Right now, you know, we really focus on that scale of mild, moderate, moderately severe, etc. Number one, that doesn't have much meaning for patients or for referring providers. And number two, it only encompasses audibility, which is one component of hearing, but it doesn't factor in word recognition ability.


Sarah: [00:39:30] Be like we just talked about, which is so important, or quality of life or the perception the patient has. And so we would like to develop a staging system that really provides more understanding and direction to patients and to to referring providers. And then thirdly, we need to have procedural changes so that there's a better standard of care for getting patients into the system. That probably has a couple of components. One being at a primary care level or even a self screening level. You know, how is screening happening? When is it happening? Why is it happening? Should it be happening more? And then when you've been screened, what's the recommendation to get to an audiologist? And then secondly, once you're in the system, how do you get moved along to the right treatment? So like we've been talking about already today, once you have hearing aids, how do you make it to cochlear implants as an example? Or maybe you've tried over-the-counter hearing aids, but you need to move to prescription hearing aids. So we're looking at each of those steps in the path and really taking a long, thoughtful look. And most importantly, like I said, bringing together as many stakeholders as we can so that we can make the change together.


Carrie: [00:40:47] What a great. Start up a collaborative as well. And if individuals want to participate or get involved, are they able to?


Carrie: [00:40:59]


Sarah: [00:41:00]   Yes, absolutely. So we have a website you can Google Hearing Health collaborative, adult hearing. I think we'll bring it up. And there's information there about the work that we've done, how you can get involved. We're trying to update it as we continue to make progress because that work is is happening. We're also working on a few publications, so hopefully you'll be able to see those in the literature soon.


Carrie: [00:41:24] Great.


Carrie: [00:41:24] And I know part of that work is also kind of been with the awareness of cochlear implants as well. And there's an actual work group kind of looking at that as some of the challenges that we even talked about today and how to dispel some of those challenges.


Carrie: [00:41:44] 


Sarah: [00:41:45]   Yes. Yes.. So I think there's so many people who are contributing to this work, and we need as many people as possible who can because there's so much to be done. So there's everything I just described that's more, you know, at a primary care level, going to the public, you know, really specifically about hearing health. And then there's individuals who are more focused on that cochlear implant awareness, which we also need. And yes, I mean, just a lot a lot of work that's happening for sure.


Carrie: [00:42:18] Yeah, it's just wonderful that you have so many different professionals and individuals involved. And like you said, everybody has a seat at the table and everybody's perspective is so important in getting that mission out there to help the general public.


Sarah: [00:42:34] Yes, 100%. We we haven't done it individually yet, but together I think we can.


Carrie: [00:42:40] Great.


Carrie: [00:42:41] Well, Sarah, is there anything that I didn't ask you today that you think I should have asked you that our listeners should know about whether it's the cochlear implant process for adults particularly, or the Hearing Health Collaborative?


Sarah: [00:42:56] No. Gosh, I think you've done a great job of really covering it so well. And I've enjoyed tremendously being able to talk about something that I care about so much. I really appreciate you also being committed to getting the word out that, you know, just don't wait for cochlear implants. It's not a last resort. And please, you know, for your listeners, I hope everyone will contribute to that message of the fact that hearing is vital to health. It's about so much more than just a device. And I think that that's where, you know, the Hearing Health Collaborative and others are working hard to spread that message. But again, we need everybody individually in every venue that you have to share that message.


Carrie: [00:43:39] Yeah, that's a great way to kind of wrap everything together. Dr. Sydlowsk if people listeners want to get Ahold of you, is there a good way for them to reach out to you?


Sarah: [00:43:51] Sure, absolutely. They can email me. My email is s like Sam y d as in David l o w s like Sam at Charlie. Charlie frank.org.


Carrie: [00:44:05] Okay. And I can put that link in the show notes as well, as well as a link to the Hearing Health collaborative too. So if people want to link on that, they would have a direct access to that. But I just want to thank you for taking the time. I know you from the bio. You have a lot of different projects and interest and passion going on, but I wanted to thank you for being an honored guest today on the empowEAR Audiology podcast and highlighting all of your passion and the work that you're doing for hearing health care and policy change and for cochlear implants in general. So thank you for all of that. And I just want to thank all of the listeners for being a part of the empowEAR Audiology Podcast. Be sure to subscribe wherever you listen to ensure that you don't miss an episode, and I would be grateful if you could leave a five star review which helps others who may not have subscribed yet know about the empowEAR Audiology Podcast and if you need transcripts, they are available on the 3C Digital Media Network webpage. So thanks again for being a guest.


Sarah: [00:45:15] My pleasure. Thanks so much again for the invitation.


Announcer: [00:45:18] Has been a production of the 3C Digital Media Network.



Episode 56: empowEAR Audiology - Dr. Lindsey Tubaugh


Announcer: [00:00:00] Welcome to episode 56 of empowEAR Audiology with Dr. Carrie Spangler.


Carrie: [00:00:14] Welcome to the empowEAR Audiology Podcast, a production of the 3C Digital Media Network. I am your host, Dr. Carrie Spangler, a passionate, deaf and hard of hearing audiologist. Each episode will bring an empowering message surrounding audiology and beyond. Thank you for spending time with me today, and let's get started with today's episode. All right. I am really excited today to have a special guest with me. I have Dr. Lindsey Tubaugh, and I know I said that wrong. Tubaugh Thank you. Um, with me today and she has been a practicing audiologist for over 20 years, working with both adults and children in a wide variety of clinical settings. She has co-founded the Little Heroes Pediatric Hearing clinic, where she specializes in tinnitus and sound sensitivity disorders, including loudness, hyperacusis, Annoyance Hyperacusis, Misophonia and Fear Hyperacusis and Phonophobia, which we're going to talk about today. Her passion is helping patients understand that tinnitus and sound sensitivities, while sometimes debilitating, can be managed with careful testing and treatment, patients can live their best lives. She has become a Rapid Transformational therapist to utilize hypnosis and further assist patients with tinnitus and sound sensitivity struggles. She created the Sound Immunity Program, which is an online coaching program for those struggling with sound sensitivities. So, Lindsey, thank you. Welcome to the EmpowEAR Podcast. Oh, thank.


Lindsey: [00:02:03] You so much for having me. I'm so excited. I love talking about this. So I'm I can't wait to just dig in. Yes.


Carrie: [00:02:12] And that's exactly what we're going to do today. But before we dig into that, every guest that I have that is an audiologist because it's such a unique and fun field. I always like to find out, how did you actually get into audiology? Do you have a story behind it?


Lindsey: [00:02:28] You know, I feel like my story is very similar to others stories in that when I was in college, I was going into special education and then I learned more about speech language pathology. So I switched majors to to speech language pathology. And as an undergrad, you take both audiology courses and speech pathology courses. And I just loved the audiology courses so much more. And so it just kind of morphed. And then, you know, at the end I was like, I'm not I think I would have been happy being a speech pathologist, but audiologist audiology just called to me. So that's how I ended up here and I couldn't be happier.


Carrie: [00:03:08] Well, good. I know. I feel like a lot of people have that pathway too. Yeah. Yes. So can you just share a little bit, too, about your professional background? Because I know that you have co-founded Little Heroes, but where did you I know you started out somewhere before that.


Lindsey: [00:03:27] Yeah. So I started out, um, way back when you used to get a master's degree. That's what. That's me, too. And right after I got my master's degree, I got hired on in Iowa to for private practice. And so I ran two offices in southeast Iowa, mostly for adults. We did get an occasional child here and there, but it really was mostly an adult private practice dispensing clinic. And I worked there in addition to some ENT work PRN, um, here and there for about ten years. I did that before moving to Utah. And I.


Lindsey: [00:04:14] Really want.


Lindsey: [00:04:15] To see. Um, so I really wanted to find something that fit my personality a little bit better. So a job came open in Salt Lake City and for a newborn hearing screening program. That needed to be needed, an audiologist, you know, to do the testing and the follow up. And so I interviewed for that position and I got that position and I worked doing that for about three years before transferring to the children's hospital here in Salt Lake City. And I learned so much about pediatric audiology and met just the most amazing people when I worked at the at the pediatric hospital here. And I really loved it. I, I moved into a management position over at the audiology Department at the hospital. And I was doing that for about three and a half years and then realized that I really missed patients. I really missed missed patient care and a lot of the things that I was interested in, like misophonia, um, weren't things that were very conducive to, to, to a hospital type setting. And so one of my best friends and I decided to open our own practice and specialize in these things we do any the only thing we don't do in our pediatric hearing clinic in Layton, Utah, is vestibular testing. But otherwise we are a full clinic offering all services to pediatrics. We also see adults for our specialties, which is auditory processing disorders for Dr. JJ Wicker and then sound sensitivities and tinnitus for myself.


Carrie: [00:05:59] Oh wow, that sounds like an amazing way to kind of get out of a management position, but then to be able to use like the skills and your passion in a different way.


Lindsey: [00:06:10] Exactly. Exactly. Yeah.


Carrie: [00:06:13] Well, um, someday I would love to come visit you guys. Oh, we'd love to have you. Yes, But anyways, I know I was so excited. Dr. Gail Whitelaw had recommended that I reach out to you because she's like, she has so much knowledge in the area of Misophonia. And so just in the setting that I'm in and educational audiology, I've run into a couple of students that definitely have been diagnosed or kind of have the characteristics of Misophonia. So I thought this would be a great topic for the EmpowerEAR Audiology podcast because we don't talk about it enough and I would love to have our listeners have a little bit more information. So I think the first question is I think people pronounce this in different ways, right? So the correct way.


Lindsey: [00:07:09] Misophonia Okay. So this has this is actually a bigger question than I think most people even realize because some people say misophonia, some people say Misophonia. And to me, I don't really care how they pronounce it or I don't. I say, Misophonia, Um, but you'll hear it both ways and it's kind of like with tinnitus. You'll hear some people say tinnitus and some people say tinnitus. And people have different opinions on that. But the bigger question to me is, is should we be referring to this as misophonia or should we be referring to this as annoyance hyperacusis And this is something that I never even knew was a thing until I went to, um, Iowa to their tinnitus. Every year they have a tinnitus conference and that's where they talk about how some people just get really, really upset by the term misophonia and they really feel that it should be called annoyance hyperacusis So regardless of if you hear the term Misophonia or Misophonia or annoyance Hyperacusis it's the same thing. And I think that that's important. So I try to be careful with my wording with other professionals. Um, most people know it as misophonia That is the most common thing you get on TikTok. They're talking about Misophonia. You get, you know, social media. It's Misophonia you talk to psychologists, it's misophonia. But there are some audiologists for good reason, who believe that because it is a type of hyperacusis and because that is how you code it, that it is, it should fall under that hyperacusis umbrella and should be termed annoyance hyperacusis. So you'll see me utilizing those terms kind of interchangeably. And I'm always sure to tell patients and families that that they might see it in two different ways.


Carrie: [00:09:05] Okay, well, they learned something already, right? As far as terminology. And I thought that was going to be a simple question, but it was obviously yeah, that was that's good to know. So I guess we should define like what is misophonia And I think we and can is it a different definition than Hyperacusis? Then.


Lindsey: [00:09:30] Yeah, well, it definitely is a different it is a it is different than hyperacusis as we know it. So. A lot of audiologists think hyperacusis is the loudness hyperacusis. So really there are four different types of hyperacusis. There's loudness hyperacusis as most audiologists know it by, right? So people who are sensitive to moderately loud sounds or even relatively soft sounds, they're so sensitive to those where other people are less sensitive or have kind of a normal sensitivity that's considered loudness. Hyperacusis So when you're testing LDLs and uncomfortable levels of loudness, that's what we're talking about is the the. Loudness hyperacusis. Then there is pain Hyperacusis. Which is when a sound elicits a physical pain in the ears. Okay, so this is and it's very specific, almost like a this is a horrible imagery, but but like a pencil being stabbed into the ear. And for that that's a medical referral. So when I see the pain hyperacusis, I'm like, okay, I'm that's not my specialty. I'm going to send you off, you know, to ENT because usually they need to take care of that in a different way. And they have found that with pain hyperacusis sound therapy is less effective. So they're coming up, they're, they're still researching it and coming up with effective treatments. Then you have fear hyperacusis, which we typically know it as Phonophobia They're interchangeable and they mean basically the same thing. They're it's just a different way of using the terminology and then annoyance hyperacusis, of course, is Misophonia.


Carrie: [00:11:16] Okay. Oh wow. And so yeah, there's I didn't know there was four types of hyperacusis too. So being kind of, I guess in a different realm of audiology, sometimes you learn different things along the way, But so kind of digging a little deeper into the topic of, of Misophonia two is what is the prevalence of the individuals that have misophonia.


Lindsey: [00:11:45] So there is a huge if you look at the literature, there's a huge range that is is listed anywhere from 5% to 20% to 79% of the population has some type of misophonia. And when you think about that, this is why I think there's such a big range, because you think about sounds that you don't like. And a good example is being bored. So that bothers almost everybody. I've very rarely ran into someone that's like, get like a high off of that sound, you know, it's the sound that everybody's like, Oh, I don't like that sound. It hurts in my body. It makes me feel frustrated. And that's a good example of Misophonia. Now, does how often does that happen, though? It really doesn't happen that often. How much does it affect your life? It doesn't really affect your life that much. And so unless you know you're in the classroom and maybe it does affect you that much. But, you know, I think the the prevalence is pretty close to about 6% of the population, in my opinion. When you're talking about severe misophonia that needs to be treated because similar to tinnitus, when we talk about tinnitus, someone can have tinnitus, but it's not affecting their life in a negative way this is there, Misophonia. You can have misophonia most people have sounds that they don't like or sounds that make them angry. But if they don't, if they don't hear that sound very often, then it's not necessarily something that they need to get treated right away. And then you have those where it's affecting just every every second of every day. And those are the patients that we really need to help and be there for.


Carrie: [00:13:38] Yeah, which I think is a great question. My next question was like, who is there kind of a, I guess a population that's typically affected more severely with Misophonia?


Lindsey: [00:13:50] Yeah. So that's a very good that's a very good question. And honestly, anybody, anybody can be affected by misophonia anybody can get it. So it's not just one population. Um, I've seen it, I've seen it all. I've seen it from, you know, a two year old to, you know, geriatric. It can happen to anyone, even without any other comorbid conditions. However, there are some conditions that we see a little bit more prevalence in, and that includes any any person that has any type of sensory disorder or depression and anxiety or who has the HSP personality trait, any type of neuro atypical diagnoses. We will often see some sort of sound sensitivity, whether that is loudness hyperacusis, the misophonia or a combination. A lot of times both another population that that kind of took us by surprise that we didn't really think about when we opened this clinic is a lot of the patients that Dr. JJ Wicker sees for auditory processing disorder end up coming to me to for sound sensitivity disorder. So we are really interested in doing some research to, to see. See if there is more of a prevalence for those that have auditory processing disorder to also have these sound sensitivity disorders as well.


Carrie: [00:15:23] Mm hm. Wow, That's interesting to to have that kind of connection. But it makes sense as far as having difficulty with auditory processing and then having some other auditory, you know, needs too. Yeah. So kind of getting into maybe a little bit more about the Misophonia, how what happens when someone has severe misophonia and what are their experiences typically?


Lindsey: [00:15:49] Okay. That that is the question that is such that's the big question. And you know you have your subjective what is the patient going through? What is the person going through when they have misophonia? And then you have the more objective like what is happening in the brain, in the body when you have misophonia so subjectively. Um, so I'll just give you a few examples of, of, of the way that, so.


Carrie: [00:16:14] I think examples are great. Yeah.


Lindsey: [00:16:16] Yeah. So I have one client who said that whenever she hears a specific sound, she, she says it feels like there's a horrible itch in her brain and she just can't scratch it. And I had another patient who every time he heard someone sniffle, he said he wanted to just crawl out of his skin. I've heard. I just want to pull my hair out. I just want to choke the person making that sound. Um, and a lot of times you will. You know, one of the questions I always ask patients is, do you have any thoughts of self-harm? Do you have any thoughts of harming others? And I think that as a profession, those are questions that we need to be very open to asking. And a lot of times with patients with Misophonia, what I found is they'll say, Yeah, in the moment I have these feelings, I want to hurt that person or I want to because it's this anger response in the body. It's this fight or flight response in the body and it's fight that comes out in some people they don't most of the time they don't act on it. They have the thought. And then when they when their central nervous system calms down after they've been exposed, they're able to, you know, be okay. But there is there there are patients who will scratch themselves, you know, when they or kind of clench their fists and and dig their fingers into their their hands or bang their head against the wall because it's it's so difficult to cope with what's going on on the inside of their head that they they do something on the outside to try to I don't know the right like.


Carrie: [00:17:59] Manage it or.


Lindsey: [00:18:00] Kind of Yeah. Kind of cope with it in that way. Um, so definitely that's what is subjectively going on. There is a physiological response. So a lot of times there is a tightening or a pain somewhere in the body. A lot of times it's like a tightness in the chest or the neck muscles tighten up. But I have had patients who their feet, their feet like clench up when whenever they hear that sound or their back. But it's very interesting when I ask people, when you hear that sound, do you get a pain in your body? Because, you know, of course we're looking for the pain in the ears. But a lot of times they'll say, Oh, it hurts. And I'll say, Where does it hurt? And they won't say it hurts in their ears. Most of the time they'll say, It hurts in my head, it hurts in my chest, it hurts in my belly, it hurts in my legs. And that's really interesting. So you have that with most patients. You have that feeling that they're getting physically in their body and then you have this emotion that they are getting in response to the sound. So there is they've done imaging studies on what happens to someone when they are triggered with their trigger sound. And there are at least seven different areas of the brain that light up when they when they've mapped this out. And all of those areas are attached to emotional regulation. And so it's very much a system where the auditory processing center and the emotion regulating system in the brain and physiological processes in the body are all connected.


Lindsey: [00:19:41] And so I think that really. That brings out the next question. Who should be treating this? Because it's a psychological thing. It's a physical thing. It is an auditory thing. So a lot of times we see occupational therapists, um, anybody in the mental health care field and then audiologists. And what I noticed when I was at the children's hospital was we were part of the rehab department and I would have occupational therapists come up to me all the time and they'd say, I just got a I just got a referral for Misophonia. I have no idea how to treat this. And and I have seen actually a psychologist in my office for her misophonia and she's like, I don't know how to treat this, but people come to us asking and we don't know how to treat it. And so there definitely are people who specialize in it. There are occupational therapists that specialize in it. There are audiologists that specialize in it, and there are mental health care professionals that specialize in it. And sometimes the case is so severe that you really need a combination of all three. Sometimes it can be handled by one. Sometimes you really need a combination of all three because all of those things need to be addressed in order to to really get that misophonia under control.


Carrie: [00:21:05] Yeah, I mean, especially when you have all those different experiences having that like inter-professional relationships with people that can kind of help out with whether it's a more sensory or a more auditory or more kind of, you know, physical things going on too right now.


Lindsey: [00:21:26] And unfortunately, when what we have seen is that when somebody who doesn't specialize in it or doesn't know exactly how to treat it, when they when they're well, well, excuse me, well meaning clinicians, they can treat it inappropriately and it can actually make the problem worse. So two of the ways that I've seen this is if a child sees a therapist and the therapist plays a say it's baby crying that they're reacting to. So the therapist plays the baby crying while the child is swinging on a swing. Okay? And they think, okay, so we're pairing this negative stimuli to this pleasant activity and, you know, that doesn't work. That's exposure therapy.


Carrie: [00:22:16] Yeah.


Lindsey: [00:22:17] And and it doesn't work because what's happening this misophonia misophonia is a conditioned response. So think back to Pavlov's dogs. We all, most of us remember Pavlov's dogs, right? So Pavlov had these dogs. He'd ring a bell, give him a steak or whatever, and then he found that they would start to salivate just from hearing the bell. That's how I kind of explained to people how this conditioned response to sound is. So you have this sound that at some point in time. Maybe trauma, maybe something else. The brain put it together as something that it needed to fear or to fight. Okay, so it got the limbic system involved. It got our autonomic nervous system involved. And so whenever that sound went off, just like Pavlov's dogs with the bell, the anger response or the the rage response or the anxiety response and then that feeling in the body, it went off just like the salivating of the dogs. Now, with treatment, I do just the opposite. So I with sound therapy, I deconditioned the response because what we also learn from Pavlov's dogs is eventually those dogs stop salivating after so long of not having that stimulus. So when I do active sound therapy, which I which I got from Jastreboff, that's what he recommended. Um, my goal is to present the sound in very small, very, very small chunks of time.


Lindsey: [00:23:56] Again, while they're doing something that they're happy doing, you know, having a good time playing a video game, anything. And then just a tiny, small chunk, very brief of the stimulus, but it's not quite like exposure therapy because we're trying to get it for for the patient to hear the sound without going to the fight or flight response without triggering. And by doing that, you can decondition the response in the body and in the brain to that sound. And even for my patients who have multiple sounds that they're dealing with, what I've noticed is that a lot of times if we can tackle the one that is is the most difficult for them or that is affecting their life the most, then a lot of times it will it will kind of transfer to to how they relate to other sounds as well. Sometimes it doesn't and we have to tackle each one at a time. But a lot of times, because our brain is so crazy and amazing and does all of these things that it thinks is good for us or thinks it's helping us and it's actually hurting us and making life harder for us, we just have to teach our brain what it is we want and how to get that. So yeah, a really long answer to your question.


Carrie: [00:25:13] No, that was a good one though. But I guess it kind of gets me back to another question. You talked about like, you know, your example of of the baby crying, for example, being a trigger. So what are some of the common triggers that you see when people come in for Misophonia?


Lindsey: [00:25:32] So there are definitely very common ones that people can relate to. Sniffling is a really common one. Um, coughing, mouth noises, eating. And what's interesting with Misophonia is that you can have the same physical response. Whether so if chewing, let's say chewing is the trigger, somebody could when they hear someone chewing, they trigger sets off their fight or flight response in their brain. They feel those really difficult feelings. But we also have found that even if they can't hear the sound, but they can just see it happening that they will still trigger. And so in my so when I'm doing treatments like this, I always make sure that when we're doing the active sound therapy, it's actually a video. So there's a visual and an auditory component to kind of help treat that. Um, I know that wasn't your question and now I've forgotten what your question was.


Carrie: [00:26:32] Yeah, no, we were just talking about the different triggers along the way, like, so you were like a lot of eating and like, chewing and sniffling.


Lindsey: [00:26:41] Yeah. So there's visual triggers and there's auditory triggers. It usually starts with auditory triggers and then it can be visual, it can be it can be a trigger just to one person, just to so even the sound that one person makes. But then if another person makes that sound, it's not triggering to them. Um, so chewing, sniffling, gross bodily noises, burping, those kind of things, whistling, um, those are all very common ones, but it really can be anything. And, and we've seen some really interesting ones. So baby crying is another one. And then you kind of have to, to weed out, okay, how much of this is loudness hyperacusis and how much is of this is the annoyance hyperacusis. Because you treat those two things differently and sometimes it's both. They've got the loudness hyperacusis and they've got the the misophonia or the annoyance h yperacusis So you start treating the, the loudness hyperacusis first and then you move into the annoyance Hyperacusis or the Misophonia. But we have had patients who have had very difficult, um. Triggers, such as I have one little guy and we're working with him because his mom's voice is a trigger. Now, that's a really hard thing. Your mom's voice and you're a child, and every time you hear your mom's voice, you trigger, um. Laughter So laughter is, you know, if that's your if that's your child's trigger, if that's your trigger, that's really hard.


Lindsey: [00:28:12] And that is definitely taking away from not only the patient's quality of life, but also those that are living with that patient and constantly walking on eggshells. I had one mom reach out to me who was pregnant and her daughter was her trigger was a baby crying. And they were terrified. They were terrified of this baby coming because their daughter was so reactive to and physically aggressive towards hearing a baby cry. So this is when you're talking about the severity and who should be treated and when. It's just kind of a normal phenomenon in our brain with the chalkboard. That's how that's kind of how you determine, well, who should be treated and to what lengths and in what order. All of that. And that's where questionnaires really come into play and getting as much information about the case as possible, trying to find out all the triggers. Is it just one trigger? Um, and is it only with one person? Those are usually the easiest ones to take care of. Um, but it, it really can be any sight or sound. And we found that a lot of times there is some form of trauma that kind of preceded this, this conditioned response. We can't always we can't always say that though. We can't always narrow it down to some kind of trauma.


Lindsey: [00:29:39] Now, as you stated, I ended up getting becoming a hypnotist, mostly for tinnitus. As I read that hypnotism could be helpful for tinnitus patients, but I have found it extremely helpful for Misophonia patients. And what's interesting is the when we do regression, they will have circumstances where they have heard the sound like sniffling and had a very strong emotion, like fear or sadness or, you know, being scared of the situation. And that's what, you know, it's a perfect combination, combination for the brain to be like, oh, we need to keep you safe when, you know, our subconscious brain is amazing and, you know, if you. So I had a patient who regressed back to a scene where he almost drowned and he his parents got him out and everybody was crying and he was scared and sniffling. And then he got yelled at because, you know, when you're a parent, you're scared. And it's like instead of like, comforting, like you comfort, but you're also like, what did you do that? And for a child, the brain is like, oh, okay, I hear that sound sniffling and I'm feeling this horrible feeling and I wasn't safe. And so your brain makes this this connection. And so it's very interesting. And that is that's definitely I'm sorry, I went on a tangent on that.


Lindsey: [00:31:10] But but definitely what I've seen in a lot of people and trauma means can can be big or small. I've I've had patients that they knew exactly like they were abused as a child and their dad yelled. And so whenever they hear a man yell, they go into the fight or flight. I mean, that is very obvious. But trauma to a child or even to an adult can be just anything that's very, very difficult, that has an emotional component to it. And then you add a sound component to it. And then when it gets all mixed together in the subconscious mind, then you get this conditioned response. And the more you hear it and the more you get that, that that response, the stronger it gets, which is why the exposure therapy is not great, because all you're doing is strengthening that conditioned response, because they may be swinging on the swing, but they're hearing that over and over again, over and over again. And they're they're responding. They're just in this constant state of of fear or fight or, you know, just the survival mode. So it's really when you're treating misophonia, it's really learning to treat a lot of different things at once. You are using sound therapy to help the brain understand. Passive sound therapy helps the brain understand that sound is safe and that some sounds we can block out.


Lindsey: [00:32:35] Active sound therapy is giving little chunks of the sound. That's the trigger. Um, where they don't actually trigger so that the brain starts to learn. Oh, I don't. Need trigger when I hear this sound or see this sight. Um, and then as time goes on, then you can increase that. So the point of misophonia training or therapy is, in my opinion, is to not have the patient ever trigger when they're doing their, their practices. And the biggest sign of success or predictor of success that I've seen in my patients is the patients who really put in the work. And I think this is one thing that is a deterrent for some patients to seek help is it takes a while. It takes kind of a while to to really retrain your brain and to learn new things. And, you know, combine that with cognitive behavioral therapy and combine that with strategies to regulate the central nervous system when you're, you know, your limbic system has gone haywire and you're in that flight or fight response and you need to learn how to kind of tone, you know, tone that down, so to speak. That's a very good way of saying it. But, um, so it's this very complex combination of things that can really help a person, but it does take work on their part. It does.


Lindsey: [00:34:09] Take daily. The.


Carrie: [00:34:12] Yeah. No. So I was going to ask you, though, Lindsay, like kind of going back to diagnosis, do you have a specific like test battery or is it more going through like what you said, deeper dives into questionnaires and case history? How how does that work? Yeah.


Lindsey: [00:34:32] So right now there is no real gold standard for making a diagnosis and there is no true diagnosis of misophonia yet, although I really think that will change. We've so much research has come out even in just the last year. This has really been a hot topic in especially in the psychology world, but there is no gold standard for how to test for it or diagnose it. However, there are some very, very good questionnaires that really can get to the heart of the feelings that are associated with certain sounds, both physical and emotional, and how severe it is. So even though there's not even really a very good way to say like, you know, with hearing loss, we're used to saying mild, moderate, severe, profound. And even with tinnitus, we have questionnaires that will kind of help us label it as such. Misophonia is a little bit more tricky. However, it's obvious when somebody needs help, you know, and it's obvious when it's severe. Um, so there are a lot of great questionnaires. I have my favorites. Um, but, and they're all accessible online and it's a great way to see, you know, they, they ask all the questions. The Sussex Misophonia scale is one of my favorites, but everybody kind of has a favorite who works in with this, and it's not the only one I use. Um, but I, but I like that one because it does have different, you know, subscales for emotional impact and avoidance and repulsion and, and things like that and pain. Um, another thing I always do LDL testing on my patients that come in, even for Misophonia, I always do an audiogram.


Lindsey: [00:36:20] I include LDL testing because so often we don't know that they actually have loudness hyperacusis in addition to the the misophonia. And when I have a patient that has both, most of the time I will treat the loudness hyperacusis before starting treatment on the Misophonia it's been a little bit more effective for my my practice to do it in that order. There are times when the misophonia is so destructive and so harmful that that we actually try to tackle that first. But that is one thing that I always do. You know, I'm I'm an audiologist at heart. And so I want to see what what else is going on in their the way their brain is processing loud sounds as well as how their brain is processing sounds they don't like. And a lot of times you get patients that come in and they'll say, you know, whenever I hear a helicopter, I get really angry. Okay, well, that's two different things that it could be that could be loudness hyperacusis because it might be the loudness that's just so loud. And then they get angry. But most likely it's both. They they have they're having a response to a loud sound and it's a very negative, physical, emotional response. And so, so the triggers helicopter. But they've got both. It's both of those things happening. So we kind of combine the therapies that way so that we can address both.


Lindsey: [00:37:52] Jeez, that one happened.


Lindsey: [00:37:53] That's really interesting is once you do overcome the misophonia the trigger. Um, let me give you an example. I had a patient who we, we got through. It took 12 weeks. And for most neurotypical people, 12 weeks is about average. Okay. That's a that's quite a while to everyday work practice something that. And what I tell patients is that 12 weeks is going to go by anyway, so you might as well improve your life in that 12 weeks. But I did have one patient. His trigger was hearing mouth noises through a microphone. So when you think I'm not going to make it the sound now because that would just anybody who may have that have misophonia would be triggered. And I hate doing that. Um, but we conquered that for him. He, he, he was very religious, a little cute. Eight year old kid, loved going to church, but he would just, just sit with his ears covered just in fear of that sound. And we got that sound. He overcame the sound so it didn't trigger him. It didn't give him the feeling of anger or rage or any of that when he heard it. But what happened? What was underlying that was a phonophobia. So he was going into fight or flight before, just out of fear of being in the presence of that sound, even though he'd overcome.


Lindsey: [00:39:23] That.


Lindsey: [00:39:24] Taking a trigger. So then we worked with the Phonophobia, the fear of being in the presence of that sound. And now he's great. He's great. So it's really just kind of this puzzle and unraveling this mystery. And every patient is different. And I love that. I love that. You know, it's it's you have to be very creative and think pediatric audiologists especially know that you have to be creative. And that's part of the fun. And that's part of the anxiety of it as well, is, you know, when something doesn't work and it's worked on so many other people, you have to you have to be like, okay, we're going to find something that works and we're going to figure this out. And you do. And there's so.


Lindsey: [00:40:03] Many. He did approach the patient who has who has misophonia that.


Lindsey: [00:40:12] There's always a solution. I feel that's that's one of my mottos is everything is figureoutable, right?


Carrie: [00:40:18] No, that's a great motto. But I know earlier we were kind of talking about, you know, there's a lot of not a lot, I should say a few OTS and a few psychologists and a few audiologists that really kind of specialize in misophonia. And just I know in our area, like the person that I was working with, their family was like, we've called around to like psychologists and different places. And we mentioned, you know, misophonia and they don't even know what we're talking about. Yeah. So I guess my question to you is I know you have like an online program, but what can people do if they don't have anyone that kind of specializes in there? Or do you have ways that people like to cope with everyday life?


Lindsey: [00:41:10] Well, they're definitely they can definitely look up ways to regulate the autonomic nervous system, but that is a coping technique that's not going to make the misophonia go away. So absolutely, I encourage, you know, researching different things that can help regulate the nervous system. And a lot of there's there's so much information out there on how to do that on YouTube, on Pinterest. You know, there are a lot of different techniques that you can do that are research based to help calm the central nervous system down after you've been triggered. So it's it's more of a bandaid than a fix. Right? But those are those are techniques I also teach my patients as we're going through those are also very important. And so if you're someone who has misophonia and you don't know where to go, there is nobody in your area and you're just trying to get through your day. Then definitely looking at ways to regulate your nervous system and trying different ways. I when I see my patients, I have give them 20 different types of ways that they can regulate their nervous system if they get triggered and they'll like some of them and they'll hate some some of them and all everybody's different. And that's why I give them like this huge bucket full of things that they can use.


Lindsey: [00:42:35] And we practice it in the clinic or, or virtually, if we're doing it virtually so that they can really have a tool to draw on in those moments when things are just really, really hard. And you know, it's really, really hard on, on our bodies, on our when our nervous system goes into that state and we can't get out of it, it's it's very traumatizing to our bodies. And and so that's my best recommendation as far as how to cope Now understanding that you really that's not going to eliminate the conditioned response in the the subconscious mind, in the brain, in the amygdala. You really have to to have somebody that knows what they're talking about. And this is this is where this is this is where the trouble lies. Right. Who knows what they're talking about? Yeah. And how do you find them? And this is this is why I created the online platform that I have, the sound immunity program. It's a coaching program. So, you know, audiologists know we can't we can't do telehealth. It's not a thing yet. Yeah. In most places. And so what I, what I, I got this idea from seeing other audiologists who had created tinnitus coaching programs and it allows a little bit more flexibility for people from all over the world to connect with you virtually to get coaching through their experience and to get guidance on on how to to get through this and and move past this.


Lindsey: [00:44:23] Now, of course, any type of program like that, it's a coaching program. You can't do any diagnostic testing. You can't make an official diagnosis. But there's still a lot that you can do for these people. And I now have patients from all over the world in all different time zones, and it's incredible. And I've also, um, created an online program that's kind of a self-paced program that has everything. So somebody who, you know, maybe is uncomfortable with the one on one face to face type thing, Um, we'll, you know, they can go through a course, a 12 week course, but they can do it at their own pace and then always go back to it and have that. And I felt that that was really important to to create because of exactly what you said. There's just not very many people that understand. And if you get someone that says, well, just wear headphones. Now you're going to make it worse.


Carrie: [00:45:20] And that was actually one of my next questions. I'm like headphones and no headphones. I think it um, yeah, it probably depends, but and where they're at in that process. But I know there's a lot of different answers for that.


Lindsey: [00:45:34] There are a lot of different answers and you know, headphones have their place. Noise reduction headphones have they have their place. And when I see so I've had patients or clients that come to me and they've worn headphones noise canceling headphones for seven years because their ABA therapist told them that that's what they needed to do to just to get through life, right? And so by the time they come to me, they have misophonia and such severe hyperacusis because they haven't gone anywhere in the world without these noise canceling headphones. And there is a way to still wear headphones. Noise canceling headphones without getting as much auditory deprivation and that is get headphones that will stream some sound in. So if you're going outside, so so if you know for these patients, I'm never going to say, nope, stop wearing your headphones because they will never be able. I mean, that's just it's that's too much. That's you can't do that. And so what I'll typically say is, okay, we're going to just try to reduce it like just a tiny little bit. We'll try, you know, try going, you know, holding the headphones out for ten seconds and then put them back, you know, and we start very, very slow. But another thing is, if you can stream some very soft white noise, pink noise, red noise, even some nature sounds, then at least their auditory system is getting, you know, a more broad range of stimulation and we're getting less of that auditory deprivation. Now for parents who, you know, they say, can we just use them for the fireworks or for. Of course, Yes. You know, you're not going to do damage. In fact, it's it's good to use them for those situations anytime, you know.


Lindsey: [00:47:24] But if you know, if it's just like a you're going to the kids museum and you're not far enough along in your therapy program to really be able to do it without your headphones, then wear your headphones if you can stream something to them even better. But I mean, the whole point is that we want to improve the quality of people's lives and so we don't want to take anything away from them. And when you're working with Misophonia and Hyperacusis and Phonophobia, it's a slow process and you have to be okay with that. If you're a professional that wants instant results or if you're a patient that wants instant results, you know, there is no instant thing that's just going to that's just going to help. And I wish there was. And you'll see ads on Facebook for things that say, if you have misophonia, this is what you need. And they they do have their place, right? Some of those things do have their place. But in reality, you want to avoid the use of headphones for noise cancellation purposes only as much as possible. And if you do need to use them, try to stream something to them. And there are a lot of great products on the market right now. Apple has some, Bose has some where you can still hear what's on the outside world, but then stream something that can kind of help your central nervous system. And then if there's a sound that's very bothersome, you can push a button and it can activate the noise reduction so that all you're hearing is the sound that's streaming, you know, to your ears. And so that's typically what I recommend to my patients who have worn headphones for a long time.


Carrie: [00:49:08] Okay. Yeah. Because I think being in the school system, especially working with some neurodiverse individuals too, there's a lot of headphones that are happening in a classroom and not that I've done any kind of misophonia questionnaires or anything with these kids, but it makes me think that they probably do have triggers. Yeah, absolutely sounds.


Lindsey: [00:49:33] And that's what's so hard is that as audiologists, we we know most of us know that by depriving the auditory system of sound, you're going to make hyperacusis loudness hyperacusis so much worse. I mean, it's, it's it's really it sounds counterintuitive, but when I see when I see parents or I'm talking to parents about these headphones being used all the time, you know, I say, really what we want to do is try to enrich the environment with with pleasant sound for as much of the time as we can. We don't want to deprive the ear of that that auditory system of hearing sound because then when you do your central nervous. System thinks this isn't right, this isn't safe, and then that's. So you're more likely to go into that fight flight freeze response. And that's just not what we want. We want just the opposite. So it seems counterintuitive to a lot of families, but we really, instead of taking sounds away in order to help the auditory system and the subconscious mind sort of get over this, we we want to put sounds in, put good sounds in and and strengthen the auditory system.


Carrie: [00:50:51] Yeah, that that's great. So overall, I feel like there's that Misophonia is definitely not cookie cutter at all. No. So and every individual is so different. So really like taking a deep dive into a questionnaire and case history and finding out more about what that patient is experiencing. And then like you said, it's a slow process that takes a long time and you can't expect to have quick results with it. Yeah. Is that thing so kind of wrapping up, I thought first, um, a couple of things. Did I miss anything like important as far as the question goes that you might want to think like our audience, you know, that kind of not to no pun intended, but like, it triggered your mind. Yeah. Did I miss something big that you're like, oh far Misophonia goes, This would be something I think we.


Lindsey: [00:51:57] Really talked about a lot of things. Um, I think it's important for as clinicians, as audiologists or as other type of professionals to, to be careful to stay within our scope of practice. And while I have trainings and I and I do things with my patients or with my clients through coaching, I know when something's out of my realm. I know if I've got somebody who really needs to be seeing a psychologist or a psychotherapist, we need to recognize that, you know, okay, now we need to this is out of sight of my scope of practice, and I feel like we really need to recognize that all professions, all professions do. And I and I feel like it's so important to be to have if you're going to work with with well, with any of it, with anybody. If you're going to work with anybody, you need to have a team of people that you know that you can work with together so that you know that patient or that client can really get the best results. And there have been times when I have gone through treatment with someone and we are not making progress. And it it appears that that they really do need more psychotherapy than they do sound therapy. And so I think admitting that is not wrong. It's honest and um, not trying to do something falsely or that you don't really know what you're doing, doing cognitive behavioral therapy. There are a lot of people who who audiologists within our scope of practice to do cognitive behavioral therapy with patients who have tinnitus and sound sensitivities.


Lindsey: [00:53:35] But you have to know how to do it. You can't just jump in and, you know, say, I'm going to give this a try. I'm going to give this a whirl. And so, you know, there's that. But then I guess the other thing just to wrap up is I think everybody is going to start seeing more and more about Misophonia and Phonophobia in the coming years, whatever that ends up being called or defined as, because even the definition isn't totally agreed on by different I mean, there's a whole committee, a consensus, a misophonia consensus committee to try to define what it even is and how to how to do all of this and how to treat it, how to, you know, do the intake, all of that. And that's great. But right now, we're still kind of in the beginning parts of this and there are a lot. There's a huge need. There are a lot of people that need help. And we're going to be hearing more and more about those in audiology and in psychology and in occupational therapy. So I think I'm excited. I can't wait. It seems like a new article comes out every every month and I just eat it up and I love it. And I think, I mean, even a year from now I may listen to all the things I said in this interview and think, Oh, well, that's okay. Now I have a better understanding of that. And oh, now I've changed, you know, just because.


Carrie: [00:55:01] Yeah, and that sounds like we're probably have to have another podcast because it is one of those like niches that we don't know enough yet. And as professionals, we know that what we believe today or what we know today, being a professional and getting more research may be different than what we do a year from now. And that's just keeping up with the literature and the research and being an ethical professional, right?


Lindsey: [00:55:30] Absolutely. Yep. That's perfectly stated.


Lindsey: [00:55:33] Yes.


Carrie: [00:55:34] So. Well, Lindsay, I cannot thank you enough for being part of the EmpowEAR Audiology podcast. I if our listeners have more questions for you, is there a good way to reach out to you?


Lindsey: [00:55:48] Sure they can go to. My email. It's a long one. I'm sorry. You know what?


Carrie: [00:55:54] I can put that in the show notes. I'll put the email in there. But can they? They can also visit your your guys's website, right?


Lindsey: [00:56:03] Yeah. So there's two websites. So we have one for our pediatric clinic which is little heroes hearing clinic.com or you can go to sound immunity.com and that's is is of course just for the sound sensitivity portion of what I do but I do free consultations or extended consultations. If somebody just wants to talk to me and try to get some ideas or try to to figure out what's best and so they can always schedule a free 15 minute consultation through sound immunity.com. And then we can kind of see if you know what some of the options are for them.


Carrie: [00:56:43] Okay. Well, thank you again for being a part of the EmpowEAR Audiology Podcast. It was such a great conversation and I'm sure our listeners will get so much new information as well as I hope that they reach out to you if they have a patient that they happen to be working with that has Misophonia and they need some different strategies and supports and therapies, they have a place to go to. Absolutely.


Lindsey: [00:57:11] I love talking to other audiologists and other professionals and kind of troubleshooting different cases, so please reach out to me. I love I obviously love to talk about this a lot.


Carrie: [00:57:22] So so I love hearing your passion in it because that's what we need is passionate professionals who are targeted in some of these areas. So thank you for all of that you do.


Lindsey: [00:57:36] Well, thank you. I really appreciate being here and letting my you letting me talk about all of this stuff that I just love to talk about.


Carrie: [00:57:46] All right. Well, thank you, listeners. If you love this podcast, please share it with others that you know so others can enjoy the EmpowEAR Audiology podcast.


Announcer: [00:57:57] This has been a production of the 3C Digital Media Network.



Episode 55: empowEAR Audiology - Thibault Duchemin (AVA)


Announcer: [00:00:00] Welcome to episode 55 of EmpowEAR Audiology with Dr. Carrie Spangler.


Carrie: [00:00:15] Welcome to the EmpowEARAudiology Podcast, a production of the 3C Digital Media Network. I am your host, Dr. Carrie Spangler, a passionate, deaf and hard of hearing audiologist. Each episode will bring an empowering message surrounding audiology and beyond. Thank you for spending time with me today, and let's get started with today's episode. Hi, welcome to the EmpowEAR Audiology podcast. And before I dive in today, I wanted to take a minute to share a bio about today's guest. I have Thibault Duchemin with me today, who grew up in Paris, France as the only hearing person in a deaf family. Sign Language was his first language, and he experienced from a very early age the multiple challenges that deaf and hard of hearing people face in understanding and communicating with the rest of society. Helping his family navigate between the hearing and the deaf worlds led him to find Ava, a mobile based artificial intelligence that empowers people with hearing challenges by allowing them to converse in real time with family, friends and coworkers. Thibault holds a double masters of engineering from the University of Berkeley and Paris Tech, and in 2017, he was named a Forbes 30 under 30 in consumer technology and is a member of the Hearing Loss Association of America Board of Trustees. So thank you for being a guest today and the EmpowerEAR AudiologyPodcast.


Thibault: [00:02:02] Thank you for having me, Carrie. It's a pleasure.


Carrie: [00:02:05] Yeah, well, I thought we would start off with your background story, your personal family story, and how that kind of guided you into your life purpose.


Thibault: [00:02:16] Yeah. So as you mentioned, I, I basically sort of like navigated through my family. So from the very beginning, the deaf and the hearing world. Um, I remember I think being 7 or 8 years old and doing my first demonstration in France with my family, where we can have like groups of us all together and we're defending sign language as a, as a language to be recognized by society. Um, so my parents and my sister are deaf and I was not born deaf, but grew up with sign language and kind of like, you know, obviously always kind of been facing those kind of challenges. Um, you know, I was at home at the end of the day discussing, you know, school, discussing work and seeing in many different ways, shapes and form the ways that, you know, challenging situations arise, moments of miscommunication, even more frequent. And all of this kind of like, you know, obviously growing up, you want to fix something. So you start by answering the phone. You start by intermediating and interpreting in situations where it's hard to find an interpreter. Parents are, you know, speaking sign language mainly. And I was always there until the moment I was not there anymore and kind of moved to the US and where the question of how can I continue to be a good family member, a good CODA sort of arise. And it led to Ava being one of the solutions for all the CODAS out there who are interested in and still helping and supporting their family in empowerment and autonomy.


Carrie: [00:04:00] Wow. Yeah. Sometimes I think it's our the challenges that we have along the way that make us very creative in problem solving.


Thibault: [00:04:09] Definitely.


Carrie: [00:04:11] So there's do you have any other stories to share about your experiences as a family role of being a CODA that you wanted to share before we move on to some of the AVA technology?


Thibault: [00:04:29] Yeah. I mean, I think, you know, I think it will be weaved across the interview, you know, just because of the questions that usually touch very real life situations. And I tend to really bring personal life and and situations just as examples. So let's let's let's move on to different topics and then, you know, we'll probably bring some stories there.


Carrie: [00:04:54] Okay. That sounds good. Um, so I know that I watched your TED talk that you did back in July, I think 20th of 2017, and it was titled Don't Silence Your Anger. Find your purpose with it. That's a pretty strong and emotionally driven title. Can you share a little more about how that title came to be?


Thibault: [00:05:18] Yeah, it's a strong title. Um, I would say sometimes people are afraid of strong emotions for sure. And, you know, we live in a society that tends to mislabel anger or really sort of designate it as an emotion to be afraid of for a reason. I think, you know, acting from a place of of speed and rush the emotional state doesn't always yield to great outcomes. I'm talking about a different kind of anger. It is something that sits with you. That is maybe what I would say is the healthy part of the anger. It always gives us a signal, right? Like if there's anger, there's, um, maybe a frustration that is being built up. There's a series of things that we, we find unfair or unjust that should not happen. And I think of anger not about the outcome that is created on society, but more the reason why it's even there. And that's what I pay attention to. And that's why I encourage people to think over it and pay attention to, you know, a lot of advice out there is find your passion. I say find your anger. Look at what it tells you about what is really important for you now. Because, you know, when you think about passion, so much of our passion is influenced by the society around us, right? Like we think we should be passionate about a certain thing and a certain way of living. But anger is just yet another key to say my passion is and sometimes for some people it can really open up a lot of thoughts and self-awareness around this. For me, you know, growing up in a deaf family, a lot of times I would see, you know, my my dad coming back from work and really being frustrated because somebody younger got promoted to be his or her manager.


Thibault: [00:07:11] Right. So you basically have situations where, you know, deaf/har of hearing people are not always promoted to the roles that they should be. There's assumptions and preconceptions about what they can do and what they cannot do. So they don't even bring the deaf person into the decision. That was just something that really frustrated me very young at the very young age and growing up. It's like, you know, watching your own father just not really being this father model because of those problems, like lead you to say, hey, you know, what can be done about this? So this is a personal example, but I found it resonating with a lot of other people. Um, you know, people come to me and they say, Hey, you know, I've not thought about this lens almost because maybe they were afraid to think about it or they kind of like throw the the whole thing, the baby with the water, right? Like, they don't want to to think about anger this way or they're taught to repress it or sort of like get rid of it. But really what it is, it's a scream. It's a signal. It's something that's been, you know, done wrong to me or is not sort of fully sitting with me. And I want to examine it. I want to explore it, and I want to understand what it wants to tell me. It's the message.


Carrie: [00:08:21] Yeah. So you definitely were able to take that anger and funnel it into a purpose. Yeah. You.


Thibault: [00:08:31] Yeah. It's a powerful motivation, I would say, today. I still obviously have the anger when new situations arises that we cannot, you know, honestly, it's like it's the empathy part, right? It's like you hear someone's story and it's in your circle of control, and there's this anger that fuels me to think about how can we do better? What can be more of service to our users, our customers, people who don't know us yet, and acting in ways that are just unconscious and not very thoughtful towards staff helping people. What can we do better so that we can impose a different standard that is more accessible and inclusive? I'll give you an example. You know, during COVID, where everybody sort of switched to different online platforms, that sort of thing, people really, really, really left out in person with masks. It was very hard for them to navigate. I mean, you know, can you imagine like relying on lip reading and suddenly from day to the next, having to basically ask other people to either trade off their health or with this whole kind of psycho situation or, you know, it's kind of like nodding and not knowing what the person just told you. And, you know, even online in their own organization, not really having a say about the solutions that are being kind of imposed. And a lot of those solutions didn't have captions or even ability to ask for captioners or interpreters to kind of connect in the call.


Thibault: [00:09:59] So the usability and experience of deaf/hard of hearing people were just terribly terrible. And a lot of times it was kind of revealing, um, I would say power struggles and different levels of dynamics. And so for us, like seeing this and watching it because we have we had a lot of users and deaf people all across the US and Europe facing those situations, asking us for help, like it led us to develop a version of AVA that also works online. So it's a desktop and mobile based application, just an app, but without talking too much about the product, really what it is behind is that we just get a signal and we get like to be very close to what actually the state of society is. It reveals a lot of unfairness And you know, when you have a lot of this unfairness on your on your chest, it's like there's one constructive way and healthy way to solve it, which is to funnel it into a I would say, a long term project, something that can actually chip at the problem. And there's another way to kind of process it, which is to yell and, and you know, it's just not like be unrestful with it. So I think the challenge of like processing that anger is important. But once you do this, it is a very powerful driver and fuel of energy.


Carrie: [00:11:16] Yeah. I'm glad you have been able to use your anger to drive you to productivity in the in your AVA business. But before we talk about AVA, I know a lot of people have experienced captioning on some level, but I think there can be a lot of confusion too about the terminology of different captioning. So for the purpose of our listeners today, could you give a little cliffnotes version of the difference between what is a subtitle versus closed captioning and open captioning and live captioning? Are those different captioning things?


Thibault: [00:11:55] So there's a big bucket typists is a is also a thing stereotyping, you know, fast typing, typing captions. Look, we live in a world where captions are everywhere now actually more than it was five years ago. And this is good. We have multiple senses and sometimes hearing is not always going to be there, no matter if we're deaf, hard of hearing or hearing. And captions are really are the visual way to transmit information. You know, obviously this is when you don't speak a visual language like sign language, but that's most of the world that is in this situation. And so that's why caption is really, you know, serving everybody who can see and who can read. Um, and I think, you know, captions capture the the, you know this whole job or purpose of transmitting the information with with text with language you know subtitles specifically is about like a prerecorded audio or video that you basically going to sort of like create the captions for. Um, and the file is basically subtitle and subtitling is basically taking something that is prerecorded already existing and adding captions to it. Um, the live captioning is when you do this online and you know, live, you know, where you don't have any sort of like weight or sort of delay between the moment it's being said and the moment you're captioning it to do live captioning.


Thibault: [00:13:29] You basically have multiplicity of technologies. Value typing means quick type in Latin and you know what that means is basically trying to go fast to type and caption You have broadcast captioning, you have stereotyping where you basically use shorthands to type faster and that's usually used in trials and the law just because of the sheer amount of of those situations that calligraphy is also a way to go faster. So there's this multiplicity of situations. We wanted to also simplify this by using the word scribe, by basically sort of saying, hey, you know, instead of kind of naming or having to choose between all of these different jobs, like let us introduce scribe captions, which are basically for us, like another process of creating captions that is being done live and is being done in awareness of the other person who is reading. So a scribe may have more information about the user and the person watching than typical captioners. And this is really kind of reconnecting us to the older, you know, function in  ___ where you had this intermediary between people who didn't know how to read and people who use the the writing, the written language. So we see scribes as more intermediaries and we use scribe captions, which is this professional 99% accurate in in real time technology that is based both on AI and on human accuracy.


Thibault: [00:14:59] Okay.


Carrie: [00:15:00] Yeah. There's so much out there and I agree the last five years has been a big boost. I think COVID helped some of that because a lot of people were like what you were saying, the deaf and hard of hearing community was kind of cut off. And for accessibility purposes, I feel like that really helped in that sense because people were angry about it and wanted something done.


Thibault: [00:15:25] Yes, petitions were made. I mean, we had just an explosion in people using our app and really sort of giving us feedback and then building with them different situations like the scribe service, the ability to use AVA online for Zoom meetings and and meet people where basically saying, Hey, I'm on this platform that, you know, is using this language or basically is in this software is a company software. I cannot, you know, sort of follow what's being spoken about. And we always had this approach of don't make more problems by creating solutions. I think sometimes people complexify what should should happen. So AVA is basically working on top of any situation or any conversation. So you don't need to sort of have an integration for a specific software. It is platform independent. Which kind of like helps you be autonomous. You come into a conversation that'd be online or in person meeting, and you basically have your own solution that will provide you basic level of understanding and expression. So it goes in both ways. And too often I have this situation where even today people use tools like we have the, you know, the captioning tool on Zoom. It's it's great. But the problem is what happens if what I'm saying or what is being printed on the screen is not correct. I have no way to correct it. If I want to answer something and I'm nonverbal and I'm deaf signing, right, I'm going to type in a chat so people can read it. But if you've actually been in a meeting, people are pretty quick at following and the audio space, they don't really look at the chat in real time. So as a deaf person, I'm going to be disadvantaged. So we basically built a series of tool to really help, you know, true integration and inclusion versus like basic compliance, which is accessibility. We go a bit further by just saying, Hey, how do we invest in autonomy? And I think that's kind of the direction of, of the captioning, sort of like state of the art today.


Carrie: [00:17:26] So kind of taking like maybe a little step back. I know you said the anger kind of fueled you to think about this as the purpose or a project that you are going to do. But how did you actually get started? I know you had the idea for AVA, but can you kind of back up and just kind of share how everything did get started?


Thibault: [00:17:50] Yeah, absolutely. Um, well, I think this is a process of building a company is first, you know, building a team around an idea and motivation. We've been always set on making the world more accessible for 450 million people, it's going even to 750 million over the next 20 years. So. The very early stage was a few encounters. You know, I come from a deaf world, like using sign language as a first language. I met a lot of deaf and hard of hearing people on campus in Berkeley where I got started. And at this time, it was really a time of, you know, a lot of hope, a lot of excitement about technology. And maybe at this point we didn't have. A lot of like sort of pessimistic views. So for me, it was really interesting to be at the forefront of machine learning technologies and in the same time, coming from a deaf or hard of hearing background, it's like knowing that this also technology is not often, you know, dictated. Like therefore I think people receive the developments of technology, but they don't get usually to participate in building those technologies. So for me, it was really, really important to, you know, have a say there. I had a sister at the time who was studying law and basically told me like, hey, you know, if I want to be a lawyer, there's no deaf lawyer in France, so how am I going to do? And so one of her first project very early on was to to actually kind of build a glove, a physical glove, to translate sign language.


Thibault: [00:19:25] This is something has been done over the years. You may have seen some videos. It's it got us started. And I would say unlike maybe 99% of the other teams who try to do this, we continued around the mission because in the end, it's like while the glove was maybe not the right form, there was something in there which was the immense pain and difficulties of integration in society of a lot of people. Not everybody. Some people are just very well integrated, autonomous and happy. But there was a really strong driver for us to work on accessibility. And what we noticed is that it was harder, specifically even in the US, we're supposed to be, you know, ADA accessible with a lot of structures. It's just felt that deaf people were still, you know, having difficulties in social situations and specifically group conversations. And when you think about it, it makes sense. You start seeing, you know, multiple people at a dinner table, right? And even a cocktail party situation. People speak. It gets loud in the background. It's like conversations. So sounds can be bouncing. There might be music in the background, right? Like all those deliciously horrible situations that we remember and and it makes it very tough to be in a situation where you're just like, just met someone. So that person may have an accent myself, have an accent, they have a message. And it's like all this thing that just actually how we meet new people, make new friends.


Thibault: [00:20:51] And so if this is not accessible, then it is really hard for a category of the population to make new friends, create professional opportunities. You know, it can happen in some structures like at work, but what about this happenstance, spontaneous thing? The best example is like me. And you know, here I'm bringing some personal stories, but me being next to my mom going shopping and really people going to her and asking her for directions, you know, like how many times can you just, you know, start a discussion with a stranger when someone asks you for a direction many times. Right. But when you're deaf hard of hearing, it can be harder. Much harder. Like my mom used to kind of answer like, hey, I don't hear now. She uses Ava, like she puts up her phone, her app and then says, Wait a moment. And then it captions what the other person says. And she can give that that part of kind of like being a great citizen, being a great member of society. So I think this socialization aspect for us felt the first domino work on this massive problem, you know, because in the end, it's very it's not a technology problem only. It is a full stack problem that requires a full stack solution. So it has multiple components. It's like how like how much patience we have when we are accommodating someone, how much attention we give to like undivided attention to somebody else in 1 to 1 coffee meeting versus in a group conversation.


Thibault: [00:22:14] I don't get as much presence with every guest, especially if one is deaf hard of hearing, right? So it's all those subtleties where it looked very important for us to work on this problem. We met a lady called Alma who told us that within her own family it was very hard for her to just follow a normal dinner table situation. And I felt very moved by this because in my own family, you know, I always had vivid and rich dinner conversations in sign language. But to be in your own sort of like circle and intimate circle and not having easiness to understand what other people say, that just struck me. And I think from there we really felt like this is something that is worth spending a lot of time trying to figure out how to make better. It turns out that the technology we needed didn't exist at the time, so we were foolish enough to actually say, Hey, we might actually solve it. We talked to the founders of Siri, Shazam, of Google speech as well, and we actually really, you know, made a dent in this. Like we I'm proud to say we were the first company and we still are to provide a group conversation based captioning, which does help a lot of deaf people like face the Thanksgiving dinner syndrome, the situation where a lot of people speak. But we went much beyond this. We just started with this first domino and a lot of others fell as. Consequence of this action.


Carrie: [00:23:39] Yeah. Would have to agree that having individuals and individual people who have experienced the communication challenges firsthand gives you so much more insight into what needs to go into accessibility and programs.


Thibault: [00:23:58] Yeah, and it is an opening, right? It is a first foray in as many ways to approach problems in accessibility. Some people say, Hey, there's a lack of interpreters, let's train more, let's make the scheduling easier. Other people say, hey, you know, let's automate sign language. Other people say, hey, let's, you know, put captions on TV to be better on movies. I think there's a moment where as an entrepreneur, you have to really diagnose and think what is really the first domino and think first principles. You know, my my dream would have been to kind of help on the issues with accessibility. Like I would love everywhere to have an interpreter 24/7 but just cost twice. It's very complicated, right? And in terms of training, it takes time. So there was this way that we could solve and make first steps towards accessibility issues, and that's the way we took in. That brings us now to our hundreds of thousands of people using the app every day.


Carrie: [00:24:55] Yeah, which kind of is a great seque into, you know, you've talked a little bit about AVA and being able to be used, you know, for a group situations and for work and things like that. But can you just maybe dive a little bit deeper into how that is set up and how somebody might utilize that?


Thibault: [00:25:19] Yeah, the key thing is simplicity. You download the app, you go on the website If you need to just be on a Zoom call or Google meet call and you need captions to be your formats and you need to be able to answer and be heard. So you basically download it, create an account and this account is free and this helps you have access to our captions unlimitedly. So you don't have to pay to have captions. Nobody, nobody should have to pay for accessibility. It's really our belief. Now there are situations where your own company, your own school, basically if your students may, you know, have a say and a responsibility in this accessibility. So it's basically, you know, you think about society, not everything all the burden should be on the individual. So we basically propose premium plans like pro plans that are meant to be financed and funded by the organizations you a member of. If you retire, there's a community plan that basically gives you a bit more advanced functions. And those functions could be translation, could be a higher level of captioning that is more adapted to professional settings where you can customize vocabulary, things like this. And this is so that we can create a cross funded model. So basically people who have, you know, a job and a school that can pay for it can basically finance partly obviously like in a lower a lower capacity accessibility and captions for the other people. And I think this is maybe the socialist aspect of being from France. It is really important to think about like accessibility as a common good that we all own and as a community, as a developing community, it is possible to support the captioning of the other members of the community.


Thibault: [00:27:08] You don't always need to do like the fund where the hearing people contribute to it. But when you get your school and your job and your company to provide for it, you know the right level of captions, then you basically in the same time ask for a little contribution for everybody. And that's kind of the same principle for you. It's free. And the point of it is to be always free. And for employers and for schools, they can pay for both the AI version. So that means the automated captions and on top of it the human provided captions too. So this is in the domain of captions. We don't provide interpreters, but we provide captioner which often are good, either complimentary solution or a full solution for people who are deaf or hard of hearing. It could be in a pinch. You don't have time to kind of schedule an interpreter. You can have get captions with our scribe service within 30 seconds in business hours. So that's quite incredible, right? Like I've seen a lot of people wait for weeks or having trouble scheduling a captioner or maybe somebody like cancels last minute. This is very much of a of a great solution for people even who already think they have all the tools. This can actually sort of be really great in a pinch to.


Carrie: [00:28:21] Mm. Yeah, that's a great way to have access quick and to know where to get it. And kind of thinking about it from, you talked a little bit about schools and things like that, but in my job I work with a lot of teenagers who are thinking about going to college or university and may have difficulty in their classes. How did that look for a college or even a high school kind of setup?


Thibault: [00:28:50] Yeah. So college and high school are, you know, hybrid environments. You may have classes online, you may have classes in person. Let's assume there's a variety of situations like amphitheater style and then small class, I would say like, you know, group project style, where, you know, you maybe are like 10 to 15 people around the teacher. So in person, mobile app and computer could be useful online. The computer this helps you basically have captions where the action happens. So when you're in class, we basically, you know, either you're in a small situation, small class and the sound is good and you basically get captions on the computer. So you open our desktop version and the sound basically just goes through into your computer and captions what's being said. You can click in one click, you know, schedule scribes for any of the classes you have upcoming, and then they will show up at the time the class start to make sure there's no like fractions situations where an hour just comes up and you just don't know what the teacher said. So this is, you know, very easy to use in class when you're in an amphitheater and then the voice of the teacher might be a bit further. We actually got your back as well. But you're going to need to get closer to where the person is speaking. So either you go in the first row or you actually connect a simple Bluetooth microphones.


Thibault: [00:30:22] We provide some Bluetooth microphones that range from $30 the units to maybe $100. If you want the higher end quality, you can get your administration or city managers to pay for it. But basically you just go to the teacher and you just, you know, put the microphones either on their lap, on the like as a Clipper microphone or just like in a in a desk next to them if they're kind of stationary. So that helps them just very easily without having to do anything with their phone or mobile app be captured in terms of audio. And you can just get the captions of what is being said in the same time the scribe, which just remind you guys is a is a physical person who's going to be remotely listening to the conversation and captioning it and editing in real time. This person is going to make sure that the accuracy is really high and they're going to hear better through the microphone that you may have next to a teacher. So this is a situation that is a very class oriented situation, but obviously AVA is very useful outside of it. So you may have a cafeteria lunch where you basically discussing with someone and, you know, it might be just a one on one situation. You just put your phone next to you as you're eating and then while you're kind of eating your plate and looking at the person speaking, you can glance over to the screen of the mobile phone to see what you missed.


Thibault: [00:31:38] And this is a very, you know, hands off situation, right? Like you don't need to hold it or anything. It should work. Now when there's 3 or 4 people around the table, I'm really going in the full situation. But that's really those key moments. You actually just show a simple QR code and classmates, even people you don't know who are at the table can basically use a simple camera to scan the QR code and be connected to the conversation without having to download the app. So really, it's just, you know, the same way as we've been ordering during COVID in restaurants. It's just you scan a QR code, it opens a web page, and then what they say is going to appear with their own color on your phone. And I think, you know, that's such a lifesaver. You don't have to sit alone in, you know, cafeteria anymore. You don't have to kind of like nod. And you didn't really understand what your classmate talked about. And I think that's those moments are very formative when you kind of like go to college or even when you're starting university, maybe even the first year. That's where you make friends. That's the first domino where also to make sure it's correctly accommodated for.


Carrie: [00:32:42] Yeah. And so when you were talking about the QR codes and everybody kind of like scanning it, so that does that then make their phone a microphone as well. So it picks up their voices. Okay. Exactly.


Thibault: [00:32:55] So there's one thing that I'll just say very short. It's you are autonomous, you have your own app and you might pick up pretty well, even if there's a lot of background noise and people speaking far away from you. But don't settle for 80 or 90% accuracy, you can boost it by simply sharing to another person at your table. Hey, if you scan your microphone, I'll be able to understand better what you say. How about we do this? That takes 30 seconds, even less. And then this also allows them to be helpful and to accommodate you. And it's not so much of a friction. You may disclose that you have hearing loss in this situation. So this is something that is completely optional. But I would say everybody, even the young people, now use captions for TikTok for Instagram. So why wouldn't they use caption for a conversation with you in person on top of it? It's just cool. It's a new technology, you basically being a super human, having like new ways to to understand the conversation like this. And if you don't want to record it or have it, every trace of it, you can always delete it or choose to not record the information too. So this makes it very private, secure and great for teenagers as well.


Carrie: [00:34:10] Yeah. No, I'm going to have my teenagers try that out at our we have a group meeting or a peer mentorship meeting, and I'm sure they would love to experiment with that and then possibly use it in their everyday life as well. One other topic that I thought we should touch on would be health care and accessibility too, because I think it's important to recognize that every deaf and hard of hearing person does require different accommodations and supports, and we should be asking what they prefer before an appointment. And I don't think that always happens. But yeah. What is your experience been with working with health care facilities to help them be more ready to accommodate different individuals?


Thibault: [00:35:05] Yeah. Let me actually ask you if you care to share, what has been your experience going and I guess it's not the same in your practice versus outside, but what has been your experience on accessibility? And I'd love to talk about mine as well.


Carrie: [00:35:20] What has been my experiences. Yeah. So honestly, it was interesting. I was thinking about this the other day about how unaccessible our, my cochlear implant surgery was because I was in obviously a situation where I wasn't able to hear because I was going in for cochlear implant surgery and everybody had mask on and it was still, you know, right after COVID or I mean, COVID was still happening. So there was, it was very much, um, restricted as far as, you know, not, not being able to see. And I was thinking, wow, it we, they weren't set up at all to have accessibility. And so, you know, in my situation, my husband was my my ears and but they're saying a lot of important medical information to that. He wasn't getting all of that because it's so much coming at you. And so, yeah, it made me think, like as an audiologist, I mean, I work in the schools, but audiologists don't always doing a good job in their own private or clinical practice to make accessibility something, um, just common, I guess I should say that expected, you.


Thibault: [00:36:51] Know, and that's even crazy because you're going for, you know, hearing related surgery and had no accessibility. So the standard today, the state of the art even in the US where I believe the healthcare expenses are the highest, you know, per person. So even in the US, you just have this subpar experience in one of the most stressful situations. And. That's going to change. That's going to really, really change. It tells so much about how unprioritized deaf/hard of hearing people have been and about how in the end it's really down to a question of costs and ability. It's like, you know, probably people don't want to ask the question of how you want to be accommodated because they just don't have the budget for it. If they don't have the budget because the voice of deaf people have not been really heard to fight for decent budget for it. And, you know, it's not to kind of denigrate all the existing policies. They're just not enough. And I think everybody can agree to this. It's they're not enough to just think that you're going to magically provide all the needs and cater to the needs there. You have a lot of deaf/hard of hearing people who are basically coming with a family member, you know, and that's what you did, right.


Thibault: [00:38:06] And so it's like so interesting to see how broken this is. And like, you know, we're not just a health care accessibility company. We are a full sociFinpatient care situation. So there's a few institutions that we're working with, some in France, some in the US, where basically a deaf/hard of hearing experience will be 24 over seven accessible in a hospital. And that is so exciting because that's the future. That's what it should be. It's like.com for a first outpatient experience. Maybe they go to the help desk. The help desk will have a QR code, but this happens today. Already in some places you have this QR code and then the patient basically scan it and then there's a conversation happening with the person at the help desk. Then they know they can download this app that they will use for the rest of the medical staff because sometimes the staff is not equipped or doesn't know about this app. Of course, sometimes it's the first time they discovering somebody who is deaf hard of hearing. But you will have this app that is provided and supported by the institution, right? And we believe this to be the right approach. It's a balance between you bringing what you need, but also the institutions of being equipped. So there's a dance between accessibility and autonomy.


Carrie: [00:40:27] Yeah. And I think that if especially in the field of speech and hearing or audiology or ENT this should just be something that would be available and just on. And we should be asking each one of our patients like would you like to have captioning turned on? And by downloading the AVA app onto an iPad, they could have it accessible within moments.


Thibault: [00:41:00] And what's interesting is that for everyone who says that they had a terrible experience at the hospital, this can end now. And there's two levels of accessibility, right? There's one that is accessibility you bring yourself. Right? It's like when you bring your husband, when you bring like a friend to help the translation, like this is not perfect accessibility, but this is a working accessibility. Obviously this is not to encourage and to kind of call the gold standard. AVA is the same. It's like you bring your captioner with you to make sure this is working for you and on top of it you can, if you want, pay for a scribe, which is a professional captioner to make sure that whatever is coming out of the tool is not AI fully. If you really need a super high quality situation in this situation now, if you come to this hospital, it might be that if you're recurring patient or as you go and then people realize that you're using technologies to accommodate the conversations, they actually will equip themselves with a good standard of accessibility. And that might take more time, which is understandable. But in the same time, it is doable today to solve most of your accessibility issues. And I think a lot of people have a hard time realizing that the day to day can change instantly.


Carrie: [00:42:21] Yeah, no, I hope people who are listening today, if they take one thing from this, is that they have the access and the tools right in front of them in order to do something better for their patients and individuals that they see every day in their those that were.


Thibault: [00:42:41] Thought for them. And from that perspective, the device, I would say the deaf hard of hearing eyes.


Thibault: [00:42:49] Yeah.


Carrie: [00:42:50] So this was a great conversation. But is there anything that I didn't ask you that you would like to share? That I missed.


Thibault: [00:42:59] Well, I mean, I think there's a there's a lot of topics we could talk about. But I think the you know, overall, the idea is that change is now and is in your hands. And there's a time for complaining and saying how broken things are and there's a time for getting your hands dirty and actually giving it a try to all the things that are being sort of created around you. Um, but now what works for other people may not work for you and where other people have stopped at and it could be a situation where people just feel content with, you know, simple automated solutions. You can actually get the flexibility you deserve and you want. And this is really something that, you know, we find ourselves, as I would say, accessibility professionals like you are as well. Um, always playing the role of coaching and helping people feel confident and secure in the society that they didn't really let them feel this way or didn't make it easier. And sometimes they do, and they teach us a lot. But part of our work is also to say, No, you can do it, you can be autonomous yourself. You can take back the reins of your own accessibility and and actually make it happen.


Thibault: [00:44:12] And when you do this fight and this advocacy, I might say other people will thank you because you've made this, you know, hospital that you went to a few times accessible by just raising your voice, being sure you were loud and clear. When you say I need accessibility. So my only last word would be around. Advocacy is self advocacy is absolutely paramount. It doesn't have to be boring. It doesn't have to be, you know, a wall of issues. You can make it sexy. You can make it easy. You can show to people that advocacy is not you telling, hey, you're not being legal and not being compliant, not always sort of bringing the stick. Of course, this is in the backdrop. The stick is important, but you can also also bring the carrot and you can say this is something you can solve easily and we can end today if we just have a bit of a motivation to do so. And so that's what AVA is audio visual accessibility. It's near. It's in your hands. When you download the app and we help you get there.


Carrie: [00:45:13] Well, that was a great way to close our conversation today, and I really appreciate you being a guest and in the show notes, I will link the AVA website so people can link to that and explore all of the different options that you have. And like you said, they can go to wherever they download their apps and find the easy.


Thibault: [00:45:35] Yeah.


Carrie: [00:45:36] Yes. And I also link to TED Talk because I thought the TED talk was just amazing as it went back into your backstory and how you really got to the point of making a difference and actually getting action out of your anger, I guess, in that sense and putting it to good work. So again, thank you for being a guest today. Listener Thank you for listening and please share the EmpowerEAR AudiologyAV podcast with anyone that you think this would be helpful for and we look forward to you coming back with our next episode.


Announcer: [00:46:13] And this has been a production of the 3C Digital Media Network.



Episode 54: empowEAR Audiology - Donna Sorkin


Announcer: [00:00:00] Welcome to episode 54 of Empower Audiology with Dr. Carrie Spangler.


[00:00:15] Welcome to the empowEAR Audiology Podcast, a production of the 3C Digital Media Network. I am your host, Dr. Carrie Spangler, a passionate, deaf and hard of hearing audiologist. Each episode will bring an empowering message surrounding audiology and beyond. Thank you for spending time with me today, and let's get started with today's episode. Before we get into today's episode, I would like to share a little background about today's guest. I have Donna Sorkin with me today, and she is the executive director of the American Cochlear Implant Alliance, which is a national organization devoted to expanding access to cochlear implantation for all who may benefit. She has a long career in advocacy for people with hearing loss at for profit and nonprofit entities. She has had a cochlear implant for over 30 years and brings a personal experience and enthusiasm to her work in the field. She was previously the executive director of two organizations Hearing Loss Association of America, which is an organization mainly for adults, and the Alexander Graham Bell Association for the Deaf and Hard of Hearing with a focus on children. Ms. Sorkin has served for 11 years as vice President, vice president of consumer Affairs at Cochlear Americas, where she led public policy initiatives and other activities aimed at the broad life needs of cochlear implant users, including insurance coverage, habilitation for children and adults, and educational needs of children with cochlear implants. She has served on federal, corporate, and university boards, including the US Access Board, which she was a presidential appointee and the National Institute on Deafness, which is part of the National Institute of Health Advisory Boards. She holds a master's in public policy from the Kennedy School of Government from Harvard University. So, Donna, thank you again for being a guest. And I'm so honored to have you today.


Donna: [00:02:37] It's great to be with you, Carrie. I'm honored to be part of your program.


Carrie: [00:02:43] Well, I was trying to figure out when we met Donna, and I feel like it was a conference many years ago and we had dinner. And I want to say it might have been with another Donna. With Donna Smiley. Do you remember that?


Donna: [00:03:00] Yeah, I remember when I met you. I think it was actually with Cheryl DeConde Johnson.


Carrie: [00:03:05] Oh, it might have been.


Donna: [00:03:06] You're right that it was at it was at another meeting. And I remember eating outdoors with you. That's what I remember about it. And I can't remember what what conference it was, but that's definitely when we met and Cheryl introduced us. And so I've known you ever since and admired your your contributions and the way you support children and enhance what all of us know about hearing loss and growing up with hearing loss.


Carrie: [00:03:39] Well, thank you. I'm so honored to have you today. I wanted to take a deeper dive into a couple of topics with you because you have such a wealth of knowledge. And first, I want our audience to be able to hear a little bit more about your personal journey of getting a cochlear implant, because I feel these stories are important to share for our listeners who may be considering this path or even professionals who are guiding our patients. And then I also, after we kind of talk about your personal experience, we'd love to take a deeper dive into your professional experiences with the American Cochlear Implant Alliance. So how does that sound?


Donna: [00:04:19] That sounds perfect.


Carrie: [00:04:21] Alright. So do you want to start a little bit about your personal hearing journey and how that started for you?


Donna: [00:04:28] Sure. Um, actually, my experience with hearing loss started before I noticed that I had a hearing loss because I come from a family of people who were hard of hearing. That's what we used to always call it. We would say somebody was hard of hearing even if they were audiologically deaf. And so my paternal grandmother was quite deaf, you know, and and and in those days, the the amplification was a big box that she would wear inside of her shirt with a, you know, a lot of wires. And I don't know what her audiogram looked like. I just know that in the time that I knew her, she really didn't communicate very well. And we we sort of ignored my grandmother. It was it was kind of sad and and she was a wonderful cook. And she would busy herself in the kitchen, you know, cooking for us. And then growing up, my father's hearing deteriorated. And I do have his audiograms. So I, I know that he had a, a moderate to profound hearing loss and, and probably would have been a candidate for a cochlear implant. He he wore hearing aids the entire time that I remember him. So I grew up with with having experienced that and in two important adults in my life. My dad ended up Having to retire when he was 52 years old because he couldn't do his job anymore. And that was prior to the ADA. So there were no accommodations for him. He was an economist and he worked for the Department of Defense. And part of his job was to go to congressional hearings and present the budget needs for the Department of Defense to the Hill, to Congress people. And it became extremely difficult. And I have to imagine traumatic for him to do that because he was less and less able to hear what was going on. There was, you know, no assistive listening devices, no captioning, no accommodations for somebody at that time. And so he he retired. And at the time, this is actually kind of an interesting anecdote that I just thought to share because it shows how much things have changed or maybe not changed. At the time, we all thought he was retiring because he had previously had a heart attack and we thought that he was was concerned about his blood pressure and the demands of his job and that that's why he had retired on a medical disability at age 52.


Donna: [00:07:34] And it wasn't until much later, until after his death that my mother shared with me that the reason that he had, in fact, retired was that he couldn't hear and he never wanted to discuss that with anyone. And so we didn't realize, you know, what was going on. And when I when I found that out from from my mother, I shared it with my sister and my husband. And I said, you know, why did you think Daddy retired? And they they all said the same thing. Oh, because of his heart related issues. So although they didn't specifically say that to us, it was what we took away. And so it was a measure of his embarrassment, his unwillingness to talk about his hearing loss and how it affected his life and in very important ways. And he always was proactive. He you know, he was always he always wore hearing aids. He always tried to hear the best that he could. But he was limited both by the technology at the time, which, of course, is improved and by the fact that he did have a profound loss. So that's how that's what I grew up with. And I was actually tested in elementary school. We used to test children regularly in elementary school, and we used to test out to 8000, which we don't do anymore. So in, in when they when I was tested in elementary school, I would be normal through 4000. And then they would pick up a hearing loss after 4000. And so I had I that's what I grew up with. And in those days, we didn't think about that kind of hearing loss. We didn't we didn't do anything for a child. So I would, you know, just went on my merry way and no one really said anything to me about it. And then when I was probably in college, I started to have more difficulty hearing and I would always place myself at the front of the classroom, at large lectures. And then when I started to be in the workplace, I started to have more difficulty. And I remember one of the places where I worked. They were really nice about, you know, what do you need, what do you need?


Donna: [00:10:13] And so they gave me an amplified phone. Um, someone that I really liked, used to take notes for me at a meeting to make sure I didn't miss anything. Um, and then this was before I got into this field and I was working in public policy issues, and I was often giving talks to large audiences. And so I had tricks, you know, And one of my tricks was I would get off the podium and walk into the audience to take questions so that I could see and hear the person asking the questions. And people thought it was really very interactive and oh, she has a great style of presenting and interacting with people. Um, but I was really just getting close enough to be able to respond to questions appropriately so, So that's what I used to do. And then, you know.


Carrie: [00:11:09] Just for one second, at this point in time, did you have hearing aids or when did you actually get hearing aids or you were still navigating and coping at this point?


Donna: [00:11:21] Not yet. Probably a little bit after that. Um, I, I bit after that I got hearing aids and I actually started to use an FM system which was actually in meetings and stuff was the most helpful for me or in a noisy place, you know, I would put a FM mic on someone to help me hear so that that was something I would do and I knew where to place myself in the room. So I was doing some things. And, um, honestly, this was before digital hearing aids. So I was using analog hearing aids and I had a very steeply sloping audiogram and it very difficult to fit. Um, and I also never did well with loud noise. And so I honestly tried to use hearing aids but did not get much benefit from them. And it was painful for me, you know, because I'm using these, these analog hearing aids with a very steeply sloping audiogram. Um. So not not much benefit. And so I was you know, I was really I was really struggling. And I didn't I didn't know what I was going to do, whether I'd be able to continue to work. And so this was around 1992. And so my wonderful audiologist at the time who I've spoken about many times, her name is Susan, and she's still practices in Rockville, Maryland. She was my audiologist and she said to me, Donna, I've done everything I can for you and you're still not doing very well. And I would like you to just explore a cochlear implant. And she gave me the names of some patients of hers that had gotten a cochlear implant. So she gave me just a very gentle nudge, you know, go, go look at this. And she did it just right. You know, it's just it's just what you want someone to do. You don't want to be aggressive about it. You don't want to say you're at the end of the line. You know, you just want to say you're not doing as well as I think you could do. And so that's what she did. And and so then I had actually a really wonderful internist. And remember, this is before the Internet where we could go in and find out where to go before the American Cochlear Implant Alliance and where you could go on our website and figure out where there were clinics that did this.


Donna: [00:14:15] So my internist did the research for me. What a great team I have. I had a great audiologist and a great internist. And so he figured out where to go. And I was living and still am living outside of Washington DC. And the place you went at that time was Johns Hopkins. You know, that was the main clinic in the in the region, in fact, the only clinic in the region. And so he he called he talked to them and he said, okay, this is where you're this is where you need to go to get evaluated. So that's what I did. And that was in October of 1992. And when they tested me, you know, you're always tested and best aided condition then and now. So that means with your hearing aids on um, I, I was able to understand 4% of words and sentences which is guessing. 4%. Right. That was pure guessing. Yeah. So, so what that meant was, if I couldn't see your face and I was so very good lip reader, I didn't know what you were saying. And I obviously couldn't use the phone. And life was pretty difficult for me. So I went forward very quickly, my first appointments mid-October, and I had my surgery on December 1st. Wow. Yeah, I moved really fast because because I had decided once I saw people who had them and realized how well people could do with them, I decided, why wait? You know, so and at the same time, I was taking I had been selected for the to be the executive director of what was then called self-help for hard of hearing people. But it's now Hearing Loss Association of America. So I did those two things at the same time. I started my new job on January 4th and was activated with my CI on December 21st after having my surgery on December 1st and we were building a house. Oh my goodness. That is a lot going on at once. A lot. Going on. Oh good stuff. It was all good. So thinking about.


Carrie: [00:16:35] So you said December 21st you were activated then, is that correct? Yeah. And so what was that like as far as adjusting from a kind of somewhat using a hearing aid or a hearing aids to getting a cochlear implant and getting activated at that time?


Donna: [00:16:53] Yeah. So, you know, right away what it gave me was sound awareness, which I didn't have before, you know, So the clarity wasn't there yet. Um, and things sounded a little bit off, you know, I recall things seeming. Um, out of sync. You know that what what would see on the lips was different from what I was hearing. But my husband right away remarked that he could just start talking and I would look at him, and in the past he'd have to tap me to get me to look at him when he talked. So that was that was a benefit right away. And I, I started to be able to have much more assistance with lipreading. I was still lipreading at that point, of course. Um, but it was, it was much I was getting much more out of what people were saying. It wasn't so hard and I didn't have to get repeats, you know. And my mother remarked, um, when I came home from my activation, she came over and we were sitting on the couch talking and she started to cry. And and I said, Well, you know, why are you crying? And she said, I just never thought it would work. I didn't believe it would do this. You know, she she noticed right away that it was much easier for me to understand what people, what she was saying and that I didn't have to get repeats.


Donna: [00:18:33] And it was it was So that part was different right away, you know, that I just had more support for lipreading  and then then over time. You know, And none of this happens immediately. Not now, not then, but over time. Everything just fell into place. And by the time I got a second sound processor, it was at the time when all of the technology was evolving quite rapidly and improving. So my first sound processor was a box, you know, as was my second. My second one was too, but the second one had much improved sound processing capabilities and it huge difference for me. And within two weeks I could talk on the phone, which I which I had not really been able to do with, without a lot of, you know, support and stuff. So, so what that meant was I could understand speech without seeing your lips. And that happened with, with the change in, in the external processor, really important message for anybody that's thinking about this or thinking about it for a family member that the improvements that occur in this technology mostly happen on the outside. You know, And so in the time that I've had this, which is 30 years, I've had seven sound processors.


Donna: [00:20:14] Wow.


Carrie: [00:20:15] And I'm sure everyone brings. New.


Carrie: [00:20:20] Bells and whistles and ability to improve hearing in different situations. But is there any switch that you were like, Oh my gosh, this is kind of a big, you know, game changer for me?


Donna: [00:20:36] Yeah, there was, um, I think probably around the fourth or so sound processor that I got. Um, had a bigger grab of sound. And so I could hear at a that sounds that were at a distance more. Um, and that was a big difference. You know, I could hear people in another room, I could hear environmental sounds that I hadn't ever been able to hear before. So that was a big one. Um, you know, the, the Bluetooth is kind of cool as well, you know, being, being able to talk on the phone and have the sound come right through the Bluetooth technology is nice. I still use the Telecoil if I have a landline phone. Um, but as you know most phones or most people are using mobile phones now, so mostly you're using Bluetooth then but, but for example in a, in a theater or something that's still using a system that connects to hearing technology, whether it's a hearing aid or a cochlear implant, people are often relying upon a telecoil and the phone that sits on my desk is a landline phone. That's our our phone system for the office is a landline phone so I can switch the t-coil on for that and it works quite nicely for that. So I think what's been really nice with the technology is it's it's evolved with what's gone on in technology and society as a whole. And so we, we benefit right along with that. And for example um, Apple for their telephones, we've worked with all the companies so that you can stream directly from your phone into your technology, you know, if you want to. I still like to use the phone clip because sometimes I like to put my phone down. I'm working on the computer and I'm talking to someone and I want to not have to be holding the phone. Um, but it's, you know, it has that the, the improvements. I've been really fortunate to experience them and see them firsthand. And I'd like to assure people that you should never wait because the most of the improvement occurs in the external devices. And so you, you know, you get the internal device and I don't expect to ever change my internal device. You know, I have one of the early internal devices, but it's designed to allow these kinds of improvements to work with it. And I think the the all the cochlear implant companies design their technologies with that in mind.


Carrie: [00:23:41] Yeah. Which is a great commitment for. All of the companies to have the end user that we can all benefit from that. And so I have I want to go back to one question to when you first got activated, and I know you said the sound awareness was one of the first things that you really recognized. Was there anything that you did like informally or formally to help with getting used to the cochlear implant? The sound.


Donna: [00:24:14] Um, so I think, you know, I think.


Donna: [00:24:17] Initially you mean how did it how did I get used to the sound? Is that what you mean?


Donna: [00:24:21] Yeah.


Carrie: [00:24:22] So I know, like, for me, I ended up doing training, some auditory training and just different things like that to get used to hearing more with an electronic signal rather than an acoustic signal.


Donna: [00:24:37] You know.


Donna: [00:24:38] In those days I they didn't actually. Give therapy to adults. And I asked for it and.


Donna: [00:24:50] They said.


Donna: [00:24:51] I still remember them telling me your life is your therapy.


Donna: [00:24:59] And so I you know, I was sort of push on. And I said, well, you.


Donna: [00:25:03] Know, you can listen to books on tape and stuff like that. So my son, who at the time was a little kid, when was, you know, what can I do? What can I do? You know that? And so he used to read me books.


Donna: [00:25:18] So he would be great on tape.


Donna: [00:25:21] But my my child. So he you know, he did that. And and I think I, you know, learning.


Donna: [00:25:28] To use the.


Donna: [00:25:29] Phone initially, particularly with the first sound processor, which didn't have the the depth and capability of the ones that came after I used to practice. And and my mom, who was so anxious for me to learn to use the phone, would would work with me on most nights. You know we would 10 minutes or 15 minutes. And you know, in the way you get the phone a lot of times is you, you, you work with someone that you're not embarrassed to, to make mistakes with and you pick a topic. So you say, you know, the topic today is blotch. And so you have a known set of topics that you'll be talking about. And so we did that, you know, and then if I, you know, would miss a word three times, then, um, you know, she'd figure out another way to, to say it for me. Um, I mean, now there are materials that we give people and there are some really nice applications, both for phones and for computers. Angel Sound is one I always tell people to use that I really like the CI companies all have, um, materials that you can use. Um, I think I, I wish that more adults did have access to, um, to professional therapy. And we, we actually promote that and have materials on our website that encourage people if they feel they would like it to look for a speech language pathologist or someone who provides auditory therapy. Adults typically don't mean a lot. Some people might, but I think everyone could benefit from someone to help them initially. Um, if only to say here's some ways to practice. You know, here's the things that you, you can do to, to practice. And so my practice was, was in fact listening to people because I was, I was in a workplace setting. Um, and then, you know, having my son read me books and, um, you know, there really wasn't, there wasn't that much that we were doing for adults in those days. There really wasn't.


Donna: [00:27:56] Yeah. But no, that was a great.


Carrie: [00:27:59] Way that you kind of figured it out for yourself to habilitate or rehabilitate your hearing and by listening with your mom and your son.


Donna: [00:28:11] Yeah. And and I did use assistive.


Donna: [00:28:14] Listening devices in concert with my implant. Um, and at the time, I was working for an organization for people with hearing loss. So we used. An induction loop for board meetings and staff meetings. Et cetera. So that was helpful to me as well. I had that, you know, the sound coming from the speaker directly into my sound processor. And and that's definitely a better way to listen, you know, if people are going to the theater or whatever and and they don't have captioning which some theaters do have or they don't have an assistive device or the assistive device isn't working very well, which sometimes happens. Um, but it is a good way to get a cleaner signal into your technology, whether it's a hearing aid or a cochlear implant.


Donna: [00:29:16] Um.


Carrie: [00:29:17] Yeah. So thought would kind of go into some of your professional experiences as well. You were talking about being at a board meeting and it being looped and using assistive technology. So I thought that was a good segue . Anyways, I know you've been a fierce advocate in both the nonprofit and the for profit arena. Can you share a little bit how you got started in these different arena before coming to which we are going to get deeper into in a moment?


Donna: [00:29:49] Well, you know, honestly.


Donna: [00:29:52] I fell into it literally. I thought I would do it for a few years and go back to what I was doing. I didn't think that I would stay in this for most of my adult working life. Um, so I took the job at what was then called self-help or hard of hearing people. And it was at a time when this technology was was really rolling out, you know, and so it, it, it was sorry, my phone went off. Okay.


Donna: [00:30:35] Did you hear that?


Donna: [00:30:36] I did. But it's all good. It's real life, right? We both heard it.


Donna: [00:30:44] It came into my technology, so I just turned it off. Um.


Donna: [00:30:52] What was I saying? I was talking.


Donna: [00:30:54] About You.


Carrie: [00:30:55] Got into.


Donna: [00:30:56] Self-help? Yeah.


Donna: [00:30:57] Yeah. Being in a place.


Donna: [00:30:59] Where I could promote cochlear.


Donna: [00:31:00] Implants.


Donna: [00:31:01] You know, and it was an early time in the rollout. And at the time there was just one company and other technologies were, you know, about to, to roll out. But it was also a time when we were promoting assistive listening devices. And and it was also right after the passage of the Americans with Disabilities Act, the ADA. And so that provided a lot of a lot of mechanisms for us to promote access for people. And I served, as you said, when you read read my bio, I served on the access board, which is a federal agency that looks at access for people with disabilities, all disabilities. And so the ADA had been passed and we were looking at what the regulations should be to enhance access for for people. And, and being that I was deaf and used….inaudible..Did in in acoustics, in classrooms, in assistive listening devices, in alerting devices, in hotels and other places so that when you go to sleep at night and there's a fire in the hotel, there's an alerting device to let people know that something's going wrong. So it was really exciting for me to have that opportunity early on after the ADA was passed and and be part of that. And then the other thing that was going on at the time was we were rolling out cell phones as you know, them today. Digital telephones were coming out. And up until then, the the mobile phones that we had were analog and they didn't interfere with hearing devices. But the the first digital wireless phones that came out, if you were standing near them and wearing either a hearing aid or a cochlear implant, you got a big buzz. And so we were very involved in those issues and worked with the Federal Communications Commission to really force. And that I have to say, it was it was they did not want to go along with this, but to get the manufacturers of cell phones to be thinking about how they were going to harden their devices so that people who were using hearing technology could use them. And and there was a rating scheme that we initiated so that if you were going to get a cell phone, you could look on the box and see to the extent to which it was usable by someone who was using hearing technology.


Donna: [00:34:19] So that was exciting to be involved in that and to be in a position to affect the availability and usability of those wireless phones then and now. And and so I have to say honestly that I, I don't find that my cell phone is particularly compatible in Telecoil. Um, it, you know, I, it's not an area that I work on anymore, but I'm not sure how successful we've been in the long term. And I don't use my cell phone in Telecoil. I don't have to because I have Bluetooth or I can hold my phone up and and couple acoustically, although I prefer to use some other mode of getting the sound in directly. But we, you know, we were involved in that. And so it was really, you know, it was really rewarding for me to see, um. Our advocacy in combination with our governance system in this country can really provide appropriate access for people with disabilities. And that was true also for children. You know, with the rollout of IDEA and thinking about acoustics in classrooms, which was another issue that that I was involved in and in terms of how we were going to include acoustics in classrooms as part of the ADA. So, um, you know, there's, there's some of the things that I was really excited to be involved in and to be able to affect.


Donna: [00:36:10] Yeah.


Carrie: [00:36:11] Well, I'm grateful that you were involved in all of that because I personally use all of the things that you were advocating for, whether it's acoustics or like you said, Telecoil or making sure phones are more compatible and things like the fire alarms and hotel rooms, like things that people don't think about unless you're really in the shoes of someone that is living that life. And just to kind of go back how I feel, like you said, you fell into it. But it takes a lot of courage. And to get to the point where you can advocate for what everything that you're advocating for as an individual that's deaf and hard of hearing. How did you get to the point where you were like, Yes, I'm going to work for these agencies and government that is advocating so strongly?


Donna: [00:37:06] You know, I have to think.


Donna: [00:37:07] That the experience that my father of my father and even though I didn't know that he at the time that he had retired because of his hearing loss, I knew how he struggled. You know, And I, I recall being.


Donna: [00:37:27] I'm in a store somewhere.


Donna: [00:37:29] And he didn't understand what people were saying. And and at that point, I had nearly normal hearing. So I would help him and support him. So and I certainly remembered how my grandmother struggled, you know, and how left out she always was. Um, and for me at that point, you know, had I not received a not had the ability to get a cochlear implant, I wouldn't have been able to continue to work. And an environment in which people use spoken language and listening and talking. I would have had to have done something different. I would have had a very different life. Um, so, you know, I really did just fall into it. Carrie, I, you know, I, I'm a fast learner.


Donna: [00:38:26] Um, and, and.


Donna: [00:38:28] What tends to happen when I'm in something new, I.


Donna: [00:38:31] I.


Donna: [00:38:31] I spend a huge amount of time just learning about something new, and I enjoy doing that. And, and so I, I learned a lot. I was lucky that I had people around me who were more experienced, um, in the, in the advocacy side of things. I did know government because that's what I was trained in. But, but not so much for disability, more related to urban planning and processes for particularly local government and states. So I had that experience that, that fueled what, what came afterwards. Um, and, and I think that helped me. I had very good training for my, for my graduate work, you know, So, um, that, and, and they also part of my graduate program was they taught us a lot about how you collect data, how you do survey research, how you interpret data and how you present it. And, and so that has always been a part of what I have done in this field. And so although I was I was.


Donna: [00:39:45] Trained.


Donna: [00:39:47] In terms of working in and for government, it definitely was transferable. You know, in terms of what I'm, I'm, I'm doing now. Um, I Feel like.  Also the fact that I grew up with this in my family and then experienced it myself.


Donna: [00:40:11] It gave me a window into what it was like and how important it was for for us, those of us that work in this field to ensure that people have what they need to have a level playing field.


Donna: [00:40:25] You know, and, and that's you know, that's kind.


Donna: [00:40:29] Of an underpinning of this country.


Donna: [00:40:31] And it's not.


Donna: [00:40:32] Necessarily the case everywhere in the world. I've worked in many places around the world. And some countries, they don't.


Donna: [00:40:41] Have that same perspective about ensuring that people with disabilities do have a level playingfield.


Donna: [00:40:49] And it's one of the the special things. And, you know, we have a legal system that supports that. And sometimes we we don't necessarily have everything in place to make it work the way it's supposed to. Um, and, you know, people sometimes say to me, you know, well, the laws are there. Why, why isn't it working? The laws are the first, you know, that's kind of the first floor. And then we have to come in and we have to enforce those and figure out how it is that we're going to make those laws work for children in school and wherever they go. And for those of us who are adults.


Donna: [00:41:29] Um, I'm a.


Donna: [00:41:31] Huge fan of theater.


Donna: [00:41:33] And, and.


Donna: [00:41:33] I live outside of Washington and my husband and I love the Kennedy Center and they are so great at accommodations for for people with disabilities.


Donna: [00:41:46] Um.


Donna: [00:41:47] The Kennedy Center has an assistive listening device that's in place with somebody who's staff sit at every single performance. You pick up your assistive device and then every show that they have has at least if it's a major show, there's at least two showings that have captioning on the on the stage. And now the latest thing they have is if you go at a time that they're not going to have the captioning on the stage on the box we call it, they'll have a have an.


Donna: [00:42:25] Ipad on your seat. And you.


Donna: [00:42:28] You can have captioning.


Donna: [00:42:30] At your.


Donna: [00:42:30] Seat on the iPad.


Carrie: [00:42:32] It's amazing.


Donna: [00:42:33] It is amazing. And and you know.


Donna: [00:42:36] I don't know that there's any place else in the world that is so accommodating in that way. If somebody uses sign language, they have ASL performances for people. I notice they have had had.


Donna: [00:42:50] A cued speech performance.


Donna: [00:42:53] At the show that we saw last week. We saw Wicked. We took our my niece to see Wicked and. We were at a show that was a caption show, but they also had, you know, other forms of communication access. So, you know, it's been really amazing for me to have been part of the rollout of that, to help everyone and to enjoy it myself.


Donna: [00:43:25] So I think that's one of the exciting.


Donna: [00:43:29] Things that that I've been that I've been involved in that I'm very proud of.


Donna: [00:43:33] To contribute to.


Carrie: [00:43:36] Well, you should be very proud. First of all, and I'm grateful for all of that, too. And I love how you were able to build your personal experiences of your own family and your own journey and put it to practice and passion for everything that you do. Because I don't think anything gets done unless you have somebody that is very passionate and purposeful behind what is going on.


Carrie: [00:44:04] So obviously that is you and that is kind of a great way to talk about the American Cochlear Implant Alliance. I wanted to ask you, you have been a starter of that Alliance, but how did this idea come to fruition and how did it get started?


Donna: [00:44:24] Yeah, that's a really good question.


Donna: [00:44:27] I think for some time, people in the field, professionals in the field specifically felt that there wasn't enough focus on cochlear implants and the organizations that focused on hearing loss, the the ENT organizations, audiology organizations and the organizations for speech language pathologists, it get lost. You know, CI is a small part of what all of those professions that I've just mentioned do and hearing aids tend to be the dominant hearing technology that we think about. So it was felt that there needed to be. An organization that just focused on cochlear implants. And so the organization began with a group of of leaders from across the continuum of care. And it was always the case that this organization had physicians and audiologists and SLPs and educators and psychologists. So people who work with children and adults and they all came together and they. They they incorporated as a nonprofit organization. They wrote a mission statement which still stands today that basically focuses on improving access to cochlear implants for for people who need them through research, advocacy and awareness. So that's still our our mission statement. We very much are across those three areas.


Donna: [00:46:18] And and we didn't really know how that was going to play out. We had a mission statement and we had.


Donna: [00:46:25] People who knew that things needed to happen to improve access. Um, so that was all going on. And then.


Donna: [00:46:35] IvLeft the company that I was working for in September of 2012 and.


Donna: [00:46:44] Applied for the position.


Donna: [00:46:46] Along.


Donna: [00:46:47] With a number of other people. And I was selected and began in, in mid November of 2012. So we kind of got started about then, you know, some of the groundwork had been laid. We had a website that we really greatly expanded. We didn't have we weren't due to have a meeting until 2014. So we very quickly put together a small meeting in 2013. And then since that time we've had a conference every year and it's sort of a unique conference because we focus on clinical research and CI and things that support that. There's really no other conference that looks at clinical research and has all of those.


Donna: [00:47:34] Components in it.


Donna: [00:47:38] And we are we have funding that comes from our memberships. And right now we have over 2500 members.


Donna: [00:47:49] Mostly clinicians.


Donna: [00:47:50] But also individuals who have cochlear implants or parents or family members and military members. So we you know, we have an increasing number of of of.


Donna: [00:48:03] Those.


Donna: [00:48:04] Categories of people who care about CI as well. And and then what we began To be very involved in was the advocacy side of this field.


Donna: [00:48:17] And interestingly, when I first came.


Donna: [00:48:21] The Affordable Care Act had just been passed and was rolling out.


Donna: [00:48:25] And we were very concerned at that time that the ACA marketplace.


Donna: [00:48:30] Plans.


Donna: [00:48:31] Might not include cochlear Implant coverage on it.


Donna: [00:48:34] And so we this tiny organization at at this point with 50 states, with multiple programs in each state on the marketplace. And I was like, gosh, how are we ever.


Donna: [00:48:51] Going to do this?


Donna: [00:48:52] And so we came up with the.


Donna: [00:48:54] Idea of having state champions.


Donna: [00:48:57] And so that was the first thing we thought about was state champions, was having people who we could train on how to, you know, go and look at these plans and the state marketplace and and then know how to work with their states to ensure that the coverage was there for for cochlear implants.


Donna: [00:49:20] So that was the first thing we did.


Donna: [00:49:22] On the advocacy side. It was it was so cool.vThat we had people who who had never done advocacy before but wanted to make sure that their patients had access To Cochlear implants. So we started with that and then we we got into, you know, a number of issues.


Donna: [00:49:45] That were important. We've been very.


Donna: [00:49:46] Involved in the.


Donna: [00:49:48] Early Intervention Act and the rollout of those services for for children and.


Donna: [00:49:56] Families.


Donna: [00:49:58] We've been very involved.


Donna: [00:49:59] In.


Donna: [00:50:01] Medicaid at the state level to ensure that those services cover both children.


Donna: [00:50:06] And adults. And we're.


Donna: [00:50:08] Actually working on a number of states right now that currently don't cover cochlear implants in adults under.


Donna: [00:50:13] Medicaid.


Donna: [00:50:14] So we're working to expand that all.


Donna: [00:50:16] All states covered children.


Donna: [00:50:18] There's been some issues with the way.


Donna: [00:50:20] Children are covered.


Donna: [00:50:22] And I think one of the the successes that I'm very proud of relates to the expansion of coverage under Medicare. So Medicare has covered cochlear implants for a long time, but the problem was.


Donna: [00:50:39] That the.


Donna: [00:50:40] Coverage didn't keep up with private employer.


Donna: [00:50:45] Plans. And so very.


Donna: [00:50:46] Very early on in the organization's history, we decided we wanted to work on that and we were able to get the Centers for Medicare and Medicaid Services to agree to.


Donna: [00:50:59] Cover.


Donna: [00:51:00] Cochlear implants.


Donna: [00:51:02] At a in a different way and an expanded.


Donna: [00:51:04] Way for individuals who are part of a study that we ran. And so we ran That.


Donna: [00:51:11] Study took a long time and then finally in.


Donna: [00:51:15] September.


Donna: [00:51:17] Of last year.


Donna: [00:51:20] We we did get the expanded coverage under Medicare, which was huge.


Donna: [00:51:26] It just makes it so much more available for people 65 and up who need this technology but have been prevented from getting it because they had too much hearing, you know.


Donna: [00:51:40] Which was, um, you know.


Donna: [00:51:44] Just not enough to be able to, to talk on the phone or negotiate the world. So we work on a number of issues like that. We work on awareness.


Donna: [00:51:56] We've recently started giving. Webinars for for parents and for adults and.


Donna: [00:52:06] Family members who want to learn more about particular topics.


Donna: [00:52:09] So coming up next Tuesday, we have a Tuesday talk, but we have these once a month on Tuesdays on different topics. So the one that's coming up is on the surgery, which Sometimes people have.


Donna: [00:52:24] Concerns about, and we record those and they're available at any time so people can come on.


Donna: [00:52:32] And and.


Donna: [00:52:34] Learn more and they're free and they're designed to be for a consumer parent.


Donna: [00:52:41] Audience.


Donna: [00:52:43] And are those do.


Carrie: [00:52:44] You need to be a member of ACIA to participate or hear the Tuesday talk?


Donna: [00:52:51] No, they're open to anyone. Okay.


Donna: [00:52:53] We, of course, always love for everyone to be a member, but we don't ask. And honestly, we don't care. We're just really trying to get the information out as broadly as we can. And we also try to reach the professional hearing health community that is outside of the CI world so that they know to refer a patient. And just like I was so lucky to have had Susan, this was so many.


Donna: [00:53:28] Years ago three decades ago. Just think she she realized.


Donna: [00:53:32] At that time she wasn't.


Donna: [00:53:33] Involved.


Donna: [00:53:34] In providing CI services but she saw how much benefit they provided for her patients. And so she.


Donna: [00:53:43] She was the one I mean, I probably would have stumbled over it at some point, but she probably saved me 3 or 4 years by pushing me in that direction. And so I you know, I feel like I had people who supported me early on so that I could.


Donna: [00:54:07] Have.


Donna: [00:54:08] The benefit of this. And so we we try to reach.


Donna: [00:54:11] Those general.


Donna: [00:54:13] Practitioners so that people know to tell people that they could benefit from a different kind of hearing technology at this point. And even if they go in and have an  Evaluation.


Donna: [00:54:26] And learn that they're not right, then a candidate, I think it's important that people know that they have that hope if their hearing declines.


Donna: [00:54:34] That they have something that will allow them to get better rather than continue to get to get worse.


Carrie: [00:54:41] Yeah. And I know that.


Carrie: [00:54:42] You all of that information is very important. And ACIA has put together a variety of task forces to that have come up with pretty much some papers that individuals or clinicians can utilize too. Can you share a little bit more about the task forces and how that impacts that general hearing health care.


Donna: [00:55:11] Sure.


Donna: [00:55:12] And I should also say a lot of this is on our website.


Donna: [00:55:15] So if people want more.


Donna: [00:55:18] Information way beyond from what we're we have time to talk about today, Carrie. Our website is acialliance.ogr


Donna: [00:55:27] And we have.


Donna: [00:55:28] Most of what's on our website is designed for people from outside of the.


Donna: [00:55:32] World. So we, for example, have I mentioned.


Donna: [00:55:38] The the state champions who we provide support and training for and they work on typically things that are right within their own states, you know, so they assemble people to help them participate in state advocacy and passing laws and changing laws, etcetera. But we, for example, had a, um, a task force that worked a few years ago on therapy for children.


Donna: [00:56:20] So what what should that look like?


Donna: [00:56:22] You know, if you have a child with a cochlear implant.


Donna: [00:56:26] Um.


Donna: [00:56:26] How many years should they get.


Donna: [00:56:28] Therapy and what sort of person.


Donna: [00:56:31] Should a family be looking for to provide that therapy?


Donna: [00:56:35] So we have a guideline that that that task force put together.


Donna: [00:56:42] To provide guidance. And it's been very helpful to families.


Donna: [00:56:45] In terms of talking to insurance about how much.


Donna: [00:56:50] Therapy their child needs and insurance companies should.


Donna: [00:56:53] Cover it. Um, and then we.


Donna: [00:56:55] Have recently had four task forces that worked on candidacy for different populations. So there was a task force that worked on how you should.


Donna: [00:57:09] Determine candidacy.


Donna: [00:57:10] For  An adult with Bilateral deafness and for a child with bilateral deafness. So those task forces each came up with Guidance.


Donna: [00:57:23] And the pediatric one has been published and is on Our Website.


Donna: [00:57:28] And it's, um.


Donna: [00:57:30] It was a peer reviewed paper that appeared in ear and hearing, which is a scholarly journal and it's, it's open. We we paid to have it be open access.


Donna: [00:57:41] So that's.


Donna: [00:57:42] On our our website the one on adults will be coming out at some.


Donna: [00:57:45] Point in the not too distant future.


Donna: [00:57:48] And then we had task forces that looked at.


Donna: [00:57:52] Cochlear implants.


Donna: [00:57:53] In children and adults who have single sided deafness.


Donna: [00:57:58] So it.


Donna: [00:57:59] Used to.


Donna: [00:57:59] Be that we would provide SSD only to people who had.


Donna: [00:58:03] Bilateral deafness.


Donna: [00:58:05] But now we're recognizing the impact.


Donna: [00:58:08] That.


Donna: [00:58:10] Single sided or unilateral deafness has on a child's ability, for example, to to learn in the classroom. And we've discovered that children who hear only on one.


Donna: [00:58:25] Side have much more difficulty in in an educational setting.


Donna: [00:58:32] And in negotiating the world in general. So it's now.


Donna: [00:58:37] Become.


Donna: [00:58:39] Um, recognize that those.


Donna: [00:58:41] Children should get cochlear implants and they should get them.


Donna: [00:58:44] As early as possible. As soon as we identify that they have.


Donna: [00:58:51] Deafness in that ear. And there are some conditions in which that's quite common. If a child is born.


Donna: [00:58:58] With CMV, for example, unilateral deafness is.


Donna: [00:59:02] Is often one of the effects. And in adults, people sometimes.


Donna: [00:59:08] Either develop unilateral.


Donna: [00:59:12] Hearing loss from.


Donna: [00:59:14] Exposure to noise.


Donna: [00:59:16] Or disease or whatever, and sometimes it just happens and they they don't know why it's happened. Um, and adults often feel, um, very impaired by.


Donna: [00:59:30] Having hearing only.


Donna: [00:59:31] On one side.


Donna: [00:59:32] So that one as well. We have a.


Donna: [00:59:36] Guideline in terms of determining how to assess and manage somebody who has um, deafness on one side.


Donna: [00:59:47] So those are four that we've worked on very recently. And then a.


Donna: [00:59:52] New one that Carrie and I are working on.


Donna: [00:59:56] Um, we'll, we'll be looking at.


Donna: [00:59:59] Um.


Donna: [01:00:00] You know, what are the, the.


Donna: [01:00:03] The benefits.


Donna: [01:00:04] Of.


Donna: [01:00:05] Providing access to sound for children, you know, why is it beneficial and, um, you know.


Donna: [01:00:15] How can we have messaging.


Donna: [01:00:17] That allows the public to understand.


Donna: [01:00:21] Why that's important and we haven't really done a good job on that. I think people don't really understand why it's different to have hearing. You know, why isn't why isn't it enough to just provide a child with access to to sign language if if they're deaf? And so sorry. Um, that's the phone line for the organization.


Donna: [01:00:54] Um.


Donna: [01:00:55] But anyway, so.


Donna: [01:00:57] Um, you know, that's another example of something that where we have a range of people.


Donna: [01:01:03] Involved who.


Donna: [01:01:05] Understand.


Donna: [01:01:07] Um, the topic and, and Carrie and I actually are the.


Donna: [01:01:13] The task force chairs for putting that together. And we're going to bring together an illustrious group of professionals who work with children.


Donna: [01:01:24] And come up with what we hope will be messaging that better explains.


Donna: [01:01:30] The.


Donna: [01:01:31] Benefits of having access.


Donna: [01:01:33] To sound. I think I've said that right, Carrie, you.


Donna: [01:01:36] Should chime in because.


Donna: [01:01:37] You're part of this.


Donna: [01:01:39] No, no.


Carrie: [01:01:40] I think you said it well. And just again, having a message that really supports, um, what, you know, the access to sound and how that access to sound can really help with language. And that is, you know, something that we want to ensure that others are fully informed about so that families who are making these decisions have all of the knowledge that they need in order to know what's best for their own child. So whether that's a spoken language or a sign language, having that information is going to be critical for our families. And like you said, we haven't had a, a, um, I guess a clear message. So coming up with a clear message is going to be important. And hopefully I didn't lose you, Donna. I don't know if it was my end or your end.


Donna: [01:02:42] You're back. I'm back. I think.


Carrie: [01:02:45] I don't know where. I know. I got frozen. Could you still hear me? Or was it.


Donna: [01:02:51] Was it gone?


Donna: [01:02:53] Did you Until just now.


Donna: [01:02:55] You were. You were Your face was frozen. And I wasn't. I wasn't hearing.


Donna: [01:03:00] You.


Donna: [01:03:01] Okay, well, maybe.


Carrie: [01:03:02] We'll try to. I'll just try to summarize. I think I was just saying, having a clear message for families, whether they are using a visual language or a spoken language, having all of the information and having a clear message and information is going to be important. So that was kind of the reason this new task force was put together, and I'm looking forward to working with you on that one.


Donna: [01:03:30] Yeah, I'm and.


Donna: [01:03:31] I'm I'm looking forward to working with you as well. And it Carrie been so involved in the organization as, as a state champion.


Donna: [01:03:40] And and.


Donna: [01:03:41] Also we have another network for adults.


Donna: [01:03:47] And.


Donna: [01:03:47] Parents who are who have or have family members who have cochlear.


Donna: [01:03:53] Implants.


Donna: [01:03:54] So that we have messages that are coming.


Donna: [01:03:57] From.


Donna: [01:03:58] People who have first firsthand experience, just as I do and.


Donna: [01:04:04] Carrie does. And and it's so.


Donna: [01:04:06] Important that.


Donna: [01:04:07] People hear from us so that it's not professionals.


Donna: [01:04:14] Talking about this technology and the experience of.


Donna: [01:04:17] Having the technology.


Donna: [01:04:19] But it's it's also those individuals who speak for themselves. So we're we're grateful to have people.


Donna: [01:04:27] Like Carrie be involved as professionals and as people who understand the technology themselves. And I think that's what's really unique about the organization is it's one of the few, if.


Donna: [01:04:43] Not the only organization in the field that has professionals from across the care continuum and also from the recipient community as well. And I've been very excited to be part of it.


Donna: [01:05:01] From from the start and watch it grow and, and meet all these amazing people.


Donna: [01:05:09] That I have.


Donna: [01:05:10] Had the privilege to know and work.


Donna: [01:05:12] With.


Donna: [01:05:13] Over the over the  years. You know, it's funny, someone once asked me someone once asked me.


Donna: [01:05:20] You know, if I could not be deaf, would I prefer to not be deaf?


Donna: [01:05:27] And and I thought for a minute and I said, Well, but if I hadn't been deaf, had all these experiences that I've had in life, you know, all the people that I've met because I was deaf. But I'm certainly glad that I was able to get a cochlear implant so that I could hear


Donna: [01:05:49] And.


Donna: [01:05:50] And travel the world and be able to talk to people in different settings. So I guess I have the best of everything.


Carrie [01:05:57] You do.


Carrie: [01:05:57] And I'm just grateful that you have been with the American Cochlear Implant Alliance.


Donna: [01:06:03] from the.


Carrie: [01:06:04] Beginning, because I know it has grown to be such an organization that supports professionals across the hearing health care span, as well as consumers and families who are thinking about it on that journey. It's kind of a one place to get a lot of great information. And as you said, initially, we have a lot of great organizations that support speech and hearing or our needs, but they don't focus in. And so to be able to have one place where we focus in for a multitude of professionals and and individuals consumers is Such a benefit for for all. And then, like you said, for the advocacy piece as well as the informational piece and the research part of things. Having that dedication, you have a focus and that's what your focus is.


Donna: [01:07:03] Right? And it also provides.


Donna: [01:07:06] Us with a with a mechanism to support those larger organizations, which we do. So alliances in our name. And that means, you know, that we bring all of those other organizations together. We work very closely with all of them.


Donna: [01:07:22] Um


Donna: [01:07:23] Know, and, and try to make it so it's not competitive. But so it's, you know, it's supportive and we do things together with them.


Donna: [01:07:32] To.


Donna: [01:07:33] Everyone's advantage. So I think that's.


Donna: [01:07:36] The.


Donna: [01:07:36] The, the other really great thing about the approach that.


Donna: [01:07:39] We've taken to.


Donna: [01:07:41] Really try to collaborate with. A range of different organizations. We interviewed a bunch of different organizations recently for an update of our strategic plan, and we.


Donna: [01:07:53] Met with.


Donna: [01:07:54] The CMV Foundation and with hands and  voices.


Donna: [01:07:59] And.


Donna: [01:08:00] Consumer organizations, as well as the professional.


Donna: [01:08:03] Organizations. And it was really neat to hear.


Donna: [01:08:06] You know, what they thought we should be doing.


Donna: [01:08:10] And.


Donna: [01:08:10] How we're contributing to their work. So the experiment worked.


Donna: [01:08:17] I think, and I'm very proud of what happened.


Donna: [01:08:21] And it has flourished amazingly.


Carrie: [01:08:24] And yeah, as we kind of wrap up, is there anything that I missed that we didn't talk about?


Donna: [01:08:31] No. I think you really hit on everything, Carrie. You let us down a great path. And it's it was really fun to be on this with you. You're you're a great podcast queen. And and I'm I'm really glad I got to be part of it with you.


Carrie: [01:08:50] Well, I want to say thank you for being willing to be a guest on the empowEAR Audiology podcast and sharing your personal journey, your family journey, your professional journey, and all of the advocacy that you have done along the way. I mean, I know has helped me as an individual with a cochlear implant and with hearing loss and accessibility out there in the community. In the real world. A lot of it has to do with your passion and work that you have done on many different levels in your personal and professional career. So thank you for all of that that you have done to contribute to the field as well. And I also want to thank all of our listeners who are with us today and the EmpowEAR Audiology podcast. I encourage you to share this with others if you've enjoyed it and would appreciate if you have a moment to give a five star review because this actually helps others find the EmpowEAR Audiology podcast. So again, Donna, thank you for being a guest today.


Donna: [01:09:56] Thank you. It was great.


Announcer: [01:09:58] This has been a production of the 3C Digital Media Network.



Episode 53: empowEAR Audiology - Dr. Hilary Davis

Announcer: [00:00:00] Welcome to Empower Ear Audiology with Dr. Carrie Spangler.


Carrie: [00:00:14] Welcome to the Empower Ear Audiology Podcast, a production of the 3C Digital Media Network. I am your host, Dr. Carrie Spangler. A passionate, deaf and hard of hearing audiologist. Each episode will bring an empowering message surrounding audiology and beyond. Thank you for spending time with me today and let's get started with today's episode. 


Welcome to the EmpowEAR Audiology Podcast. Today I have someone with me. Her name is Dr. Hilary Davis and she is a pediatric audiologist at the Vanderbilt Bill Wilkerson Center. She received her Bachelor of Science from the University of Texas at Austin and a doctorate of audiology from Vanderbilt University. She is an educational audiologist providing services to several districts in the Middle Tennessee area. She also works on research studies at Vanderbilt, focusing on deaf and hard of hearing school age children. When not at work. You'll find her at dance class or hanging with her three year old and ten month old daughter. Hilary is the current past president of the Educational Audiology Association. Welcome, Hilary.


Hilary: [00:01:33] Thank you. I'm so excited to be here with you today.


Carrie: [00:01:36] I know I always love to interview my fellow educational audiologist on the podcast, but I thought before we got started into the meat of the podcast, I would ask you, how did you get into the field of audiology?


Hilary: [00:01:53] It's a good question, and I know people have lots of different answers about how they got into audiology.


For me.


Hilary: [00:01:59] I really went to UT Austin because I was interested in American Sign Language and they had a really good program for teachers, for deaf and hard of hearing teachers. But I took the intro to Communication and Sciences Disorders class. I just happened to take it and fell in love with audiology, the tech component and, you know, just really, really loved that aspect of it. And then once I did my doctorate and I did a school rotation, that was it for me. I wanted to be in the schools doing this. So it really it really puts together a couple of things that I like doing the audiology piece, the hearing piece, but then also working with others who are like the teachers who are working with children with hearing loss. So.


Carrie: [00:02:46] Well, that's a great story. I love how it kind of came full circle for what initially went into you. And then it really plays into everything that you do today, too. And you, in addition to all of the educational audiology services that you provide, you also do quite a bit of research at Vanderbilt. And can you share a little bit about your research and interest there?


Hilary: [00:03:12] Absolutely, yeah. I've been very fortunate to work with lots of researchers at Vanderbilt and I love being able to be a clinical perspective on the research teams. I think it mirrors what we do in research really matters in schools and clinics and then vise versa to take those experiences back to the research side as well. So like you mentioned, I do outreach with schools through Vanderbilt. They contract with us for educational audiology. And then in terms of research, what we're going to talk about today and something that's been a big part of my work has been looking at listening related fatigue for deaf and hard of hearing students. And so we've spent goodness almost a decade working and looking at how fatigue associated with challenging listening situations can impact this population.


Carrie: [00:04:02] Yeah, that's a great topic and I'm so glad you and your team have spent so much time with it, because I think all of us have fatigue at one point or another in our lives. But can you just share a little bit more about what listening related fatigue means?


Hilary: [00:04:20] Absolutely. You're right. Fatigue is a word that especially as working moms like we were talking about before the podcast started. We feel fatigued. That is so true. This this specific term listening related fatigue is really focusing on the challenges that individuals who are deaf and hard of hearing might experience because of challenging listening situations. They have to put forth more effort just to hear and understand what's being said, and it can really cause stress and fatigue. So that's what listening related fatigue is, is specifically focusing on.


Carrie: [00:04:55] All right. So you and your team have been diving into this topic for a long time. So what did you how did this all get started?


Hilary: [00:05:07] Yeah, good question. For a long time, parents, teachers and children have said there's there's something going on where this is more fatiguing. The children we work with or that that we are raising are worn out. There's something going on and there's something that we need to do to address this for our children. So that's really what started it for us. And now, of course, we also like a lot of research, it starts in adults and then we transition that over to children, not the same population, but there are some similarities between them. When we heard adults saying, I am seeing these difficulties, I am seeing the fatigue and how it's affecting me, We knew that this was probably also an issue for children and we wanted to look into that more. We also knew that just from broad literature, fatigue has some really significant impacts on quality of life. People have more difficulty at work, at school, paying attention. All kinds of really poor outcomes are associated with fatigue. So we knew if this was an issue for deaf and hard of hearing children, we wanted to learn more about it.


Carrie: [00:06:13] Yeah. So how did you guys get started with kind of diving into the research? I'm assuming you'd had, like, focus groups and things like that that you really were looking into.


Hilary: [00:06:26] That's exactly right. We first started by saying, okay, we're hearing these comments. Let's pull people together so we can get some rich qualitative information. We did focus groups of parents, of children and then of people who worked at school with children. So that was interpreters, educational audiologists, SLPs general and special and deaf educators to come to come together in groups so that we could really get a better understanding of Is listening related fatigue a problem? What does it look like? What do people do to cope with it? And we wanted to get that information directly from people who knew most about this topic. So that's where this project started. We pulled together those people and were able to create what we called a theoretical framework for better understanding listening related fatigue. If you look at a paper we published in 2021, it's available on our website, It actually has a figure that walks through what we learned after we pulled together these focus groups and analyze the themes that were popping up in those groups.


Carrie: [00:07:28] And then. So why don't you kind of gather that information from the focus groups? What were some of those situational determinants of listening related fatigue that you guys found in that framework?


Hilary: [00:07:42] Yeah, that's a great question. Situational determinants was a fancy term that we used just to meet. What are things that are happening before fatigue is showing up for, for deaf and hard of hearing children. And it's no surprise that, number one was when things are noisy or there's lots of people talking, children, their parents and their teacher said these children seem more fatigued and worn out. Specifically for children, they also mentioned things like the cafeteria, the gym, playing on sports teams and needing to hear lots of different people in a in a big area that was more fatiguing. They were able to describe then that when they felt fatigued, it might be something like feeling physically fatigued, like I have a headache or I'm I need to take a rest. But the big one that we really saw was that children were also saying, My brain is tired, I'm worn out mentally, I can't keep paying attention. I need to zone out or take a break. And so we realized that there were some cognitive things going on as well as a physical sort of fatigue. It was also interesting because parents and teachers would say there seems to be some sort of social emotional component as well. Children might seem angry or frustrated, embarrassed even. There's just these different feelings that are coming up associated with the fatigue as well.


Carrie: [00:09:06] So with that, I know you said that there were some of these things that were popping up, like the anger and those different emotions. But were the children able to describe that when you were talking to them?


Hilary: [00:09:20] It's a good question, too. It really depended on the children. And I felt like children who are more self aware and those who were more. Had higher levels of language, were probably able to meet us there. When I did a couple of interviews with individuals who were in undergrad or grad school. Those were when they really started to say, okay, now that I'm in college work, I'm able to see this is so fatiguing. Now I can look back on high school and go, okay, that was happening to me then too. I just didn't know that I was doing something differently from my peers. And so I really struggled to communicate that to anyone, they would say. Now I realized when I came home from school every day, took off my hearing aids and just laid flat on the couch. That was because I was really tired from listening and understanding all day. My peers weren't doing that. My peers who didn't have hearing difficulties weren't doing those same things. So it really depended on the child. And younger children really struggled to help explain that information to me, even if their parents would say. Absolutely. I'm seeing this as an issue. Kind of that same example. My child comes home every day after school, takes off their implants, want want to take a rest. The child might tell me, no, I don't have any problems with like hearing and understanding. So it really it really was varied in terms of the responses.


Carrie: [00:10:42] Hmm. That's interesting. So let's just talk a little bit more about the Vanderbilt fatigue scales and how you and your colleagues developed this measurement to target listening related fatigue. And then I think we can answer some of the other question that I think go back to coping and and what we should do afterwards. But I know you guys have three different scales, and I would love if you could just explain a little bit more about those scales.


Hilary: [00:11:15] Sure. I'd love to do that. So those focus groups really informed the development of the scales. We took information and quotes from the focus groups and wrote thousands of items that could potentially be used on these scales through a long series of process. Long process. We statistically reviewed those and made sure that each of the items was relevant, important for the concept of listening related fatigue. And we're going to give us high quality information. We were able to take that through a series of years of review and finally ended up with really short scales. We have one for children one for parents and one for teachers, and they range from 8 to 12 questions, so you can use them very quickly. We wanted to do that because we know time is of the essence and in schools and clinics we have to get the information quickly. So our goal with these scales then is to really identify who is struggling with severe, recurrent listening related fatigue that may impact their quality of life. So you can use these when working with students to get a better understanding of if this is an issue for them. As I've used the scale more, I also use this as a counseling tool. Sometimes I might observe fatigue, but a child's not reporting it. And I'll use this as a jumping off point to really discuss the topic and see if there's something that the team can use from this information to develop an individualized approach for that student to help intervene.


Carrie: [00:12:47] Have you found between the three different scales, like if you do it for one student and you do it with the student and then you have the parent do it and you have the teacher do it, do you feel like they match up or a lot of times they don't match up?


Hilary: [00:13:00] It's a good question. We haven't done much research on that with our scale in terms of if there's differences now in the literature at large. Oftentimes there are differences between parent and child reports on fatigue and other measures, and it kind of makes sense. Fatigue for a child may feel really internalized in a parent or a teacher might not see what's going on for something like that. And then on the opposite side, like we're saying, a parent or a teacher may say, I see all these things, but the child may not recognize that. That's the issue. For me, I see. I see that teacher and parents are usually pretty on the same page with with students, but if there are differences, I use that as a counseling tool. If the parent or the teacher is saying I'm not seeing any issues but the child's reporting or vice versa, it gives me a better holistic picture and really opens up the door for discussion at that point.


Carrie: [00:14:00] Yeah, that's kind of what I've seen too, when I've used it that I see the the child will have a pretty significant score and then the teacher will not have the same report. But like you said, they're kind of internalizing it or they're just really powering through because they want to do well. Yet, you know, they're exhausted by the time they they go home at the end of the day, which is kind of I guess one other question before we move on to like how this impacts them in the school and what we can do to help. But have you found any differences between like degree of loss or  technology, whether it's cochlear implants or hearing aids or mild versus severe type of loss and the ratings?


Hilary: [00:14:50] Yeah, like most of what we do, we know that a mild hearing loss is not a mild hearing loss in terms of impact. And conversely, you know, a profound hearing loss is not always profound. In the same way, it's more of how much does someone want to and need to stay focused in a certain listening task. So any any type of degree, laterality or type of hearing loss can result in significant fatigue. And I think that's important to remind the team, especially when unilateral hearing losses or mild hearing losses get kind of tossed to the side. Sometimes those children can still say they're really, really fatigued and that might be because they are, like you said, really motivated to stay involved in what's going on and they might be really feeling pressure to do well at school or to hear what the teachers say. Sometimes my students with unilateral hearing losses have just anecdotally, some of the highest ratings of fatigue and. It may be because some of them are unaided, you know, don't have any sort of amplification device as well. But it definitely can be anybody, any person who has any degree or laterality  of hearing loss can have a report of significant fatigue.


Carrie: [00:16:11] That's interesting. But it makes a lot of sense and it really speaks to the importance of doing these scales so we can find out more information. And it doesn't really matter what their degree of loss or laterality is. But so if we have someone at the school that's doing these scales and they see that there's some significant scores or even borderline significant scores, how can we as educational audiologist, as SLP, teachers of the deaf, anybody who's happen to be working with this student help in this aspect?


Hilary: [00:16:51] Yep. That's what that's like. The golden ticket question. I wish that there was like a formula that once we got a score, we'd know exactly what to do. I think the tricky part is, is although we're identifying that some children are struggling with fatigue, there hasn't been any research done yet that says when we get a score of 32, that means we need to implement these things. We've created a handout that's available on our website. Now that is a summary of some of the other publications that we've done, including some of the coping strategies that were recommended to us in the focus groups. We've put them all into a PDF document that you can download for free, think it's things that as professionals working with deaf and hard of hearing children, there are things we're thinking of anyway, but it can be helpful to have it all in one place to reference. We want to make the situation as best as we can as least challenging as possible. Right? So less background noise, What does that mean? We want to make it a good listening environment, so anything that you might acoustically modify, the technology, you might provide the preferential seating, you might provide any of those things that we're thinking of will also be really important. I think the other thing is, and again, there's no systematic way to do this, but really to be encouraging and thinking about listening breaks. What does that mean for a student? For some children, it really is written in. As you know, they get a five minute break after every auditory heavy lecture or group activity. For other students, it's more as needed. The teacher might say, Oh, they're really struggling. I'm going to send them down the hall to get a drink of water. They can reset and not have to listen for a minute and then they can come back. But again, there's not any research on that. It's just things that we've pulled together from reports of parents and teachers and children telling us these things seem to help us once the child feels fatigued.


Carrie: [00:18:45] Yeah, it would be interesting in the future to be able to do like a pre and a post with their listening related, you know, the fatigue scales and seeing if these different accommodations and support for different students actually helped with that.


Hilary: [00:19:01] Absolutely. And I encourage people to use it in that way. If they implement some sort of strategy, you can absolutely re administer the questionnaire. I get that question a lot via email. So I would say do it and let me know how it goes.


Carrie: [00:19:16] Yeah, we're learning as you go, right? But I, I will say that I feel like I've really incorporated this into all of my batteries now because I think it's so important to get that input from every member of the team and especially the child who's actually sitting in the classroom or experiencing things after at the end of the day too. But what what do you see in the future as far as this ten year project that I know has been so important to you and your team, what do you see going on with it?


Hilary: [00:19:53] Yeah, there's lots of ideas floating around, a few things that we have kind of in the works and trying to still figure out are some intervention type research studies that we can get a better handle on understanding if there's anything that can systematically be done once a child is experiencing a lot of fatigue. The other thing is knowing that there's other populations outside of the deaf and hard of hearing population that may also struggle with communication based fatigue. So anyone who has difficulty processing and decoding language may struggle with this. So APD, English language learners, speech and language disabilities, etc., those are things that we'd also want to look at. I think also just on our website, we're really hoping to expand and share our information in new ways. So infographics and PDF handouts, things that are really relevant to educators, educational audiologists, SLPs, the whole team, deaf educators. So we want to have really ready at the. Things that you can take to a meeting and say, these are ways that we can help this student. Those are things we things that we're working on and hope to help those who are serving deaf and hard of hearing students.


Carrie: [00:21:06] Good. Well, I can't wait to see those, because I know I'll be attaching those to emails and downloading those as well when talking to different teams. Hilary, Is there anything I didn't ask you that you wished I would have asked you about this topic or educational audiology.


Hilary: [00:21:23] I don't think that there's anything you didn't ask me. I think one thing that has been a question that has come up that I think is important for listeners to know is that even if you get a lower or borderline score on the Vanderbilt fatigue scale, dig deeper. We know that this isn't a significant problem for everyone, but it is a problem for some students. And not all students know how to describe it or really understand the topic. So I always say if you're getting a score but you're feeling like it's not exactly accurate, combine that information with your other observations, your other data points, what others are telling you, and still consider some of those intervention strategies if you feel like it would help the student. Just because you don't get the highest score possible on the Vanderbilt fatigue scale doesn't mean you can't educate the student, educate others and really use it to your benefit. So I would also hope that in the future we're able to have some sort of educational materials that helps to explain this topic and really delve into how we can provide additional services and supports.


Carrie: [00:22:30] Yeah, that's a great point because kind of like what we talked about at the beginning. Children don't always have the words or don't recognize why they're feeling those different feelings, but then when you have the opportunity to sit down with them and go through the scales and ask additional questions like a counseling tool, then they start to recognize, Oh, wait, maybe because I was in the gym at a basketball game all day long, I am exhausted because I had to concentrate so hard. But they didn't recognize that until they had the actual vocabulary and tools for that.


Hilary: [00:23:06] Absolutely. That's so true. And one thing another thing that we didn't hit on as much, but I think it's important for people to realize, you know, children who are struggling at school are often the ones that we think of, Oh, we really need to check in on them and make sure, you know, are they fatigued or are they having extra difficulty because of whatever struggles they're facing? The other population that we really need to focus on are actually those children that are working so hard and doing so well that they're just pushing through that fatigue and really, you know, they're motivated students. They're really putting a lot of pressure either on themselves or feel pressure from teachers or parents to perform well. Those are sometimes the students that get overlooked, I think, because they are looking good on paper, but they may be some of the ones that are the most worn out just because of how much constant effort they're putting forth to do that. Well.


Carrie: [00:23:58] Yeah, that's a really good point. What? So I know you mention that on the website. You guys have your articles and resources and the scales. Is there anything else that I missed on the website?


Hilary: [00:24:15] The website is still it should be updated here in the next week or so. What we're working with our web developer to do that, you're going to be able to find a paper version you can fill out of the scale as well as PDF Fillable versions, if that's helpful for you. You can also feel free if you use Google forms or other things to send out scales. You can transform this into anything you want to make it as usable as possible. And then, yes, you'll be able to find references to our articles as well as those infographics and handouts there. It also has our contact information on the website. So if you want to reach out to us emails, the best way to get in touch with us. Always happy to answer questions or hear your feedback on how you're seeing fatigue. Show up for your students or how you're using the Vanderbilt fatigue scales. It just helps us make things better for the students that we serve.


Carrie: [00:25:02] Well, Hilary, I know this is such an important topic that we don't really always talk about, but is very evident in populations and like you said, and other populations as well, such as auditory processing and English as a second language and all of that. So I'm hoping our listeners  today, we'll go to the fatigue scales and take a look and download and start implementing their the scales into their everyday practice. So thank you. Hilary For being a part of today's podcast. It was such a pleasure to have you. And like I said, I always enjoy connecting with you. whether through Educational Audiology association or other topics that we both hold dear to my heart. So thank you again for being here today.


Hilary: [00:25:54] Thank you for having me. It was a great time.


Announcer: [00:25:56] This has been a production of the 3C Digital Media Network.




Episode 52: empowEAR Audiology - Chezi Pollack

Announcer: [00:00:00] Welcome to episode 52 of Empower Ear Audiology with Dr. Carrie Spangler.


Carrie: [00:00:16] Welcome to the Empower Ear Audiology Podcast, a production of the Digital Media Network. I am your host, Dr. Carrie Spangler. A passionate, deaf and hard of hearing audiologist. Each episode will bring an empowering message surrounding audiology and beyond. Thank you for spending time with me today and let's get started with today's episode. Welcome to the Empower Audiology podcast, and I have a special guest joining me today from all the way across the world for me. He is an Israel and it is a pleasure to finally connect with you. Chezi, thank you for joining me today.


Chezi: [00:01:01] No, no worries. Thank you so much for having me.


Carrie: [00:01:04] So I must say that our deaf and hard of hearing world is a really small community and people can get connected when you least expect it. So for us, we have a common connector, Dr. Don Goldberg. And I know as we get into the interview today, I'm going to ask you later on how he became an important part of your life. But to get started today, I'm just wanted to share a little bit about you. You are a teenager that has a really empowering story to tell about your own hearing journey, about getting cochlear implants, about starting a podcast called My Hearing Thoughts. And I just can't wait to get started with this interview. So to begin today, can you just share a little bit about how you were identified with hearing loss? Kind of go back in time and give me a historical perspective. Yeah.


Chezi: [00:02:04] Yeah. So I'm going to jump all the way back from the beginning. So my mom and dad had me on October 4th, 2006, and originally I was born meant to be born on January 21st, meaning I was a preemie. I was born 16 weeks early. And as you know, that baby has to go on the next year and get a lot of support and medicine. And this for me, it was really hard for my parents because they were like, I could have died. So they had to give me medicine. Now, at the time it was very emotional for them. So they were there like literally every step of the way. I was there for four months and the time they didn't, they gave me medicine and. It helped me a lot. I think I don't know so much, but all I know is that throughout when they gave me the medicine, it affected my hearing. And at the time, my parents didn't know that I couldn't hear.  Around when I was finally one year old, when I was finally a baby, one year old. They took me to a hearing test. And the doctor, I don't know who the doctor was, but he said. Um, to my parents. Because you can't hear. He can't hear anything. He didn't respond to any of the. The things that they were doing to any of the tasks that they had given me involved doing. So at the point my parents were really. Devastating. They did the most they could. Everyone prayed for me in the community. And then this is when they started looking into where I lived in for basically my whole life.


Chezi: [00:03:49] Originally, I lived I was born in New York and I lived there for one year. But after I got hearing loss, they started looking into more where more places were. It can help me with my hearing. So they found Cleveland and over there they found Cleveland Clinic and that's how they found Dr. Don, which I'm sure we'll get into later. And what they did was so they looked into it and seeing how it could help me with my hearing loss. And they also had to see how they could build on the life they got, what jobs they could do and how they know help me. And eventually they found Cleveland Clinic. And now how it's like the number one hospital for heart surgery and it's really great hospital. And at the time they were like, this seems that it can be really good for Chezi, can help him with his hearing loss. And then we moved it and we lived there for 11 years until we moved to Israel. So it was like a big part of my life also because my friends was the my friends were there and my teachers were there. And so we're getting a little off topic, but. I got my first implant, The Cleveland Clinic, by Dr. Woodson. I think I can't I don't know if I'm saying that, but anyway, she gave me my first cochlear implant when I was four years old. But from a baby. When I was a baby, I had a hearing aid. But at four years old I got my first cochlear implant on my left ear. So this one.


Carrie: [00:05:21] Okay.


Chezi: [00:05:22] Then when I was in first grade, so seven years old, I got my second implant. On my right side. And that's pretty much how I got my hearing loss and how we came to Cleveland and why we're out.


Carrie: [00:05:36] So I'm. Your diagnosis at age one to age four, you are hearing aids in both ears. Is that correct?


Chezi: [00:05:46] I'm pretty sure one year, but yeah, two years.


Carrie: [00:05:49] And then you got Do you remember anything about getting your cochlear implant at least when you were seven? Do you remember?


Chezi: [00:05:59] I think if I remember from four years old. So when I was little, I was obsessed until, like, these little animated kids shows. So I don't know. Have you heard of Strawberry Shortcake? Yeah. So all I can remember is when I woke up. This is when I was four years, by the way. So when I woke up, I remember there being a DVD player on my lap, having strawberry shortcake, and I just woke up from the surgery. I'm like, to my mom and dad. What is this? That I could barely speak. So I was probably talking like a baby's voice, like, what is this? But the I was just watching. They gave me a popsicle. It's like help. It'd be easier. And I'm pretty sure of like, I'm pretty sure I got a headache after. So they gave me a popsicle to calm down. And I just remember waking up to the theme music and then watching that. And then there's another I have another memory of getting mine at seven years old. And this time it was I woke up, but I saw my mom in front of me and the doctorr said, Just finished. I got another popsicle. I don't I forget what this one it's called, but it's red at the top. White in the middle and blue on the bottom and. I never asked for help. And I went to the and I was zig zagging.


Chezi: [00:07:20] I had just woken up and it was so hard to walk. Also, because I had this big bandage on my head since I just got my second implant. So my parents were. And then right after, not long after they closed. I don't know how to describe it, but it's Cleveland Clinic where they do the surgery. It was like a big film notch, like, What's my room? So they put a coat around me. I change, and then I just left. They were done. They told me the next time I need to come in and check in. And that was it. I remember my mom carried me and and my grandparents were there because my mom and dad both work at the same school. So they went to the. One the hospital to put it back. My dad went back to teaching. My mom stayed for this day also because she had just given birth to my little sister Habiba, who was a few months old. So she stayed home for the day and my grandparents with my sister. She wanted me because she was a baby, but I stayed home. My grandparents from my mom's side were there and just kept after me and watched me for I think if I'm correct, it was two weeks I got off and yeah, that's how that's the only thing I know.


Carrie: [00:08:37] Do you remember when you were activated then for the first time when they actually put that turned on the implant?


Chezi: [00:08:47] I do remember a little bit. It was like life changing because to me, I always like to put on hearing aid. But when I put the cochlear implant on, it was like a new life experiment, I guess you could say, because it had a new way of being a processor and adjusting. And normally, like this happens a few times where I lose my implant or it dies throughout the day. So I wear a different one and I take to school. And only when that other one's on, when I put the other one on, it just goes really. And that like that moment before it heals that way because I'm wearing like the Nucleus 6 and now I'm putting back on the Nucleus 7 and they have a similar viewing program, I guess you could say. So it's a different way of hearing and his way differently. So that's how I felt and what sound like when I first put out my. I'm like, This is life changing. It's just so much better. And it's just been amazing.


Carrie: [00:09:51] And I know when you first get the cochlear implant, it sounds so much different than what a hearing aid would sound like. So I am assuming that that's kind of where Dr. Don Goldberg came into your life. Can you share a little bit about how you met him?


Chezi: [00:10:10] Yeah, So if I'm correct, Dr. Don, in my interview, he said that when your baby it's normally a playdate with the kids and the parents, they go for learning because Dr. Don helps them learning with how they can talk to that and how they communicate with them because it's a little harder. So my mom and dad when I was a little baby, but. As time goes on, when I have my cochlear implant, that's when Dr. Don  really came into the picture. I remember learning all of these things. We would always this like browns black sack. I don't know what it's called, but he put it over his mouth. He would say the sounds and you would go over and over with the hearing. So it would help me, my sound and my words. And then we would also we learned all of the 50 countries of the 50 states not countries and us A and we would do like these games if I asked how much longer I would lose a penny and there was a whole jar penny or he'd give snacks and you had to wait and you had to choose and you had to, like, make these big life decisions between two big snacks. Like, oh my gosh, what do I want, a fruit roll up or Cheez-It? And all. All. It did just help me feel better. I think it helped me became a better person and helped me think positive and not be like, Oh, I'm never going to get this right. It helped me not give up and help me become a better person. So that's why my slogan is Cheer positive. Think positive. Like I only feel good and I hear better and I think positive. And I'm like, That was really hard. But I did it. But Dr. Don, he was with me for so long, and then he came into my the 13th birthday, my bar mitzvah. He came all the way from America to Israel. So that was a big moment. But he's really been a big part of my life now. I was so glad I got to have that interview with him.


Carrie: [00:12:10] Yeah, well, I'm glad that your parents did all that research ahead of time to find a great place for you to get your cochlear implants and have the follow up care that you needed afterwards, too. And to have a it always takes a village of people to surround you when in this community. So you found it.


Chezi: [00:12:33] Actually, I remember Dr. Don in an interview. He, my dad and mom were very protective then so they answer that a checked Dr. Don out,  which I thought was kind of funny. So they're like a madam. And I'm like, okay, what are your qualities? What what we do? What is your main goal? And that after that, everything when I was history, I become a better person in my healing was way better.


Carrie: [00:12:59] Good So kind of moving into your So you lived in the United States for the year for 11 years, right?


Chezi: [00:13:07] Yes. So when I moved to Israel, 12 and a half.


Carrie: [00:13:10] Okay. So how was it going to school in the United States?


Chezi: [00:13:16] Well, to me it's like really different because in the United States at school, I'm speaking my first language, but also, like all the teachers knew about my hearing loss, I knew how to dealt with it. They knew that I have a microphone. They knew that I got tooken out for speech and they knew that I was it was a call for me. And of course, they were teaching me my first language. So it was way easier. And I had like there were a few other kids in my old school, one kid in my other grade that has a hearing aid not a member thing. It's always nice to know someone that who understands and knows what it's like to learn enough hearing loss. And so it's way different than I expected. Like the first year I came, it was a new beginning. And then I'm like, No, now. The second year as a new beginning because the first year Corona happened and one it was on Zoom two, I was learning a different language everyone was in. It was way harder for me because of my hearing. I'm like in the first row of the class and so many computers. So the internet broke off. It was way harder. But really, to me it was the second year it was my beginning and it's when I developed the new words and understood everything and with my hearing loss, I finally did it. And then the first three years I did open, which means like you basically go put off class and you learn new words in a different language and sentences and helped you. So after three years, I'm on my fourth year now, I'm going to Israel and I still have a little hard time, but I can say that I now able to have a full conversation and I have managed. I pulled through.


Carrie: [00:15:00] Wow, that's amazing. So the different accommodations or supports that you ask for because you're learning a new language and then you have your hearing loss on top of it.


Chezi: [00:15:12] Yeah. So besides open, I've had I go to something called Shema where there's other kids like me who have hearing loss different ways. If it's a hearing aid, if it's I forget what's called the mic that you put on your head and you can hear.


Carrie: [00:15:30] Baha yeah.


Chezi: [00:15:30] Yeah. Or if it's a cochlear implant this I go every once they say I'll be going tomorrow because it's Tuesday anyway. So it's so great to have all these kids that are like me, different age, but we're all friends and they're like me and it's so great. And that's something I really like to do because open but also I don't know if I mentioned, but I have a twin brother. My twin brother Gobby were identical, so people say we always look alike. So I'm always like, Didn't I just see you? I was like, No, that's my twin brother, Gobby. So he's a main part of my life. He's helped me. So if I don't understand anything, go translate and he'll make sure my hearing is okay and that nothing's wrong. So Gobby is also a big part of my life helping me. And even though I don't say it to him, he's really an amazing brother.


Carrie: [00:16:21] Wow, that's great that you have all of those supports and then that group of other students just like you, too, in Israel that you can connect with. And so do you have special like do you have special tutoring or do you use like assistive technology in the classroom, like a remote microphone or anything like that?


Chezi: [00:16:44] Well, I do use a microphone. It's called a mini mic. So it's like the pompom is that you say the thing you put on your head, like, that's metal. It's like that. Exactly. Except when I press the button on, I just hold my stance for 3 seconds and then it goes straight to the mini mic and the teacher will put it on it top of the shirt, whatever he or she's wearing. And I just feel way better. Like all of his or her words go straight to the microphone and I hear way better. I'm about special tutoring. For the last three years I went to AV, so that's like a speech therapy for me. So in Israel and then I'm from Shima that I go to every Wednesday. I had a tutor every Monday.


Carrie: [00:17:38] Okay, well, that's great. So I guess, like, kind of thinking about you now as a teenager, and I am an educational audiologist, so I work in the schools with a lot of kids from preschool all the way to graduation. And I know that the teenage years can be tough for anyone, but especially when you have a cochlear implant or your deaf or hard of hearing. Do you have any advice for teenagers who are out there that might be deaf or hard of hearing?


Chezi: [00:18:15] My advice is. Don't give up. I've always believed that life has its challenges, even if it's a challenge to the whole life, or just a time when things get tough. Life has its own challenges, but if you can climb over it and master it the right way, only like greatness will come to you. You will achieve only great things and you can do a few in a different way. So for me, I write my own songs and I just put out my own personal experiences for my hearing loss or how it affects me. And I just write it down. And to me that's my achievements. I'm writing songs, but I'm also sharing it on my podcast, my hearing thoughts, or I'm a few people I know are using it, and to me that's like my way of achieving it. But also I've had some challenges like having hearing loss and moving to Israel at 12 years old with learning a new language, especially with hearing loss. Those are my challenges, but I'm sure I have many more to come, but I will get through them. But to anyone who has hearing loss with a teenager, things get tough, but it's worth it to get through the challenges and everything will be okay. Trust me, I've had my share of trouble.


Carrie: [00:19:32] Well, that's a great mindset to have, and I love that you have an outlet of writing songs to get your emotions out there, but to be able to share with other people too, who may need the experiences that you have and share. So getting to your podcast too, I love talking to other podcasters and I know you have a podcast on Spotify called My Hearing Thoughts. So what made you start this podcast?


Chezi: [00:20:06] So it was all on a Saturday morning, but Saturday afternoon, but we call it Shabbat. I was with my dad. We were just chilling. It's this was like in the afternoon and I was like to my dad, Hey, Daddy. Hey, Dad. I want to have a more way to, like, end these questions. I always just ask questions when I meet new people or some of my friends about everything, about my hearing loss. And I'm like, How can I end it? How can I have a way? What if they ask questions? They just go to a website or something and they have all the answers from me. My dad's like, Why don't you make a podcast? Your uncle has a podcast. And I'm like, That is a great idea. So the whole rest of the day, I was just with my dad and my mom thinking of podcast ideas and I'm like, I want something to say about my thoughts, what I think and what I know of it and my perspectives, but also like something that mentions, Oh, I have a hearing loss. So that's how I came up with my hearing thoughts. And in the beginning it was just about saying my perspectives from each thing on how I listen to music straight to my implant, like Bluetooth or how I swim or how I sleep, or how I read or how I go in the shower or how I listen in the class or in big crowds, in stadiums, and eventually to also my music, the songs I write, because I also put my feelings through experiences of hearing loss or just regular trouble that I've had and challenges that go through my music.


Chezi: [00:21:41] And I also talk about that on the podcast, on my hearing thoughts related to my hearing loss and. Now, recently, I just like I've been working on my songs and trying to find those challenges of making loss. So I just took a break from my podcast, but I'm now in back four new episodes every Sunday. But anyway, but my music really, to me, that's why I want to do my podcast. I want to get. Answers of. People have asked me about my hearing loss out onto my podcast. So listen, instead of asking me, but also my music. So I switched one episode, and normally in the music episode I did, I'm like, Please share this. It really means a lot to me. I want to grow up to be a singer songwriter and I want to inspire people. And I still do that. I still do that outside of podcasts. Well, now I grow into not just being by myself. I have on my podcast segment. So do games or do a segment about my song I write. I will do a segment about my hearing loss or a question someone asked me or I at the bottom of my description, there's a link where they can send a voice message and I play on my podcast.


Chezi: [00:22:54] But now what I really do is I, I realized a few months ago this is all wrong for my podcast like you do. I want to get other perspectives of hearing loss. I don't want to just get mine. I want I ask people, what is it like for them to break down the hearing loss barrier and what they think of hearing loss and what they how they feel about kids have hearing loss. And I try to get other perspectives, but I ask like I also get my family and friends on the show and ask them what the how their life was for when I came in the picture. And I really try to get those messages out with hearing loss. Be who you are, Don't give it. Everything happens for a reason and I try to get other perspectives out. And that's what I've been doing lately. And that's also one of the reasons why I'm really glad that I'm on your show, that you reached out to me because I'm getting my own perspective out on your show. And it can grow not just your podcast, but my podcast more. And we can help people hearing loss more and we can spread a message. So that's also a main thing about my podcast I love.


Carrie: [00:24:00] Yeah, No, I think that idea of having the everyday life questions and answering those is so important because those are the question that parents who, you know most of the time parents who have a child who has hearing loss, this is new to them because they that that's the first experience they've had with hearing loss. So for you to be a teenager thinking about your everyday life and the questions that you get every day and answering those questions in these small, thoughtful ways, and your podcast, my hearing Thoughts, is going to be a great resource for parents, for individuals who are deaf and hard of hearing for teenagers, for young kids, and it really impacts a lot of different people. So thank you for putting all of that out there, because I know you have so many episodes already of, you know, advice and your own hearing thoughts. That's but I love expanding to other perspectives as well.


Chezi: [00:25:07] Thank you so much. That really means a lot like something I'm putting into. A lot can just help and make a difference.


Carrie: [00:25:14] Yeah, well, as we kind of wrap up today, is there anything that I didn't ask you that you had wanted to share today on the Empower Your Audiology podcast?


Chezi: [00:25:28] I actually wanted to ask you if it was okay, your hearing loss. I don't know if you explained on your podcast, but I'm curious to know, like during your hearing loss journey, was there any challenge that you went through that you think that's like? Something big that you could also take out as a message, like to me?


Carrie: [00:25:53] Yeah. I think your message of, you know, not giving up and and staying positive is is a message that is important to me as well. And that's kind of why I have the name of EmpowEAR Audiology. I wish that I would have had someone like you that was giving advice when I was younger. And I think that's probably one of the I think important takeaways for me is growing up, I never knew anybody else that was deaf or hard of hearing, and I thought that was hard. And I grew up in the Cleveland area as well, so south of Cleveland. And I think being able to have connections with others and know that you're not the only one out there who is going through this journey and your perspective or your journey might be different than somebody else's. But knowing that there's somebody that has a similar perspective or similar experiences, that is really important. So I think that would be my key takeaway is that connection piece.


Chezi: [00:27:07] Yeah, I totally agree with you. Yeah.


Carrie: [00:27:11] Well, I just want to say thank you for spending some time with me today sharing your hearing journey and this podcast and your willingness to share your everyday experiences and navigating life as a teenager who has cochlear implants is really going to help others. And thank you for your podcast, My hearing thoughts, and I would definitely link that up in the show notes today for anyone who would like to follow you and your day to day experiences and everything that you're going to do to continue to expand. So thank you for being a part of today's podcast.


Announcer: [00:27:53] Thank you so much for having me on the show. This has been a production of the 3C Digital Media Network.




Episode 51: empowEAR Audiology - Dr. Chad Ruffin


Announcer: [00:00:00] Welcome to episode 51 of Empower Audiology with Dr. Carrie Spangler.


Carrie: [00:00:16] Welcome to the Empower Ear Audiology Podcast, a production of the 3C Digital Media Network. I am your host, Dr. Carrie Spangler. A passionate, deaf and hard of hearing audiologist. Each episode will bring an empowering message surrounding audiology and beyond. Thank you for spending time with me today and let's get started with today's episode. Welcome to the Empower Ear Audiology Podcast. I'm really excited to introduce my guest today. I have Dr. Chad Ruffin with me today. He was born with a severe hearing loss and he is uniquely equipped with the skills and experience necessary to improve the lives of hard of hearing patients. Dr. Ruffin completed surgical training at Indiana University, one of the most rigorous otolaryngology residency programs. He also completed advanced training and ear surgery and cochlear implant research as a faculty physician at Indiana University. He is passionate about using his journey as a deaf patient, surgeon, auditory neuroscience scientist and hearing technology innovator to help others succeed with hearing loss. So, Dr. Ruffin, thanks for joining me and the empowEAR Audiology podcast.


Chad: [00:01:44] Thank you very much for having me. Carrie I'm excited to be here. And that was quite the introduction. I'm really appreciative of it.


Carrie: [00:01:51] Well, I feel like in the last few years I circles, I keep kind of coming together and it was great to finally meet you in person back in May at the American Cochlear Implant Alliance Conference.


Chad: [00:02:08] Yeah, I know we've been talking for a bit, and when you came up after I asked a question, I was super surprised. It's been great meeting you and chatting from there.


Carrie: [00:02:18] Yeah. So. Well, thanks again for being a part of the podcast and I'm really excited to find out more about you today. But I thought we would maybe start out with going back on that trip down memory lane. And can you just share with our listeners a little bit about your own hearing journey and how that all started?


Chad: [00:02:45] So I think there was probably a revolution in hearing health care for children who are born deaf. But back in the late sixties and seventies, as diagnosis and treatment started to open up, then I was born with a severe hearing loss, and I actually wasn't identified until around three years of age because I wasn't talking. I didn't respond to my name was called behind my back, but I did follow commands and I understood people because I was a very adept lip reader. Indeed, I did so well that experienced audiologist pediatric audiologists didn't think I had a hearing loss. And so my mom eventually took us down on a four hour trip away from home because I was I was born and raised in the Louisiana country and we went to Baton Rouge for an auditory brainstem response test. And that's where we found that I had a severe to profound hearing loss. And I was fit with hearing aids and given lots and lots of speech therapy. And by the time that I entered kindergarten, I was probably ahead of my peers for reading and talking. I used amplification up to around the point of fourth grade as the only accommodation, if you will, or treatment for hearing loss. And then my hearing had a sudden drop in fourth grade and I started using wireless FM systems or what's the modern name for these things called.


Carrie: [00:04:24] We call them DM sometimes digital digital modulation system or remote microphones. There's so many names and acronyms. Right?


Chad: [00:04:34] Right. So I started using that. And with that device, I was able to understand the teacher, and I did really well in school. My parents were a little bit different because they were entrepreneurs, and even though they came from a very either impoverished or middle class background, they did very well for themselves and super resourceful. And they're the quintessential parents that you see of successful children with hearing loss, meaning they go out and they find things. If something isn't followed up on, they will follow up on it. And because of that, I was successful and. I was offered a cochlear implant in Memphis, Tennessee in 1989. I was about eighth grade at that time, but I was one of the one of the first of the computer generation. So I grew up on a computer I had one since I was in second grade, and I thought that it was probably a little bit too early to consider a cochlear implant because, you know, technology will get better. And I didn't get one until I was in my later year of college because I just my hearing just worsened and hearing aids were no longer beneficial. The remote microphone still worked well, so it was the only accommodation that I had, really. And I had the implant when I was 21, and it really did change my life. I was able to participate in conversations that I could not do before. You know, before an implant, one on one conversation was very difficult and much less a group. But now I can participate in a group conversation. And it was about then that I realized that I had the first inkling that it's not really about how much you hear, it's more about how well you communicate. And I probably shouldn't have gotten I probably should have gotten a cochlear implant when I was in eighth grade because I would have had a better social circle and probably better social skills through my life. And it would have made it probably would have made a demonstrable difference in the trajectory of my life. Police. On. Can we do that?


Carrie: [00:07:02] What? Good.


Chad: [00:07:03] No. What? Sorry. Then I turned you off. Sorry.


Carrie: [00:07:06] That's okay.


Chad: [00:07:08] Let me figure out how to meet this. Okay. Yeah, it was. It wasn't until I got my cochlear implant when I was 21 that I realized I probably should have gotten it earlier because I realized then or had the first inkling that it's not really about how well you hear, it's about how well you communicate. And you don't need perfect hearing to be able to communicate well. So I think that if I received an implant when I was in eighth grade, I would have had a better, more normal social circle and better social skills as I got older. And that probably would have parlayed into some different choices that I would have made for my life even at that early of an age. So. I didn't get my cochlear my second cochlear implant until I was 31, and I think we'll probably end up coming back to that later in the interview. Why I got that and how that changed so.


Carrie: [00:08:14] Yeah, well, that's a great history. And I love how you said about your family, your parents, that they were so resourceful. And that's a big key for success for a lot of our kids who are deaf and hard of hearing is having that family support along the way. And it sounds like you definitely did. And I'm impressed at age three and you were able to catch up. So you must have had some really good therapy to help you learn how to catch up with those auditory skills and communication skills at that point in time, too. But we see our kids now who have the newborn hearing screening and close that gap so much quicker than we did. I wasn't identified till age four, so I had a lot of catch up to do.


Chad: [00:09:06] Yeah, I had twice weekly speech therapy and then Michael and my boyfriend, who was the first kid in North Texas to get a cochlear implant, had much more frequent auditory verbal therapy, and I would say it was formal or AVT meaning was more than just getting the words, which is what I did and talking or doing actually forming the words correctly. Michael had a had a much more intense listening and learning to talk and hold a conversation, all of those skills. And I do think that his earlier intervention does play out a role in terms of how we verbally process the world. Mm hmm.


Carrie: [00:09:57] So you talked about you got your first implant around 21 and you were in college at that point. Did you know that you wanted to be an otolaryngologist at this point?


Chad: [00:10:09] No, I was in Backwater. Louisiana is where I grew up, so my exposure to the world was pretty small. And if you wanted to be successful, I think a lot of people thought about going to college and then becoming either a doctor or a lawyer. I don't think we really had much exposure to MBAs. So I think that my field of view was somewhat narrow. And I really I love science and I like the art of medicine and the art of bringing a science together with the real world, which kind of also happens with flying, because I'm also a pilot and. So I kind of discounted medical school after getting my implant because. I wasn't sure that I was ready for the level of commitment that it requires. So I taught high school for a couple of years and then I was in ultrasound tech for a year, and it made me realize that medical school really was probably the right choice for me. And it was been it was a very interesting journey because back in 2003, there really weren't many deaf people in medicine. We had the ADA passed only ten years before, and I mean, that's actually kind of shocking to me now, being the age of 45 and understanding that culture. Cultural change takes a while to come along, and it's kind of shocking that I started medical school at only ten years after the passing of the ADA, and some of the rights that people take for granted now are coming from the first people who went through medical school, like Dr.


Chad: [00:11:51] Phil Zazu and someone in my generation, Michael OGenny, who went to court over some for some of these rights. So it was a very inhospitable world, you know. So I remember I had a choice of medical school to go to, and I ended up going to a public one because I thought that the accommodations would be better there, but they actually weren't. And. After I was admitted to medical school, the dean of the medical school found out that I had hearing loss and was deaf. And honestly, it freaked them out and they seriously reconsidered my admission. And I went into a meeting with a lot of different people. And really, I should have had a lawyer present, but it went well. And I told them how I would plan to manage X, Y and Z problems that may come up. And what I remember one faculty member came. Said to me in the meetings like, Well, what happens if you go through all of this training and. And you're not able to perform clinical medicine. And I just looked at it. I was like, Well, medicine doesn't march forward without great research, and that is still an option.


Chad: [00:13:17] And so I went through my first couple of years of medical school, and I decided to be an ENT or Otolaryngologist ear, nose and throat doctor after I completed a two year research fellowship at the University of Washington. It was a fantabulous experience because that was there where like my. I was exposed to so much creativity. I mean, top class students in engineering. And I got to be in one of the premier laboratories for cochlear implants in the world. And it was just a truly amazing experience because it was there that I was able to see that the world is not a path you follow, but you can make that path. And so I really enjoyed cochlear implant research. At the time I was involved in understanding how implants changed excuse me, how the auditory nerve encoded speech, both normally and under electrical conditions with the electrical hearing of a cochlear implant. And that was super fascinating to me. At that time, everyone thought that it would be if you can produce a perfect encoding in the auditory nerve, that hearing loss is fixed. And it was a very exciting time for implant research because we thought that we had come to a model that would help us do that. And ultimately it didn't. But but that was my first exposure to cochlear implant research is how the how do we best encode the sound of an implant.


Chad: [00:15:04] And because I really enjoyed that, I decided to go into ENT because it was clinically it fit together. It's a really diverse field. Surgically, there are all kinds of different technologies you can work with, and you are working also with the science of communication and voice surgery for the communication of voice. So the interesting thing is I thought I had my implant. I thought that the challenges that I had getting to medical school were behind me and that wasn't the case, unfortunately. ENT is one of the routinely one of the most difficult specialties to get into because it's exciting. The lifestyle is great and it does well financially compared to other specialties. So it took it actually ended up taking me about 30 interviews over a couple of years to get in. I had to do a second internship. Another research fellowship to get in just to prove people that I had what it took. And that was really the first time that I realized that I was different from other people because I had given it my all. I had done a research fellowship. I think that is most analogous to doing a road scholarship for medicine. And I graduated very high in my class. But at the same time, people were not listening to reason and didn't believe that I could do this.


Chad: [00:16:43] So, I mean, like that is that was a pretty traumatic blow It took about. It's probably taken some now in my life to move past that in a meaningful manner. And it was the first time that I ever labeled myself as disabled or different. And it was then that I started realizing that you can hear everything in speech in terms of the lexical content or getting the words. But there's a lot more to communication that is not available to people with severe and profound hearing loss. And that's really what's changed the trajectory of my career in terms of what I what my mission in life is, is not to give someone perfect speech. We can't do perfect speech perception. We can't do that right now, even in the best outcomes of cochlear implants. And we even with better hearing aids, better cochlear implants. We are not making a dent in how deaf and hard of hearing people achieve meaning. The socioeconomic status of deaf and hard of hearing people hasn't changed in the nearly 40 years that the ADA has been passed. So there clearly is something more, and I think there's this missing piece of turning the conversation more towards how we help people communicate better and address gaps in care with better counseling. Because even the best hearing aids and best cochlear implants are not cutting it.


Carrie: [00:18:22] Mm hmm. Yeah, I agree with you there, especially being a cochlear implant user, too. There's much more to speech perception than the cochlear implant, and we'll get into that to how we can better manage that communication. But just kind of taking a quick step back to that medical school and going into ENT. Do you feel like that I know you said it took me a while to get to the place where you're kind of okay with the discouragement that you had, but do you feel like that was a springboard to maybe having more grit and resilience and passion for what you do because of that?


Chad: [00:19:05] Well, that's a grudging yes. I mean, I would never want to go through that again. But. Yes. I mean, I have a patient who is also a surgeon who flew in from across the country. And because she is a surgeon, she had been to. The best resources for her situation that. You know, the world could offer. She'd been to all the big centers and she said that no one would quite talk to her the way I did about how various ear problems affect the quality of life and mental health and. Accommodations and the whole spectrum of things. So, I mean, like that's something that I routinely see. And in the exam room, like when I have couples with you have when I have a patient with sudden hearing loss and they have their significant other with them, I will look at them and tell them I'm like, This is going to be difficult for you, too. It's going to be a big adjustment. And we address mental health issues. Make sure that they get counseling if they need it. So I think that hearing health care has historically not been great in America because audiologists and ENTs are not encouraged to play well together for a variety of reasons, both what's in the law and the just the history between the two specialties over time. And I think that really needs to change and we can accomplish a lot more if we move beyond that.


Carrie: [00:20:53] Yeah, well, I'm sure your patients appreciate the insight that you have as a cochlear implant user from a personal perspective. And then your professional expertise is, you know, obviously amazing. So it helps to have both of those. And I kind of had a similar experience going into grad school or in undergrad where they called me in to the clinic director and the dean called me in and said, I don't think some someone with hearing loss can become an audiologist. And I was like, What? Like wait. And so, I mean, I didn't have to go through, you know 27 other kinds of interviews, but I still left that meeting devastated, thinking what, like, this is our profession and you don't understand how to make some accommodations and supports. And I really wasn't ready to act. I was shocked and I'm not ready to respond with a good answer at that moment in time, I had to go back and process it and make another appointment and share how I could navigate through this. It might not be different. It might be a little different than my peers, but I can still have this perspective that my peers will never have.


Chad: [00:22:23] Right. Right. I mean it. Let me think. I think that coming from the background of my entrepreneurial entrepreneur parents and the confidence that that instills to be able to do something and being successful at every other part in my life, I question myself like, am I going to be a great surgeon? I mean, do I have that ability? And when I was out of training, you know, I mean, like, I still I did my surgeries. They went great. When I got around to cochlear implants, it was kind of like. Crazy, to be honest with you, because I did my first implant surgery as an attending and the patient calls me the next day is like, I can still hear. I can hear water splashing in my ear. And I was like, Well, I hadn't planned on that, but I that is awesome. And. I've since learned that my hearing preservation rates and implants are as good as they come. They're actually ahead of published reports in the literature, and I kind of learned why that is in terms of or suspected why that is. But it's great to have like a different and fresh eye about things and the diversity that having a different background brings to a job.


Chad: [00:23:57] Because I can tell you that I do my implant surgeries differently as a result of my own perspectives and thinking about it. So, for example, I mean, a lot of people don't get cochlear implants because they're scared to death of losing their residual hearing. And one of the reasons why I try to preserve hearing on every patient is to to allay that fear, even though in the end. If you had to calculate the percent of variance or how much preserving residual hearing helps the average person, it only contributes to 10% of their final performance. It's not much, but it contributes to a lot in the community. If you can tell them, you're probably not going to lose your hearing right after surgery. But I can't tell you what's going to happen in the next year. But right after surgery, it's probably going to stay pretty close to what you had before if I do it. And. Yeah. It's just it's been it's been fantastic to move beyond that initial huge blow to self esteem, you know.


Carrie: [00:25:05] So yeah well I can, I can relate from an audiology perspective that it brings a different perspective to the patients and the families that we have the opportunity to work with. Well, I thought I would go through some different common questions you might get as a CI surgeon with cochlear implants, but I thought I would ask you first. Do you is there like one question that you always get because you are a surgeon with cochlear implants where it might be the most common question.


Chad: [00:25:41] From my patients or in general from anyone.


Carrie: [00:25:44] Like just because you have a cochlear implant and you are a cochlear implant surgeon. Is there like a question that people are always curious about?


Chad: [00:25:57] On. I think it probably you can divide it into two categories, like people who are in the office with me and then people who talk to me outside the office. In the office. I think it's kind of funny because people are like, do implants work? And I'm like, Hello? I know I'm relatively a star performer, but I'm talking to you. So I think that's probably the most one  that I get. The one outside the office is usually students coming up to me and saying they want to go into medicine or they want to go into surgery. And I think right there, they. Let me back up. The most common question I get outside of the exam room is from students and parents who are wanting the best for their child or wanting to go into medical school or become a surgeon. And they will ask me, So how do I hear in the operating room. And a lot of these people have not even gotten to medical school yet. And I really just turn the question around and I said, you're. That's not really the question. Being able to communicate in the operating room, if you have some hearing, was probably going to be fine. You may require some accommodations and you may have some resistance. But the real question is how do you communicate with people? And I don't think that people realize the intensity of communication when you are in medicine because you are talking anywhere from someone who has the very, very low or no educational background.


Chad: [00:27:43] Maybe they're illiterate to someone who is a CEO, you know, and those conversations happen daily. So you have to have the communication skills to be able to rapidly bridge all that entire spectrum an trying to get the students to have some insight into that. Really, anyone is really difficult and I have to be really careful when I try to bring up like how they may communicate or something. I'm like and I feel like I have that responsibility because no one ever told me, you know, like I was probably a little weird in my twenties, to be honest with you, as a result of my hearing loss and interpersonal skills. But no one ever really took the time to say that and to help me understand. What they meant because this is not hearing loss is an invisible diagnosis. The ways that it affects people is invisible. There's no tangible quality to it that you can just point to outline and this is how it's affecting you. So there's no language for laypeople or really even professionals to describe some of the issues around hearing loss other than language deprivation or social deprivation. And that is something that I think is a really hard skill to have, and it's still something that I'm working on in developing with both my patients and students. So.


Carrie: [00:29:15] Yeah. No, that's that's good. Kind of that other perspective that people don't get because it is invisible and it's hard to figure out what some of those nuances are along the way. So I'm going to just ask a few other questions. As for a surgeon, so one question would be. Since you are a surgeon that has a cochlear implant. How would a patient or a potential patient choose a surgeon? What? What? What should they be looking for in a cochlear implant surgeon?


Chad: [00:29:54] I think I would probably have to answer that based on if I needed a cochlear implant, what I would do. I would find first just the technical qualifications of the surgeon. I would look for someone who has a hearing preservation rate of 90% or greater. That tells me that they had the skill to get the electrode in the exact right place at the cochlea and that they care, because not everyone does. The second thing I would look at is not just the surgeon but the audiologist. For me, I would want to walk in an office and see that hearing assistive technology is offered and encouraged to patients because 80% or eight out of ten patients will get better with a cochlear implant, get better hearing, but about 20% won't. And you really have to be prepared to be in that 20% where you don't get increased benefit relative to your hearing aid. So I think that having a surgeon and an audiologist who looks at that big picture is super important. I think it shows that they have the foresight and the care to invest in these resources for their clinic. I think also I want a team that understands what I do for work and can relay to me what it's going to be like after an implant and help me prepare for that, for example. So some of my patients are fortunate to be able to work remotely and they have questions about, Well, what am I going to do if one of my ears is down and I really need that ear? How am I going to hear, you know? So I think that having a surgeon who understands that and an audiologist who understands that as well is really, really important. So you have to look at the whole patient when you make these decisions. And I think that is super essential. Mm hmm.


Carrie: [00:31:59] Yeah. Because I think sometimes the layperson thinks that you get a cochlear implant, you get it activated and you just go and there's that was the easy part, right? Everything afterwards is the hard part of getting a cochlear implant. So I think that is great advice of looking at a clinic that that is looking at the whole person and the audiologist and surgeon are in good connection with each other and communicating with each other to. What? I'm going to ask another question. Are you ready?


Chad: [00:32:34] Sure.


Carrie: [00:32:37] All right. So should someone wait? If they are a true candidate for something better to come along? So they went through the whole like consult and the the clinic says, Hey, yep, you're definitely a candidate. And then the patient or the family is like, Well, I think we're going to wait because maybe stem cell research or hair regeneration or technology is going to get better.


Chad: [00:33:10] No, I don't think people should say.


Carrie: [00:33:13] Yeah. What would you say.


Chad: [00:33:16] For stem cell? Hair cell regeneration therapies? I would say definitely do not wait there consistently. Is it going to be another ten years? Another ten years? So the other thing is, if you're young and you get one of these therapies, say you're in your twenties, you have another. 50 to 60 years of life ahead of you. And that's a long time that a complication from one of those therapies could develop, you know. For some medicines, we don't see their complications come out until like 30 years later. So this is a real this is a big deal if you're in your sixties or something and, you know. These therapies were actually available. It's a different story, but there's nothing really on the horizon horizon for the immediate future in terms of benefits. There's only one. There's only one important advancement and that may be coming out. And I honestly don't know what the status of this is, is having steroid eluting electrode arrays. And the reason that's important is when we do implant surgery, we can give you steroids around the time of surgery. We can put steroids right by the electrode. But there's that's really actually absorbed pretty quickly when we do that to try to preserve residual hearing, decreased scar formation inside the cochlea. And because that clears up so rapidly.


Chad: [00:34:54] The real loss of hearing, if it occurs, happens in the next year usually, and as a scar builds up. So there have been some steroid eluting or steroid releasing electrode arrays that are designed to release steroids for a while until the body stops its activity against the scar formation. And that would be the only thing to wait for in my mind. But even then, people who have residual hearing and they keep it for a while and they lose it, they're still going to be doing better than they are with their hearing aids. So it really depends on how long are you going to wait, because a lot of people don't realize how their quality of life is meaningfully impacted. And to be honest with you, I don't. I, I don't think that I would wait. But that decision may be different for someone who has a lot of residual hearing and maybe they're a musician and they need that actual acoustic hearing that could be benefited from a steroid eluting array. But at the same time, they could get an implant in one ear, a standard one, and then wait till they implant the other ear. It really, really just depends on the patient and what their priorities are.


Carrie: [00:36:18] Yeah. Sometimes being in more pediatric educational, I get that question from parents a lot. And for I think children waiting isn't really a good answer if they're truly a candidate because of the neuroplasticity of the brain and language development and education that goes along with it. But I see a point for an adult who has a lot of residual hearing and maybe going bimodal might be a great option to.


Chad: [00:36:49] Right. You bring up a good point because kids with hearing loss, if they're born to hearing parents and they don't sign, that is the goal is not hearing the goal is language development. And they have to have access to all speech and language. And if they need an implant, they need an implant. If the parents sign is a different story, especially if the kid is embedded in the signing environment, because they will be getting language, the community with which to which they're exposed to may be smaller, but they're still going to be developing language. And that's a good thing. Mm hmm.


Carrie: [00:37:24] All right. You ready for another question?


Chad: [00:37:27] Bring it on.


Carrie: [00:37:28] All right. So you touched on it earlier, but what are the limitations of a cochlear implant?


Chad: [00:37:37] So the limitations of a cochlear implant, I think you can think of it as really as we hear. Because we hear changes in pitch and rhythm across many frequency bands. And the cochlea is kind of like a piano keyboard. It has a spatially separate sound out from low to high frequencies. And a piano keyboard has 88 keys. And we hearing people can very easily tell the difference between each one. They can tell whether it's a happy or sad note. They can tell whether what the melody of something is. If you just leave, pitch in there, remove all the timing cues, meaning each key is pressed for the same amount of time. There is a defined interval between each key presses called asynchronous melodies, and people with cochlear implants can't hear that. Identify those well. So music is primarily heard or pitch is primarily heard is changes in volume across several frequency bands, and that is a big limitation of cochlear implants. They actually do really well in quiet for picking up words, but when you start moving over into complex listening environments, noisy speech, particularly when that speech is competing speech, then the pitch information becomes crucial. You need to be able to segregate various audio streams based on their pitch, and that's how normal hearing people can pick out a voice can pick a voice out of a crowd. They hone in on that fundamental frequency, they pick that voice out, and their brain will silence or become inattentive to the other voices. On people with cochlear implants because they don't hear pitch well, they have 16 to 24 electrodes and really you need about 64 if you're going to start getting up into being able to hear pitch better.


Chad: [00:39:46] But it's not possible with the cochlear implant to deliver that much information. It's a different story. But because you don't hear pitch, you don't hear music. Well, you don't hear speech and background noise as well. I think those are the two main limitations for implants. That also translates into another limitation, which is we think of hearing speech as hearing the words. But really they're and that's called lexical speech. But really, there's an entirely other different property of speech, and that's called indexical speech, where we hear the emotion, the tone, the gender, who the identity, who is speaking. Are they healthy? Are they tired that day or are they physically fit? You can tell all sorts of things, dialect where a person comes from, how much money they make. You can tell all kinds of things from Indexical speech and people don't hear people with cochlear implants don't hear an indexical speech problem. Excuse me, Do not hear Indexical speech cues very well. And I think this leads to some of the communication issues that we have because normal hearing people, they are enveloped by another person's voice. It's like going out and looking at a mountain vista. There's no there's an emotive quality to it and there's no processing of it is something abide that hits them and they're processing both the words and speech at the same time. And even the words. People with normal hearing don't hear an individual words, thoughts pop in their head. They have a vibe associated with that based on the indexical properties of speech.


Chad: [00:41:26] And people with cochlear implants are using so much energy to hear and trying to figure out every individual word. And that's just the word that they may miss out on these indexical properties that communicate what a speaker means beyond what they actually say, the hidden part of speech, so to speak. So this is where the communication problems of hearing loss arise from is not having the complete picture. And that is not communicated to our patients as well as it should be. I think it's one of the reasons why people find it hard to access a higher career as competitive careers because they're not explicitly taught this information. The deaf community in it's. In his desire to be seen as equal on. I think wants to believe that you can replace this information visually. But we know that that's not the case, that people either don't identify it or if they do, they don't process it in real time just by seeing the emotions on someone's face. So I think that we're having a greater insight into understanding that how well someone hears emotion in voice has more to do with quality of life than actually how much the implant benefits their ability to hear the words of speech. So basically, the improvement in quality of life after your cochlear implant is more correlated not with how well you hear the words of speech or how much you improve, but how well you can identify the emotion in people's voices. And that's a big finding. And it's not really harped on or communicated to our patients enough.


Carrie: [00:43:16] Mm hmm. And on that topic, do you think there's ways that as the professionals, we can teach that differently. Or do you think that's just the final limitation of the cochlear implant as we speak today? Maybe it would be different in the future with advancements in technology, but do you think that some of these skills can be taught to help with communication better?


Chad: [00:43:47] I think that some people naturally get this stuff. I mean, we have different personalities and temperaments and they naturally get this. So not everyone is going to have this problem. So I think that's one thing. And two, I can't tell you how we teach this better to our patients. But I can tell you what I do when I'm in a situation. If I'm not sure what the tone I'm hearing is, I will say, tell the person I'm hearing this. Is this what you mean? And when it's a really complex situation, even in quiet and quiet, I will stop listening to the person and just watch their body language and take a second to take it in. And I also explain to people in complex situations that I have a problem hearing tone and. And this also brings in to a second thing that we don't think about the limitations of cochlear implants is that we're talking about getting the information that expressing yourself well, like having the soft skills is really important. So what I actually found is there are some stressful situations in private practice when we're talking about financial issues and accounting issues where, I mean, that is that affects like my pocketbook at the end of the day, you know, like how much I'm able to live on. So that's super stressful sometimes. And I've had to learn to be to be very careful, even even if I'm very upset inside, to not let it come out in my voice, because I've since learned that hearing people hear that very different, where it's like mildly upset to me, like it is like cutting and abrasive to the hearing person. And you laugh, but I mean, like, it's something I've had to learn.


Carrie: [00:45:38] Know. Well, that's a good insight to have about yourself. But you bring up another good point that I had a question about, too, is advocacy and being able to kind of share, you know, with others when you do, you know, need someone to repeat or you want to know their tone or things like that. What advice do you have for individuals about being a better advocate? Because that can be really hard and like you said, a stressful situation or with people you don't know well.


Chad: [00:46:09] I think that on. Advocating for yourself is difficult because even though there's a legal framework around it now, at the end of the day, it's just someone else asking another person for help. And I think going in there with the right frame of mind, that is the initial most important thing. No one owes you anything. I mean, at the end of the day, no one has to provide you anything in terms of like emotional support or. Yes, they will have to do that. I mean, what I mean by that is you can't go Yes, you have the legal rights, but you can't go in expecting someone to drop everything and help you, you know. Other people have lives, too. The second thing is, most people want to help. 95%, 19 times out of 20 people will help you. But you have to be able to make exactly make your need known. Exactly. And tell people how they can help. For example, these are two different science findings and not necessarily correlated. But they struck out to me because if you look at people with hearing loss, women out earn men. And usually there's a 20% difference where men are outearning women by that to $0.20 on the dollar. So in hearing loss, it's reversed. Also, if you look at how people manage hearing loss, women manage it differently. Men will say, I have hearing loss, Women will say, I have hearing loss. I need you to repeat this for me. So telling people exactly what you need is really important because. People can't figure out your problems for you. You have to think about think about it. The other thing that I would do is you don't ask a question unless you know. Sorry, tell me. The other thing is when you frame a request for an accommodation, you ask it in a way that a person cannot say no.


Chad: [00:48:12] For example, if you give someone a remote microphone and they don't want to wear it, they just say, I'll talk louder or something. They may be your boss and you really can't correct them. So one thing you can say is that. I had this example example with a medical student like I was in that situation myself and I didn't know what to say because of the power differential. They had a medical student come up to me and ask the same thing, and I immediately came up with an answer. It's kind of crazy how getting out of that stressful training environment changes things. But I told the student, I said. You tell the on the attending physician like you are a great surgeon and I want to learn everything I can from you so that I can be a great surgeon, too. And if you are if you don't wear this microphone, then I am spending all my time, time working to hear and not working to learn. And those are too. And I can't become the best surgeon if you don't do that. That's what I mean by asking a question in a way that someone can't say no. The other thing is you need to think What? What they may say. No, no to kind of like set your request up so in a manner which answers their questions or cuts off avenues for denial. And then you need to smile and say thank you because people are helping. You know, if you help open a door for someone in a wheelchair, they usually say, thank you. You know, this is the same thing. So. It's work on their part.


Carrie: [00:49:52] Yeah. I like what you said about practicing some of those responses, just kind of anticipating maybe what someone might say and then practice some of those responses so that they are flipped into a positive way and they can't say no. But it takes a lot of practice and.


Chad: [00:50:10] Thought it does.


Carrie: [00:50:11] Courage really to say it.


Chad: [00:50:14] And it's unfortunate because no kid with a hearing loss should have to practice that their audiologist or their doctor should tell them or point them towards resources. Like, here are the most important things you need to know about your hearing loss and how to manage them. But instead, we have kids, adults constantly reinventing the wheel with every new diagnosis of hearing loss in a vocational age person. So it's terrible.


Carrie: [00:50:44] Yeah. Well, maybe we can. We can change to that.


Chad: [00:50:49] Maybe.


Carrie: [00:50:51] So I'm trying to think if I have any other questions. What do you envision for the future of cochlear implants to be like? Do you have any wishes?


Chad: [00:51:20] So I think my vision for the future for cochlear implants or for people with severe and profound hearing loss is more holistic health care where people are given the tools they need to. Thrive with their hearing loss rather than giving tools for maximum speech perception. It's a subtle difference. Not rather than let me back up on. So my vision for cochlear implants or treatment for people with severe and profound hearing loss has to do mostly with a lot of the things we've touched on today, like getting better counseling for patients because what people need are the tools to thrive with hearing loss. And that's going to go beyond what the tools you have for getting maximal speech perception. Those are two different things. And for example, for today, I mean, I would probably trade 10 to 15% of my hearing now to know the things that I know now, but know those when I was a kid. I think the second thing as far as implants go, I mean, we have as a medical device, we have a lot of things on the horizon which are super interesting. I think the nearest one is going to be the application of deep learning, filtration of noise out of a speech signal and where where people will go into a restaurant and they will hear as well as they do in quiet. I think that's going to be amazing.


Chad: [00:53:04] And these. Things are being developed right now. They just can't be put into a teeny, tiny ear level of processor. The most interesting thing as a medical device, I think has to do with light based electrode arrays where we instead of using electricity that is spreads inside the cochlea and stimulates channels next door and degrades information or degrades the sound of an implant. We're probably going to move to light based arrays that stimulate the cochlea with very fine stimulation, and those may it may or may not involve genetic therapies to make certain parts of the cochlea sensitive to different kinds of light. But those are still very early in their development. I don't know where it's going to take us, but I think right now I think the deep learning algorithms will be really important. I think that there are other things where things that may develop as we get into augmented reality and can have computer assisted interpretation of the environment. For example, kids with autism can wear Google glasses that help them identify the emotions on faces, and that teaches them how to communicate a little bit better. So I think some of those things may come for treating hearing loss too, and improving communication skills. So there's a lot of things out there. I don't know what the future is going to look like.


Carrie: [00:54:44] It's exciting to be part of it and to be on the receiving end of some of the excitement to every time something new comes out. I really excited about trying it out and seeing the difference in the real world, which is fun as well. So is there anything I didn't ask you that you wish I would have that you would like to share today?


Chad: [00:55:11] I don't think so.


Carrie: [00:55:13] Anything else that I that our listeners might be like? Dr. Ruffin, with his experience as a cochlear implant user and as a surgeon. Any advice for anyone?


Chad: [00:55:31] I think I would just tell people to be assertive. You're not the first person to go through some of these things. And having having a an illness or a disability that affects communication, both receptive and expressive so profoundly is hard to overcome. But I mean, like people have done it, you know, and the number of people who are achieving great things despite having severe and profound hearing loss, you know, more and more people are doing it. So it's not they're not reinventing the wheel. So I think the I think a key thing is to seek out people who have had an experience similar to yourself and look in advocacy organizations, because I think that will improve quality of life.


Carrie: [00:56:23] Mm hmm. Yeah, I agree that peer to peer connection of others that are in your shoes really motivates you and gives you a lot of insight too. So I'm thankful to know you as well from a hearing care professional point of view and then also as a fellow cochlear implant user. But we can share a lot of great ideas, but I just want to say thank you for being part of the EmpowEAR Audiology podcast today. It was a great conversation.


Chad: [00:56:53] Thank you for having me. I really enjoy your positive energy and enthusiasm and all the work you're doing. I'm super glad you said hi at that meeting at ACIA in May.


Carrie: [00:57:03] Well, and I'm super glad that you said yes to being on the empowEAR Audiology podcast. So listeners, I hope you enjoyed the podcast today and please share it with others. I encourage you to visit the Facebook page and engage as well.  Transcripts for this episode are available on the 3C Digital Media Network website and thanks for spending time listening today.


Announcer: [00:57:26] This has been a production of the three C Digital Media Network.




Episode 50: empowEAR Audiology - Dr. Carrie Spangler


Announcer: [00:00:00] Welcome to episode 50 of empowEAR Audiology with Dr. Carrie Spangler.


Carrie: [00:00:15] Welcome listeners to the empowEAR Audiology podcast. I am going solo today as I am celebrating a milestone episode, The Fabulous 50. In addition to that, I'm also celebrating my birthday. And for the record, not a milestone birthday. This is also the holiday season of gift giving, and I am grateful for the gift of sharing with all of you. And I will talk about in a moment. I am grateful for the gift of hearing. And it's also a time of the year when we're given the opportunity to reflect on what was happening and then the whole year behind us in 2022. Back in January of this year, I bought myself a gratitude journal, which was a simple and powerful way to start the year. And each day it lets you see what is present in your life instead of what isn't. As I reflect back on the purpose of empowEAR Audiology, I am grateful for the grateful is the theme for the 2022 Journey. The lessons and the growth. Looking back on the year, I am grateful for where how your ideology is at and I'm also excited for where and how your ideology is going. As part of the 3C Digital Media Network, whose mission is to connect, collaborate and communicate, empowEAR Audiology has had a successful year living out this mission. I wanted to start this episode with a personal story. It was exactly one year ago when I wrote a blog for hearing Spanglish blog titled Relieved and Grateful.


Carrie: [00:02:05] Journaling the checkpoint for my successful cochlear implant restart. For those of you who don't know, I had experienced electrode migration for my internal device, which resulted in having to be re implanted two years after my initial cochlear implant surgery. I laced up my shoes for the marathon and have had a smooth training year and 2022. Thinking about each Empower Ear Audiology episode, I am reminded of what Rebecca Alexander shares in episode 48. She said Choose to be grateful. Be happy with what you have today and be optimistic about tomorrow. These words hit me personally, as it has been a year in which I am grateful for cochlear implant technology. Well, communication is an important part of my life personally. Communication is a two way street where messages must be both sent and received. It is complex and as humans we are wired to be connected with those around us. In 2019, I realized that oil communication was becoming more and more difficult with the hearing aids that I had. My family and my friends. First language is spoken English. I did not want to lose this connection with them and recognize that I was struggling. I am naturally inquisitive of others, hence why I love interviewing guests and the empowqEAR Audiology podcast. Deciding to venture on the cochlear implant path gave me my natural language back to me. I reconnected with my parents, my husband, my kids, my friends and colleagues.


Carrie: [00:03:59] I was back to being curious and confident, striking up conversations with new acquaintances. I treasure streaming phone calls with my parents on my way to work to find out what they are enjoying that week in retirement. Listening to podcast Am I long drives between school buildings to serve Students who are deaf and hard of hearing was given back to me. Turning up my favorite tunes on the radio or on a streaming device to enlighten my day. When I reflect back on the marathon journey of living with a cochlear implant, I realized the alternative of not pursuing this for my own personal journey would have been depriving myself of the opportunity to continue strengthening the meaningful connections with those I love and those who I will come to know and love in the future. During this time of the year, as we go into the gift giving season, I am grateful for the gift of my cochlear implant, my hearing aid, my assistive hearing technology, my communication strategies. And I am grateful for all of you who support me on this cochlear implant marathon so that I have the opportunity to grow as a human. As I said earlier, this is the 50th episode and I also wanted to hit the grateful button with a year of review of Empower Audiology. Guest And I wanted to thank you all as listeners. Reviewing this past year, I can just say that I am grateful for all of the gaffes that took their time out of their busy lives to be part of an episode.


Carrie: [00:05:44] This podcast would not be possible with without each of you being willing to give up some time and show your talents. I genuinely get excited each and every time I get to have an interview set up and you can visit the website to listen or you can subscribe on Apple, Spotify and Google Play to catch all of the episodes. This may take a few minutes to do a rundown of the 2022 guests, but I hope you are listen as I do a short recap of this amazing year. Grab your phone or a piece of paper and make note of the episode that pique your interest or the ones you must listen to again. So starting back in January with episode 33, we had Dr. Don Goldberg share his journey to becoming an audiologist and the important professional work for the joint committee, an infant hearing and additional professional research projects that he's involved in. Episode 34 Dr. Derek Houston shows about how language impacts children with cochlear implants and a proposed conceptual framework to explain the relationship between language input and outcomes. Episode 35 with Dr. Kim Maher. How to Advocate for Educational Audiology Services When the Service Does Not Exist. And a School District. We had episode 36 with Dr. Christina Blaser talking about the importance of understanding assessment patterns and trends for children who are deaf and hard of hearing when you are the FLP Episode 37 with Lisa Kovacs, a parent, an advocate who works for hands and voices whose motto is powerful, stating What works for your child is what makes the choice, right? She also shares about the different programs that she's involved with in the organization.


Carrie: [00:07:41] Episode 38 Dr. Jessica Sullivan and Dr. Lauren Callender also discuss the impact program, which increases diversity within the fields of speech, language pathology and audiology. And Episode 39, Kayla Gurnard, chief strategy and program officer for AG Association, talks about servant leadership and how each person is a leader with them. In episode 40, Matt Hayes shows his emotional and physical journey of losing and regaining his hearing. He shares how he composed a soundtrack of silence as he was losing his hearing and the journey to getting an auditory brainstem implant. In episode 41, I interviewed Sarah Robinson, who is a speech language pathologist, and she opens up about growing stronger in her acceptance and advocacy as a deaf and hard of hearing individual. And Episode 42, Dr. Jessica LaFleur, my colleague and coworker, shares about her nonprofit Piper's Key and her mission to unlock representation for children who are deaf and hard of hearing. And Episode 43, Dr. Johnny Sexton discusses the Care Project and Educational Audiology Services with a threaded theme of changing the culture of communication.


Carrie: [00:09:06] Episode 44 Lin Wood, who was one of my childhood audiologist. We take a leap back down memory lane, and Lin also shares about her professional career working with children and starting her online resource store. Listen with LAMB. Episode 45 Dr. Yvette Stager is a licensed psychologist working at the University of Miami Institute. She shares about her research and experience working with families, navigating through parental stress and developing self efficacy. Dr. Uma Thurman is a teacher of the deaf and she shares about the opportunity she has had to pay it forward through her work as a professor and through her nonprofit listening. Together, we take a deeper look into the role of the teacher of the deaf in the field. Episode 47 Jody Cutler, mom, activist, entrepreneur, producer, shared the big news that Rally Caps movie was selected to be part of the 31st Heartland Film Festival. The message about accessibility and inclusion is important for the big screen. Episode 48, Rebecca Alexander, who is an author advocate, fitness instructor, psychotherapist, shares her own journey with Usher Syndrome Type three and set the example of choosing to be grateful. Be happy with what you have today and be optimistic about tomorrow. And Episode 49 Dr. Matthew Busch is an ecologist, neuropathologist and professor at the University of Kentucky. In this episode, we have a conversation about how social determinants of health are critical conversations and considerations for improving hearing health care for individuals and families.


Carrie: [00:11:06] I want to say that I don't have a favorite episode because I love them all. I am grateful for all of you, for your storytelling, whether it was personal or professional. I love learning from each of you and digging deeper into topics to empower your others, and I cannot wait to meet more. Guest as we kick off another 25 episodes in 2023 to. Thank. Thanks to all of you for tuning in twice a month to catch the latest episodes. I have heard from many of you over the year and continue to receive positive feedback. It brings me great joy to hear when a college professor shared this podcast with students to listen. It warms my heart to find out that a parent was inspired by another parent sharing their story. And I am encouraged when an adult who is deaf or hard of hearing realizes that there is others out there in those shoes. Listeners keep listening. Please share with others. Engage with me on the empowEAR Audiology Facebook page and please give a five star review. Consider writing a favorable comment. All of these actions help empower others to listen and so that others can also benefit. Listeners, if there is someone that you want to hear from, please reach out and let me know. Grateful. Grateful is the word of the year, and I am grateful to everyone for believing in me. Cheers to year three and 25 more. Thanks again for listening.


Announcer: [00:12:47] This has been a production of the 3C Digital Media Network.





Episode 49: empowEAR Audiology - Dr. Matt Bush

Announcer: [00:00:00] Welcome to episode 49 of Empower Ear Audiology with Dr. Carrie Spangler.


Carrie: [00:00:16] Welcome to the Empower Audiology podcast. I'm really excited to introduce our guest today. It is Dr. Matthew Bush and he received his medical degree by Marshall University and in West Virginia, and he completed an Otolaryngology research Fellowship and Neurotology and cranial based surgery fellowship at the Ohio State University Medical Center and Nationwide Children's Hospital Research Institute in Columbus. He is board certified by the American Board of Otolaryngology, both in otolaryngology and in neurotology and cranial based surgery. Dr. Bush is actively engaged in clinical research with a special focus on hearing health care disparities. He has published multiple peer reviewed papers on the topic and is supported by the National Institutes of Health. His research and clinical efforts are focused on providing timely access to care for children and adults. He has received multiple awards for his teaching and research and is involved in multiple national organizations as well. So, Dr. Bush, welcome to the EmpowEAR Audiology Podcast.


Matt: [00:01:28] Thanks, Carrie. It's a pleasure to be with you.


Carrie: [00:01:30] Well, I just wanted to say it was a pleasure to meet you last month when we had an incredible flight experience as we are trying to get to a common meeting in Oklahoma and we got to spend quite a bit of time delayed in the Atlanta airport.


Matt: [00:01:51] Yeah, you know, adversity tends to make lifelong friends. And when you're stranded somewhere or dealing with some of the the craziness that is life as we know it now, whether that's through travel or the pandemic, you know, impacts, we're just thankful to find, you know, birds of a common feather and friends in our in our field. And so, yeah, we by chance were able to huddle together and and sort of make a plan and and move on through the adversity.


Carrie: [00:02:22] Yes. Well, it definitely made our wait and delay a lot more enjoyable than in the airport but thanks for being a part of this today. And I always like to ask my guest to have ventured into our little niche of hearing health care. How did you decide to specialize in ENT and working with children and adults with cochlear implants.


Matt: [00:02:50] Well, I have been very, very fortunate to have just some really immense mentors and really incredible opportunities that led to where I am today and allowing me to be in employed and do my dream job. That's that's that's the thing I would I'm thankful that what I do is not I get paid to do it, but I would do it for free if I if I had to, because it's just that rewarding and honorable to be able to be involved in the life and the care of patients that are entrusting so much to us. But I grew up in West Virginia, the last of four children in a family of four with two parents who were high school sweethearts. They didn't go to college and raised in an environment where we really valued community and connection and family, but education, health care resources, those things weren't necessarily at the front or the foremost of our brains. And thankfully, we were blessed with health in our family. We didn't have any major health problems in our nuclear family, but certainly those influences of rural health and rural health care were a part of things that I saw early in life and was was witness to the influence, kind of the directions that I went in health care.


Matt: [00:04:10] My grandfather was a woodworker, really, a jack of so many trades, as many rural farmers and people who existed and survived through the depression tended to be. But he was a woodworker and would make all kinds of very interesting things. He would make kind of the casing for like grandfather clocks and then find the the components that you would purchase to sort of make people a sort of a makeshift grandfather clock, but just really was somebody that used his hands to do really cool things. So I knew I was headed down a path to use my hands or at least some kind of manual skills. And as health care became an opportunity, then the as I began to think about the different disciplines and had the different mentorship opportunities in health care, it was clear that otolaryngology was a field with so much diversity of the types of patients and the things that we would treat. But I really became fascinated in the in the anatomy, the physiology, the complexity of the auditory system and the ear the ear surgery where fractions of millimeters make a huge difference between hearing or not hearing or a smiling face or a drooping face. So that that type of the stakes and the complexity really very much appealed to me.


Matt: [00:05:35] I think one of the most influential things that sort of made head neck anatomy and the in the ear anatomy come to life was that while I was in medical school, I lived adjacent to the basic science campus portion of the medical school. And in Huntington, West Virginia, I went to Marshall University and the GROSS Anatomy Lab were hiring medical students to work with a head neck anatomy professor to work on dissections that would be used for testing purposes. So different structures would be pinned and used for testing the next class of medical students. So I was basically paid as a medical student to do head and neck dissections and explore head and neck anatomy. It's a bit morbid, I realize, and I don't know, probably some of those old scrubs still smell a little bit like formaldehyde, so it might bear some of the the memories of that that employment. But honestly, that was one of the most impactful things that just let me take a front row seat of all of the amazing anatomy and complexity of the ear, the skull base. And so these formative experiences just sort of really directed me down this very rewarding field.


Carrie: [00:06:53] And that's a great history. It sounds like you said you're growing up in the rural parts of West Virginia and then finding your niche in college really spearheaded you in some of the work that you do right now. And I know you have a heart for humanitarian work, which I want to talk about today, too, but you also have done a considerable amount of time studying health care disparities. And so I'd like to maybe spend a little bit of time talking about your research on health disparities and how that impacts access to health care. Can we start a little bit with? Well, first of all, before we go too much further, I also thought, do you want to share a little bit about what your role is right now at the University of Kentucky?


Matt Bush: [00:07:46] Yeah, sure. So at the University of Kentucky, I am a professor and vice chair for research in the Department of Otolaryngology. It's a program that I have a lot of connections and a history with in that I did my residency here, so I went to medical school at Marshall in Huntington, West Virginia, and then came here for my residency program. And the residency is very different, not larger than it was when I was a resident. Here we have a number of residents and faculty and researchers. So it's a it's a it's a busy growing place. It's been an exciting place to be a part of. I've also had an opportunity to be involved in health care disparity research and health care research related to policy. And so I have I hold an endowed chair that is supported by a foundation for Healthy Kentucky that supports research and scholarly activity to promote health care access, research and policy changes. And so that has been an a career expanding and also opportunity enriching situation to be able to work with colleagues that are in other disciplines, such as in public health or in behavioral science or in other fields to be able to kind of consider where does hearing fit in all of this? Often when we think of health care access or health disparities, we're thinking in terms of some of the the big diseases, the cancer, the diabetes, the obesity, the heart disease, some of those big, bigger items that are affecting millions and billions of people worldwide. But there are so many things that, as we know within the hearing world, that hearing such a such a precious, cherished sense that we all value until it's taken away. So that's the that's the what I do here at UK is involved in kind of not only the clinical side of things, but also in research and then education with residents and medical students.


Carrie Spangler: [00:10:03] Yeah. Wow. You have a lot of hats that you're wearing. And I.


Matt Bush: [00:10:10] Know in.


Carrie Spangler: [00:10:10] The day outside of the university as well, but which kind of leads me to some of your research and maybe taking a deeper dive into how the social determinants of health impact hearing loss. Is there anything that kind of like a story or a patient that was a driver to digging deeper into this?


Matt Bush: [00:10:35] Yeah, You know, any good researcher or any good research project is rooted in real life experiences that I'm a firm believer of that as I mentor medical students and residents, that unless it means something to you personally and professionally, then you might complete the task, but you won't necessarily enjoy it and it won't be really like a springboard to other work or, you know, you kind of creating your own path. So that's an issue that is definitely something that has influenced me, that my work in health care access and health care disparity as it relates to hearing loss is all rooted in experiences that I had not only as a kid growing up in a rural community, but then also attending a medical school that focuses more on rural medicine, and that's the primary recipients of the care. And a lot of the research activities are in rural communities within that portion of West Virginia, but also in my residency where I am now in Lexington, Kentucky, at the University of Kentucky is right at the at a county that is adjacent to a wide region known as Appalachia. And the Appalachian region stretches from Mississippi to New York. And 8% of the US population is in is in Appalachia. About 30, 25 to 30% of the population of Kentucky reside in Appalachia as well. And Appalachian is Appalachia is determined by your county that you're in, and that's determined by the Appalachian Regional Commission, which decides which county is Appalachian or not. And that's not really a voting process. It just is what it is. But this is a region that's had a historical challenges with socioeconomic depression. Access to quality education, health care and health disparities. And poorer overall health care outcomes. And the Kentucky contribution or portion of Appalachia has been one of the most socioeconomically depressed regions of all of Appalachia, but then also of the entire United States.


Matt Bush: [00:12:56] So practicing in this area, I'm privileged to care for patients that live in throughout the region, but also this population coming from Appalachia, where we're seeing these challenges on a real visceral level that are impacting their lives And caring for patients here has impacted me as a father, me as a human being, and me as a physician, but then of course, me as a researcher as well. So as a resident, I, I was really just struck with some of the challenges in some of our pediatric cases. I mean, we had not just once, but on multiple occasions we would have a child who was anywhere from 4 to 5 years of age who would present to our clinic and had basically fallen through the cracks, through so many different safety nets or potential opportunities or appointments, and a child that might have been labeled as autistic or a child who had had so much, so much time, but yet so many little resources, so little resources and so little opportunities to actually receive clarity and diagnostic care, to receive clarity and treatment options and direction of care. And when you see a five year old that doesn't hear and doesn't have any means for communication, that's really impactful. And that really influenced me. And and as I then went off and sowed my wild academic oats and finished fellowship and other training opportunities and came back and that was something I realized that I don't know how I'm going to do it, but I need to figure out some way to define and describe and address some of these children that have fallen through the cracks or some of these patients that have really just lacked resources and opportunities.


Carrie Spangler: [00:15:01] And statistically, I know you mentioned about the statistics for the Appalachia region region, but how how much does that impact those with hearing loss? Do you know?


Matt Bush: [00:15:17] Well, I think that one of the biggest challenges for the whole Appalachian region, as most as much of the region that's from Mississippi up through New York, are rural communities. And so Appalachian might be a certain flavor or flair or regional imprinting of rural communities. But some of the issues that face that that vulnerable populations might face in rural communities are ubiquitous. And that could be whether you're in sub-Saharan Africa, in South America, regardless of where you might be. There are concepts and there's principles that affect individuals where there are health care deserts and limitation in access to any kind of health care provider, let alone a specialist in health care. And I think that's one of the biggest things that I think of when I think of Appalachia is the overwhelming hearing health care provider shortage that is throughout that whole region. That creates a huge blockade for anyone that would try to access hearing health care, whether they had means or the health literacy or not. If there's no providers, it's just going to be more difficult. It's going to be more costly to seek that care out. So that's one of the biggest things is is the the lack of expertise that's within those regions geographically. Mm hmm.


Carrie Spangler: [00:16:49] Yeah. And I think if the World Health Organization, they have five different domains that they kind of look at as far as social determinants of health. And I thought we could take a deeper dive into how this can either positively or negatively impact access to hearing care. And I know you've done a recent study and published an article really kind of diving into this as we look at student or individuals with cochlear implants. But you kind of mentioned that health care access and quality. Does anything else stand out in that area besides the lack of qualified professionals?


Matt Bush: [00:17:32] Well, if you look at each of those domains, you know, it sort of gives you these concepts and these things, these these things outside of the genetics and the actual biologic mechanisms that can influence health, either, like you said, positively or negatively. And so within the domains you can find and could describe the the people, the populations that are either getting the really good health care, really getting the great health care outcomes, getting the great access or have great quality, or you can define those that do not. And that's certainly not something that's just, like I said, isolated to rural communities. There are plenty of populations throughout the entire world whether that would be an urban environment or rural that would face these challenges when it comes to health care, access and quality. We have, I think, begun to describe where there is not access or where there's limited access. I do think we we are challenged a little bit in defining and describing the quality and the quality of of health care, especially as I think about rural communities. There are there may be some hearing health care providers, but perhaps they only see adults. They don't see children. You know, they're not willing to take Medicaid insured patients. So there there can be issues of quality as it relates to certain components of the the population that you're dealing with. And I also think there's a lot of opportunities within that particular domain of interventional work, you know, of I mean, and this is where I'm involved in is interventional work in that area. But I still think that there is much work to be done to consider initiatives and programs, grant funded proposals that would work to address health disparities. And and I think the NIH is doing a lion's share of the work to try to really push and promote researchers to do this. But it's a there's got to be partnerships to be able to think along these lines to address health care, access and quality. It's a it's a multi level aspect to deal with.


Carrie Spangler: [00:20:01] Is there anything that you have found maybe in your area of Kentucky to help move that needle a little bit as far as health care access and quality? And you mentioned grants and programs that to be supported? Is there anything that. You know, I've.


Matt Bush: [00:20:20] Well, you know, I think some of the the basic things are making sure that within our own health care system that, you know, it starts with us. I mean, the solutions aren't isn't someone else's issue and someone else's job that if we're part of the problem, but we're also part of the solution, so we have to work together. So I think that's that to me has been the first start. It's like asking myself as a physician at a major teaching institution, state funded medical school and hospital system, you know, how do we work to improve the quality, the access for our patients that either do know us and have seen us or don't know about us and or has been have been unable to see us. And so thinking about what you do programmatically is, is first and foremost. And I think that that has influence then what we look at in research proposals. So, you know, when I first got started in health disparities, I think I was maybe thinking like a surgeon, like, let's just get get to this. Let's just fix this problem and maybe not like a public health researcher, but, you know, to take a step back and to think, okay, telemedicine could help. But what if there are there's no literally no bandwidth on the other end of the of the screen? And what if the individuals don't have any kind of other tools or means to be able to give us some objective information on auditory function, especially in pediatric diagnostics and pediatric care? It's that much more complicated. So what we've done is realize that if we're going to address this problem, then we've got to make partnerships, partnerships with the community, partnerships with state funded clinics and programs that provide broader public health services than even that we are able to provide to some remote regions.


Matt Bush: [00:22:21] And then through some of those partnerships, develop some research protocols and ideas of, for example, we have a NH funded patient navigator program where we use a parent who has been through the EDHI system and the early hearing detection intervention and uses that parent and embeds that within the EDHI system. And we're studying to see is that effective to take infants who fail a screen or referred on newborn hearing screen and help them achieve a completed diagnostic test in the audiology clinic. And that's not just our clinic that would be in state funded clinics throughout the state. But those things were born out of no shows that that we were seeing within our own practice. And so and then as we talk with with the state partners, how can we then study this to show is this effective? Is it saving financial resources and and work hours in less work or less opportunities lost? Those are things that research can help address and answer. But there's just a really a great need for clinical trials and pragmatic trials that address this. It's we can't just stay in the let's describe the woeful disparity that we have with this population or look at some of the causal factors of why those patients don't come to the audiology clinic or don't get their cochlear implant at 12 months of age and they get it at five years of age. Let's work to develop interventional clinical trials. And that's that's really what I think, that it's important to move forward.


Carrie Spangler: [00:24:06] Mm hmm. Yeah. I like what you said about, you know, it starts with us and asking those questions from our perspective and then being able to implement some different programs and interventions and research and programs to try to help navigate through that. I know there are some other domains that in your research that you've talked about to and how that impacts access to care. One of the things was education access and quality. So do you want to expand on that and that the any kind of correlation between educational level and the access to like let's say, cochlear implants?


Matt Bush: [00:24:49] Yeah, it's a it's a really another very deep swimming pool to to just begin to jump into and to think about and the complexities. It's easiest for us as health care providers to sort of do work in our own sphere. But the educational environment, the educational quality and access is a bit foreign to us in some situations, at least from some research and scholarly activity. So I do think that there is ample evidence in. A an array of literature, including our own, that demonstrate, at least in the pediatric population, that parental education, parental health literacy influences pediatric care in general, but certainly pediatric hearing health care. Parental educational level has been linked to the timing of diagnostic services for infants, but also is connected then therefore to treatment timing. There are differences even in some research. As we looked at participants who have received cochlear implants and looking at parental level of education and there is a correlation between the actual language outcomes from children after cochlear implantation and their parental education level as well. So yeah, that's a that's a big issue. But certainly adult literacy and adult health care literacy and adult educational levels also influence access to care and their willingness to pursue treatment. We know the abysmal numbers as it relates to the penetration and utilization in the market of evidence based treatments such as hearing aids or cochlear implants among adults, and those have just not budged much above 10%. So we're seeing likely in rural communities that the educational level, it's much likely to have a lower penetration or utilization of those treatments in that population. We've we're just in the process of submitting and publishing a paper now where we've evaluated cochlear implant information that's available on searchable websites. And if you do web searches and get cochlear implant information and we're looking for non industry sponsored sources of information initially just to describe the readability.


Matt Bush: [00:27:28] And in general, the AMA recommends that we would not put out health education or health in health education for information or materials that would be beyond a fifth or sixth grade reading level. It needs to be clear and simple. It needs to have a limited number of really long, multiple syllable words, which we're really good at throwing in all kinds of complex wording into our websites and our information because we want to be comprehensive. But the problem is, is that if you look at some of the top websites, again, this is in in under review now, not in press yet, but we'll see if it gets published. But the the evidence is overwhelming that every essentially every website that we've found has a reading level no less than 10th grade. I mean, it's just overwhelming how much that we have written, well beyond the knowledge, the understanding and even the educational level of what would be recommended for public health information. It doesn't mean that we can't describe complicated things. We just have to do a better job of it. And we might look in our academic centers or within our climate control, you know, cochlear implant centers and feel like the problem is that the patients are not getting the education starting in elementary school. They don't have any health literacy and other areas of their life. They're their primary care doctors aren't providing them the resources of educational materials. So we're kind of again, like looking at others is like the problem. And then this this evidence shows like we're not putting out educational materials that are really likely to be understandable by the the larger population.


Carrie Spangler: [00:29:28] Yeah. Which again, you know, we talk about having low numbers overall and then you think about these rural areas and hard to reach people and they're if they happen to look, it would be above a level that they would anybody, you know, a layperson would would comprehend to get the information right.


Matt Bush: [00:29:49] That's right.


Carrie Spangler: [00:29:50] How does the community I mean, how can we maybe look at the community and connectedness in order to get that information for cochlear implants or hearing health care into these areas that don't have a direct access?


Matt Bush: [00:30:10] Mm hmm. Well, communities do play a very key role when when resources are limited and when groups of people are geographically or somewhat socially isolated, they find ways and means to survive. And there's elements of community trust and community sort of a community conscience consciousness of sort of how am I perceived within my community. And that's not unique to rural areas either. But this is a whole another domain that I think we have done little to nothing in at least I'm not aware of, and nor have I personally yet contributed a great amount of effort or output on it. It needs to be done, but we need to really understand that domain, the social and community context of how do people perceive, how do they deal with stigma, how do they deal with helping each other, and how do we work communally and within groups of people to sort of bring the patients to the table and patients having a voice in their care and communities, having a voice in the quality of their care and the access. So that has been investigated in a wide range of of other anthropologic studies and fields, but not necessarily in hearing health care. So I think that's really critical. We're engaged in some research now where we're it's important to us to to study populations and study health systems, again, that are outside of our own. I think, again, like I mentioned, that some of the solutions and some of the ideas innovation will come. It starts internally of how can we help to address the problem or be involved in the solution. But we also know that we do not have the answers.


Matt Bush: [00:32:10] We do not walk in the shoes of those that are in certain communities. So to get into rural communities to as a self labeled rural health care researcher has been critical. So we currently have a funded study through the NIH, supported by the NICD that looks at rural health clinics. And rural health clinics are a unique health care system that has special resources and some opportunities. Some of their billing practices through Medicare and Medicaid have a different process than other private practice or other academic centers, and their charge is to provide care for rural communities. And there's an application process, and they could lose that rural health clinic status if they if their population changes or their practice changes. But that type of a clinic is important for us. It represents kind of an outpost, really a one stop shop for many rural communities and for us to go there and to learn from providers, to learn from patients of what does hearing loss look like in your practice, in your life? What does hearing health care look like? How can we use resources within the community to help address this? And similar to what we've done with the pediatric work, we're interested to see, could patient navigation sort of a leader within the community, a well respected person who could could provide some health literacy on a very layman's term, layman level, but also support self efficacy could could support logistics because they are a part of that community, not because they are they going to get paid for this or they're going to be a part of some long term employment for that practice.


Matt Bush: [00:34:11] But we're looking to see how navigation or how communities can be involved in helping their constituents and their residents get access to some specialty care when it's not necessarily available within that quote unquote comprehensive clinic of primary care clinic environment. So this is how we we're thinking about. We really value communities. We value their input. Another plug that I'll make here regarding communities is that I, I preach the good news that everybody that's doing anything related to hearing health care as a clinician or even as a researcher or both even should be engaged and involved and kind of developing a community advisory board, a community advisory board that's made up of stakeholders, of patients, made up of policymakers, perhaps educators, other members of the community, health care providers as people can come to the table. It gives an opportunity, a voice for those that may not have a voice otherwise. A community advisory board shouldn't be a group of cochlear implant surgeons and cochlear implant audiologists and cochlear implant speech language pathologists or educators. It should involve parents. And so that's the thing, is that we want to know, I mean, how can you use it for your health care is that you would hopefully learn about where we're missing the boat, where we're hitting the target, how we can improve things from just a practical logistics sense. But in research, you're learning about innovative ideas, better ways to recruit, better ways to design interventions that are culturally appropriate. And you can celebrate together that that shared work.


Carrie Spangler: [00:36:07] Yeah, that's a great idea to have lots of different voices at the table to really understand the community. But I love your the ideas that you guys have implemented about the patient navigator and having someone trustworthy within that rural community to be able to share information and hopefully get them, you know, whoever to that next step. Because if they don't have a particular provider or center right there in that rural community, if they can build that trust and maybe they would be more likely to go outside of their community to get the health and care that they need.


Matt Bush: [00:36:46] Yeah, we don't know if it works. And that's that's what we sort of maintain this equipoise, that if we knew that it works, then we'd be fools for doing research. But we should just sort of build it into policy. But we don't know if it works. We don't know if it's cost effective, we don't know if these things are sustainable. But that's the beauty of being involved as a pragmatic, community based researcher is that we get to study this in a formal sense and see does it make a difference? And it makes sense. It's not rocket science. I mean, it kind of we know there's value that is there. We don't just we just don't know exactly how that looks in the long run and how that may influence hearing health care moving forward.


Carrie Spangler: [00:37:32] And know you mentioned earlier that, you know, sometimes we need to look at outside of profession to see what's happening there, too. Do you know of any fields of study that have done a good job with like a patient navigation model?


Matt Bush: [00:37:49] We've totally plagiarized the oncology world for patient navigation. Honestly, that's the roots of patient navigation. And, you know, classically like the cancer survivor who completed their chemotherapy, they rang the bell. They're five years cancer free. Those are the folks that often will come back to oncologists and will say, hey, how can I be involved? And maybe in a philanthropic way when to support a cancer center. But some of them say, Hey, I really want to be in the trenches. I want to be with some of those folks in the same place where I was. And there's there's a whole body of research that has shown how in the oncology field that navigators improve the access to care, they improve the adherence to pursue diagnostic and therapeutic treatment and even outcomes in some disciplines and in some fields of of oncology care. They've shown improved outcomes because if you're completing the things that were prescribed, then it would make sense that they overall might have better outcomes. And and that's really important. We published a systematic review. I think it's. the editor will probably revoke my my article now slip in my brain. But it's, I think, oncology nursing. I've never published anything else, never submitted anything to oncology nursing.


Matt Bush: [00:39:19] But it was it was just an opportunity to submit a public or a systematic review related to an overview of what patient navigation has done for those that come from underserved communities and a demonstration that, you know, time and time again and looking at the literature, systematically shows that approval of access and approval of timing of care. And that's exactly why we did that, because we wanted to say, hey, has this worked in some other field? Could we adapt that for hearing health care? Certainly, hearing health care is very, very different than oncology care and the conversations and the population. But there is complexity that is built into what we do. There is complexity because it is not necessarily every single patient that's facing this. It's not as as perhaps known to some pediatricians of how to manage and navigate through profound congenital sensorineural hearing loss or nuances related to CMV related hearing loss. So those are some things that really can provide value not only to providers but to patients along the way. But we'll see. We'll see what the research shows. That's what we're all about.


Carrie Spangler: [00:40:48] Yeah. And then in your own practice right now, have you found anything that you guys have tried to help close that gap of the social disparities with adults and children who are thinking about cochlear implants or getting cochlear implants that might be useful for listeners.


Matt Bush: [00:41:14] Well, I to tie back in with what I said earlier about doing a little bit of introspective work, I think is is an important part of just human growth and development and just learning from our own mistakes. For me, I, I am like I said, I'm doing my dream job and I just am so thankful to care for a wonderful group of patients and a population that entrusts so much when they walk through our doors. And we need to very much value and demonstrate our trustworthiness. I really I really have valued whenever I have a patient from a county that we don't have any other patients in that county, perhaps that has a cochlear implant. I try to really have a conversation with them about. Not only how they're doing, but how. What was their journey like? I really just as a provider and I don't necessarily look to try to build an extra office time. I mean, sometimes we'll just reach out to them separately because I just want to know. Tell me again about your journey to get here, and then I want to learn and listen to them about how could I know there's got to be other people in your county and your community that are having some similar experiences. How could we help them? And through that there have been I mean, I've I've made visits to small little towns and met up at the library or met up at the local watering hole wherever the the older men are gathered around drinking their coffee on Saturday mornings.


Matt Bush: [00:42:57] But, but find a place in a situation where there can be a conversation. I don't know. Maybe in a sense it's just some kind of old fashioned whistle stop tour. And some people say that's not sustainable, That's doesn't fit into my my life and my world. But the whole concept is is listening to our patients and learning from them. And as a researcher who has spent a lot of time in my career of analyzing and trying to understand qualitative data and research I have, I'm in a phase of my career and in a field of my career where I really have to value the the qualitative information and work to obtain qualitative data that is rigorous, that is deep, that will inform the research questions. But again, qualitative qualitative data is what we do as clinicians all the time. So it's not that foreign from us, but I just work hard to try to create opportunities to to, to learn from and listen to the stories of patients and then physically try to visit those places and work with patients to think about, Hey, how could we help others in your community?


Carrie Spangler: [00:44:18] Those are all great ways to get connected in the community community. And when you think about all of the different factors that influence social determinants of health, there's a lot of moving parts in there that you can't really separate out. And like you said, every patient kind of has their own journey. But if you can get take the time to listen and learn from them, you probably will gain trust of that person. And that person creates a ripple effect to somebody else within the community when they share, you know, hey, this Dr. Bush came and had coffee with me in the local, you know, coffee shop and talk to all of us. And then they gain that trust to maybe go outside of their own community.


Matt Bush: [00:45:01] Yeah. I mean, it's it's amazing the impact that that one individual will have for so many patients. And it doesn't matter how how much I tweet or have Facebook posts or whatever, that population is not going to be influenced by social media. That patient that population is going to be influenced by that one individual who came back from Lexington and either loved or hated that that provider or that health care experience, that process they've gone through. And so that's really important for us to try to work with them. And I have learned lots of things about maybe where we dropped the ball or had not communicated, and we've changed practices in how that we will communicate with certain individuals or how we want to provide educational materials or even the order, the way in which we kind of organize clinic appointments. It's it's just amazing how much logistics of health care that we we might think about, just like whether it's widgets or Amazon prime boxes that might be load on a pallet. We think of health care often that sense. But the patients can really, really inform the logistics of what we do. And again, they're a wealth of information. It's just a matter if we have the time and the willingness to listen to them.


Carrie Spangler: [00:46:26] Mm hmm. Yeah, but obviously it makes a big impact for rural type areas. Is there anything I wanted to ask you about your volunteer work in Kenya as well, but is there anything before we kind of leave this topic of. I kind of rural America and health disparities. That may be practical advice if people want to get started. I think you've provided quite a bit of it, like basically going to the community and building trust and listening to others. And then you said you change some of your logistics and practice as well by listening to individuals, but is there anything that I missed?


Matt Bush: [00:47:12] Well, I think I would leave the topic by just saying that work in this field is not meant to be siloed or meant to be proprietary. And if you care about health equity and all populations getting exactly what they need, exactly when they need it, then you can't remain silent. You know, you can't just sit back and just let the status quo go on regardless if it's disparities or discrimination from race or ethnicity, if it's their geography, whatever that that variable might be that defines some difference in outcome. You need to speak up. You need to connect with others that want to talk about this and innovate and create. And I have been amazed by the number of individuals I've been able to meet and have conversations and learn from. And most often, at least at the onset, they weren't Otolaryngologist. I'm very thankful for a rising tide of really bright, public health savvy otolaryngologist that are asking some big questions and doing some great work to address it. But it's transdisciplinary and just speak up, get connected, reach out to me because I mean, I, I eat, sleep and breathe this stuff. So I, I care about it and I think I would I'd love to chat with anybody who wants to talk about it.


Carrie Spangler: [00:48:42] Now, I am glad you're so passionate about it, because we all know, at least in our in our field, that the the cochlear implant, surgery and technology itself is amazing, but it's only a small part of it. And all of the other factors that influence every human being is really what is going to be a positive or negative in their life.


Matt Bush: [00:49:10] Yeah, you're right. You're exactly right.


Carrie Spangler: [00:49:13] So I know when we met and our layover in Atlanta. You also told me that you have a heart for Kenya and you do quite a lot of volunteer and teaching over there. Can you share a little bit about your humanitarian work?


Matt Bush: [00:49:32] Absolutely. Well, I'm about 10% Kenyan, just culturally, not not ethnically or racially. But honestly, I have been amazingly privileged to have an opportunity to connect with some some friends and colleagues that I've been able to develop in Nairobi, Kenya. So I have I have some family friends who are from Nairobi, and I visited Nairobi when I was just as green as I could be, fresh out of fellowship in my first year in practice, I guess I guess was ten years ago now back in January of 2012. But I came to, through these connections, make a relationship with physicians at the University of Nairobi in Nairobi, Kenya, and they have one of the only ear, nose and throat training programs, one of the few audiology programs in all of East Africa. And so this really represents kind of a a only source of education and some even hearing health care resources and specialty care for a huge population. So there's a number of residents that come from other countries within the East African region to Nairobi to this institution to train. One of the challenges has been in hearing health care with surgeries, the the equipment, the microscopes, the drills where we've got tools to do this work. It's not just a knife and some suture. We need some complex tools to do some complex surgery. And that's been a challenge for a publicly funded health care system and medical schools.


Matt Bush: [00:51:30] So it has been a really exciting ten year journey of bidirectional education and teaching each other, listening to each other, laughing and learning. And our families of those that are the educators and our family, we've just we've just really connected in so many ways. And I usually make two trips a year to Nairobi, where often we're giving lectures, we're giving, we're involved in surgeries. Most of it's chronic ear surgery, but there are also tumors. There are cochlear implants that are done in the area as well. We're working to kind of build a cochlear implant program there in the teaching institution. And we also, you know, eat, you know, eat and drink together and just and just really become friends and colleagues. What we would do at our normal kind of national meetings. And over these ten years, we've had Kenyan residents, students come here to the US and spend time with us. They've stayed in our home. We've had a blast, or my kids know more Swahili than I do, so they learn a lot faster than than old folks like me. But and then actually, I just bought my ticket last week since the pandemic. I went right before the pandemic started. I went in January, in a January 1st of February 2020. But I just bought a ticket to Nairobi for the first week of October, and I'm going to take my 16 year old son.


Matt Bush: [00:53:00] So it's the first time that any of my immediate family has been able to go with me. And nine days is not enough. I'm like, I need to show him ten years worth of people and my family over there that I need to introduce him to. But it's it's just a part of who I am. And, you know, yeah, some of these social determinants of health, some of this health disparities, I mean, those are things that have been commonalities of things we've researched together and done work together. But I mean, I think it's sort of the the work defining me. I think my passions as a person as kind of lead me down a field like this to do work in rural Kentucky, but also in rural Kenya as well. So we have a nonprofit that we started during the pandemic because we had extra free time to sort of I had some colleagues that helped me create it. We don't have a website yet, so we'll get there eventually. But our nonprofit organization is called the Sikaza Society, and Sikaza is the Swahili word for listening. So the Listening Society is the name of our of our group, and it's all about bidirectional communication and learning. From each other and listening to one another.


Carrie Spangler: [00:54:15] Wow, that's great. You had started a whole nonprofit during the pandemic, and so is it based basically educational, kind of nonprofit, or are you doing actual humanitarian volunteer work with patients?


Matt Bush: [00:54:32] Yeah, it would be both. It's both. So it's a little complicated, but we would want to provide educational grants. It's kind of one of the initial motivations to develop the nonprofit is to support trainees here in the US that want to go there and provide care and do humanitarian work, but then also for their faculty, staff, students that would want to come to the US to provide some some travel scholarships. So that's one of our initial objectives and initiatives. Providing educational resources is also another focus and a goal that we'd like to have for a professional community, whether that would be textbooks or other types of resources that they might need, surgical loops, just purchasing things that our residents look for, that they need to be able to advance in their career, in their otolaryngology, but then also to be a source to vet equipment that might be donated. It's it's difficult. There's so much excess of medical equipment that's just sitting in warehouses throughout the the higher income countries that need to be mobilized into low to middle income countries. And that would be also an arm of this nonprofit. But we're we're pretty young, but we want to be intentional and want to be careful and very, very direct in what we do with the with the nonprofit moving forward.


Carrie Spangler: [00:55:59] Wow. Thank you for being an amazing servant leader in our hearing health care field, because without your passion and purpose, a lot of these ideas and initiatives would not be here.


Matt Bush: [00:56:16] Well, it's my it's my joy. That's that's that's really that encompasses it's all about true joy. And that's that's what I feel real true satisfaction to be able to do what I'm able to do.


Carrie Spangler: [00:56:27] Well, thank you for that. Is there anything that I didn't ask you that you want to share before we close up today?


Matt Bush: [00:56:37] I don't think so. I mean, you hit me with social determinants. I never would have thought ten years ago I'll be doing a podcast on social determinants of health. That's. That's not what surgeons do. So thanks for allowing me to be a bit of an imposter of a of a stunt double for a public health researcher. But now I might I might leave you with just saying if if success learns from from what you're doing. Maybe I'll start a podcast, too, and I'll. I might have to call on you to to give a talk to the Sikiza the listening society and let them listen to you.


Carrie Spangler: [00:57:11] Well, I would be honored to be a guest if that ever happens, but I just want to say thank you again, Dr. Bush, for being a part of the Impact Your Audiology podcast. I think everything that you're doing, we need to think outside of just that yourself. And what you do is definitely outside of that, looking at the whole person and thinking about all of those aspects of their lives that we need to think about and help support and move forward in order to close some of the gaps that we have with health disparities, especially in our hearing health care field. So thank you again for being a guest today.


Matt Bush: [00:57:53] Thank you. Well, you're you're part of the solution, too, because you're thinking outside the box with podcasts, with real stories. And so you're you're doing the good work, too. So we're we're thanks to Atlanta and travel delays where we're we're friends for life now We are.


Carrie Spangler: [00:58:10] So you never would have thought a travel delay would bring you to a podcast today. Right. And listeners, if you enjoy this podcast and the empowEAR audiology podcast, I encourage you to give some five stars and pass it along to anybody else that you think would enjoy listening to it. Thank you for listening.


Announcer: [00:58:34] This has been a production of the 3C Digital Media Network.




Episode 48: empowEAR Audiology - Rebecca Alexander

Announcer: [00:00:00] Welcome to episode 48 of empowEar Audiology with Dr. Carrie Spangler.


Carrie: [00:00:15] Welcome to the empowEAR  Audiology Podcast, which is part of the 3C Digital Media Network. My name is Dr. Carrie Spangler and I am your host. I am a passionate audiologist with a lifelong journey of living with hearing challenges in this vibrant hearing world. This podcast is for professionals, parents, individuals with hearing challenges and those who want to be inspired. Thank you for listening and I hope you will subscribe, invite others to listen and leave me a positive review. I also wanted to invite all of you to visit and engage in the conversation and the empowEAR Audiology Facebook group. Transcripts for each episode can be found at www dot 3 the number three C Digital Media network dot com under the empowerEAR Podcast tab. Now let's get started with today's episode. Welcome to the empowEAR Audiology podcast. I am really excited today to have a special guest with me and I'm going to read a little about my guest and then I will introduce her. So today I have with me Rebecca Alexander and she is a psychotherapist, an extreme athlete and an activist. She grew up in north Northern California, and she holds two master's degrees from Columbia University. She currently lives in New York City. She is the author of the book Not Fade Away. And she was born with Usher Syndrome Type three. In this book, she shares an incredible story and meditates on what she's lost from the sound of a whisper to seeing a sky full of stars and what she has found with others, a profound sense of gratitude for everything. She has a joy in the simple pleasures of life. So, Rebecca, thank you for being a part of the podcast today.


Rebecca: [00:02:24] Thank you for having me. I'm glad to be here.


Carrie: [00:02:27] Well, I just want to take this opportunity to share the first time I met you. And I don't know, I don't think you really met me, but I saw you at a conference in Massachusetts, and you were the keynote at the Clarke mainstream conference, and you just shared your story. You were so authentic and real, and I was just so grateful to have heard you at that point in time. And I don't know if you remember, but at that conference, there was probably several hundred attendees there, and there was one girl who and her mom, and she raised her hand and she shared with the entire conference that she had recently been diagnosed with Ushers. And I remember you graciously going over to her and you just stood face to face with her and you had this conversation of support and empathy and gave her this big hug. And I thought, wow, I don't think there was a dry eye in the whole audience that day. But at that point I thought, you are truly a person that listens and you make that person, whoever you're with, make them feel like the most important person in the world at the moment. So thank you for who you are, and I'm so excited to have a conversation with you.


Rebecca: [00:03:54] Thank you. Yeah. I mean, that was a really mean. Of course I remember it. I don't think it's something you could forget, but I think sometimes when we're out here and these days with social media and all these different outlets, people lose sight of the fact that we're all human beings, that we have real lives and real stories and real emotions. And so being at that conference, this was before COVID, I believe. So even just being able to be there with someone with a girl and her mom not that long after her diagnosis, I think the emotions were still very raw. And so I really appreciated their standing up and even being willing to share with with me and also the group.


Carrie: [00:04:37] Right. And then I got to reconnect with you just a couple of months ago, and then I officially got to introduce myself to you. And you were a panelist for the American Cochlear Implant Alliance. And that's when I thought, Hey, I'm going to see if she would be willing to be on the podcast today. So thank you for joining.


Rebecca: [00:05:00] Absolutely. I think it was all kind of came in full circle.


Carrie: [00:05:04] It did. It did before COVID and right after COVID, right when we could get back together again.


Rebecca: [00:05:11] Yeah, Yeah.


Carrie: [00:05:13] So I know you have I read your book and I think I laughed, I cried. I could empathize. I had some empathy for parts of the book because I share some of the similar journey as you did. But I thought I would ask you what just prompted you to write this amazing book?


Rebecca: [00:05:35] Yeah. So, you know, it's interesting. There is a definitely a process to it. I mean, some years before I actually wrote it, I was approached by an agent, a literary agent who had seen an article that was written about me for New York magazine, and it was called Going Deaf and Blind in a City of Noise and Lights. And so I think it was a sort of a provocative story about living with the condition that causes progressive deaf blindness and being in a very chaotic, noisy city because I'm in New York City. And so when he first approached me, I thought, what possibly do I have to say that anybody cares to listen to or read about? And what I realized over some time. So I said, I don't really know that that's such a good idea. I think I was 28 when he addressed me and it was about writing a memoir, and I felt I felt like people would think, Really, you're 28 and you think you can write a memoir. But some years later, we there was a story about a spin a thon that we did to raise money for Usher Syndrome research because I was a fitness instructor for many years and he saw the article about me in the New York Times, I think the Style section, and approached me again and said, Now, would you be willing? So I think what was most important about writing this book for me is that in my own process of coming to terms with a condition that causes progressive deaf blindness, I read so many other people's memoirs and people who had very different life experiences than I did, but I always found that there was something in their writing or their experience that resonated with me.


Rebecca: [00:07:19] And to my knowledge, there was nobody that had written a book about living with Usher syndrome in a personal way that wasn't a clinical book. And so it was very cathartic to be able to write this and to sort of speak my truth and to sit down and really put everything into one place. It was definitely a very therapeutic experience, so I am glad that I did it.


Carrie: [00:07:45] Well, I am glad to. And I just wanted to share. When I was reading your book, I made me think of a quote that Brene’ Brown has, and she said, One day you will tell your story of how you overcame what you went through and it will be someone else's survival guide. So when I think when I read your book, I'm like someone else, you know, is going to read that and be able to have that as a survival guide. So all of your courageous remarks and being able to share personally, I think will help others along the way with that. Would you mind sharing a little bit about your childhood events that led up to the diagnosis?


Rebecca: [00:08:27] Yeah. So, you know, everybody has somewhat of a different process of being diagnosed with Usher syndrome. Now, these days, genetic testing can really detect Usher syndrome before there's any physical presentation. But when I was growing up, they didn't yet genetically test for it. And not only that, it was something that for us, we thought that I had some cookie bite of hearing loss because of frequent ear infections. There was just a lot of information and things that were happening that we didn't pick up on. And so it was really kind of like an experiential thing. And by the time I got to the sixth grade, I was having difficulty seeing the blackboard at school and I thought I needed glasses. And my dad took me to the doctor, to an optometrist. His equipment wasn't sophisticated enough to identify what he saw in the back of my eye. So he sent us to an ophthalmologist and we went to several in the Bay Area in California, and they all confirmed that I had retinitis pigmentosa or RP, which is what causes tunnel vision and blindness. And so initially for people who are early in the onset of RP, they experience night blindness and difficulty in certain parts of their vision, whether it's directly below them or in their periphery. And so as a 12 year old, when I was diagnosed with RP, what we thought was just RP at the time, basically I knew that if I went into a movie theater, I had to grab someone's arm.


Rebecca: [00:10:09] I knew that if the dogs were below me that I might trip over them or the dishwasher was open. But at that time I think I heard the word blindness. But for a 12 year old, it's really difficult for you to wrap your head around what that even means. So it wasn't until I was at the University of Michigan, I was a sophomore, and I woke up one morning with really loud ringing tinnitus in my ears and it didn't go away. After a couple of weeks. So I went and was evaluated by an Otolaryngologist and they said, Rebecca, you don't just have RP You have something called Usher syndrome. We've never seen it as it presents itself in you. But because you have both progressive vision and hearing loss, it can't be anything else. So when I was first diagnosed. Usher syndrome. Type three didn't even exist. It hadn't yet even been identified. And it was my own family's bloodwork that we sent to these researchers in Helsinki, Finland. We were the missing link to being able to identify this third type of Usher syndrome. So yeah, I think that a lot of the work and the experiences I had are what have led to a lot more information for families who have been diagnosed with Usher Syndrome Type III. Because when I was growing up, I'm 43 years old, it wasn't that long ago we didn't have any of the information that we do now.


Carrie: [00:11:40] Right. Wow. And then I know you mentioned that you have the hearing loss as well. When did you first notice that you noticed the vision around 12 and then the hearing loss when.


Rebecca: [00:11:55] So, you know, the the the the actual timeline and my memory are a little off. So I'll do my best to try to remember. But my mom is probably still the best one to account for this. But when I was younger, we would watch television and I would always watch out of the side of my left eye. And so we thought it was just kind of a quirk that I would watch TV with my head cocked sideways and nobody really understood why. We just thought it was a funny tic that I had. And what we came to find out over the years is that my left ear was always my stronger ear. And so I created this coping strategy, this compensation, by caulking  my left ear forward so that I would be able to hear the TV better. And it took us some time to figure that out. Again, I had some hearing loss with what an audiologist called a cookie bite of hearing loss when I was younger. And so we didn't know that there was any connection between the two. We thought that that was likely why? So I was given hearing aids. Even when I think I was in middle school or high school, I definitely had a hearing aid that I wore in high school in one ear for my AP history class because my teacher mumbled. But I remember the first time I was given hearing aids, which I never wore. I remember putting them in and hearing the fibers of the rug below me and feeling like I was hearing way too much. Like there are things that I didn't want to hear. And I think that there was also this aspect of feeling very self conscious of not wanting to have to wear hearing aids or to have a hearing loss. So it was this gradual period of time where I think Usher syndrome may be between my parents or something had been maybe mentioned, but never really discussed in full until I went to the otolaryngologist at the University of Michigan and I got that official diagnosis.


Carrie: [00:14:02] And after you got that official diagnosis, when did you feel like you recognized the gravity of what they said to you?


Rebecca: [00:14:15] You know, it's interesting because for so many of us, when you get really what is and remember, I'm a psychotherapist, it is a traumatic diagnosis. And it's not something even at 19 that I could really wrap my head around. So I was told that I was going deaf and blind. What does that even look like? I mean, the only person that I knew who was deaf blind was Helen Keller. And that wasn't my life. That wasn't how I was raised. I was raised in a hearing sighted family. And so it happened to be close to it must have been about 20 maybe, but it happened to be around the time that like the year before I before I turned 21. And so in my mind, I thought after I got this diagnosis, if I could make myself as physically perfect and academically perfect as possible, nobody would know that there was anything wrong with me. So I developed somewhat of a maladaptive coping strategy or developed an eating disorder because here I was given this megabyte of information that I couldn't wrap my head around. It was something that was completely out of my control. Not only do I have this, but we've never seen it as it presents itself in you. So we can't tell you what your progression is going to be like. We can't tell you how this is going to play out. But all I know is that I felt very out of control, whether I was able to recognize it or not. And so I created or came up with some superficial way of feeling like I had some sense of control in my life. And that was by being hyper focused on how much I exercised and how much I ate and how much I studied, the things that I felt were really tangible that I could somehow count or measure in some way.


Carrie: [00:16:02] Wow. And did that have a, I don't know, help you decide what you were going to go into at that point in time? Did you know you wanted to be a psychotherapist or did that evolve?


Rebecca: [00:16:19] Yeah, it definitely evolved when when I was diagnosed with RP. at 12, it was around the same time that my parents had recently separated, separated and divorced, and they sent me to see a therapist. Now I saw the therapist. My brothers didn't and I don't. I think I knew that it was I didn't really know why I was going. I certainly didn't want to talk about anything. And so but I think that that exposure likely was good for me. And so I think there have been all of these this confluence of different experiences that I've had over my life that have really kind of led me in the direction of being a psychotherapist. When you have a condition like this, it requires you to do a lot of self reflection. It requires you to go inward in a lot of ways that you might otherwise not have to, and to try to figure out what your identity is and who you are. So, yeah, there's a lot of different reasons why I became a psychotherapist, but also with a condition like this, it's important for me to be in a quiet room with one or two or just a small group of people to be able to focus and hear and follow the conversation so well. So it seemed like a good decision for me also in terms of my long term career goals.


Carrie: [00:17:42] Yeah. And in your book, you. Talked about there was I want to read directly what you said in the book because it was about kind of your emotions and challenges. And you talk about how I don't feel like the cards I've been dealt are unfair. I don't think life is that complicated. And I know that pity is a trap that will deplete my self-esteem and take away time that I don't have to waste. I choose instead to be grateful, to be happy with what I have today and to be optimistic about tomorrow. It's a conscious choice that one has to take effort to do. I feel like this can be really hard to do just day to day to have a conscious choice to to make the most of what you have. What do you do to help with that choice every day?


Rebecca: [00:18:38] So I think that what happens is that we feel like we've learned that we're supposed to be pursuing happiness and success and fulfillment and we don't make room or allow for ourselves to feel the emotions that come with being human, whatever it is that we're dealing with. When people say things like, I don't know why God did this to me, or they have all these different feelings around, or trying to wrap their head around how they ended up with the diagnosis, whatever, whatever it may be. In my case, it's Usher syndrome. And I just don't think at that complicated. It's a genetic disorder that I have. I think that people have a very unrealistic view on what life is supposed to look like. And it's not their fault. It's what we've learned through our society and culture and maybe our parents. But I think that the way that I'm able to be as optimistic or present as I am is that I allow myself to feel my emotions. I allow myself to cry. I have days where I don't feel that great, where I feel sort of down, where I feel less hopeful. But it's not because something has totally gone wrong and all of a sudden I've lost my way. It's that that's a part of being human. And I think that we have a lot of intolerance for being uncomfortable or feeling sad or even feeling some feel some depression. And we actually have to allow ourselves to sit with it, to develop tolerance for it, and to try to understand why we may be feeling the way that we're feeling instead of trying to figure out how to get ourselves out of it, because it's only in trying to get yourself out of it that you perpetuate that cycle of feeling unfulfilled and unhappy.


Carrie: [00:20:25] Yeah, I think you're right. A lot of times people get uncomfortable and then as humans, we just want we don't want to bother someone else with how we feel. And like you said, it probably stops you from accepting some of the things about yourself too, if you don't feel them.


Rebecca: [00:20:43] Yeah. Yeah.


Carrie: [00:20:46] Well, actually. Oh, go ahead.


Rebecca: [00:20:49] Well, I also think that sometimes when we feel uncomfortable because we live in this time and place now where we have so many outlets to not have to be present, you can go on any number of different platforms of social media and distract yourself. And what we have a tendency to do when we feel uncomfortable is maybe we shop or we look at what everybody else is doing that we're not, or maybe we drink or we use substances or we binge on activity. We do anything we can do not have to sit with ourselves and feel. And that, I think, is something that's difficult to develop when you have all of these very easy distractions. So yeah, that's a little bit more of my 2 cents on that issue.


Carrie: [00:21:34] Yeah, that's a good viewpoint though, and I like what you said about making that conscious choice and it does take a lot of effort every single day to make that choice to. Another thing that you said, and it was about you coming home from cane training and you sat in your book, you put fact disabilities require help fact I hate help and that the disabilities weren't going to change so I was going to have to. What does that mean to you?


Rebecca: [00:22:09] Yeah. So, you know, I think one of the hardest things for anybody, whether you have a disability or not, is asking for help. And it's not just asking for help. It's recognizing that you need help. And I think that we are raised to develop a sense of independence, to feel like we can do it on our own. We don't need anybody that we raise our children to become as independent as possible. And yet the most productive and successful communities are communities that rely on interdependence, meaning that we rely on each other to make sure that people are able to get from one place to the next. So we're able to be aware of the things that are going on in our community, that we help each other to be able to live productive lives. And so I think when you have a disability, you feel like a burden. Oftentimes, many people with disabilities, I think this feeling of not wanting to be a burden is pervasive in their lives, and it's important for people with disabilities to also understand that you have a very active and meaningful role in your family and friends lives too, and you need to recognize that. And the other thing is, is that developing the comfort and ability to ask for help is not a way of saying, I can't do it. It's a way of saying, I want to do this, but I need help in achieving this goal. And I think that what we forget is that when you ask someone for help, you're not saying, Will you do this for me? You're engendering in them this feeling for them that they matter and that they're needed. And as humans, I think there is nothing. We want to know more in this life than that we matter and that we're needed. And it's important to think about what you elicit in someone else when you do ask them to help you.


Carrie: [00:24:12] That's great and I do agree. I think people they want to help others. So if you can get past and this is just my perception, too, sometimes it's hard for me to just say, hey, you know, I have I have a hearing loss. So you kind of have that part that you have to get over on your own end of just even sharing and disclosing that information in order to get the help that you need.


Rebecca: [00:24:40] Well, and the interesting thing is, as a psychotherapist, and I think you can appreciate this, is that I sometimes have people come into my office. We're talking about things that they have a lot of shame around or a lot of really deep seated feelings about. And so they speak more softly or they may mumble. They don't want to hear themselves even say these things out loud. And now during the summer, when the air conditioning is on, it's a whole other ballgame of like, you know, I need you not only to speak up, but. So this is it's hard when someone is in this very vulnerable position as someone with a hearing loss, having to say, I know how difficult this is for you to share and I really appreciate your vulnerability. But in order for me to be able to help you, I also need you to speak up. And and so I often will have to say that to people. And more than anything, I don't want them to have to change their tone because I understand how vulnerable they are being in that moment. But if I'm going to be able to help them and really hear them and support them, I can't do that if I didn't hear what they just said.


Carrie: [00:25:51] Which is a great segway into my next question I wanted to ask was in 2013, you got a message that you might qualify for a cochlear implant. What can you share a little bit about that cochlear implant journey?


Rebecca: [00:26:09] Yeah, so I didn't get a message that I might qualify. I got a message that I did qualify. And the reason why I make that distinction is because, again, there was no real trajectory for me of knowing what my hearing loss would be like. And I was very fortunate to be raised with relatively normal hearing so that I could develop speech. But we didn't know. I never thought that I would ever get to a point where my hearing loss would be significant enough that I would need to get a cochlear implant. I went through so many hearing aids, I can't even begin to remember all the different ones that I had. And I got to a point where I had different hearing aids for different environments. And so I think you know very well what that experience is like. But so when I found out that I was a candidate, I'd been tested before, and a lot of my decision to get tested was mostly to have my friends get off my back of like, see, I'm not a candidate. And when I found out I was it turns out that the threshold had been lowered in terms of what insurance would cover. But my right ear, which was always my non-dominant ear, it could pick up environmental sounds, but it could never really discriminate. It was more decorative. I could wear earrings on my right ear, but I never really used it. I never used it for the phone. Nobody ever sat or walked on my right side. So that ear became a candidate. I think I had, let's say, with a hearing aid. I think I had 28% discrimination.


Rebecca: [00:27:45] And without a hearing aid in the sound booth, I had 26% discrimination. So the hearing aid was doing very little to help me. And so a lot of people find out they're a candidate and they mull over it and they think about it and they worry about it. And I wanted to be proactive. I really was able to recognize that my hearing loss and having a microphone that I would use at times in noisy environments was exhausting. And I don't think that we realize how exhausting it is. Sometimes when you live with a hearing loss and you don't do the things that are necessary to help improve the quality of your life. And so it was a huge fear of mine, and I allowed myself to mourn and cry before I had that surgery because it was never a place I ever imagined I would be. But I will tell you that after having the surgery and a lot of listening therapy later, my my life improved dramatically. And it was the best decision I could have made. And so many people wait, I think because they're waiting for stem cell research to happen, for your hair growth, to be able to regenerate hearing. And that's a long ways away. I'm encouraged by all of the research that's out there. But in the meantime, your life is really being affected by not being able to hear. So for me, it was the best decision I could have made. I think about a year later in a sound booth, I was testing between sentences and quiet or noise and words somewhere between like 92 and 98%.


Carrie: [00:29:26] Right?


Rebecca: [00:29:26] And it was dramatic. It was life changing.


Carrie: [00:29:29] I had to go from 28% to 90% in sentences is a big jump. Yeah. Do you remember what it was like when you first got activated?


Rebecca: [00:29:44] Yeah, I have the videos too, but I do. I mean, I knew that it was going to be weird. I'd been prepared. People had told me that it's a process, a journey, and all the things that people tell you, but until you actually experience it firsthand, you can't possibly imagine what it's going to sound like. And I just remember being turned on and I thought that like the tinnitus in my head was like speaking. When someone was speaking, it sounded like this very high pitch. It was confusing. And so but it did it took time. I had 16 electrodes, you know, I got Advanced Bionics and going through each of those electrodes, at first you get turned on slowly but surely. But it was a very bizarre experience. And my first instinct was like, Oh my God, what the heck have I done? And I think someone told me that maybe I would feel that way. But again, until you actually experience it. But from the day that I was activated to the next day, even when I went for my second mapping, I noticed that there was a shift and even improvement how quickly my brain was adapting to this new way of hearing.


Carrie: [00:31:02] I would say the same thing. Right. When I got activated, I was like, What the heck did I just do? I felt like I was hearing beeps and chirps and whistles, and that was about it. And I thought my my hearing aid was like squealing or something, But it was actually the beeps that were I was hearing with the cochlear implant.


Rebecca: [00:31:23] Right. And that was my experience too, because, you know, we hear all the higher frequencies first. And I remember my best friend was there in the room and the audiologist and their voices sounded exactly the same, like there was no difference between her voice and his voice. And the only way I can describe it and it still doesn't do it justice, is I remember it sounded like this.


Rebecca: [00:31:46] Hi, how are you? What are you going to do today?


Rebecca: [00:31:50] It sounded like a word processor. It sounded very high pitched. It was just it was very overwhelming.


Carrie: [00:31:57] And so then you wore both for a while, your hearing aid and a cochlear implant. And how did you feel? Were you able to integrate both the signals together?


Rebecca: [00:32:09] Yeah, I mean, the hearing aid I wore was a different company then, so Advanced Bionics know they're under Sunnova, which is the same umbrella as Phonak. And I had a Phonak hearing aid, but I'd become so accustomed to using this other hearing aid that I think I was able as much as I possibly could, able to integrate the two. But all of the sudden I started relying on my right ear that I'd never done. I think I was 33 or 34 when I'd been implanted in my first ear on my right side, and everyone had always walked on my left side, sat on my left side. They were used to having to be on my left. And so there was this whole, like migration of everyone having to move to my right side and having to switch that up. And so now it's amazing that I ever even forget or lose sight of the fact that this has not always been the case, that my right ear really was not very usable until I was well into my thirties. And so it's pretty remarkable. Yeah.


Carrie: [00:33:18] That your brain can take that information that hasn't really had much benefit and make sense of it. Yeah. And then you ended up getting a second implant too. How did that happen?


Rebecca: [00:33:30] So my left ear was not a candidate and I tested it every year when I went back for my mapping and my annual mapping and testing, and by 2017, my left ear had become a candidate. And it was something that I knew was going to happen at some point. I tried using my left ear with just a hearing aid and not my cochlear implant. I had friends speak to me and with me reading their lips and also covering their mouths. I really wanted to get a sense of where I thought my hearing was, and it was something I think that there was something that felt more final about getting my second cochlear implant because it was like that last bit of hearing, natural hearing that I had. But again, once I got my second cochlear implant, after three months sentences and quiet, I was at 100%. I mean, I didn't wait to get my ear implanted. I know that now the implants or MRI compatible, my implants are not. But if I'd waited for an MRI compatible cochlear implant, I would have not missed out on some very crucial years of my life, both personally and professionally. So I think that it was the best decision I could have made and to have more of that stereo surround sound. And remember, when you're losing your vision, you do need everything else you can have to help you gather information from your environment. So I didn't write.


Carrie: [00:34:59] Well, I guess it's a blessing. And the fact that there's so much research and advancements in hearing technology in order to give more hearing that for individuals that need it. So and then assistive technology and everything else to.


Rebecca: [00:35:19] Yep. Yeah.


Carrie: [00:35:21] And you also mentioned in your book, too, that as a psychotherapist, you have seen some individuals who are deaf and hard of hearing. Do you think those individuals seek you out because of your own personal journey too or how how did they find you?


Rebecca: [00:35:40] Yes, I do think that for any of us, one of the things that's most difficult for people living with Usher syndrome or living with a hearing loss or whatever it is that we face, it's the wanting to go and see a therapist where you don't have to explain all of the nuances of living with hearing loss or vision loss or cancer, whatever your circumstances might be, to be able to have a therapist who either specializes in whatever it is that you're dealing with or who has firsthand personal experience, can be relieving. It can be very meaningful because there are so many things that you don't have to explain. They get it in a way that somebody else wouldn't. And I think that my own frustration when you're a therapist, it means that you yourself ethically have to be in therapy. I've been in therapy for a gazillion years. It's been one of the best things I could have done and have done for myself because it allows me to practice self care and be self reflective and hold myself accountable instead of projecting my feelings onto everybody else. But it's also been frustrating because there have been many times where I feel like I'm paying someone to listen to me, educate them about living with hearing loss or living with vision loss. And so when you can bypass that step by seeing someone who has that specialty, that expertise or the personal experience, there's nothing like it. It almost feels like a sigh of relief because you can get to the real heart of the issues that you're dealing with and not have to deal with all of the psychoeducation around living with a hearing loss or vision loss.


Carrie: [00:37:28] Yeah. And for individuals who don't have hearing or vision loss, it's really hard to put yourself in those shoes.


Rebecca: [00:37:36] Yeah, Yeah. But there are also people who are fully sighted and fully hearing who seek me out because they see that I'm contending with something or living with something that they feel is something they couldn't ever imagine living with, and that maybe there's more information or insight or self awareness that I have just from dealing with something like this that they could learn from. So it's interesting.


Carrie: [00:38:04] That it is. And they're like a story about a significant challenge that you've had. And how did you overcome that? You have so much grit and determination and your book and what you share, but there's something that really sticks out in your mind.


Rebecca: [00:38:23] So it's interesting because we talk so much about overcoming our fears or overcoming certain obstacles. And I really try to bring it back to encouraging people to live with obstacles, to live with adversity instead of always trying to overcome it. There are definitely goals we need to set to overcome our fears, but the fears may never go away. It may the first six or seven, eight times I use my cane, I cried. And again, as I've said, living in New York City, using a blind person's cane and walking down the street doesn't draw that much attention. It doesn't look that unusual, which is fortunate. But there's the practice of needing to be uncomfortable, of needing to be afraid and still do whatever it is that you feel afraid of on even a daily basis or consistently so that it's not just that you're overcoming that fear, you're able to live with it. Because I think that we all feel like we have to set these goals to overcome our challenges and be able to move on to the next, bigger and better thing. And yet there are a lot of things that we may not be able to overcome that we may have to simply live with. So I think for me, the biggest obstacle that I still face is dealing with the inaccessibility of so many different types of technology and programs of having to constantly educate people about the importance of making information accessible and that it's not a privilege. It's a right for people who have hearing loss or vision loss to be able to have access to the same information that other people who are not hearing impaired or hard of hearing or low vision or blind that they don't even have to think about. So I'd say that that is something stands out to me. Climbing a mountain, swimming from Alcatraz to shore. Those are things that I can totally do, and I have the spirit to really challenge myself. But dealing with these things on a day to day basis is the most exhausting. That's what I think is my biggest obstacle that I challenge myself with every day.


Carrie: [00:40:46] Yeah, I love your comment about living with the adversity and instead of overcoming that and yeah, you also have some very humorous stories too. Do you feel like humor plays a positive role in living with adversity?


Rebecca: [00:41:05] So humor, I think, is at the core of our existence. When you live through so many different either traumatic events or heavy circumstances, it is so important for us to have humility and also to have humor because so many of the things that we face in our lives we don't have control over, and we try so hard to have some semblance of control of certainty. And yet life is very unpredictable and very uncertain no matter how hard we try. And if I were to just allow myself to fall into this hole of going going deaf and blind and how heavy this is, there's tremendous humor that comes with it. There's tremendous humor that comes with dealing with a condition that is so uncomfortable and and yet it's also hysterical. And I've shared many stories, but one of which that I can think of off the top of my head is when I was presenting for the Alexander Graham Bell Foundation, they were giving an award to someone and I was presenting the award when they brought me backstage and it was really loud and really dark and they said, You hold here, we'll come get you when it's your time to come out and we'll we'll guide you onto the stage.


Rebecca: [00:42:31] So it's completely dark and I feel that there's someone next to me. And so I didn't want to be rude. I wanted to engage in conversation I couldn't really hear because of how noisy it was. But I think I was just making small talk. Someone came to pick me up and said, okay, it's time to go on stage. And I put my hand on that person's arm and said, It was nice chatting with you. But when I put my hand on that person's arm, I realized that I had been speaking to a statue the entire time. And, you know, if I were to allow that to really bring me down, I can't believe I was talking to the statue like, it's hilarious, right? I was so caught up in the fact that I didn't want to be rude or offensive to someone that I just started talking to who I what I thought was a person. But it was nobody. It was just a statue. And so there's so many things that happen that are. Or humorous and you have to really allow yourself to laugh.


Carrie: [00:43:27] That is a good one. Talking to the statue, they probably said all nice things back to you.


Rebecca: [00:43:32] Right. It was a riveting conversation.


Carrie: [00:43:36] I love it. Yes. I find humor to be something that's important for me, too, because I do a lot of things very similar to that, where I mishear things or, you know, the things and I say something and I and I'm like, I don't think that was the right thing to say back.


Rebecca: [00:43:56] Right, Right.


Carrie: [00:43:58] But you have to laugh or it will eat you up, right?


Rebecca: [00:44:03] Yeah, definitely.


Carrie: [00:44:06] And the other there's one other kind of question that I thought I would ask would be. I think as humans, we naturally want to be in community with other people and it's just kind of part of who we are. And in your book, you share a lot about different significant people in your life, your family, your friends, coworkers. Have you. How has that been with you? How have people been able to influence and support you?


Rebecca: [00:44:38] It's so important for us to have a community, even if it's a small group of people that you rely on to just laugh with or to cry with or to feel like you can really speak openly with. And so for me, I really, really treasure my friendships, my relationships, because these are the people who know me better than anyone. I have people in my life who have known me way before my diagnosis, and I have people who I've only more recently met who have only known me with my disability. And so it runs the gamut in terms of the types of relationships that I've curated. But I think part of what's so important about us having community and having people in our lives is that it helps us maintain perspective. And it's also important for us to remember that what we go through may be very acute and specific to our lives, but everybody has something. And there are plenty of fully able bodied, fully sighted, fully hearing people that I work with in my practice. And you could not pay me $1,000,000 to trade places with them for various reasons. Maybe it's because they don't have a strong support system. But you need to be able to foster that yourself, to develop a support system for yourself and to support other people as well. The people who are in your support system that again, that interdependence is so, so crucial to our existence because. We all want to know that we're not alone. And even if somebody can't relate to what you're going through, they can be there with you. And that, I think, is far more important and it makes it more enjoyable and more interesting to have people to be there along the way with you.


Carrie: [00:46:29] Yeah, definitely. Having that village around you is important.


Rebecca: [00:46:34] Huge. Yeah.


Carrie: [00:46:36] Many of the listeners for this podcast are hearing care professionals, their parents who have children, who may be deaf or hard of hearing, or they're adults who are deaf and hard of hearing, and many may be dealing with a new diagnosis or might not have come to acceptance or I don't want to say acceptance, but you know what I mean. Of their hearing challenges. Do you have any takeaways that you can share with the audience about that kind of coming to acceptance or dealing with whatever adversity you have?


Rebecca: [00:47:14] Yeah. you Know, I think that particularly for parents and caregivers of kids or loved ones who have a hearing loss. Oftentimes we do take on this caregiver role, and it's so important for caregivers to recognize that they have needs, too, and that they need to take care of themselves. People who are caregivers by nature feel a sense of fulfillment by helping other people. But when you do that and you don't take time for yourself or recognize your own needs, we have a tendency to develop resentment towards the people we help, and the resentment that we feel is actually not towards the people we are helping or loved ones is actually towards ourselves for not being able to have either the strength or the wherewithal to say, I need to do something for myself or I need to take care of myself. It sort of becomes self-fulfilling. So I think that for parents and caregivers or loved ones, you need to make sure that you're really addressing your needs to that someone, the person with the hearing loss or whatever the situation is, becomes the identified patient. And that is where codependency lies. And so you really need to take care of yourself.


Rebecca: [00:48:28] For clinicians, I think sometimes you work day in and day out on the same issues of dealing with hearing loss, of doing the hearing tests, of fitting people with hearing aids, and having to deal with all of the growing pains of adapting to your new hearing device and everything. And we lose some of our humanity, understandably, because either were exposed to it all the time and it's something that becomes second nature to us. But you have to remember that when a person comes into your office, being able to hear is very much intrinsically linked with our competence and our ability to feel whole. And so we have to remember that people come into you and they actually are very vulnerable. They may be a difficult patient, they may they may cry, they may have any number of different responses to hearing test or being fine tuned, and you have to try to be present for them and understand that this is a very emotional experience. It's not just a clinical experience of of being tuned up. So I think the humanity and maintaining your ability to have compassion is difficult, but so important.


Carrie: [00:49:46] And there's a great take aways for families and also clinicians who are dealing with or, you know, experiencing this professionally on a daily basis, too. Is there anything, Rebecca, that I didn't ask you that you wanted to share today?


Rebecca: [00:50:03] Well, I would love to hear from your audience. I mean, they can certainly reach out to me on Instagram or Facebook or TikTok or Twitter at reb_alexander I'm sure you will include that.


Carrie: [00:50:19] I will. I will put that in the show notes for you and for us. And they can get connected with you that way, too.


Rebecca: [00:50:26] Yeah, because I think that there's a lot of questions that may come up for people and I'm happy to answer them. But I think that what's most important for people to know is that they're not alone. You know, we all go through this and it can feel very isolating and lonely, particularly when you're dealing with a hearing loss. And it's so important for people to know that they're not alone, that as difficult as it may be, there are other people who really understand and go through what you go through. And it's not to diminish your experience, but it's to let you know that there are a lot of people out there that you can relate to and develop relationships with who will really be able to see you and understand you. And so I think that's important.


Carrie: [00:51:07] I do, too. And your profession as a psychotherapist and you talked about getting help and when needed to is probably another great point for people.


Rebecca: [00:51:18] Yeah, I think that there's a lot of stigma around seeing a therapist or even potentially taking a patient if you need to. And I think it's important for us to try to break down some of that stigma because the stigma that people feel is actually only inhibiting them. And it's it's important, I think, for people to really recognize not what everybody else thinks or what they think other people will think, but what they need, what is in their own best interest in order to take best care of themselves.


Carrie: [00:51:53] Yeah. Well, Rebecca, I want to thank you so much for being open and willing to be a storyteller of your own life, because I am grateful that I had the opportunity to meet you and connect with you a couple of different times, and that we have a common connection of being deaf and actually going on the cochlear implant journey later on in life as well. But you are definitely an inspiration to me and I know you will be an inspiration to all of our listeners as well. I will link up your social media site as well as the book Not Fade Away, because I feel that you share so much in that book that listeners would really appreciate reading it. So thank you again for being a part of today's podcast.


Rebecca: [00:52:39] Thank you for inviting me. I'm glad to be a part of it.


Carrie: [00:52:42] All right, listeners know if you enjoyed the podcast. Please share this with others. I hope that you engage with me on the Facebook page. Transcripts for this episode are also available on the 3C Digital Media Network website, and thanks for spending time listening today.


Announcer: [00:53:00] This has been a production of the 3C Digital Media Network.



Episode 47: empowEAR Audiology - Jodi Cutler

Announcer: [00:00:00] Welcome to episode 47 of Empower Audiology with Dr. Carrie Spangler.


Carrie: [00:00:16] Hello, listeners. This podcast is a little different from my other podcasts as it is a remix of the Facebook Live event with Jodi Cutler. This conversation was too good to not put out to all of you. For those of you who do not know Jodi, Jodi is amazing. She is a mother, public speaker, writer and now movie producer. She has an adult son who has a cochlear implant and has been able to use her own personal parenting journey to help many others. In this podcast episode, you are going to hear about the exciting news of Rally  Caps book turned to movie. Jodi takes us behind the scenes as Rally Caps was selected for the 31st Heartland International Film Festival in Indiana from October 10th through the 16th, 2022. For me, as an individual who has a cochlear implant and wears a hearing aid, just seeing the movie poster with Lucas, one of the main characters wearing a cochlear implant gives me a sense of excitement and belonging. Representation does matter. Take a listen to this amazing conversation with Jodi Cutler. I think we are going live. Welcome, Jodi Cutler. Thank you for joining me this morning. At least morning for me. And I have my morning coffee with the EmpowEAR Audiology Facebook Live group and this is part of 3C Digital Media Network. I am so excited to have you this morning and afternoon for you.


Jodi: [00:02:05] I'm so excited to see you because I love you and I wanted to talk to you.


Carrie: [00:02:10] I know it's been a while since you were on your baseball spree going across the country to different baseball field, but now you have some even more exciting news, don't you?


Jodi: [00:02:24] I do. I have a lot of exciting news. When I was.


Carrie: [00:02:28] When I was excited to find out more. What? So what? What do you have to share with me this morning?


Jodi: [00:02:37] Okay. First of all, for people who haven't been following the situation, I met Carrie during. Well, first I met Carrie during a zoom for the American Cochlear Implant Alliance. Tuesday talk. And I researched Carrie because she was the person who was a moderator and I, like, fell in love with her and everything that she does. So I stalked I stalker her and. And when we had to go to do the Cleveland Guardians Rally Caps Hearing Loss Awareness Day event, I reached out to her and we were able to collaborate and work together. And she's like, amazing. So I have real love for Carrie, which is why I'm excited to talk to you about Rally Caps, because back when we were in post-production and, you know, we had no idea how we were, how it was going to move forward and how it was going to play out. We were accepted to the Heartland International Film Festival in Indianapolis, Indiana, and it's like, go time, big time. So.


Carrie: [00:03:44] Well, so yeah, so that is so exciting. And just to kind of back up a little bit, Rally Caps is kind of a fusion from a book that you and your dad wrote. Correct?


Jodi: [00:03:55] Yes. My my dad and I worked together to write this book. I have been living in Tuscany for the past 25 years. So I was writing parts of the book in Tuscany and he was editing, modifying, adding parts of the book in West Palm Beach. And there was an exchange. And then finally we were able to finish the book and complete it. My dad had a story to tell about anxiety and getting hit by a baseball bat when he was young. And I had a story to tell because I wanted my son to see himself represented in literature as a child with a cochlear implant who uses listening and spoken language. Because until then I had not found that representation for my son. And I'm obsessed with reading.


Carrie: [00:04:46] Well, and I think it's so important for individuals to be able to see themselves and be represented in literature. And now you have a movie to share as well. So how did you decide that this book needed to become a movie?


Jodi: [00:05:04] My dad has a very determined personality, and from the moment the book was published, he continuously said The book needs to become a movie, and he made it his life ambition and goal to make Rally Caps the book into Rally Caps, the movie. He found Lee Cipolla, who is our multitalented, unbelievable work ethic, phenomenal director who took our book and transformed it into a screenplay, that is. Okay. It's better than the book. I know that you're not supposed to say that, but I love what he did with the screenplay. He's so talented. And. And I was so grateful because he consistently collaborated with my dad and me to. To make sure that we were on board with everything that was being done. I was totally against the idea of making it a movie, because when my dad came to me and said Lee was ready to go, I was like, Dad, it's March. I'm in Italy 2020. We're having a serious lockdown. Covid is happening. Nobody's making a movie right now. And he said, Yeah, we're going to make the movie. And I'm like, okay, Dad. And then and then, you know, your past and time went on and we kept making the screenplay even better and stronger. And then we had I mean, because I was involved, even though I was a little hesitant, my dad will never let me forget that fact.


Jodi: [00:06:35] And that's okay because he's right. I can admit what I'm wrong. And and so we had a table read, and at the table read I met Carson Minniear, who's our superstar. He's so cute and just asked amazing questions and was really talented. I started to see the other actors that were going to be involved in the movie. James Lowe, who plays Coach Ball game. I mean, he plays Coach Ballgame. He is Coach Ballgame. He's phenomenal. Like, I mean, you just melt when you see him and then that's how it started. So we were a small indie film, and then Amy Williams, our producer, was like Lee. I think it's really important to have Judd Hirsch and Amy Smart in this movie because I really believe that they would be exceptional. And so Lee was like, Yeah, that sounds really good. So Amy Williams made that happen, and suddenly our small indie film became. The bigger and more important and the fact that Judd Hirsch and Amy Smart are in the movie, and aside from the fact that they're exceptional professionals and unbelievable actors, their names are going to bring even more awareness to the representation that we are trying to make more visible.


Carrie: [00:08:03] Mm hmm. And you have a couple of characters in the movie who themselves live their life as an individual with cochlear implants or who is deaf and hard of hearing. Can you share a little bit more about those characters?


Jodi: [00:08:19] I will say this. When I found out about my son's profound hearing loss bilaterally sensorineural in Italy, in Italian, and I didn't speak the language. I was a little lost. I mean, I was determined. But but to help him learn to listen and speak. But I was a little lost because I couldn't talk to anybody, really. And in Italy, I didn't have a lot of resources. So the first time I went back to the United States, I went to a bookshop and I was looking through books on hearing loss. And I found Choices in Deafness and in choices and choices in deafness. There was the story of Curtis Pride, and when I read his story, I sat down next to the bookshelf and started crying. So for me, Curtis Pride has always had an important place in my personal journey. At another point in time, my father, who lives in West Palm Beach, near where Curtis lives, heard about a wiffle ball tournament that Curtis was having. And he went to participate because, you know, my mom and my dad were on the other side of the world. And it's you feel helpless to do anything because, you know, so he wanted to to feel like he could contribute and do something.


Jodi: [00:09:39] He went to umpire at this tournament and they became friends. So years later, when we were starting to cast the characters for the my son, who was going to be my my son's character, the child with a cochlear implant. My dad reached out to Curtis, and Curtis has two children, Colton Pride and Noel Pride. Colton, who plays Lucas, has single sided deafness and Noelle has bilateral sensorineural profound hearing loss like my son. So I had always wanted to to cast a deaf character, to play the role of Lucas and. Both me and my dad and everyone was so excited because we were able to have another character with hearing loss with cochlear implants in the film. So we have a boy and a girl and. Additionally, Curtis Pride himself has a cameo and delivers an important message. And for those of you who see the movie, wait till the credits at the end. Don't be getting up and leaving because there's another part that you're going to want to see when the credits roll. And I just the fact that it went full circle with Curtis Pride and and how I live that moment personally was just another Rally Cap's miracle that occurred.


Carrie: [00:11:02] Yeah, that is amazing. That, like, you had that incident in the bookstore where you read about him and then come come full circle and both of his kids that in the Rally Caps movie and they're just so good They're so good.


Jodi: [00:11:19] I know such beautiful people. I mean, they're so sensitive and intelligent and they're just and fun. They're a lot of fun. We had a lot of fun making Rally Caps at camps Gattaca in New York. I'm not going to lie. Like.


Carrie: [00:11:33] Amazing And yeah, so I know. So you got the movie produced and how did Ralley Caps get picked for the The Heartland Movie Festival?


Jodi: [00:11:49] I guess I I'm like Jodie, who raised a child with hearing loss and was a teacher and has helped people in Italy who have their own journeys in deafness. I have had no experience in my entire life with filmmaking, so becoming a producer has been a step by step learning experience. One of our producers, William Garcia, who was working on budget and a lot of the elements, he'd be like shooting acronyms and stuff. And I'd be like, Okay, I need you to explain that. I didn't understand anything. And then Catherine Borda, who is like taking care of all of the details and special effects and color and sound and score that I have no clue about. It's been a learning process. So in terms of the festival, all I know is that we submitted the film and they said, You've been accepted to the official selection. And I'm like, Woo hoo! And Lee and Kathy are like, Oh my God, that's amazing. But they had like. It's 25 days to finish. Finish the movie because we were in post-production.


Carrie: [00:12:58] That is awesome. 


Carrie: [00:13:26] So if people want to watch this movie, how are they able to stream it or see it?


Jodi: [00:13:35] Well, we are premiering in Indianapolis on October 8th, and we are premiering in a theater called the Toby Newfields at 5:15 p.m.. If you live near Indianapolis, we're going to have a really good time at our premiere. Like everybody's coming except for Amy and Judd. They are not coming to the premiere, but all the kids are going to be there. We are planning a lot. We're trying to get involved with all of the associations in Indianapolis who I've learned that most of the people responsible within the associations are parents themselves. So there's this huge cohesive unit in Indianapolis that has like been unbelievable for me to work with them. So the Toby you can order ticket for the the premiere the next day. The ninth is another screening in person and that is at the Glendale Glendale 12 at 7 p.m.. You can order both of those tickets through Heartland International Film Festival. And we also have the opportunity to watch the movie virtually. There is a link to be able to reserve, a link to be able to watch it virtually. Those are limited. There is only a certain amount of virtual links. So anybody watching if you want to see the movie. Right now. As far as I know, this is the only chance.


Jodi: [00:15:06] Obviously, our hope is that a streamer distributor will pick the movie up after this festival. But for now, we're taking it step by step. Everyone has been so incredibly supportive. I just if I can, I'd love to give a shout out to Phonak and Advanced Bionics who have partnered with us. Their main goal in partnering with this movie has been to make as many people mainstream aware of. Cochlear implants, what they do for our kids, hearing aids, how hearing technology and devices like the Roger ON. Allow for more accessibility and more inclusion in mainstream lifestyle. And through the movie, we are trying to make sure that all hearing technology is very visible because what we all want to do is smash negative stigma regarding hearing loss. We're tired of our kids having to explain themselves constantly. We want people to look at a hearing aid and a cochlear implant and be like, Oh, they're just like Lucas. Or Oh, they're just like Nicki, So they don't need to go into this explanation about their hearing loss before people are able to know who they are as individuals. And this is what our real goal is for Rally Caps.


Carrie: [00:16:26] And I love the poster too. With you can see Lucas and his cochlear implant and a vibrant blue color. And that is just so amazing to have that representation just even visually. But I can't wait to see the movie as well to have that representation. Thank you. Is there anything else I should ask you or that you want to talk about with the movie as we're live this morning?


Jodi: [00:16:52] I just. I could talk for hours and hours. It's like I just wanted to I kind of want to add something that that I had this conversation a couple of days ago because I'm moving to the United States. A lot of people who are from my forum are coming to visit me to say goodbye, who I've met virtually. And because of COVID, we haven't been able to have our usual Congresses. So everybody can meet in person and people are coming to visit One of the people who came to visit is a woman who had profound was born with profound hearing loss, wore hearing aids for her entire life until she was 50. When she was 50, she decided to get a cochlear implant. And what was really interesting is that she was because a lot of you with the forum, you help them and then they pay it forward and help other people who are nervous about cochlear implants because we're always scared of the unknown. So the more known we make it, the easier it is to make a decision. She was like, Jodi, I have people come to me who are about to get married and they're like, Should I have a cochlear implant before I get married or after I get married? And she goes, Jodi The cochlear implant changed my life. It helped the real me come out of my shell because I, I didn't feel isolated. I felt more secure that I could hear things around me and. I became a new Maria Luisa. Like now I drive places. I go on trips alone. I, I started working. So she goes, make sure you get that cochlear implant before you get married, because the dynamic of your relationship could change when you go from someone who is a little bit more dependent to a person who becomes totally independent and starts making decisions on her own. And I just I thought that that that blew me away. I just thought that I wanted to share that because it happened a couple of days ago and it's still going around in my head.


Carrie: [00:19:00] But. But because of all of your sharing and willingness to share about your own journey and then the Rally Caps and now the movie, it really opens up opportunities for people to have a conversation and like you said, smash stigma and make it something that's mainstream and out there and that these kids are amazing kids no matter what. They just have amazing technology on their heads that helps them listen and talk. And that is kind of, I think, the message that is really positive for Rally. Caps.


Jodi: [00:19:36] And another thing that I've loved since we started sharing is that parents are contacting me and they're asking me how they can have virtual watch parties so that they can get as many people involved as possible. While we have this window of opportunity to see the movie, like one of our actors’ principals where he goes to school, wants to have a huge watch party for the whole school. So, I mean, literally people are taking advantage of this opportunity to try to spread as much awareness as possible in this moment that we have. And my hope is that people love the movie so that it just explodes from here because there's there are so many ways that we can reach an incredible amount of people with this information to spread awareness.


Carrie: [00:20:26] And so I know we have this window of opportunity to watch it right now, But what is your hope after the film festival is over? 


Jodi: [00:20:38]When the film Festival is over, I'm going to my new place in West Palm Beach, getting my kids situated and set up. And my hope is that within that period of 15 days, everything explodes and we have an opportunity to to discuss with a distributor, talk to a streamer, to get it to as many people as possible, as quickly as possible and as internationally as possible. Because as you well know, we are a global community. In the past I know the deaf community has been strong, has been visible in the media, has had an incredible voice. What I have realized, and I can attest to is that our community, which is just another shade of hearing loss and deaf, including the listening and spoken language aspects or even bilingual communication. And, you know, there are parents who make choices in deafness to to use sign language and and and to use spoken language. But we have a powerful community that is dying to be represented, and that is not just in the United States, that is internationally. And I'm looking forward to the entire experience.


Carrie: [00:21:57] Well, Jodi, I just want to say you said you loved me at the beginning. And I just want to say that I love you just as much as I love you. I just love everything you do. And you have such an open heart and willing to share. And you are just. And by like, that's all I can say is you are on fire and you are making such a difference.


Jodi: [00:22:20] I need to say one thing to the people who watch you like Carrie is amazing. And there were moments during the Rally, during the Rally Caps, hearing Loss Awareness Day events. And because we did everything in such a short amount of time and I don't know, she must have sensed that I was losing my mind. She would send me these like these affirmations, daily affirmations that were they were so, so kind. And I just there have been so many people who have been present and I so appreciated you just being kind, like, for no reason. And that's what's been happening with Rally Caps. We have been experiencing kindness, generosity, love, miracles. And I just hope that that continues.


Carrie: [00:23:06] And I'm sure it will. So thanks again for joining me and live this morning. I'm hoping that we didn't have too many glitches with the Internet connection. But after this, we will share this with others who weren't able to join us live this morning and put links to the Rally Caps movie in the comments so that if people want to either attend in person or virtually they have the information that they need to do that.


Jodi: [00:23:38] So thank you again. Thank you so much. I love you. Have a great day.


Announcer: [00:23:43] This has been a production of the three C Digital Media Network.



Episode 46: empowEAR Audiology - Dr. Uma Soman


Announcer: [00:00:00] Welcome to episode 46 of Empower Audiology with Dr. Carrie Spangler.


Carrie: [00:00:16] Welcome to the EmpowEAR Audiology podcast, which is part of the 3C Digital Media Network. My name is Dr. Carrie Spangler and I am your host. I am a passionate audiologist with a lifelong journey of living, with hearing challenges in this vibrant hearing world. This podcast is for professionals, parents, individuals with hearing challenges and those who want to be inspired. Thank you for listening and I hope you will subscribe or invite others to listen and leave me a positive review. I also wanted to invite all of you to visit and engage in the conversation and the EmpowEAR Audiology Facebook Group. Transcripts for each episode can be found at www3 the number three C Digital Media Network dot com under the EmpowEAR Audiology Podcast tab. Now let's get started with today's episode.


Announcer: [00:01:22] Hi. I wanted to take a moment to let you guys know about Carrie’'s new webinar. She has created a wonderful new webinar in collaboration with 3C Digital Media Network titled Back to School Optimizing the Learning Environment for Students Who Are Deaf or Hard of Hearing. It is an amazingly informative webinar with many helpful resources. You can go to 3C Digital Media Network dot com courses to access it, and from now until September 16th, we have a back to school promotion for 30% off all webinars. So I encourage you to check it out and take advantage of this offer before it expires. Now back to the episode.


Carrie: [00:02:00] Welcome to the empowEAR Audiology podcast. Thanks for joining us today and I have a special guest with me today and I'm going to give you a little introduction. But my guest, I have Dr. Uma Soman with me today, and she is a teacher of the deaf or hard of hearing and a listening and spoken language specialist, auditory verbal educator. Over the last 20 years, Dr. Soman has worked directly with children, their families and their educational teams in a variety of settings. She has also worked with graduate students and mentored professionals pursuing their listening and spoken language specialist certification. Currently, she serves in two roles the first as a co-founder and director of professional development at Listening Together, a nonprofit organization that advances the education and rehabilitation of children who are deaf and hard of hearing through parent empowerment, professional development and public awareness around the world. The second, as an assistant professor in the Communication Disorders and Deaf Education Department at Fontbonne University in St Louis and both of these roles, Dr. Selman works to prepare teachers, speech language pathologists and audiologists to work with with children who are deaf and hard of hearing and their families in a variety of settings. Dr. Soman has served on several boards, including the Option Schools Board and the AG Bell Academy, for listening and spoken language. So welcome, Dr. Soman.


Uma: [00:03:40] Thank you, Carrie, for that lovely introduction. And please just call me Uma.


Carrie: [00:03:45] I will. But it's so great to have you here. And I was so excited when I had the opportunity to actually meet you in person in May in Washington, D.C., at the cochlear implant conference.


Uma: [00:04:00] Yes. I mean, I have known of you and maybe we've interacted, but we had never met in person. So that was fantastic.


Carrie: [00:04:08] It was. And then I said, How would you like to join me on the empowEAR Audiology podcast? And you graciously said, Yes. So thank you for joining today.


Uma: [00:04:19] Thank you for inviting me.


Carrie: [00:04:21] I always like to ask my guest, how did you get to the point where you're at as far as a teacher of the deaf and just kind of was there something that spurred you into the field?


Uma: [00:04:36] So, you know, as I was preparing the questions. What I wanted to share today on your podcast, the word that kept coming up over and over was this. theme of Opportunity. So I got into this field. Initially by just dumb luck happenstance. My younger sister was diagnosed with bilateral, profound hearing loss many, many years ago. We were living in the Middle East at the time we moved to India. Given the services or lack of services, I should say for a very young child, my mother became a teacher of the deaf. My sister started receiving, listening and spoken language intervention from somebody who was trained by somebody who was trained by somebody by Dan Ling. Right. So this just the opportunity. So I've been going to listening and spoken language interventions since I was eight years old. There happened to be people on my mother's side of the family who are deep in education and teaching. So that path sort of just opened up in front of me and I happen to be decent at it. And I was again opportunity. I had the opportunity to train at one of the best possible programs in India in the field of deaf education. Over there I met a mentor who directed me to the Clarke School for the Deaf Program in Northampton, Massachusetts, for my master's. I got the opportunity to intern at Clarke Jacksonville. I got the opportunity to get a job there. Then through, like a recommendation, an opportunity to work at Vanderbilt, an opportunity to pursue a Ph.D. as a National Leadership Consortium and Sensory Disabilities Fellow. The opportunities have been endless, leading all the way up to what I'm doing today at Listening Together, as well as for fun on university.


Carrie: [00:06:51] Wow. I love how your personal story and experiences really created a lot of opportunities for you, and kuddos to you for taking so many opportunities too, because sometimes people are afraid of change and to take opportunities. And obviously that is not something you're scared of.


Uma: [00:07:14] No. And it takes intentional choosing a yes to something is a no to something else, and it takes hard work. The opportunity is just the beginning. What you do with it is what matters.


Carrie: [00:07:27] Mm hmm. Well, I'm glad you are good at saying your best Yes. And your best No’s along the way, which I have a feeling has a lot to do with your nonprofit organization that you and a colleague had started called Listening Together. I would love to hear more about your mission for Listening Together and what you guys do.


Speaker4: [00:07:54] Sure. So back in late 2016, just as I was finishing my PhD at Vanderbilt University, Ahladhini Rao Dugar and I started working together on this passion project that would eventually evolve into listening together. And we both grew up in India with family members who were deaf or hard of hearing. And we were quite familiar with the disparities in outcomes for children who are deaf and hard of hearing in India and the Indian subcontinent in general. Children and families who have resources and to some extent luck in finding the right professionals do well. And those who either don't have the resources or are aren't in a geographic location that has professionals or are working with professionals who are still running off of old methods. Outdated training have different outcomes. And at that point in our careers, both Ahladhini and I were at a point where we were ready to figure out what was our opportunity to give back, to share what we had learned so we could contribute to the process of making the difference. In no way were we thinking, Oh, we're going to fix this, or we've learned things in the quote unquote West that we are going to bring to India. It was always a what can we do with our knowledge to support what is happening that is relevant, realistic for the populations that we will be in contact with, for the communities of parents and professionals. So this sort of grew from working with one family. And by the middle, early 2018, I want to say Uma Medadidi, another parent, not another parent, a parent of a bilateral implant user, joined us and a team of the three of us formed the Listening Together nonprofit organization. Our mission has always been to support children, families and the professionals who work with them. And eventually we came to this statement of we want to transform lives of children who are deaf and hard of hearing around the world through parent empowerment, professional development and public awareness. We truly envision a world where financial restrictions and geographic constraints don't determine a child's outcomes, and every activity we do is towards this work of transformation.


Carrie: [00:10:41] Now, what a great mission. And the fact that you have lived in India and you've been there, I'm sure gives you so much insight into what you're currently doing, even though you want to make an impact across the world. But it sounds like it started because of everything that you've already experienced personally as a family and then with others who are India, too.


Uma: [00:11:06] Absolutely. And I would say that we don't claim to know what the ground reality is, but at least we feel we know the questions we need to ask because we're not on the ground every day. So partnering with people on the ground, understanding their day to day facilitators and challenges and successes and barriers. And we speak the language. We have a sense of the culture. And that, I would say, is a plus.


Carrie: [00:11:39] For sure. You mentioned that you have some different components of the program as well. So what kind of or types of programs do you offer through listening together?


Uma: [00:11:52] So our primary audience is families of children who are deaf and hard of hearing. As well as the variety of professionals who support these families. Again, notice that I'm not saying we work with children because that's not the focus. We work with families. We empower families and caregivers to support the development of their children, to engage in interprofessional collaboration. So that's one aspect, the parent empowerment piece. We've done it sometimes through individual coaching, but almost always the model has when group parent coaching, developing materials or resources or talks everything virtually. We don't have a brick and mortar anything in the world and connecting families with each other, connecting them with the supports within their communities is part of the Parent Empowerment Program. I mean, it's easy to talk the talk. The parents are the experts on the child and the parents and the leaders of this team. But what does that mean? How do we get parents to be able to do that? Is the focus of the Parent Empowerment Program. The professional development piece, and we actually call it the listening and spoken language professional enrichment program, because almost everyone we work with has a background or degree in a field related to working with children who are deaf and hard of hearing, either as an SLP or audiology or as a teacher. And the goal there, again, is to take the skills they currently have and enrich their knowledge and skills so that not only are they learning the latest evidence based practices, but learning how to implement them. Keeping the family at the center of all of this, always because the models have been the models in India in particular are a little bit different, influenced by culture, social norms of how a parent and professional interacts with the power dynamic is, and so on and so forth.


Uma: [00:14:14] So professional development is about addressing the building capacity within the knowledge, the skills, as well as the attitudes and the dispositions. We really want to see parents and professionals working in collaboration to best support the child. So we have these two sort of separate tracks and then we have the public awareness piece. And that to me is sort of our everybody together kind of track. And under that we released a children's book. We have our free webinars that are open to parents and professionals. To the best of my knowledge, when we first started these webinars, it was one of the maybe the only but definitely one of few platforms where information, the same information was being shared with parents and professionals. So just that bringing everyone together, understanding perspectives, it's not us versus them, but all of us together. Thus the Listening Together together piece matters a lot to us. We offer these programs in English, obviously, but also in several regional languages. So in the past or even now, the webinars are offered in English on one day and Hindi same content in Hindi on the next day. We've done professional development courses where if we have enough for a group of people, then we run the same course into different languages. And anybody is welcome to come to any people are welcome to come to both if that is how they want to participate. Right now I'm trying to model where I teach in English on Saturday and then we have quote unquote office hours on Monday in either Hindi or Marathi. And that's an experiment. I'm curious to see how that goes in ensuring that, again, opportunity people have the opportunity to get this information and develop their skills.


Carrie: [00:16:26] That I get why you say listening together because the parent and professional pieces or family and professional pitches so important to help that child. So talking about opportunities to how do people find out about the different courses or webinars or opportunities that you have?


Uma: [00:16:48] So our social media is our best starting point, but what we have discovered so we'll post on our Facebook page, we'll post on our Instagram page, we'll post on our LinkedIn page. Those are our most active where people will find us. But we also have WhatsApp groups, which WhatsApp is a text app and we have a parent group, we have a professional group and we are finding out that through the sharing of these WhatsApp messages and groups is also another way that people are finding us.


Carrie: [00:17:26] That's the great idea to have that group so people can continue the conversation of the webinar or whatever being shared. Is there anything about all this, about Listening Together that you wanted to share that I didn't ask you about?


Uma: [00:17:44] I think just just from a personal point of view, it's been a. A long time ago, I thought my career was headed in a certain direction and I was going to get my PhD, be a researcher, or be in an administrative role. The whole idea of the nonprofit and the impact it can have and the investment we are making is a big one. So I didn't talk a lot about this, but our financial model is essentially take what you need, give what you can. All services to families are provided for free because again, we don't want financial constraints to be a factor. All services or trainings to professionals have a fee but have generous scholarships because again, we think we are making an investment in this human capital that is going to transform not just the lives of the children they work with, but the the landscape for what is possible for kids who are deaf and hard of hearing. So just that investment and the transformation is an exceptionally exciting part of it. Our priorities for the coming years are increasing access, building capacity and fostering leadership because we know that leaders come in all forms and from all walks of life, and I think that's where the transformation will happen.


Carrie: [00:19:20] Well, thanks for that vision of Listening Together and everything that both of you have put into the nonprofit. Because, like you said, you're building human capital in so many different ways and also influencing the professionals along the way, too. So thank you for that.


Uma: [00:19:39] Thank you.


Carrie: [00:19:40] And I was going to switch gears a little bit with your other role that you have in your life. And I think it's a great topic because we are getting ready to transition into another academic school year, which is hard to believe. And we know that students who are deaf and hard of hearing and whether it's an early intervention or a school age, really require some specialized professionals and support along the way. So I would love to take a deeper dive into your role as a teacher of the deaf and also as a professor, and kind of talk about talk about that. So maybe to get started just for by listeners, can you just share about the role of the teacher of the deaf and hard of hearing and how that might have changed over the over the years, too?


Uma: [00:20:34] Sure. Sure. So. I mean, it should come as no surprise to anyone that children who are deaf and hard of hearing and their educational trajectories and opportunities have changed over the last 20, 30 years. When I started in this field 20 years ago this year, it was. Mainstreaming was a goal, but it was not uncommon for children to start in schools for the deaf and then have the goal of mainstreaming. During my time in this field, we've gone from children, come to schools for the deaf to early intervention, happens in the home, and then there are some children who never come to a specialized program. They just go directly into the general education setting. And even if they're, quote unquote, caught up at three. They still have to keep making progress to keep up with all the language, academic, social demands of what it takes to learn in the school. And it is important that a specialized professional is there to support them, not to say that they will always need help, but to monitor their progress to make sure they're not falling behind. So I think fundamentally the rule, the way it has changed is it used to be that students would come to the teacher.


Uma: [00:22:11] And now the teacher is going to the students. And don't get me wrong, there are still teachers of the deaf in programs like option schools where children are coming to them. But that's a model that has changed over the years. We used to have K through 12 programs for the deaf and now they're shrinking and shrinking and shrinking to the point it's going to be early intervention and early childhood with specialized programs for the deaf designed specifically for children who have additional challenges. So in some ways, a teacher of the deaf and all of these roles still exist. But the way the role is changing is it used to be that the teacher of the deaf was teaching kids to. Speak. And now the teacher of the deaf is still doing that. But hearing technology is also helping them to learn to listen and learn through listening as well as really be a part of the general education sector. So to me it comes down to. How are teachers who are itinerants now supporting children not just survive but thrive in an inclusive setting, facilitating inclusion.


Uma: [00:23:37] If a just say an outside, a general ed teacher would say to you, what if you had to give an elevator speech about a teacher of the deaf? What would you say? How would you explain that?


Carrie: [00:23:53] Yes, what a great question. I should have definitely rehearsed this. And I'm going to make all of my students rehearse this as they prepare for job interviews. Okay. So if I were talking to a general education teacher with my role as a teacher of the deaf is which is different than that of a speech language pathologist and that of a special educator. I would say as a teacher of the deaf, I have specialized knowledge and skills in helping children develop listening and spoken language, particularly within the context of developing, reading, writing and academic skills. I am also someone who can help them develop their self advocacy skills and social skills so that we are on the path to leading productive as independent as possible lives post high school.


Carrie: [00:24:49] Wow. That was a great elevator speech.


Uma: [00:24:52] I'm glad this is being recorded because part of me is like, Oh, I want the script for this.


Carrie: [00:24:59] Now we can just pull that little piece out and then we can have elevator speeches for teachers of the deaf and hard of hearing.


Uma: [00:25:07] Yeah, yeah, yeah. And it is a unique role, which is different than that of a speech language pathologist or a special educator. And I've been very lucky to work on teams where all three of these professions were working together, bringing their unique perspectives to support a child.


Carrie: [00:25:28] Mm hmm. Yeah. And just being in the schools, as well as an audiologist of some districts that we go into. And there possibly would only be one or two kids. And if they haven't had that experience before, they are not questioning, but they want to know exactly what is the role and how do they serve that student so that they can have the build the capacity too.


Uma: [00:25:56] Absolutely. And there is a new position statement by counsel for Exceptional Children's DCDD. I think that's still their name, the department, not department division of Communication Disorders and deafness about the role of the teacher of the deaf and the contribution that they make. So if listeners are interested, check it out.


Carrie: [00:26:20] Definitely. And we can even post that or link that in the show notes to so people can take a look at that. I know you have your role at Fontbonne as a professor too. And so I thought I would ask you, what are some of the requirements and curriculum focus for becoming a teacher of the deaf or hard of hearing?


Uma [00:26:40] Sure. So at Fontbonne and Fontbonne has been doing this for a long time, preparing teachers and SLPs who specialize in working with children for deaf and hard of hearing. We currently have to accept the Office of Special Education Projects funded grants where teachers and speech language pathologists interested in specializing in either working in early intervention or as itinerants receive tuition funding to do this. So let me just plug the grants right there at the top.


Carrie [00:27:16] I'm a huge plug because I'm sure we're going to get into shortages later on, too. So what an opportunity again, opportunity for someone who's interested to gain more knowledge.


Uma: [00:27:29] Absolutely. So depending on the program you're in, either your focus is early intervention or your focus is inclusive settings. So itinerant, itinerant, teaching kinds of situations. But both grants the interdisciplinary preparation of teachers of the Deaf and SLPs to provide early intervention as well as the Fontbonne Northeast Interdisciplinary Preparation Project. Our focused on making sure that people are graduating with skills to work in one of these settings with specialized knowledge and skills. So what do you need in terms of background? A bachelor's degree is important. People coming into the speech language pathology program are often coming in with a bachelor's in communication disorders. People coming into the deaf education program are often coming in with a bachelor's in education or related field. I want to encourage everyone listening to know that you don't need a degree in education or speech language pathology is not required to start this. There are other ways of considering entering the field, but a bachelor's degree would be the first step. We have the grant has allowed scholars to join us remotely. So we have several students this year as well as last year. Who are not local to St.Louis. They live where they work. And they get to participate as they are working as teachers. So that would be the two key aspects of the program and the program focus ranges, right? So you're going to learn about auditory development and language development and literacy development, but you're also going to learn about how to work in interdisciplinary teams, how to engage in collaboration. And I think that is a pretty unique feature of what the Fontbonne program focuses on. The interdisciplinary piece almost all classes are taken with teachers and SLPs in the same room, understanding each other's roles, learning from each other.


Carrie: [00:29:59] And you said this is grant funded, right? Right now. How many? So my first question is, how many years have you guys been able to do this? And then second would be, how many students do you typically accept every year?


Uma: [00:30:14] Okay. Good questions. And how many years have we been able to do this? Fontbonne has a long history of being federally funded. The early intervention grant is on its second iteration. The Fontbonne Northeast Collaborative is also on its second iteration. I mean, knock on wood. But we've had success with receiving grants to support trainees. How many students? The largest class we used to be limited by how many clinic placements, our school field placements we could manage. But if you are remote, as long as we find a good placement for you where you will have supervision and and so on and so forth. We are not limited by numbers as such as we were before. We do have I believe it's we have funding for 32 scholars in each grant. And those numbers might be a little bit off, but I can look them up over the period of four years. So we're not getting 32 people one time and taking them through four years, but like eight, eight and eight or something like that.


Carrie: [00:31:31] Okay. And then when they finish the training requirement, they would then have a master's in deaf education.


Uma: [00:31:40] Yes, yes. Masters of Arts in deaf education or early intervention. And if they're a speech language pathologists, they would have a parallel master's.


Carrie: [00:31:51] Wow, that's great. And we can definitely link information about that as well. So another opportunity to. Absolutely.


Uma: [00:32:01] And anyone listening, if you are thinking, hmm, I wonder if this is for me, just reach out to us. We'll figure it out. We have a student this year from a completely different part of the world who is managing the program well. So if you want to be a teacher of the deaf or a speech language pathologist, we'll figure out a way to help you do that.


Carrie: [00:32:24]  Wow. So the speech language pathologist that they would end up with a master's in speech language pathology then, but with the focus on working with deaf and hard of hearing.


Uma [00:32:33] Absolutely.


Carrie: [00:32:34] Hmm. That's always good to know as a specialty professional, too. Well, I wanted to talk a little bit about the shortages. Do you see just from your experiences over your 20 years of being a teacher of the deaf, have you seen the shortages and.


Uma [00:32:54] Absolutely.


Carrie: [00:32:55] What can be done about it?


Uma: [00:32:57] So, I mean, I knew you were going to ask this question, so I went and pulled some data. According to the US Department's listing of teacher shortages in 2018. 19 out of the 43, states or territories are reporting a critical shortage for special education teachers in general. Of those nine states specified that the shortage is for students who are deaf and hard of hearing. I think there is a couple factors to consider. One is. Deafness is a low incidence disability, right? So there and like you said, you go to schools and there's maybe one or two kids. It is unlikely that a school with the budgets being cut and the teacher pay the way it is, can afford to hire one teacher for one student. So we're not seeing a lot of people enter the profession. That is number one for the shortage. The work is not easy in the current climate. Teachers aren't being supported the way they need to be to continue to do the work they are. And this is all teachers. I'm making the blanket statement. We could be supporting our teachers more in a variety of ways.


Uma: [00:34:18] I think that's what has created this shortage. But there are programs around the country that are not only training new teachers to enter the field, but are also creating some alternative pathways. So you might already be a teacher working in an adjacent field, and you can then add this certification to make a somewhat of a lateral move. So you're bringing your existing experience and expertise and adding this on to support children. I think the only way forward is through and we have to understand and address the shortage issue and come up with a variety of ways to continue to support children. I think the pandemic and the tele education, tele intervention piece really helped open up some opportunities and stop people from dismissing tele delivery as a last resort kind of model. So maybe that brings about some changes in the coming years, decades that there continues to be a shortage. And we need to have more professionals trained to do this because like I said, a teacher of the deaf is not the same as a speech language pathologist or a special educator.


Carrie: [00:35:46] Mm hmm. Yeah. And it's great that you at Fontbonne have an opportunity to offer the virtual, because I feel like there's not a lot of universities in the country that offer a program that is specialized in deaf education, or it's a program that might not be serving a lot of kids in a mainstream setting. It may be more focused on serving students who are in a school for the deaf or something like that.


Uma: [00:36:17] So. Right. And it's my intention. I mean, our faculty. Even our faculty is remote. Like, I live in Illinois and teach at a university in St Louis, Missouri. Our other faculty member lives in Massachusetts and is teaching in the program. So it's not as a as a reaction to something. This was an intentional design to meet more people where they are to reach a wider group of people.


Carrie: [00:36:47] So this is kind of changing just a little bit, but not too much. And it kind of gets into maybe. Um, supervision, but more into the real life of being in the schools with whether you're in early intervention or in a school age. But how do you teach or how would a specialty professional like a teacher of the deaf or hard of hearing, integrate themselves into that educational team?


Uma: [00:37:17] So again, another great question. I think the IEP is the IEP meeting, the individualized education program meeting for any child is a good starting point. If everybody on the team has done their job the way they should. By the end of this meeting, we have identified a child's needs and a child's strengths and what the child needs to work on and who will work on it and when and how. So in most situations, an IEP provides a blueprint or roadmap for how each specialty professional is going to contribute to the child's development. And then you might have an intern or an itinerant doing a 30 minute pullout or a 20 minute consultation or a 15 minute push in. And the service delivery models vary. But what we do with our time with the child and the teacher and the peers is, again, what matters. So the the theory part of this is, oh, the IEP tells you how you integrate into this team. But the real world, the soft skills part, is essentially all about interdisciplinary practice. So when I was at Vanderbilt University at the Mama Lere hearing school and we were just seeing this need for kids with CIs in rural counties around Nashville who needed support at school and they didn't have features of the deaf. So people in administration put a lot of faith in me and said. Go take a look, see what we can do. And I was doing outreach without really knowing what it was that I needed to do. And it turns out it is as simple as really listening to the teachers, understanding what their needs are, what their challenges are, and knowing that you are there to support them, support the child, and not there to tell them how to do their job or judge them or evaluate them on on any of that. So the IEP tells us where we need to be and what we need to work on. But our interdisciplinary skills help us do that job. Mm hmm. Which is, again, why I think it's pretty phenomenal that on Fontbonne has brands where one of the focus area is interdisciplinary work.


Carrie: [00:39:51] And you had real world experience of just going out to some rural area outside of Nashville and figuring it out, which probably helps that bring that experience to you as a professor, too.


Uma: [00:40:06] Yeah, yeah. It helps to really keep being present and sharing what you can offer. I did an in-service at 2:30 in the middle of the night for a kid I work with in North India like a month ago. And I was like, Thank goodness I've done this enough times because otherwise doing this at 2:30 in the morning, in the middle of the night would be a little bit challenging. But that's what it is, right? You want to start a conversation? This kid coming into your class is not a problem, is not someone to pity, is not someone to just pass along. This is a kid with potential who will learn and the strategies you use to teach. This one child will probably benefit ten others in the class. And once you establish that, then it's so much easier to work together.


Carrie: [00:40:57] It is. Which kind of segues into another great question that I have for you is we talked a lot about the teachers, but how do you build capacity for students who who are deaf and hard of hearing and to have those self determination and advocacy skills as a teacher of the deaf or hard of hearing?


Uma: [00:41:17] So that's a great question, Carrie. And I think it starts even before you get to the student, right? The child is going to take their cues about their identity, their self image from what the parents are modeling. So I think it starts with how do I, as a teacher of the deaf, support the parents, empower the parents to take charge, to lead, to share their desired outcomes and guide the team on this path. The child is going to pick up their cues from them. And I have a cut this out if we run out of time. But I'll give you a short story. I work with a group of kids when they were in preschool. And as a preschool teacher, you talk to the parents a lot because there's a lot to discuss every day. And I remember very distinctly thinking, wow, I have three different families to describe and look at their child using three very different sets of words. One would say, I have a child with profound hearing loss and wears cochlear implants? One would say, I have a child who is deaf. So with her cochlear implants, she's like hearing. And another would say, yeah, my daughter has a hearing problem. She needs hearing aids. Happenstance. I ended up working with these kids on social skills and the social skills group when they were in third grade. So I had worked with them when they were three and four, and now I was working with them when they were in second and third grade. And lo and behold, these were the words that they were using to describe themselves. Right. And I'm thinking, Oh. It's not. I can't intervene. I can. But intervening now is going to lead to a certain path. Whereas if I had intervened or talked or had a conversation about the word choice and the attitude that families were conveying to their children about their hearing loss of their deafness. Where would we. Where would we be today?


Carrie: [00:43:34] Hmm?


Uma: [00:43:35] So that has always stayed with me and I have made significant changes having learned from that experience and how I talk to children and families. One of the things that I have changed pretty drastically in the recent years is talking to the child about the fact that they have an IEP coming up and sometimes it starts very small. It's like, Oh, we're going to have a meeting, mom is going to be there and Dad is going to be there, and I'm going to be there. And you list all the team members. Mm hmm. But hopefully you progress it to say we're having a meeting. What should we discuss? And just recently, one of the kids that I worked with a long time was just I was so impressed. He said, Well, reading and writing is going, okay, that's not a problem. I could use some help with writing, so some time for that would be good. And then recess is still tricky. I think I need some help from the social worker. Well, okay. Do I even have to be at this meeting, or should we just say that this is done?


Carrie: [00:44:47] That's so insightful that the the student was able to see, okay, these are my strengths, this is where I could use some help and be able to ask for that and articulate it.


Uma: [00:45:00] Absolutely. And this is not a traditionally superstar student, right? This is a student with significant challenges and significant delays. And when we started, the student had no idea what it meant when I said, what's going well at school? What do you need help with? And it took us a few years, but we've definitely built up some self-advocacy and self determination skills.


Carrie: [00:45:25] Right, which is probably for a lot of itinerant teachers. One of the plusses of the job, to be able to have that continuing relationship over the years with students and a joy for you to be able to see the progress that they do make.


Uma: [00:45:39] Absolutely. So when we did. Sorry, I'm changing topics a little bit, but we did a survey of itinerant teachers, which is what we presented at the Cochlear Implant Alliance Conference and in our pilot group, which was about 60 teachers. Teachers said they spend anywhere from 20 to 40% of their time with the child on self-advocacy skills.


Carrie: [00:46:04] Mm hmm.


Uma: [00:46:05] So that continues to be a big part of what it is that we do.


Carrie: [00:46:08] Right. And it's an important part because it's a life skill that they're going to need no matter what phase of their life they're in. If they're getting a job, going to school, being in the community, they have to know more about themselves in order to be self-determined, to ask for the services and supports that they will need in the future.


Uma: [00:46:29] Absolutely. And you know, Carrie, I mean, again, it's been an honor and privilege to have interactions with adults who are living this right. Adults like you, adults like my sister who are deaf, who are hard of hearing and are navigating life because their deafness isn't going to stop them from doing anything. Maybe there is a different way of doing something, but that doesn't mean they can't do it. There's no reason to stop for any reason. And I feel like. I came into this field knowing that the child sitting in front of me today or this year is going to be an adult one day, and I need to always keep that in mind. This is not about passing fourth grade or learning trigonometry. This is about living life. And whatever I am doing should contribute to a good life.


Carrie: [00:47:31] I love that. It's a great opportunity.


Uma [00:47:36] Yes. I'm telling you that word. I mean, as cheesy as it sounds, when I was looking through these questions, I mean, there's this word that keeps coming up. Maybe there's something there.


Carrie: [00:47:49] There is something there for sure. Is there anything that I didn't ask you that you wanted to share today?


Uma: [00:47:58] No. I just want to share that being a teacher of the deaf is a really fun, joyous. Calling an opportunity. And those interested should really consider exploring what this path is and how you can contribute to the lives of children who are deaf and hard of hearing.


Carrie: [00:48:22] And if listeners would like to reach out to you, how can they get ahold of you?


Uma [00:48:27] So I am on social media under my name, Uma Soman. Almost all of my social media is professionally focused, so you can find me on Facebook or LinkedIn. And you can also write to me via email. I am [email protected] or I am at [email protected]. Reach out if you want to learn more about anything that I shared today or just want to chat about any of these topics.


Carrie: [00:49:01] Well, I want to thank you today for the opportunity to interview you and the EmpowEAR Audiology podcast. I can just see your passion for what you do, just shine through. And it really does with Llistening Together nonprofit. And then those students that have the opportunity to have you as a professor are really in for a great treat because I'm sure they see your passion shine through as well and become a better professional because of you. So thank you for all that you do, and thank you for being a guest today.


Uma: [00:49:36] Thank you, Carrie for inviting me and creating this platform to share information.


Carrie: [00:49:42] All right. And thank you listeners for listening to the EmpowEAR Audiology podcast. If you like this show, please share with others. And if you can take the time to give a five star review, I would appreciate that so others can find it and enjoy listening as well. Thank you.


Speaker1: [00:50:00] This has been a production of the 3C Digital Media Network.



Episode 45: empowEAR Audiology - Dr. Ivette Cejas

Announcer: [00:00:00] Welcome to episode 45 of Empower Audiology with Dr. Carrie Spangler.
Carrie: [00:00:15] Welcome to the Empower Your Ideology podcast, which is part of the three C Digital Media Network. My name is Dr. Carrie Spangler and I am your host. I am a passionate audiologist with a lifelong journey of living, with hearing challenges in this vibrant hearing world. This podcast is for professionals, parents, individuals with hearing challenges and those who want to be inspired. Thank you for listening and I hope you will subscribe, invite others to listen and leave me a positive review. I also wanted to invite all of you to visit and engage in the conversation and the EmpowEAR Audiology Facebook Group. Transcripts for each episode can be found at www3 the number three C Digital Media Network dot com under the EmpowerEAR Audiology Podcast tab. Now let's get started with today's episode. Today I have Dr. Ivette Cejas with me. She is an associate professor at the University of Miami Institute and Director of Family Support Services at the University of Miami Children's Hearing Program. She is a licensed psychologist in the state of Florida and is a well-known researcher in the area of pediatric hearing loss. She specializes in psycho educational evaluations for deaf or hard of hearing children, as well as mental health therapy for this population. She is on the board of directors of AG Bell and is a member of the American Cochlear Implant Alliance. So thank you for Ivette joining me today.
Ivette: [00:02:07] Yes, thank you so much, Carrie, for the special invitation. I'm super excited to be part of the podcast.
Carrie: [00:02:14] Well, I had an opportunity to hear you speak at the recent American Cochlear Implant Alliance conference back in May of 2022. And I was just so intrigued by the different topics of research that you are involved with, including language and academic achievement for children who are deaf and hard of hearing, especially those with cochlear implants and also the societal cost of that severe to profound hearing loss. So I was excited that we were both at the A.G. Bell reopening event in Washington, D.C., and a common colleague, Jordan McNair, said, I need to know you. So I'm glad he connected us.
Ivette: [00:03:02] Yes. I think we all work in a very small circle, so I'm super excited that Jordan introduced me to you and that I can kind of expand a little bit more about the important work that we're doing as part of the Children's Hearing Program at UL, at UT Health , but also just about topics that don't typically get discussed in the deaf and hard of hearing population.
Carrie: [00:03:26] Which is a great segway into my next question, because I always like to ask professionals about their back story and you being a psychologist and getting interested in the deaf and hard of hearing population. I would love if you could share a little bit about that.
Ivette: [00:03:45] Yeah. So I always say that kind of fell on my plate. I always knew I wanted to work with children and families. I was definitely always interested in special needs populations and more of pediatric psychology. So I did a lot of work with children with chronic medical conditions, whether diabetes, cystic fibrosis and cancer. And I was kind of just as most people looking for a job in between undergrad and graduate school. And I ended up working as part of a research lab that was doing research on children with cochlear implants. And it was an immediate connection. I had so many questions. I wanted to see how I can help this very unique population of kids. And so I kind of started just doing some research in the area and then realized that there was also a very much clinical need in this population and that a lot of psychologists don't know how to work with deaf and hard of hearing children or adolescents. And so I started to carve out in my graduate training, still doing pediatric psychology, but then working with this very unique population. And my love and passion just continued to grow from there. And I found a very unique niche in my training to be able to provide a little bit more of that clinical need for this group.
Carrie: [00:05:18] That's amazing because I, I agree that we need to have this other perspective when we're working with families and children who do have cochlear implants. Because although the cochlear implants are medically very extraordinary and they're very scientific, scientific, but there's also a lot of other factors that go into working with this population. So to get us started with our listeners. Can you just share a little bit about maybe the landscape of children with cochlear implants and kind of the statistics that you see?
Ivette: [00:06:00] Yeah. So cochlear implants are an amazing technology that, you know, the criteria and candidacy obviously is expanding very, very quickly. But typically, right, we kind of refer children who have a bilateral severe to profound hearing loss, who really aren't benefiting from using hearing aids to kind of do a comprehensive evaluation to see if their cochlear implant, you know, a candidate obviously with the family's choice involved and with the the the that unique partnership between the clinic as well as the family to see if that's the right choice for them. Obviously. Now it's also being recommended for single sided deafness as long as the children are older than five years old. So even in my lifetime and I always say I'm not very old, I've seen drastic changes in one, how they look, how they function, but also just who are candidates. And I think it's just something where, you know, if families have a doubt, if they're interested, I always just recommend that they seek an evaluation, find a pediatric program that is willing to listen to your your concerns, what you want, your goals for the child. And if it's something the family would like to pursue, then it really has amazing benefits and improving the access to their auditory environment. That could really kind of help in terms of the development of listening and spoken language.
Ivette: [00:07:30] But the harder part is that a lot of children that are born with hearing loss are born to hearing parents and to over 95%. Right. I would say I know they say 90%, but really it is higher up there. And this is where it really becomes challenging for parents because it's something very new. They don't know what to expect. Children, you know, are difficult in general. Right. First time parents, I remember the first time I was a parent, I'm like, I really wish I had a manual. I had all of these articles and all of these things that I could do and I read, but there really isn't no true preparation to becoming a parent. So I always say, imagine what that's like when then you have a child that has some other developmental disorder or some other medical condition, right? It brings on a whole other kind of stress into the family. And that's why I think it's so important to have more psychologists, more social workers, more mental health providers that are helping to guide the families in knowing what to do, what are those next steps and how we can help them cope with sometimes the unknown that comes with this hearing loss diagnosis.
Carrie: [00:08:39] Yeah. And like you said, there's really a multitude of factors that goes into the success of, you know, children who have cochlear implants from the age of diagnosis to the age of implantation to the intervention that happens afterward. But I know that you've done and then, like you said, that any kind of co-morbid conditions, too, but you've done a lot from a psychologist perspective and the focus of family and parenting as it relates to children who are deaf and hard of hearing. So can you share a little bit more or take a deeper dive into your research with families and some of those predictors of post implant success?
Ivette : [00:09:27] Yeah. So I always say usually when I'm in conferences, I'm a little bit of the unicorn right in the audience, right? So we always expect that these national cochlear implant conferences or any deaf and hard of hearing conference, we always see, right audiologists, our educators, our speech and language therapists. But then usually I'm kind of the psychologist in the room, or now it's kind of a handful of us. And that's amazing to see that even in my career, I'm seeing to see more people who are interested in learning about the topic. And so one of the things that I've kind of done throughout my career is to really emphasize the whole child and the whole child's development. We're not just talking about hearing, we're not just talking about language, but how all of those things can really affect that parent child relationship or how it could affect a child's social skills. Right. And how they develop in those areas, their emotional functioning, their quality of life. And so I've seen a lot of gaps in those areas. Right? I've seen a lot of gaps where we don't really have validated tools. We don't have really good instruments to help us track these areas.
Ivette: [00:10:39] We're great tracking speech and language skills. We're great about looking at auditory development post implementation, but sometimes those things do not connect, right? Our best performers sometimes are still struggling socially. Our best performers sometimes are still struggling academically. And so I in my career have wanted to look at those things and find out what can we do? Why is there still so much variability in performance when we look at this population of cochlear implant recipients, is there something right that can lead us to do something differently in terms of intervention? And so those are some of the questions that I started to ask and started to uncover because I know as a group that they do well. Right. But still, there's still a subset of these kids that are not even though they're being implanted earlier, even though they're receiving all the interventions that we think could benefit them. And so I wanted to kind of start to ask, answer some of those questions to see what we could be doing in both the clinical side, but also the educator side into improving those outcomes for those children.
Carrie: [00:11:47] And what have you found? I know that you. One of the big things that you've looked at is parenting stress. And you kind of alluded to that earlier. As a parent, even as a first time parent, we don't have a manual. We we don't really know what we're getting into until you actually have a child of your own and then you add, you know, another unknown on top of it. So what have you found in your research with parenting, stress and children who are deaf and hard of hearing?
Speaker3: [00:12:22] Yeah. So I always, you know, parenting, stress, like I said, even somebody with a lot of training or. I thought I had a lot of training. Right? Developmental training. I knew exactly what to do. When I had my first baby. I probably looked like a deer with the headlights. I was unsure. I was afraid. You're nervous, you're happy. You have all of these emotions. And I always tell parents you're not alone in that. Right. And, you know, the literature really has found that if we look at general parenting stress, our parents of children with hearing loss are no different. So general stressors, we are all stressed as parents. It is what it is. Right? But the unique part that we've started to find in my research is that there is higher reports of condition or what we say, context, specific stressors related to hearing loss that we do not obviously see in a hearing population. And so what we found is that those are more predictive or more related to a parent self efficacy, which is parent, which is basically how confident you feel in your skill set. Parent Right. So we see that that parenting stress is related to parental self efficacy, but all of that, more importantly, is related to child a child's communication or a child's language development. And so that's where right that started to catch my attention where okay, these parents, right. If they're more stressed, they're less confident in their skills. And if they're less confident in their skills, they're less involved. And if they're less involved, we know that that has a direct effect on a child's development. And that's why we really need to be doing better about helping parents when they start to feel right, scared when they start to feel that they're not equipped with the right skills or when they're really feeling high levels of stress.
Ivette: [00:14:13] So that way we can do something to help in terms of that that their child's overall development. So one of the studies that we recently published in the Journal of Otology and Neuropsychology was part of the childhood development after cochlear implantation study. The CDCI study is some people call or maybe the CDCI study and that actually that study is kind of like a hallmark of my career. I started to work on that study when I was still an undergrad before I had graduated, and that study is the one who sparked my interest to go into this career. And I've been able to work on that project through right undergrad, through graduate school, and then as an actual investigator on the project. And we followed 188 children with cochlear implants from before they received their implant all the way to several years after. And that's the study that we found that parents who reported higher levels of stress reported lower perceptions of self efficacy and involvement. And this was after kind of controlling for things like age at activation, parent education, all of these variables that we know could affect outcomes. So in itself, after controlling for other key variables that we know still parental self efficacy and parenting stress were still affecting child's spoken language development, which as a psychologist and as someone who's working as part of an implant team, I started to realize, okay, we should really start to be assessing this in our clinical sample. That way, when we start to see that these things are on the rise, we can kind of help families before it becomes to a clinical level that we know could really affect the child's outcomes.
Carrie: [00:16:00] Wow to get 188 families is amazing to you to be able to follow because that's a pretty large population when you think about how small the population really is for, you know, children with cochlear implants. But you mentioned the self efficacy and measuring that for parents. Is there a and have you worked on a tool to help clinicians and researchers to look at that with families?
Ivette: [00:16:27] Yeah. So actually the tool that I use to look at parental self efficacy and involvement was called the SPISE, and it's the scale of parental involvement and self efficacy by one of my colleagues, Jean Desjardin. And she developed that tool, which I have found very useful. And, and it has some information just to kind of even guide intervention. So you can kind of see where parents are feeling that they need a little bit more support. And so for my you know, for the audience, right, if you're an educator, if you're a speech and language pathologist or an LSL specialist, they really find this helpful because it's not just identifying areas, but it's giving you targets for what you could do. And even for my parents, my families, that they don't realize the areas are struggling. But then you have a measure to say, let's kind of use this to monitor what areas maybe you need a little bit more help with. So I tend to use the SPISE for self efficacy and involvement. And then in the study I was referring to, I used the family stress scale for parenting stress, but that scale was actually developed many years ago before I was even in the field.
Ivette: [00:17:35] And so I found that even though it was helpful because of the population that we're serving, I actually developed a specific parenting stress measure for cochlear implants for parents of cochlear implant users. And so that's one that I did recently develop and validate, and that was published in the Journal of Pediatric Psychology. And that's because I really started to see again with the research that it's not just general stress, it's stress related to cochlear implants specifically that was really being a stronger predictor. So I wanted to develop something using the current day practices, right, to make sure that I was using something that was applicable for the entire cochlear implant population and parents. So we recently did involve develop that and validate that. And that's a free screening tool that anyone is available open to, to, to using. And we're in the process of actually translating it in Spanish and validating it that way. We can also use it with our Spanish speaking population.
Carrie: [00:18:39] That is great. Well, at the end, in the show notes, we're definitely put a link so people can access that tool as well. When you were developing that tool specific for stresses for parenting, for kids with cochlear implants, what were some of the main stressors that stood out in this for this parental, you know, population?
Ivette [00:19:03] Yeah. So, you know, it's not surprising even when we see it. And what was more surprising to me is that the top stressors don't change much from early childhood to school age. I expected that there was going to be a bigger shift or difference. But, you know, the as in early childhood, the main stressors were being a language teacher for your child's educational concerns and safety. Those were the key ones. In addition to financial stressors, which actually is a common stressor across any parent, whether you have hearing loss, a child with hearing loss or not. But those were the main stressors when you go to the school age population, some of those change in the top five in terms of where they are from number one to number three. But the added ones are more of, you know, your child spending time away from home, being with peers. And so that starts to kind of creep in a little bit as parents become more concerned as the child goes away from the household. But being a little bit more independent and then not knowing if their child's ready to advocate for themselves or if the child's ready to to kind of manage their, let's say, their devices independently or if their child is going to lose the device. That became one of the top stressors later on of the device breaking and or their child losing the losing the implant.
Carrie: [00:20:30] Yeah. I could see how many of those starters would be at the for a lot of our families, too. So from your perspective, too, you talked about, you know, families that have higher self-efficacy skills that kind of translates in the child having better own advocacy skills as well as maybe language skills and social skills and things like that. Have you found some good tips or tools to help increase self-efficacy to skills, or is that kind of individual?
Ivette [00:21:10] Yeah. I mean, in general, the biggest thing I always say is, you know, we're very hard on ourselves as parents. It is what it is, right? It's the hardest it's the most rewarding job you have. But it is among the hardest job. Right, that you have. And so I always tell the parents that I'm working with, stop comparing yourself to others. Stop comparing yourself to the family that maybe you wait, that you you met in the waiting room. Right. We got to take all of our positives and realize that we're all unique. Our children are unique, but we're also as parents, we have different styles. And that is what works for one family is not another. So that's probably the number one recommendation I give. And also, you know, the importance the importance of positive self-talk. Right? We always remember every mistake we made, maybe something we shouldn't have done, but we fail to realize all the amazing things that we do right for our children and all of the wonderful things that they are doing, too. So when we can use positive self-talk and give ourselves a pat in the back, that is really important to developing your self esteem, which is going to affect your self efficacy. When we talk about that confidence and that confidence of, of, of the skills that you have as a parent, I also always said make sure you're setting realistic and attainable goals. Right? The same thing you say. Let's say you're a speech language pathologist or you're an educational specialist. Right. We got to set attainable goals for our children right in the IEP process, but we don't really do that to ourselves as a parent.
Ivette [00:22:47] So we say, make sure you're picking a goal that you feel like you can reach, right? We don't want to set a goal that then you're not going to reach because life happens and that's okay. You want to pick simple, attainable goals and that is really huge. Also, make sure you're looking at the bigger picture. You know, we kind of sometimes are so, so specific and we're thinking way too much, too much in the future, and that's okay. And we want to look at bigger picture in terms of growth. So I always recommend that and let's reframe the obstacles, right? Life has obstacles, life has speed bumps, and that's okay. But we need to reframe them because even when they do happen, you're going to learn from it and that might help you accomplish another goal in the future. So I would say those are probably the main general kind of goals or tips that I have when you're kind of a parent that's struggling in terms of believing in yourself. And the number one thing is believe in yourself because I know you can do it and every day is not perfect, but that's what we learn. And make sure, of course, that you're finding attending some social activities, some groups finding opportunities for you to share stories with other parents that are experiencing the same things. I would say that's really, really important, not just for self efficacy, but just helping overall mental health and increasing your positive mental health.
Carrie: [00:24:13] They're all great tips for all of us, but especially, you know, having that believing in yourself and being able to connect with others. Have you seen and I'm just going to ask this and I don't know, but have you seen any correlation between parents who have higher self-efficacy skills and themselves and their children then like later on as they get into school age? Did you see a positive shift that way? Because I know kids who are one and only in a school or a district because they might be the only child with a cochlear implant or hearing challenges. They can sometimes have lower self esteem or motivation. Do you see any correlation between the parenting part and the child part?
Ivette : [00:25:05] Yeah, absolutely. And this is more just thinking about the general psychology literature. Is that how we behave, how we function as a parent directly affects our kids. Right. So this is why it's important. And I always say if you are struggling as a parent, don't be afraid to ask for help. Right. Ask one of your providers, ask your your your PCP, your physician for help, because parents who are more anxious have children who have experienced more anxiety. So the same thing when we think about the positive skills. If you're a confident parent and you kind of are not one that's afraid to try new things, guess what? Your kid is going to do the same thing. They're not going to be afraid of trying things. And that's a very important skill for our kids with hearing loss of we have to teach them that we all make mistakes and everything is not going to come out of our words perfectly or we might not maybe make the best choices. And so sharing those same opportunities with your kids is really, really important, as well as just using a lot of emotional vocabulary, right? We don't do that. But that's something I'm very, I think, conscious of, even with my own children, of if they notice that I'm not in a good mood, I'm like, Yeah, it's talking about those things of why Mommy felt this way, or maybe why Mommy reacted in a certain way. And also just to share with them that it's okay to try things and it's okay if you you make a mistake. And all of those things I do think are really important, especially for our population, because it is a little bit more harder for them. And I think that the more that parents can share with them their confidence and their self esteem, then the higher the chance that the kids will also have those skills as they're growing up.
Carrie: [00:26:59] Yeah, that makes a lot of sense because I could, like you said, have a harder time with that and that incidental learning is harder, which all of that kind of translates into the pragmatics and emotional development. So to be able to teach our kids some of that vocabulary and talking them through those moments, they they learn to develop those skills as well. So I know you're pretty unique down in Miami. And you said that usually at conferences you'll be the only psychologist there, one of the only few. And how how do you expand you everywhere? What advice do you give to different centers?
Ivette: [00:27:46] Yeah. So that is probably one of the most common questions I asked, like, how can we clone you? Or can we take you? Can we take you with us? You know, and I'm super proud of of of what I kind of have been able to accomplish in a short amount of time and in being the field. And I've been, you know, as a faculty member with the University of Miami going on 12 years. But, you know, my interest, right, of of noticing that there actually was an auditory oral preschool across the medical campus that no psychologist was going into. I wanted to walk through that door and I was bold enough to walk in and say, hey, I'm a psychologist, can I help out? And it really started from there. So I always say, if you have a trainee that's interested, take them, take them into your clinic. And that's actually what I'm doing is I've been very lucky that as a faculty member I do have access to psychology trainees and so I have practicum students. I now accept also pediatric psychology interns into our department in our program so I can train them in hearing loss and all of the things that actually we don't get specific training as a psychologist, but then they have the right tools in their toolbox. So if they interact with that population and wherever they they end up, then they'll know what to do. Right. I say, I always tell them, you might not know everything you need to do, but at least if you know the right first steps or who to reach out to, then you're in a better place. And to. One of the things that I've done, too, is, is making more connections with my community and community psychologists, because I can't see everybody myself.
Ivette: [00:29:36] But, you know, I've started to kind of reduce some of that stigma of what it is to provide mental health services for this population. And so what I do is as much as I can go out and present at different conferences, whether it's cochlear implants or educator conferences that are very rewarding. And I've been able I recently came back from one in Indianapolis. I did one in Indiana, all of those. Right, to kind of also help educators and people that are more likely going to interact with this population, making sure they feel comfortable in assessing and getting these kids to the right place. So if you're interested, I'm always willing to kind of have those conversations. How do you start it off? Like I started myself, but now there's myself and I was able to hire another psychologist on the team. So now there's two. Plus, I was able to start off with a part time social worker, and now I showed the benefit to our chairman and to our department. And so now I have a full time social worker. So same thing with our educational specialist. And so sometimes we start small and you got to capture data and show the benefits and how you're helping those families. So that way you can expand your program. So it's not easy at first, but it's really rewarding. And if you track your data and track the benefits in terms of the outcomes of the families and children you serve, I promise you're going to able to to expand them, to be able to really offer this comprehensive and multidisciplinary team to all the families you serve, whether you're in clinical practice or whether you're in a school setting.
Carrie: [00:31:21] That's great. Yes, I, I know that I work with a lot of school psychologists and they always comment that this was definitely not an area that they received a lot of training and a background in. And when they do have a student who is deaf or hard of hearing, they don't always know what tools to utilize to assess and help make a plan.
Ivette: [00:31:49] Yes. So if any administrators are out there, you know, from the educational system, I am willing to do trainings for your school psychologist. I always find that it is a very difficult area and sometimes I'm surprised when I review reports and maybe I don't agree, but I can't blame my school psychologist because like I said, even as a clinical psychologist, I did not get any specific training. So we need to be offering school psychologists, educators the training so they can really use the right tools and assessments to be monitoring progress in this population.
Carrie: [00:32:27] And do you have certain tools that you point or resources that you typically point to school psychologist or the clinical psychologist to if they are going to be working with this population?
Ivette: [00:32:42] Yeah. So I mean, definitely when we're talking about, you know, the psycho educational evaluations to kind of see how our children are functioning, you know, depending on the child, how they're doing, you know, we might want to do non verbal IQ measures like a LITER, right? But then that's not always appropriate because our kids are expected to function in a mainstream setting. And so that's not sometimes very useful in saying how our kids are going to do. So then I will do more of your traditional WISC assessment. And so sometimes you need to know how to interpret both of those to kind of know what kind of goals for that child for academic performance. My you know, my preference is still using the Wechsler the WYAT in looking at how those kids are doing. And then depending on that, I do use a range of self report or parent and teacher report forms that are really helpful. And my, my, my approach is that I shouldn't be comparing them to a deaf and hard of hearing population. I should be comparing them to hearing children because that is the expectation of a large population of our children. Like you mentioned earlier, they're in the mainstream class. And so we need to make sure that we can get them functioning like that. And if they're not, what are those additional maybe positive behavioral supports that we can incorporate in into schools that's going to help them? So I like to use the BASC. I like to sometimes add and look at executive functioning since that is one of our areas that our kids struggle in terms of their working memory, their processing speed. But what I'm finding is that these things are not being assessed in a in a in a way that we know how to identify it early and we end up being a little bit more reactive. And so we're waiting to our kids struggle before we intervene when really we should be tapping this a lot earlier. So that way they're not at the point where then they're struggling or doing poorly academically before we intervene.
Carrie [00:34:48] Yeah, that's a great point because I feel like a lot of our kids who are deaf and hard of hearing, especially if they've had the early intervention, the receptive and expressive skills look really good, but they have that swiss cheese of having different, you know, executive functioning skills that are lacking and things like that that maybe we're not taking a deeper dive into. And that is why they might not be progressing at the rate that we that they might be able to at the potential that they might be able to.
Ivette : [00:35:20] Absolutely. You know, I think sometimes. Right. We are not setting high enough standards for our kids. And they they should be performing. They can do it. And so I think the field has definitely moved from so much of the focus of the auditory piece and the language piece, which we've done a lot better about. But now we really need to be focusing on more of these functional outcomes, like I say, and looking at academically and their transition to being independent adults and all of these things that are really, really important. And the earlier we start to have those conversations and helping our children, the better that they're going to do in the long run.
Carrie: [00:36:01] Yes. That's that's all good information. So from a psychologist lens. Do you have like five main takeaways that you would like to share with our listeners today if they. I don't know. I just feel like this need to be such a part of every cochlear implant team and community like the whole child, like you said, educationally, community, parenting, you know, home as well as the cochlear implant team. So I was I thought I would ask you if you have some takeaways that might be helpful for our listeners.
Ivette [00:36:37] Yeah, well, that's a that's a tough one. But let's see. So I'm going to give a I'll try it out. But I think my biggest one is, if you are, let's say, as part of a team, a clinical team or an educator team at school, don't let the administrators tell you you can't have access to all of these professionals. There is a way. Maybe it is not a full time person, right? Maybe it is working with another department or another division. But I would say do not give up in terms of getting these qualified professionals and these multidisciplinary professionals. Right. We all need to make sure that if your child if you're you're working with a with a family has hearing loss or if you're a parent of a child with hearing loss, that you have access to all of these professionals and providers if you need it. It doesn't mean you always need to have the psychologist, but or a social worker or educator. But there might be stages and times that you need them and you should be able to have access, so don't give up on it. And so if you're an educator, don't be afraid to ask your administrator for them. And if you're a parent and need access, don't be afraid to talk to your provider, your team.
Ivette: [00:37:53] Right. You're hearing loss team and say, I need help with these areas. Who can you get me in touch with in the in the field? And so I think that would be my biggest one of we need to be asking for more and it is possible don't be afraid to ask for things because if you don't ask for it, it's never going to happen. And I was surprised. I'm going to say I was surprised of how quickly I was able to get these people. Once you show the true benefit, get those patient anecdotal right quotes of how helpful those team members are. So that way you have that for the future to make a case for maybe having somebody more full time. For my educators out there, you know, my school psychologist is if you don't feel comfortable or feel like you don't have the training is to ask for that. There are people out there, there are more than me right out there and that we could do some of these trainings, even though we might be in a different state. We can now use what we've all learned due to COVID. That's the positive part of COVID, is that we've all done very well about doing Zoom trainings. And so now you have more access right into people around the nation, around the world that maybe could provide some of this training.
Ivette: [00:39:08] So we're doing a better job about monitoring these kids. And for my families out there is to realize you're not alone, realize how amazing you are. You are a champion for your children. And we've got to believe more in ourselves and know that you're there and you're doing the best that you can. And if you need help, don't be afraid to ask for it. There is somebody there who's gone through your experience. You're not alone in this journey and speak up because I am sure that you're amazing audiologists. You're amazing hearing health providers. The team that you're working with could put you in contact with someone that will help guide you if you need that support. And there's a lot of organizations out there, right? There's a lot of Hands and Voices. There's AG Bell, there's the American Cochlear Implant Alliance, where if you can't find a provider in your area because it could happen, then we could still link you up with one of these amazing organizations that have parent groups and different resources that you could have to your disposal to help navigate what you're going through, because there's a lot of really, really nice resources out there.
Carrie : [00:40:28] But there are there are great tips for both families, education specialist and then clinical providers as well. Is there anything that I didn't ask you that you were like, I really want to share about this with my research or my clinical experience?
Ivette : [00:40:49] You know, I think you I mean, I think you pretty much covered it. I probably can just stay here talking to you for like hours. But I think the main thing is, you know, we have to stop using mental health and as a stigma. Right. There's a lot of that in out there. There's a lot of stress. Right. That that just is part of living in our community, living our society. And luckily, we have a lot more resources out there. So I think everybody if there's one thing I want to get out there is that, again, like I've said, you're not alone. There's a lot of people experiencing it and there's ups and downs, right? That happens. And we want to make sure that we're talking more about these areas. So that way parents know what to do, providers know what to do. And I'm just happy that that my research. Right. Has started to just open up some of those conversations. And so I love to hear, you know, when I go to these conferences, it's I'm not the only one talking about these things anymore. And that's great to me. That's that's really important to see or to just see the the interest about these areas. And the more we talk about it, the better we're going to be able to do to be able to identify who really needs help in terms of these areas. And also then that's going to lead to more effective interventions that are available out there. So I really, really appreciate, Carrie, you inviting me to kind of talk about these things. And I'm happy to to provide more for listeners if they're if they're interested in reading a little bit more about my work.
Carrie: [00:42:30] And if they are interested, how do they get ahold of you?
Ivette: [00:42:34] Yeah. So let's see. So probably the best way is, I guess my email address and I promise to try and respond as quickly as I can. But if you're interested in any of the articles or chapters that I've written on some of these topics, I'm more than happy to share. So my email addresses, I say this and I'll spell that out. That is I as in ice cream C as in cat E as an elephant J As in Jack A as an apple and S as in Sam at med which is m e d dot Miami dot edu. So you can feel free to reach out there. I also, you know, do a lot with from my academic side on Twitter. So I do have Twitter. I think it's Ivette Cejas pretty easy just my name out there and so feel free to kind of reach out. We also have an Instagram page for our children's hearing program that we actually post different topics about these things and mental health tips and LSL tips so that Instagram account for our U. Health Children's Hearing program is @ children's hearing program.
Ivette: [00:43:49] So very simple. And so you can reach out in any of those ways if you have a question or you're interested in any of our resources. And then, of course, I know the listeners are from everywhere, but if you're interested in reaching out to our actual UHealth children's hearing program for an appointment or anything along those lines, we actually are very fortunate that we have a nice organization that we could we have a hearing aid loaner bank. So if you can't afford hearing aids, we have a cochlear implant loaner bank. If you cannot afford your repairs through our children's hearing program and we actually help to sometimes do pro bono cochlear implant surgeries if you cannot afford it and you don't have insurance through our children's hearing programs. So if you're interested in an appointment to kind of see if you're a candidate and not sure if you can afford it, don't be afraid to call us. It is at 305-243-1110. And we will make sure that we can get you resources so that you can get the hearing care that you need.
Carrie: [00:45:00] Wow. That is amazing. Thank you for sharing all of that. And I will make sure that I link some of your contact information in the show notes so people can also just click on that and be able to reach out to you as well. But I want to say thank you. And that, again, for being part of the EmpowEAR Audiology podcast. Your perspective as a psychologist is so important for the whole child and for the whole team and and family. And it's such an important part of probably one of the most important parts of that cochlear implant process is how do we emotionally deal with some of the stressors that really do come up along the way with our families. And then again, that translates to our kids and we want to have successful kids as well. So thank you again for sharing all of your research and your knowledge and your updated of the different surveys that you have for stressors that people can utilize those in their own practice and hopefully build some very effective self efficacy skills and help families that way as well. So again, thank you for being a part of it today and I appreciate you coming on.
Ivette: [00:46:19] Thank you so much, Carrie.
 [00:46:21] This has been a production of the Three C Digital Media Network.

Episode 44: empowEAR Audiology - Lynn Wood

[00:00:00] Announcer: Welcome to episode 44 of empowEAR Audiology with Dr. Carrie Spangler.
[00:00:16] Carrie: Welcome to the empowEAR Audiology podcast, which is part of the 3C Digital Media Network. My name is Dr. Carrie Spangler, and I am your host. I am a passionate audiologist with a lifelong journey of living with hearing challenges in this vibrant hearing world. This podcast is for professionals, parents, individuals with hearing challenges and those who want to be inspired.
[00:00:45] Thank you for listening and I hope you will subscribe, invite others to listen and leave me a positive review. I also wanted to invite all of you to visit and engage in the conversation on the empowEAR Audiology Facebook group.Ttranscripts for each episode can be found at www dot three, the number three, C digital media network dot com under the empowEAR podcast tab.
[00:01:19] Now let's get started with today's episode. Welcome to the empowEAR Audiology podcast. I am really excited today to have a guest with me, who I have actually known for quite some time. And we're gonna get into that today in the podcast. But before I have her come on, I'm gonna read a little bio.
[00:01:40] And today I have Lynn wood with me. She is a listening and spoken language specialist, certified auditory verbal therapist. And she is nationally recognized. With over 35 years of experience, she is an audiologist by degree and specializes in pediatric listening and spoken language auditory verbal therapy, post cochlear implant, auditory rehab for adults and kids and therapy for individuals with auditory processing needs.
[00:02:12] Lynn is the founder of the Auditory Verbal Center of Wheaton, Illinois, and was one of the first audiologists to open a practice devoted, exclusively to auditory rehabilitation. Lynn author's evidence based LSL resources, including Listen with Lynn which is her online store that offers downloadable tools, games, and activities for children, their families, and the professionals who guide them.
[00:02:42] Lynn, welcome to the empowEAR Audiology podcast
[00:02:44] Lynn: Thank you, Carrie. Thanks for having me. It was fun. Reminiscing, a little bit about our past a few minutes ago. So I'm happy to chat with you and your audience today.
[00:02:58] Carrie: Yes. Well, thanks for being here. And I thought since you brought up my past we were talking a little bit before we went live today about the long history that we have together and that you had lived in Ohio for some time where I live and I thought it would be fun for our audience to.
[00:03:19] Hear a little bit about our memory lane that we have together. Do you wanna start
[00:03:23] Lynn: Sure, sure, sure. I actually, maybe I'll back up a little bit about my history and then how I actually met you. So I am a graduate of the University of Akron with a degree in audiology and one of my early jobs after, after graduating with my master's was at Lichfield rehab center.
[00:03:43] and that's where I met Carrie and her mom. The very first time I know I was involved with your dad. I know your parents were both so great advocates for you, but it's been a long time. We don't want anybody to add up the years there or whatever like that, but just a couple minutes ago, Carrie, it was so fun.
[00:04:00] You actually pulled out a folder with your name with records that I had tested your hearing change, your hearing aids give you all sorts of resources. So that's part, I didn't remember from what you had said, but you know, I, I do remember meeting you at Litchfield rehab center and I forgot how old you were.
[00:04:22] I did know that you had a bilateral hearing loss. I remember testing you. And I was so surprised to see, honestly, your precipitous high frequency hearing loss, how it really sloped down. And I think I'd mostly seen the kind of configuration probably back in textbooks then. So and it's sort of, I remember you were diagnosed a little late.
[00:04:44] If I remember what four or five. I was four. It's no wonder. Four that I'm sure you were bright, like you are now. And even with a speech and language delay, just that good, low frequency hearing could really fool a lot of people, I guess, type of thing. But we were just looking at a couple of your audiograms and I know I talked about the Ling five sound tasks.
[00:05:08] if people even remember what that was. Before that's when Dan was still living and before we had the capacity to get out to even that S and things like that. But I remember talking to your parents about changing your hearing aids, and I'm almost sure we went ahead and gave you acoustically tuned ear molds.
[00:05:27] I don't think you had those ones were libby horns. so I don't know if those were what. The Libby horns or continuous flow adapters were available then. But I do remember after we saw in your audiogram, after making some changes, changing your hearing aids, we could access more of the high frequencies.
[00:05:48] what above a thousand, 2000 there for you, and I'm sure. I always say every DB counts so I'm sure. What was what you needed and things like that. So, but yeah, I, I, I remember you much more as a professional than a lot of those little glimpses when you were little, but what, what happened was I was your audiologist.
[00:06:08] And then my husband and I moved to Chicago, we were transferred with his job. And at that time I sent you then to the University of Akron and Carol Flexer became your audiologist and the rest is history. You guys and us and things like that. So, yeah. Yeah. It's something you wanna add all that or how your life would.
[00:06:32] Different. If you had not met Carol, when you think of all the little elements, they're all meant to be,
[00:06:39] Carrie: they are yes. Full circle. I'm sure when you saw this 12 or 13 year old teenager, who probably wasn't the happiest to be there. you never thought you would be during a podcast with her how many years later?
[00:06:57] Lynn: no kidding. Actually, the older I get, the more strange things I never thought I would do that type of thing, so yeah. Yeah. It's really fun. No, but Carrie, I, I do remember your family. I remember you guys just being. Just like I said, your parents were such good advocates for you and things like that. So not the details, but I remember globally and you have a brother, right.
[00:07:22] That right? I do. I have
[00:07:23] Carrie: a younger brother who was about three and a half years younger than I was. So he might have been tagging along that day too.
[00:07:30] Lynn: Yeah. I'm not sure. Right. Exactly. Exactly. So I, was there anything else you want me to share about that? But I, I do feel, I hopefully made a difference because I remember after going over, I dunno if it's the first time I tested your hearing or whatever, but I remember talking to your mom.
[00:07:46] I think it was, I don't know if your dad was there, but about speech acoustics and about the speech banana and explaining what you were able to hear based on your low frequency hearing and what you were missing based on your high frequency hearing. And I, it was like a light bulb went on for your mom. I mean, she was.
[00:08:09] I don't know where you got your audiology before that services, but it like clicked. It was like, oh, this all makes sense. And I do remember even talking about like, like I said, a little while, no wonder, we didn't know that Carrie had a hearing in loss when she was younger type of thing, but I remember your parents were really thrilled that you were able to course get more hearing based on, you know, improving your, your hearing aids and things like that.
[00:08:34] And I don't. If you wanna share something, you said, I sent you a cute little letter.
[00:08:40] Carrie: oh, you did. So it was funny going through all of the different paperwork and seeing the familiar sounds audiogram and you had it highlighted and for my mom with a, all the good information on there of what I could hear and what I couldn't hear.
[00:08:57] And then, like you said, we decided to try some different hearing aids since the ones that I was wearing, weren't really doing anything. And you know, of course the technology wasn't able to do a lot at that point in time either, but you had written a, a handwritten letter that was just saying, you know, I'm very excited about your new hearing aids and I hope there is helpful as they appear to my office.
[00:09:25] And then you talked about some enclosed information, including. See the handout on Ling five sound test, and how you were able to hear some of these sounds and how optimal hearing aid fittings would allow all of the threshold to be in or above the speech banana range and saying that you would see me in two weeks.
[00:09:47] So,
[00:09:48] Lynn: right. I'm just relieved that as you re you read that it's things that I would probably say again, so. Wasn't wrong back in the day. I'm still, I've still learning and have learned a lot since then, but right. And a lot of like have
[00:10:02] Carrie: changed since then. Right. But then I love the fact that you gave my mom.
[00:10:07] It was a 1986 spring and summer publication for the AG Bell Association. So mm-hmm, , she had some different things start in here. So I wonder if she ended up ordering different publication that happened to be in there. So I'm still looking Dan Ling book in here and that was starred. So she, maybe she did.
[00:10:29] She got the Dan Ling Book.
[00:10:33] Lynn: Yeah, I was a big fan of AG Bell and still am so,
[00:10:37] Carrie: right. Yes. So, and I know we just saw each other virtually for the virtual conference that they have going on and they're still, I, so it's been exactly a history, but going back to just a little bit backwards again, how did you end up finding the field of audiology?
[00:10:59] Lynn: Okay. Hmm. Well, I didn't really set out to be an audiologist or of course, an auditory verbal therapist. I went to the University of Akron, like we talked about and I, a friend at I think it was the lunch area. I forget the cafeteria happened to mention a friend of friends that she was taking a class called intro to speech disorders.
[00:11:22] It sounded so interesting. I signed up for that course. I think it was the next quarter or semester. And I was hooked. I took that class. Didn't know where it was gonna lead, but I changed all my classes, my sciences, everything to, to steer me to speech and hearing at that point type of thing. But I guess if I could go a little deeper than that.
[00:11:44] So I was in the field. I think at that time I was probably thinking more of speech pathology. but I was working at the speech and hearing clinic as a student there at the university and the family that we both know had a toddler with a profound hearing loss. And that mom asked my clinic supervisor if I would work with their daughter to help her learn listening and spoken language.
[00:12:10] But my supervisor who I remember as clear as day told me that children who were deaf and hard of hearing could not learn to listen and speak. And the family was probably in denial. What is the most surprising about that story To me is I was a student and I ignored my supervisor. I don't even know how that transpired, but I put my faith in this family who in turn.
[00:12:36] Introduced me to pioneers of auditory verbal Doreen Pollock and Helen Bebe. So, you know, I'm down that path and the next Carol Flexer comes the university with her background in pediatrics and auditory verbal. And Carol then became my undergraduate professor, my graduate professor and my clinical supervisor and my friend, like she is yours today type of thing.
[00:13:00] But that really took me down the track of, you know, I don't think, I would've been able to tell you probably any of those things about the speech banana on and on like that down the line a few years without her input, because it was a lot different than I has was learning before she arrived. But yeah, I was.
[00:13:19] Carol's graduate assistant for two years. And then she really took me under her wings. I'm sure. When I was at Litchfield rehab where I saw you early in my career, she was my CFY supervisor. And then I was ready to sit for the auditory verbal certification exam. The very first time was offered in 1994. So yeah, so, you know, It's not the path that I would've ever dreamed of.
[00:13:44] I don't know what I would've done, but I'm sure this is what, you know, I, I love what I do and I'm passionate about it, but I'm just thankful for all the professionals, the families that I've been able to stand on their shoulders and all that knowledge that I've learned over the years, I feel like I've been able to pass along to countless family.
[00:14:04] Today and, you know, over the years and things like that. So I love a good story and how things start and where you end up.
[00:14:12] Carrie: right. Yeah. So it sounded like Dr. Flexer came to the University of Akron at just a pivotal point in your, exactly, exactly audiology career path
[00:14:23] Lynn: path. Right. Right. I know. When I first started working with her, I was also working in something called deaf nursery.
[00:14:33] And I don't wanna get into all that, but my experience with deaf nursery and then when Carol was my supervisor, they were very different approaches. I mean, just not using hearing at all type of thing. so and at that time also the university, the sort of the other people like my supervisor didn't think what was happening was go was possible.
[00:14:54] so. Shortly. He had more children that came to the clinic, just even the little bit of time that I was there. And of course, audit university of Akron known as a fabulous auditory verbal and audiology program. So, yeah. Yeah. And I had other great professors too type of thing, but yeah.
[00:15:11] Carrie: That is yeah.
[00:15:12] Exciting to hear that background backstory and to see that , you're still very invested in the field, especially rehab or, you know, listening and spoken language. Sure. audiology part as well. Right. And which is kind of brings me to my next question, because I think a lot of audiologists think about going into more a clinic.
[00:15:37] You know, working with, you know, cochlear implant, assistive technology, hearing, hearing aids, that kind of thing. But don't really think about the rehab aspect of audiology. And when I was reading your bio for all of our listeners, I mentioned that you were one of the first audiologists to really have a practice devoted to auditory rehab.
[00:16:00] Can you share just a little. Bit more about what you do as a rehab audiologist and how that's, how you kind of steer that way instead of more on that clinical side. Sure,
[00:16:13] Lynn: sure. I'll be, that's a whole story how I got involved that way, but I'll just really brief. I moved from Akron, Ohio to Chicago area.
[00:16:22] I started out in a clinic as a clinical audiologist. but I had done privately and at the hospital, auditory rehab, auditory verbal therapy in Ohio. And I thought, how will I ever start this in Illinois? So I really didn't even that wasn't even on my radar down. I'll skip to ad basically I ended up picking up many children.
[00:16:45] I was working at, I was, I had a two year old, but I was working part-time as an audiologist. I started seeing kids at my kitchen table, actually, Dan Ling, Mary Erb, I sent me kids and then I started diagnosing a few kids in my practice. And in no time I was. When I was at the clinic, only testing kids, I saw for therapy and I was stretched too thin.
[00:17:09] I wasn't really helping them. And we were at a, again, Dan Ling a conference here in Chicago. Dan Ling spoke and parents came with me afterwards and said, we need you to be full-time with our kids. And I took that big leap of faith and started off in my own type of thing. So, and it was a, you know, I was first working out of my home before we built, you know, where I am now and things like that.
[00:17:36] So, but that's sort of how I got started, but I think you wanted to know how, how audiologists maybe made that transition or what the difference is, but. I guess audiologists, as you know, specialize in diagnosis, hearing problems, you know, balance problems, but auditory rehab falls under that umbrella too.
[00:17:56] But honestly, clinical audiologists really don't have the time or the materials necessary in, in a clinic situation or hospital to provide auditory rehab. So and I guess I'd have to say most of the people. Over the years that I've seen adults that seek auditory rehab are usually discouraged or upset or depressed.
[00:18:21] A lot of them thought the cochlear implant. If that's what it was, was gonna be the last step in their journey. And they were all set and the information that was able to be provided to them in the clinic situation just really wasn't enough. A quote that I've quoted for years and I've told families was from Dr.
[00:18:37] Richard Miyamoto. He's from Indianapolis, an early implant surgeon. He would say cochlea implants are cochlear implant. Success is 10% the cochlea implant and 90% the user's input, which would be auditory rehab, or 10% hardware and 90% software. Have you heard that quote before Carrie? I have not
[00:19:01] Carrie: heard that quote directly, but I 100% agree with it.
[00:19:05] Lynn: exactly. So, and you can extrapolate that to somebody getting hearing aids, but the same thing I've used that with families of little children. So you can hang hearing aids on a child's ear, but if you don't do anything with them, it's not gonna make any difference or whatever. But so anyhow, those are the people that have come to see me.
[00:19:25] Those are people that aren't happy, they're discouraged or whatever like that. but you know, people find out that auditory rehab does enhance their ability to enjoy social events, understand conversations, many use the phone. Listen, enjoy music. I know you got rehab right after you got your implant. I
[00:19:44] Carrie: did with Dr.
[00:19:45] Dr Denise Wray, who is another common
[00:19:48] Lynn: friend colleague. Yes, exactly. A good, good professor of mine, too. Type of thing, a clinic supervisor. But I would say still to this day. Many people asked me why auditor auditory rehab was not recommended for them, why they got implanted and then why they have to sort of do the search and find out, you know, the hard way I actually spoke at our ALDA meeting, which is a cochlear implant club here in Chicago a couple weeks ago.
[00:20:18] And so, but the people didn't know that was possible. And. Had a lot of questions cuz people are happier once they find out and you know, their life is easier once we can work with some of those skills. so I would have to say auditory rehab is a underutilized service and things like that. So I, I know you alluded to me being an auditory rehab audiologist.
[00:20:43] And I sort of wanted to say real quick. If I could sidetrack a minute a real good friend of mine Karen Rockwell Vivian, I don't know if you know who that is. She's been gone about 10 years. She was much younger than she should have been, but she was also an audiologist by degree that practiced auditory verbal therapy in California.
[00:21:03] And we met at an auditory verbal international conference years ago. and Karen was using the term auditory or rehab audiologist. And that really clicked. We were doing basically the same thing, audiologist, but then, you know, especially with that. So that's where really I came up with that term. I don't know if too many other people use it, but it does.
[00:21:26] Show re an audiologist by training, but what I'm really doing type of thing. And just a little tidbit, Karen, for all the people that are certified LSL specialists. Now it was really Karen. She was a huge pioneer in the auditory verbal international certification that led to the AG Bell certifications now so she I, I was able to work with her eight years.
[00:21:52] Two, two terms on the certification council were auditory, verbal international, but just, I can. Hard hardly say, sorry, what that is about without I'm sorry. I thought that was turned off without bringing her up type of thing. So yeah. Yeah. If that actually that was an auditory verbal therapist calling me
[00:22:15] Carrie: on the mind.
[00:22:16] Right?
[00:22:18] Lynn: Exactly. Some if that answered your question, but that's it
[00:22:21] Carrie: does, but I think in our, you know, audiology world, Profession. That is definitely an under we, we don't put. As a very important part of the process. It's not stressed as much. And, you know, being on the patient side as well as the professional side, especially in the last couple of years and going through the cochlea implant process myself.
[00:22:50] What you just said about adults and, and needing to, you know, have that offered to them. And, and I think expected of them, if they're going through the cochlear implant process it almost should just be mandatory in this sense, right. To help because it is like learning a new language. When you get a cochlear implant, it sounds so different than what you know, acoustic sounds like.
[00:23:17] Right. And I could see how you would get discouraged or upset or mad or depressed if you didn't have someone coaching you along the way to go through. Right. That listening process of to get right, you know, to good use of, of
[00:23:36] Lynn: an implant. And truly what I said, most of the people that come are coming because they're frustrated.
[00:23:44] Mm-hmm, , they're not happy, but oh my goodness. There. Even in, you know, because I understand like the auditory hierarchy and how to make things very acoustically different in one session, I can give them very acoustically different things to listen to, and they usually can count the beats or tell the different duration.
[00:24:05] And there are like, oh, I can hear mm-hmm I can hear with this type of thing, not that they're anywhere, but. Some people really only need a couple sessions to get them on the path. Some people have a lot of questions that in a clinic situation, you don't have time to answer. or part of it can be some people really need They're I usually, I always ask for if possible, significant others to come and have them come with us and they learn, oh, how do you use clear speech, how to change the environment.
[00:24:37] So there's so much counseling involved besides. The we'll say exercises and training. We do. So, you know, I, I think auditory rehab is the co it's the device, it's the counseling, it's the auditory training. It's what are the situations in changing the environment? And then the people that they talk to, is it the listener?
[00:24:58] Is it the speaker, things like that. So, it's actually a lot of fun and it's so fun to see. Improve because the technology for example is awesome. Once you tap into it and maximize it., it's really cool. It's really fun. Exactly.
[00:25:15] Carrie: Yeah. Well, I'm so glad you have a passion for it, and you've been able to grow your practice so much over the years.
[00:25:23] Lynn: Thanks. And
[00:25:24] Carrie: you do have your own practice, like you've mentioned before. And you mentioned that you do auditory verbal therapy, you do auditory rehab and you do auditory processing therapy. Are you able to explain to the listeners a little bit, like maybe the difference between those three types of therapies?
[00:25:42] Lynn:
[00:25:43] Sure. Sure. Exactly. So auditory verbal therapy I'd say is the heart of my practice and I've centered or specialized that for about 35 years. It's family centered therapy or caregivers and listen and spoken language or LSL is the approach that I use that focuses on teaching children who are deaf or hard of hearing to listen and talk.
[00:26:07] And. and it's based on auditory, verbal practice. So we guide and coach families to help them teach the children to listen. And. So that's very simple type of thing. Mm-hmm that auditory rehab is what we just talked about, and that is for, or to improve communication ability of those who usually adults who've lost their hearing or become hard of hearing once they develop spoken language.
[00:26:38] So auditory verbal, we call prelingual before speech. Auditory rehab is they had something and lost it post speech, but that's also common for maybe a child or, or an older child or teenager who has maybe has a precipitous hearing loss or gets implanted at 10 or 12. They have language. So that is the.
[00:27:01] Type of thing. And then auditory processing therapy. So we hear a lot about that. I know you're in the school. So you hear much about that. So the sessions target and remediate, like the impaired auditory skills, I try to teach compensatory strategies, assist families and teachers in managing Auditory processing disorders.
[00:27:24] Many times, those are individuals who are later elementary, middle school kids. We've already had their hearing tested. We make sure their hearing's tested to rule out hearing loss. They have a whole auditory processing battery of tests and comprehensive medical and educational history. And then once
[00:27:45] Auditory processing diagnosis is confirmed. Then we can begin hear hearing therapy. And what I'd say is a little bit different over with experienced so many providers that provide auditory processing therapy, really focus on visual strategies to compensate. They say, oh, you can't do this very well. Well, here's some visual things that you can compensate.
[00:28:11] I have found a lot of success is really working on and building their auditory skills. Mm-hmm I use similar strategies that I do in auditory, verbal practice. And quite honestly, I've had excellent outcomes with that. So yeah, I mean, it's lots times auditory discrimination, auditory memory, lots of things.
[00:28:30] But way back when I knew that I could not do any everything I could not, nobody can be a test here and be a clinical audiologist do with that technology and do therapy. So I have chosen to specialize in those three areas and it's worked .
[00:28:47] Carrie: Yeah, it definitely has. And I'm sure, you know, you've seen. many leaps and bounds in the last 30 some years, too, with how you provide therapy.
[00:29:00] And like you said, everything's always been auditory, but you probably see a big difference now with the technology piece and, and how the outcomes happen to be
[00:29:11] Lynn: mm-hmm yeah, I'm actually really glad that I was in the era that I was able. Work on spoken language before implants. Of course, I love everything about the great hearing technology, but I feel.
[00:29:26] My skills are, I don't know, deeper because I had to squeak everything out of every little decible and parents had to work so hard. And yeah, that was difficult. We have so many successful people like you and things like that. But I do when I mentor some younger people in the field and they have, I don't know what to do with this child.
[00:29:48] We're waiting for a cochlear implant and it's like, wait, there's so much that you could do. But that, you know, I think that. Some of that helps with wisdom and
[00:29:58] Carrie: right. You know, and like you said, every little decibel can count. Right.
[00:30:03] Lynn: right. Right. Exactly. Exactly.
[00:30:06] Carrie: What would it look like now if for your auditory verbal practice, if a family comes to you and how does that, you know, set up look
[00:30:18] Carrie: Look, do they come to, to your kitchen table? And
[00:30:22] Lynn: no no, no, that doesn't no. Yeah. So basically when I see families now So are we talking about, well, we're talking about children,
[00:30:32] Carrie: right? Yeah. Like a, like a new, like babies infants toddlers.
[00:30:37] Lynn: Sure. Yeah. Okay. Okay. Well, first of all, it's a lot of fun. We do a lot of playing.
[00:30:42] So it is very much play based, but we have very strong goals that we write and, and things that I sort of be beyond the scope, but I guess I would say. When children get a little bit older preschoolers, they're always surprised when they find out at some point that, oh, auditory verbal therapy is Lynn's job, not just a play date.
[00:31:02] so, you know, it's a lot of fun, but what I really do is, so if you would have somebody, you know, I have a child come to me. I always partner with the child's team of professionals. So that would be since I don't do the testing, their pediatric audiologist, any medical specialists. Other interventions as the child get a little bit older preschool and school aged teachers.
[00:31:26] And then we, you know, I work with them through the, through if it's the diagnosis, if it's the fitting of the advanced hearing technology and work with them through that journey of learning to listen and talk. So the team is a big part of auditory verbal therapy. And then I guess maybe the biggest, I don't know if you'd say that would be coaching the families.
[00:31:48] I coach families, how to be their child's first and best teacher. There's nothing that happens magical in one hour of seeing a little a week. It's all about what happens at home. So my job is to guide and coach them. So families and caregivers attend the sessions and we work closely together. I model listening and spoken language strategies and techniques, and then how to incorporate them into daily activities to build listening and spoken language skills.
[00:32:18] Now, of course, that gets more specific with older children. And I don't always start with children that are babies. I may have from lots of different reasons, maybe a third grader come, but they still need to work on auditory skills. Pivotal is the parent or caregivers always involved type of thing.
[00:32:38] And then I support families. You. They may be gone from here years ago, but they can always call me or talk to me or, you know, I I'm, I'm in touch with a lot of families and kids and things like that for years that attended therapy, just like you and me. right. I actually have a, a sort of a fun story to share about that.
[00:32:59] If, if you have
[00:33:00] Carrie: a second. Yeah. I would love to hear it
[00:33:01] Lynn: Okay. Okay. So I started seeing a little girl Megan, about when she was under two, she was from Wheaton here. I didn't tell you about my office. I'll need to tell you that. But started seeing Megan and kept in touch with her for all these years.
[00:33:15] She's in her early thirties now. And to my surprise, Megan and her fiance, Sam got on zoom with me a couple A year and a half ago. And to my surprise, very much surprise. They asked if I would get ordained and marry them. and I was like, marry you but Stan made a big, wonderful point then thank me and said if it wasn't for Megan, I guess meeting me, but whoever learning to listen and talk.
[00:33:45] They would never be together. so their wedding was in April. It was beautiful and it was a privilege. And so I married Megan and Sam. So I guess you could talk about, talk about supporting families. That's sort of through right there, type of thing. So, yeah, yeah, yeah. And then you asked. Another big part of my practice, especially today is teletherapy.
[00:34:11] Carrie: Oh yes. I was gonna ask about that too
[00:34:12] Lynn: Right. So I have provided teletherapy for a long time. For years. I first started with families. I saw in my practice and then they moved. So I sort of continued them sort of before teletherapy was, was popular or whatever, but then. You know, I've seen some for teletherapy, but then once a pandemic, of course, like everybody else, I saw all my families and adults remotely, and I feel like teletherapy really has creates an opportunity to maximize for children, their hearing in their own environment and build confidence and understanding.
[00:34:49] I'm sort of like a little bird on the wall , you know, that the, the families have to work with their child and we go over those things. Before our session and things like that. But the interesting thing is after the pandemic started letting up a lot of my people came back and I started seeing them in person.
[00:35:08] But do you know, almost everybody. Almost everybody has now chosen to go back to teletherapy and it's effective. I mean, when I think so I live in Chicago land, which is, you know, an area that people have to drive. Think of the times the parents, you're not getting your toddler ready in the car. You're not driving.
[00:35:28] There's a lot of stress involved in that. . And then, like I said, it works really good because I'm in their own home environment and things like that. And you know, I'm doing adults the same way over teletherapy. In fact, a couple months ago, I started with an 89 year old woman who recently got implanted and she has mobility issues.
[00:35:48] So when her daughter called me and things like that, we talked about teletherapy. So now her daughter goes to her home signs on and we connect online and teletherapy is perfect, you know, and I believe it's here to stay. I feel that is really going to be a The wave of the future and it is already type of thing.
[00:36:08] But that lady who I spoke of, she was one of the ones that parent, the daughter called and said, mom can't hear anything. She's been implant six months. She has no idea what's going on. They used a whiteboard to connect with her and my goodness. There were a few things we did that first session. One of the things was very basic.
[00:36:31] What we do with babies, take a listing, walk around your house, see if you can hear the water running, you know, on and on like that. So from one session, can't hear anything to that next session. The daughter filed up. She, she goes, oh, I hear everything. I hear the microwave. I hear, I, my daughter, we get in the car, I hear the blinker of the turn signal.
[00:36:54] and the refrigerator and, you know, on and on like that. So it just shows just with the right coaching and expectations, lots a lot can be done and things like that. So. Wow. Yeah. Was there something else you wanted to ask me about? Oh, no. I, I mean, I'm glad you
[00:37:11] Carrie: brought up the teletherapy because I feel like.
[00:37:15] For your specialty of a listening and spoken language specialist. There's not that many of you, there needs to be more right. And like you said, people will drive for hours if they have to, in order to see someone. So to be able to do that type of therapy remotely, as well as in person has probably opened up the doors for, you know, the consumers or families to take advantage of it.
[00:37:43] Lynn: Right. That's what I said. I mean, Really things are so much easier than I used to be. And I don't need to be like the old, but when you asked me, when I first moved to Illinois, my first two patients, Dan Ling sent one, and they were from way Southern Illinois. They would come on Friday night, stay at a hotel near me.
[00:38:02] I'd see him that evening, Friday night for a little bit and they'd come. And I, I think I saw him for like three hours Saturday morning, and then they'd get back and drive and then. I had another little girl that moved from Denver had done auditory verbal. And she lived in Wisconsin, which is of course, north of Chicago here.
[00:38:20] And she would, parents would drive her down after school. So people will do whatever they can to make, to work with their child. And that's how then when I started getting more local kids, it was not very long of time at all. That I knew I really needed to, like you said, there's a huge need still today and thankful there's about a thousand LSL certified people.
[00:38:43] I think that's in the United States. I'm trying to remember the statistics, but. Is getting better.
[00:38:48] Carrie: It is getting better. But when you think about the number of kids with implants and, and, and then if you count the adult population that needs to have, or should have some of the auditory rehab, then that is another person that can provide that tool.
[00:39:07] Exactly.
[00:39:08] Lynn: Exactly. Exactly.
[00:39:11] Carrie: So one other kind of switching gears a little bit, I know that you are very creative and you are very artistic and you have great ideas as well. And no, you do. I, I know you've always have these incredible resources and tools and in 2019 you launched what is called Listen with Lynn.
[00:39:35] Do you mind sharing with the audience a little bit about Listen with Lynn.
[00:39:40] Lynn: Sure, sure. I'd love to, I'm passionate about that too. So I feel Listen with Lynn is their resources or materials that combine my love for knowledge and research and my passion for listening and spoken language outcomes.
[00:39:56] And I have felt like you said, beyond my love of therapy, I do have. affinity for resource design. I'm able to do actually a lot of parent coaching and professional coaching with my resources. They always include a, a page or so of, of information, about language or something about teaching children with hearing loss skills.
[00:40:18] I have listed and spoken language tips and things like that. So it's not. Here's a game downloaded, do it. I feel like I can hopefully make a difference that way, but you know, back in the day I would use pages. We take coloring books and we color coloring books, pages for rehab materials, or we'd cut up pictures for magazines, just very archaic.
[00:40:41] But then I started creating resources over the years for my own. I've said for years, man, I'd love to share these resources, you know, with other people. So like you said, finally, the end of 2019, I launched listen with Lynn and I my resources are a lot of games, some tools, activities. My favorite probably are my self-advocacy resources.
[00:41:05] People. Mostly school, age providers teaching the deaf or whatever, love those. And what's what makes it my favorite. There's a lot of strategies, but my scenarios and situations are taken from real kids. I've seen for therapy. So it's not just I've made them up or whatever like that. But I do have things for adult cochlear implant rehab.
[00:41:26] I have some things for babies. Things like that, but all the materials or families of babies which I'm gonna get into more, but the materials are downloadable. And they're designed to compliment early intervention, auditory, verbal therapy, auditory processing, a lot. A lot of school aged are school based teachers of the deaf and listening and spoken language therapists have really jumped on the bandwagon.
[00:41:52] And it seems like once they find it, they come back for more. So I guess it's going well type of thing.
[00:41:58] Carrie: So that's good so that people can find it on your website. Correct.
[00:42:03] Lynn: Well, they can find a link from my website, right? And that you can go to listenwithlynn.com and you can get to my website. But my, I actually, there are five different platforms where you can.
[00:42:15] Get some of my resources. Do you want me to go over that? Yeah,
[00:42:18] Carrie: sure. Go ahead. I'm sorry. Listeners will want to hear where,
[00:42:21] Lynn: where they can get him. So Listen with Lynn is the name of my store. I'm teachers pay teachers. And I just wanna tell you, teachers pay teachers is way beyond what it sounds. There's lots of other teachers of the deaf and audiologists
[00:42:37] Mental health counselors, OTs, everything on there, but it's a great platform. So all my resources are on there. I have quite a few resources on Karen Anderson's success or supporting success for children with hearing loss site. She has a relatively new teachers takeout toolbox . You could go see a couple resources.
[00:42:58] You go to the listening room sponsored by advanced bios and phone. . And then if you're a member of the online Itinerant professional academy, which is a you're part of the professional academy, there is a membership fee, but she has a number of my resources that if you're a member, then you can just use online with your, your patients, your students, and the fifth place is vocal vision is a teletherapy practice that does provide lots of teletherapy services.
[00:43:30] Through for schools, with teachers of the deaf and hard of hearing and my resources are out in their toolbox. So if you're part of that, you grab a lot of those as well type of thing. So,
[00:43:41] Carrie: yeah. Yeah. Well, I know that. People in the schools, especially appreciate having those resources. I know I have purchased some through teachers pay teachers because you don't have time to make them either.
[00:43:55] Right. So to have someone that has the creativity and is willing to share their there resources with others is really appreciated.
[00:44:04] Lynn: right. Yeah. I usually say, you know, your goals, you know what you're working on. Then you go and you pick wisely resources that will do that. And it makes your job a lot easier.
[00:44:15] You could spend more time doing the therapy or the education that you need to do. And I'm real cognizant, you know, seeing multiple kids, you know, in one day, a lot of times it's great to use one resource that you can level up and down for different families. So a lot of the things that I create work well for that.
[00:44:35] Carrie: Yeah. So, yeah. Yeah. Well, thanks for, for doing all that. And then sure. I guess kind of, as we wrap up a little bit today, is there anything that I didn't ask you that you were hoping I would ask you?
[00:44:48] Lynn: not really, I can talk about anything, so, no, but anybody's welcome to contact me afterwards. If they have something they wanna ask me or, or, you know, talk about or, you know, and is the best
[00:45:03] Carrie: is the best way to.
[00:45:04] Go to your website then to get
[00:45:06] Lynn: a hold of you. Sure. Yeah. There's a contact area there that works out. Good. I'm pretty active on social media. I have a pretty busy Facebook page. I know a lot of people I I'm on Instagram too, but I'm Facebook is my main so it's, I think it's Lynn A wood. LSL auditory verbal therapist or something.
[00:45:25] I'm sure you can find that. Okay. So that's a good way to get ahold of me. Exactly.
[00:45:30] Carrie: Yes. And I can link that up in the show notes as well with your website. I appreciate that. That would be helpful, but I just wanna say thank you for being a guest today on the empowEAR audiology podcast, it was so much fun to go down memory lane and think back to when you met me and just, I think everything happens for a reason and to be able to think about.
[00:45:57] How, like you said, my parents journey and, and their support along the way was huge, but also the village that surrounded them and the different people that they met along that journey and path to raise me was an integral part of where I am today. So I just wanna say thanks to you from a, a long time ago, being an important
[00:46:23] Person in my life and my family's life to before you moved out of Ohio and then it's so much fun to come back as a a professional and to be reconnected with people who were very important in raising me and being that village around me.
[00:46:42] Lynn: That's wonderful. I'm thankful to be a small part of your story.
[00:46:46] And of course your success and care. I couldn't be more proud of you from where I met you and what you're doing now and your impact on others and things like that. So, thanks for inviting me to part of your podcast. I happen to think, as you were talking, you should have your mom and dad as guests on the podcast and what they, your mom will like, oh my gosh, Lynn, but you know, they have a whole other side of this journey, but yes, it's been a
[00:47:11] Joy to spend time with you here and to be your friend. So I appreciate that, Carrie.
[00:47:16] Carrie: Well, thank you. And thank you listeners for taking a listen to the empowerEAR Audiology podcast. If you like this podcast, please be sure to share with others and make sure that you like the page and you don't miss an episode and come back next time.
[00:47:35] Announcer: This has been a production of the 3C Digital Media Network.

Episode 43: empowEAR Audiology - Dr.  Johnnie Sexton

[00:00:00] Announcer: Welcome to episode 43 of empowEAR Audiology with Dr. Carrie Spangler.
[00:00:16] Carrie: Welcome to the empowEAR Audiology podcast, which is part of the 3C Digital Media Network. My name is Dr. Carrie Spangler, and I am your host. I am a passionate audiologist with a lifelong journey of living with hearing challenges in this vibrant hearing world. This podcast is for professionals, parents, individuals with hearing challenges and those who want to be inspired.
[00:00:45] Thank you for listening and I hope you will subscribe, invite others to listen and leave me a positive review. I also wanted to invite all of you to visit and engage in the conversation on the empowEAR Audiology Facebook group. Transcripts for each episode can be found at www dot three, the number three, C digital media network dot com under the empowEAR podcast tab.
[00:01:18] Now let's get started with today's episode. Hello listeners. I am really looking forward to today's interview. And I will be speaking with Dr. Johnnie Sexton, who is an audiologist, and has worked with children who are deaf and hard of hearing for over four decades. He received his bachelor of science and master of science degrees from East Carolina university and his a AuD degree.
[00:01:50] From AT Still University, Arizona Health Sciences. Dr. Sexton has focused throughout his career on pediatric educational audiology service development, implementation, and management, and served on a team to design the early intervention system for audiology in North Carolina, including the newborn hearing screening program from 1999 to 2001.
[00:02:18] He has devoted his energy in recent years to redefining counseling for families with children who have hearing challenges and the professionals who provide services for them. He created the nonprofit agency, the CARE project, serving as executive director for the advancement of family, professional and pre-professional training opportunities and emotional adjustment counseling.
[00:02:47] The CARE project has become a national standard for family engagement, for the unique family retreat experiences, which provide emotional support and education for family empowerment. Dr. Sexton works with the state newborn hearing screening programs across the country to provide family retreats in all states in the United States.
[00:03:11] Throughout his career. Dr. Sexton has been very involved in state licensure under five governors in North Carolina with a clear focus on making sure that the consumer of speech and hearing services are protected from unethical and illegal practice. The North Carolina Speech, Hearing and language association has twice awarded Dr.
[00:03:34] Sexton, the state clinical achievement award in 1996 for his pioneering work in educational audiology and in 2017 for his pioneering work in emotional support for families through the nonprofit foundation who started the CARE project. Dr. Sexton also owns a private practice specializing in educational audiology services and educational sign language interpreting services, title John E.
[00:04:05] Sexton and associate incorporated. This JESA a is 35 years old and employees, 15 audiologists who live in regions across the state of North Carolina. And they served two thirds of North Carolina school systems and many charter schools. From January 1st, 2018 through January of 2021. Dr. Sexton has served as the co-chair of the North Carolina, early hearing detection and intervention advisory board, which oversees the newborn hearing screening program in all birthing hospitals in North Carolina and early intervention services for children, birth to three and continues to serve as a board member.
[00:04:48] In 2018, he was named the number one Audiology practitioner of the year in the United States by the Focus on People awards, he has been nominated twice for the National Antonio Maxon award of excellence. Which honors an individual who has made outstanding contribution to achieving excellence and early hearing detection and intervention program naturally, or in a particular state or region.
[00:05:16] I am excited, but all of you listeners to meet Dr. Johnnie Sexton today and hear about the CARE project and educational Audiology services. All right. Welcome Dr. Johnnie Sexton to the empowEAR Audiology podcast. I'm glad to have you.
[00:05:37] Johnnie: Thank you so much. It's a pleasure and an honor to be here with you, Dr.
[00:05:41] Spangler. I appreciate it.
[00:05:43] Carrie: Well, good. I am really excited for this conversation today, but I always like to start out a conversation if we've known each other for a little bit kind of reflecting back on when we first met. And I don't know if you remember this, but I think the first time I've might have met you.
[00:06:02] You were presenting at what is called OSPEAC, which is our Ohio school, speech pathology and educational audiology coalition conference in Columbus and the CARE project, which we're gonna be talking about today. So I don't know if you remember me there, but that's the first time I remember meeting you
[00:06:23] Johnnie: personally.
[00:06:25] Yes. You know, Ohio has been so gracious and kind to me, period. But, but especially when I started the care project and, and I've single out one person in particular, Dr. Gail Whitelaw was very gracious to, to have me come. I was invited to speak at that conference. And I do remember meeting you and many people that day.
[00:06:47] It was, it was the packed house as I recall. So
[00:06:51] Carrie: yes, it was. And then we also had a great dinner one night. After that with Gail Whitelaw, I think it was her husband and one of our grad students. And you were there for the CARE project. We were having our campUS event. Yes. And I think it worked out that we got to connect.
[00:07:10] But yeah, so we've actually known each other for quite some time when we think back on it. I also like to ask my guest, how did you get into the field of audiology? Because I feel like this, one of those things, people either have a backstory about, or they just happen to fall into it. Do you have a backstory?
[00:07:31] Johnnie: Well, I, I have yes. I have two versions of the backstory. I'll be brief, but you know, I was born in rural Eastern North Carolina in the 1950s and there, as, as anyone knows the history of education, there were no services available for any child with a challenge in any local community. And the family that lived across from us had a little boy born, literally about the same time who was profoundly deaf.
[00:08:02] And, you know, coincidentally, we both were named Johnnie. But our families knew each other. Well, our mothers worked together at the local sewing factory. So there was an awareness created in our little tiny town of the impact of deafness on a child and a family. And so when little Johnny Ray turned six, I guess it was at the time, the only education that was available for him was to go to the state school for the deaf which was probably 300 miles away.
[00:08:41] So the good news is that, that, that there was an option. And of course I'll say the not so good news is that the option required the child to live away from home, starting at age six mm-hmm that stayed with me and in some place in my head, it lingered. So as I grew up and went off to college I never heard of audiology.
[00:09:03] It was a pretty young profession back then. And so was going to be a business major. After one semester of classes, I, I wanted to work with people. I wanted to be people oriented. So I kind of dove into psychology, which led me to eventually it led me to the introductory course. In, in communication sciences and disorders.
[00:09:29] And I just had this aha moment that I might have found my home . And there was a preschool class on campus in the same building where I was taking classes in college, a preschool class for children who were deaf and hard of hearing birth to five. So I started volunteering there. So that's a long way to say.
[00:09:50] You know, I, I found my way with a little bit of a, a, a memory from the past and it, it, it became the platform for my career. And, and, and by that, I mean I was driven to try to create access to service. Mm-hmm for all families. Because where I grew up, there was nothing at the time. I proudly say that my hometown and county like all school systems hopefully across the country they have services.
[00:10:20] So children, you know, are able to go to the local schools and stay at home with their families. And I, I enough about that. So that's how I kind of stumbled my way into audiology.
[00:10:33] Carrie: Well, that is a great story. And I love the, how you said, you know, little Johnny six, you know, when you met him at six before that and how that kind of stuck with you, which kind of makes a great segue into, like you said, your lifetime career of helping families and children, especially on that emotional journey.
[00:10:55] for families who have children with hearing loss. So I wanted to dive deeper into the CARE project and how that has made an impact on not only in your own community, but throughout the United States. So for our listeners, would you be able to share kind of a 360 degree view of what the CARE project is?
[00:11:19] Johnnie: Sure. I'll try. So after 30 years of, of practice and 30 years of working with families, you know, I audiologists traditionally think of working with patients or clients. My path put me in touch with families. Well, before I even finished my master's degree in audiology. So I, I had lots of moms and dads talking to me about their journeys and what it was like.
[00:11:42] And there was a common thread that resonated with me throughout, and it was lack of emotional support for families. They, they felt that they were not getting emotional support. They were getting information and they were getting a bit of a unilateral communication from most professionals. Not all, you know, I'm not at all disparaging colleagues but, but they just felt like they weren't getting that.
[00:12:12] So I was Driven to see what I could do about that. And I spent a year, I call it a year of wandering in the desert. Trying to figure that out. And I remember networking and talking with people and trying to involve even some of my staff. And a dear friend and colleague who is a licensed counselor, sat with me one day talking about it.
[00:12:36] And he said, no one knows what you want to do, but you it's in your head. You need to get past your desire to manage by inclusion in terms of other people and get, get going on your own. So I did, I had dinner with A colleague who was the chair of the program over at East Carolina university, where I had graduated from and telling him about it.
[00:13:05] And he said, well, you know, we have seed grants. Why don't we help you get started? Wow. I mean, I've never written a grant at that point and I didn't know what I was doing, but I just did it. And that gave us a little bit of a kickstart. It helped me begin to get the word out. My husband and I were living on Baldhead Island at the time, which is a, a, a wonderful little paradise with no bridge and no cars.
[00:13:30] And it's a small community. So the mayor's wife we were friends heard that we were trying to get something started for families and she offered an idea. And I always give her credit for this. Why don't you bring families together here? Like we do already for wounded warriors programming and let them have a retreat, let them come together.
[00:13:55] Let them network bond, and gosh, that, that was. Immediately the answer I was seeking that I didn't know I was looking for, and that is what can we do? We can bring them together. And that literally, that, that laid the foundation for what we've done all these years since. So we started having family retreats pretty quickly our North Carolina EDHI program reached out and said, we've, we've heard what you're doing.
[00:14:22] We wanna partner with you. We want to help you do this. So that gave us a statewide platform and we started doing. We literally traveled from town to town, like the old pony express and, and met with families in local communities. I heard about this group called EHDI on a national level. So I started getting involved with EHDI on a national level and started talking to people across the country, in different states about what we were doing.
[00:14:50] And everybody was just so excited and, and reinforcing. So that led me to then try to write grants because every state EHDI coordinator that was interested in what we did said the same thing to me. Well, you know, Johnnie, we don't have any money, but we love what you're talking about. So I decided that I would find money.
[00:15:12] So I got a, I was shocked and thrilled to get a grant from a private foundation. The Oticon Foundation in Denmark I'd done some consulting for them. They were excited about what I was doing with the CARE project. And that gave me the opportunity then to call the state EHDI coordinators across the country and say, Hey.
[00:15:32] I want to come talk to your people and they're we have no money, Johnnie. Well, guess what I do. So I started traveling across the country, you know, sharing the information and the plan and, and that built some, some wonderful support for, for what we, you know, do and, and have done. I then got a grant to.
[00:15:54] Do family retreats across the country, the Oberkotter Foundation. So graciously, they believed in us, they graciously funded us for a three year period. So we partnered potentially we are partners with every state in the United States and US territories to provide not just. The family retreat experience, because I have been so fortunate to evolve what we do to provide multiple opportunities multiple agendas so that families can cycle back through and continue to learn and grow and experience things.
[00:16:26] It also evolved into professional sensitivity training. So I've done a ton of workshops for groups of professionals across the country, not just audiologists, but all professionals who work with families and it focuses on the family's emotional journey. And I evolve that into focusing on my, my new tagline is changing the culture of communication.
[00:16:51] We have to learn to talk differently to each other, to be more sensitive and, and to give each other, an opportunity to be partners in the plans for the child that we're working with. So that is a, I guess, a, a thumbnail sketch of the CARE project, where we were and where we are today. A a, a, an added note when the pandemic hit.
[00:17:13] I sat, I sat at my desk for a month. Very sad because I though, What are we gonna do now? But we, my, my trustee working partner Laura Pike, who is the mother of a deaf child she and her husband are amazing. They've been involved with the CARE project for years. We just sat, sat on the phone and, and I said, I have things in my head.
[00:17:37] I need to say out loud, And Laura said, well, I'll write them down. And at the end of that meeting, I said, these are our new projects. We're going virtual. So we, we converted everything to a virtual platform. I rebranded it and called them learning virtual learning experiences for both families and professionals.
[00:17:57] So that, that has served us well for the past two and a half years.
[00:18:01] Carrie: Good. Wow. You have a lot to, to unpack, I think for the, the CARE project, which, which was exciting. So I guess kind of going back when you said you got the Oticon Grant and you were able to go to different states and say, Hey, you know, we can offer this CARE project.
[00:18:22] What would you say? What would you say to states, like if they have never heard of the CARE project, how would you have just described that to, to a state?
[00:18:32] Johnnie: Well, because I had been involved with NCHAM and the EHDI organization on a national level. I became very familiar with how their funding works.
[00:18:46] I wasn't seeking their funding, but I've been told that I was in the right place at the right time, because all of a sudden there was a requirement that a part of the funding be spent on family support and family engagement and states, even if they had not heard of us with a, even a conversation, they.
[00:19:09] were quick to realize that that's what we do. So I describe what we do and, and everybody agreed that it was definitely family support and that I had approached it in a unique manner and they wanted to work together. It, it was, it was very organic. It was very organic. It just evolved. You know, on parallel tracks and then fast forward in the, in the last, I don't know, two to three years that mandate to use funds through EHDI programs for family support, you know, has grown.
[00:19:43] So we are we're in a, I call it a budget cycle along with EHDI program. So we know that and anyone involved with EHDI knows that the grant year, I think runs from Let's see July one through. No, no, no. It ends March 31st, every year. So they, they get their approvals and their fundings let's say in the summer, and then they can start planning for things through next spring so that that's served.
[00:20:11] We, and we're we're on, on par in many states for a multiyear project. Like the state of Oklahoma, we're the, we're working with them now for the next, I think four years.
[00:20:22] Carrie: Okay. That's great. So if a state decides, Hey, we wanna partner with you for the family engagement and family support, especially through EHDI What does that look like for families?
[00:20:38] If you would have a family retreat, I guess like pre pandemic kind of family retreat, what does that look like for the CARE project?
[00:20:47] Johnnie: Well it, and we even wrote a manual, so we have a manual it's pretty detailed and scares people sometimes. But we form a planning team with the state Eddie program and, you know, it can be EHDI or other agencies, but we form a planning team and we are.
[00:21:03] The managers of the team, we are we can provide resources, but we look to the in-state partners to make sure that we're meeting the needs of the families in their state. Now, there is certainly a list of generic needs across all families. But when we, we like to make sure that a, a retreat, we have an agenda Then first we have families arrive on Fridays.
[00:21:26] Get settled in on Friday evenings. We may even have a, a social activity on a Friday evening, but we are up early on Saturday morning. We recruit volunteers. We have a childcare team. I know we did one in Ohio right before the pandemic hit and we had some amazing volunteers from the, not only the professional community, but the student community in, in Ohio.
[00:21:50] So we have childcare ready to role First thing that morning and parents are then, and I say, this positively, they're separated from their children because the first half of that day is devoted to the parents. and their emotional journeys. And I lead that, you know, it, it's very much asking every person in the room to tell us about their own journey, their family, their challenges and their successes.
[00:22:19] You know, I, I've learned along the way to focus on not just what's going on, that you're potentially grieving over, but what, what can you celebrate each day with your child and your family? And, and so we spend a lot of time that first day on that in the afternoon we have so, and we have our meals together.
[00:22:38] So in the afternoon we break, we have breakout groups. So, you know, parents will separate from their parent partners and go into separate groups so that they can talk individually about their emotional journey. And it, you know, it's pretty amazing and very cathartic I'm told by parents to be able to go into a separate room away from their parent partner and say anything they wanna say out loud with no judgment.
[00:23:05] And they've got people in the room with them who. Able to do the same thing and, and they network, they bond, you know, friendships have been made, gosh, that are still in place all the way back to our first retreat in 2011, I think it is. We also set up an opportunity on that Saturday afternoon to film parent stories and journeys.
[00:23:26] We have my, my dear husband, Xris Kessler is a filmmaker and an artist. And so he comes with. We set up in a private area. Parents are given an appointment time so that they have privacy. And, and it's a safe space and I'm there with them to not interview them, but to. Give them I guess a launchpad and be there for them if they need me.
[00:23:49] And they we've had some beautiful and very emotional stories shared we have a YouTube channel and you can go watch many of them there. So at the end of the day on Saturday, we come together for a wonderful meal together. Maybe some activity sometimes if the weathers permits we'll have s'mores.
[00:24:08] You know, out by little campfire we've, we've had retreats in hotels. And so with parent supervision, if there's a swimming pool there, you know, gosh, we've had some of the most fun times with the families all together, their kids playing in the pool and they're, they're comparing their devices. They're looking at what they each use to be more waterproof.
[00:24:31] It's just another bonding experience. Again, very organic. Sunday, we offer more informational sessions for parents. So we've often had audiology 101, you know, this is the audiogram. These are, are our terms that you may have heard, but didn't understand because parents will tell us all, you just use all these words and these acronyms and, and, and I don't know what they mean.
[00:24:57] So we tried to give them. We try to empower them and give them information so that they can go back home and advocate even better for their child and their family. We've had communication options as, as a session we've had one, a favorite is having a panel with young people who are deaf and hard of hearing.
[00:25:16] And they share their journeys. We've had parents. Of those same kids present, and then they share their journeys and the parents that we have in the audience you know, they're, they're fresher on their journeys and, and there's some, there's some beautiful synergy that, that you can witness with all that going on in the same room.
[00:25:34] Carrie: Wow. Yeah, I'm sure it's a very emotional couple of days that yes, families are involved in and, and all of the volunteers as well. Do you have a particular like story or anything that you can share? I know you've met so many families along the way, but anything that stands out from one of your retreats, that would be significant.
[00:25:59] Johnnie: I have to say that early on and, and they're all. Beautiful stories to me, you know, and I'm how fortunate I am that they're comfortable sharing that in front of me. I mean, I, I am so blessed that they, that we bonded. But I I'll say. There's one family. And it was the first family that we ever interviewed.
[00:26:20] And maybe it was because it was the first, but you know, a mom and dad sat down in front of the camera. Their child was seven years old by then. And the mom had never allow herself to grieve. She is the their amazing parents, they just jumped into action, advocate mode. They talked about that, you know, there was no question.
[00:26:52] We just, we gotta go, we gotta deal with this, but never allow themselves that moment or moments to open up with their emotions and so on that day, and you can see it on the YouTube channel on that day. Dear sweet Robin Hosley let it, it just all came out and she just was able to process and even begin maybe an, a new phase of healing that she didn't even realize she needed to do.
[00:27:26] and we've seen that time and time again, that all, all I ever say that we do is as a part of the CARE project is we give an opportunity for people to come together. And we set the table for parents to join us. And we, we, we are there to facilitate and help and they do all the work. You know, they, the, the sharing, those stories, their own journeys and Robin Hasley was the first and her husband Mark Hasley did the same thing.
[00:27:56] He was there with her and they both were able to just let it go. Now the beautiful thing I've seen and I'm so happy to share is that that set of parents and every set of parents, since then they evolve into parent leaders for the care project. They don't want to go home and sit there and go, okay. I feel better.
[00:28:18] They wanna do more for their own community and they want to do more for organizing retreats. I've had one parent. Laura Hughes over in the Western part of North Carolina gets so involved. And so she in turn wanted to be involved in, in a, a CARE, a retreat. So she actually went out and did site visits and prepared the most brilliant comprehensive report I've ever read on, you know, choices.
[00:28:47] And, and, and she was a leader in that. So. There's a, there's a side benefit to bringing people together, parents together, families together in that they evolve. Same thing happens for the kids. You know, they never forget their experiences. When they come to a retreat, we had a family fun day, which is one of our newer events in June here on the coast at Wrightsville beach park, we put little signs out on the road.
[00:29:14] We have over a hundred people come. It was beautiful and magical, but. All of a sudden, I see a young woman standing in the, the periphery of the tent. looking at me and smiling, and she had a friend with her. And I looked and I looked and I looked and I went, oh my God, it was one of our little CARE project kids from years ago.
[00:29:36] ah, and she, it just graduated from college and she was at the beach with her friends and she saw the CARE project sign and she said, I had to drive till I found you. And there were a lot of tears that day, but. It was a beautiful experience to see that it impacts children as well as the parents. Yeah.
[00:29:58] Carrie: What a ripple effect that it really does create. It seems, it seems. Yes. Yeah. So I, I wish my parents would've had that opportunity to network with other parents and, and they were so alone in the whole process and kinda like you. As you explained the one family that just kind of got it all out because she had an opportunity and you had set the table for that family to be able to express their emotions and be with others in the same way.
[00:30:30] And they just didn't have that opportunity early on to, to meet anyone. So I'm sure it would've been very beneficial for them
[00:30:38] Johnnie: too. well, we'll, we'll, we'll go forward and do all we can while we can. So. Exactly.
[00:30:45] Carrie: And I know you also go to different states and conferences and you educate professionals too.
[00:30:53] What does that kind of look like for your presentations and getting professionals on board with this?
[00:31:00] Johnnie: Thank you for that question. I will say first it keeps evolving because I am on a journey of lifelong learning too. So when I started doing that, I have to give credit a speech pathologist at Cook children's hospital over in Fort Worth, Texas, I think called me and she said we want you to do a, a workshop on empathy.
[00:31:23] And I, you know, I, I never say no, I've just said. Sure.
[00:31:31] And I had started doing workshops that really focused on the emotional journey of families. A part of that of course, is talking about the journey and the grieving. Then I would move on to, I used to use and still do some, some clips from our filmed parent journeys. Mm. To give insight to professionals, because I've said from day one, With the CARE project.
[00:31:55] We hear things from parents that none of us here in a clinical setting or in a school setting or in a professional setting, they don't tend to just open up. So when you're hearing about their day, their week, their month, their life, and it's a very emotional, you know, conversation. It's extremely educational for professionals.
[00:32:18] I've never had one professional colleagues say, well that I didn't want that, that didn't do anything for me. It opens up our minds. So I evolved that to, I, I mentioned earlier, you know, changing the culture of communication and how can we do that? So when I'm talking with professionals more and more, I've included now a whole segment on empathy.
[00:32:42] And it really is basic. It's like, do you have it? Do you know, you have it? How do you know you have it? And let's talk about it. Which has led me to, to, you know, there there's a whole new focus. It shouldn't be new, but it is. In our professions for diversity equity and inclusion . So I talk about things like unconscious bias.
[00:33:03] I even developed an unconscious biased exercise tool in 2020. That's being used now in places around the country. It's not that it's the big deal. It is something that causes people to reflect. So at the bottom of everything with professionals is having them look inward. Giving them an opportunity to find some emotions in themselves that will help them identify with those parents.
[00:33:28] I ask every professional in every workshop to pause with me and take five minutes and think of an event in their own lives. That was an emotional experience. I I've called it grief, but I I've. I've evolved that term to emotional surprises. You know, grief is pretty heavy and dark seeming and is associated with many things and it is an accurate term, but emotional surprises seems to help people wrap their minds around it a little quicker.
[00:34:00] So I asked them to think about that and we, it, it is mind boggling to hear the stories that professionals have graciously shared with me and the audience. Deep within their own emotional journeys themselves. And so at the end of that, I just say, I hope that you are now able to put your shoes, your feet in the shoes of the parents that you work with.
[00:34:26] So when you look at the parent or the child or the patient, they're a human being sitting in front of you with an emotional journey going on and let's be more sensitive to that and figure out how we can communicate differently. One thing I did, I think this is the fifth year now. I created a new experience called the parent professional collaborative.
[00:34:46] I wanted to bring parents together with, with professionals. And we, we did it in person for several years. To give them an opportunity in a child free environment to communi learn how to communicate better with each other and have a greater understanding.
[00:35:02] Carrie: yeah, those are all great ideas.
[00:35:04] I think I remember when you came for the professional CARE project workshop that you did. I. I remember having a very emotional experience there. And I think just, you know, some of the ideas you brought up and, and thinking about it from my own perspective too, was another way to bring that emotional surprises to the table.
[00:35:29] Johnnie: Absolutely. And you bring, you, you bring a very unique perspective because you grew up with hearing loss and, and you and your family face the very issues that we're trying to focus on. And then you became this amazing audiologist. So you've got a, a wonderfully unique perspective. .
[00:35:49] Carrie: Yes. So a lot of times some of the things that you go through end up being, you know, things that propel you into the, into the future and I let you apply what you learned or didn't have access to, like you said you know, learning from that little boy and what he went through to be able to.
[00:36:08] support emotional journeys with families in the future, even though you didn't know that when you were six years old, that that was gonna be happen.
[00:36:16] Johnnie: Absolutely.
[00:36:17] Carrie: Absolutely. . Oh, but is there anything about the CARE project that I didn't ask you that you wanted to share before I asked you a little bit about educational audiology?
[00:36:30] Johnnie: I think we covered it pretty well. You know, I, I hope that we are, are fortunate to keep growing and, and serving. We've had support from surprising places and some very appreciated organizations companies. I, I think one thing that was so unique, we had the funding and, and we were asked to go to Guam.
[00:36:52] So I sent a team of six people from the United States. And, and, and they went and spent time there and, and brought the CARE project all the way to the other side of the world. So we're, we're hopefully at we're, we're, we're here. If anyone needs us and wants us, we'll keep our partnerships going and growing.
[00:37:09] And and through the virtual platform, even if we return to in person, we're able to reach people everywhere. So that that's, I guess that's the, the final note is that we hope we keep growing and, and helping people well, good.
[00:37:24] Carrie: Yes. Cause it, it needs to be happening all over the world so that the silver lining in the virtual platform.
[00:37:33] Changing gears a little bit. I wanted to ask you a little bit about educational audiology, because I know that is near and dear to me in my own professional live, but you have a private practice that specializes in educational Audiology. You've been doing it for multiple years. Can you share a little bit about your practice and how that works in North Carolina?
[00:37:57] Johnnie: Absolutely. It was another one of those accidental things that happened early in my life. I mentioned the preschool class that I volunteered in as an undergraduate. I was able to cover a, a part-time position as a public school speech therapist before I went to grad school in audiology, which gave me a real sense of the public schools.
[00:38:20] I fell in love with the school environment. I graduated. I finished my master's degree in audiology at the point in time where a, a federal grant had been funded. Actually the, the, the chairperson of our department at East Carolina university had written a grant to establish something called Project Ears.
[00:38:41] And it was a mobile hearing test center assigned to 17 school districts in southeastern North Carolina. One of my dearest friends and colleagues had been hired to direct it. She is an audiologist Dr. Pat Chase. And she reached out to me and she hired me and one other, one of my classmates.
[00:39:05] To join her. So there we were with this responsibility to create the model for educational audiology in the public schools in North Carolina in the late seventies, it was pretty remarkable at the time. It was like, oh great. I have a job. Yay. But we traveled, we went to schools I think it was 7,700 square miles.
[00:39:27] And the thing that was so personal for me is that it was the region in the state where I grew up. So re remember my comment about access to service. there, I am along with my team creating access to service in my hometown, in my home county and in that region. So it, it meant the world to me. Two years into the grant
[00:39:51] we the funding ended, so we had, we lost our jobs, you know, never imagined losing my job, but I did. And there were no obvious choices at the time for me without maybe relocating or whatever. So I was approached by a company that sold equipment to schools for kids and people doing testing, FM equipment, tympanometers.
[00:40:19] Audiometers what have you. And I was hired to become a salesperson and consultant. Now I bring that up. The five year, period of time I was with that company. It was at least five years. My whole world changed and I saw technology in development before it even came into the world, I learned so much, I was sent around the world to learn things that I never dreamed of.
[00:40:47] And so during that period of time, the schools that we served with project years, the directors kept calling me and saying we really miss the services. So one lady, who's a dear friend and she and her husband are still in my life. Linda Beman called me to come to Duplan county schools and sit with her.
[00:41:08] And she said, you know, Johnny, I can't hire you because the legislature won't allow us to create new jobs right now, but I can contract with you. And I didn't know what that was. but that sweet friend showed me what to do. So I got several school contracts enough to quit my job and start my practice.
[00:41:29] And, and here 35 years now of John Sexton and Associates and we, we grew word of mouth. You know, a, a, another huge blessing I advertising and you work in the public school arena, you know, it, it's not the same thing. It's not like you're selling mayonnaise or hot dogs , you know, it's a very personalized service.
[00:41:53] It's a very unique service and in North Carolina, while we recognized the importance of it back then, there no new jobs were being created. Now the good news is that there were several programs created in house, in several counties in our state that have grown and they've done great, but we are a pretty rural state and that's I think, common across the country.
[00:42:19] And so we are able to provide educational audiology consulting servic anywhere in North Carolina. We've I have 15 audiologists now on staff and they live in regions. I even have done some things virtually because of distance. So we try to be there for these school systems. You know, if you can't have access to the service, then you're, you're in trouble in lots of ways with parents.
[00:42:48] they deserve the service. The kids deserve the service. What are we gonna do? So we really have dedicated ourselves and our team to being educational audiologists. We don't do anything else. We work the school calendar. The school year, we operate in the name of the school system. We, not that there's anything wrong with it, but we don't sell products.
[00:43:06] We don't dispense heairng aids. We are purists. You know, we are educational audiologists and we get up every day and we get in our cars and with portable equipment, you know, we're able to, to do what needs to be done. And we're, it keeps evolving. You know, now we have access to the statewide data system online.
[00:43:24] So we're, we're truly a part of the team. We're a part of IEPs. My wonderful staff has created some advocacy training for kids. And so we've grown our role and in some counties we started with one day a week and now we're there five days a week because there's a need, you know, I always laugh.
[00:43:42] There was, I won't named the county, but when I was starting my practice, I called one county director and she said, oh, we don't have any deaf kids here. And I'm like, Really?
[00:43:55] Two years' later. I've heard that before two years later, she called me. She says, you know what? A parent has threatened to sue us and we need you. So anyway it's been an amazing organic path. I hate to keep using that word, but we just work hard at what we do every day. And we get calls every year to come help more schools.
[00:44:13] We're now working with charter schools and private schools. We are in one we're in 70 of 100 counties in North Carolina.
[00:44:20] Carrie: Wow. That's amazing.
[00:44:23] Johnnie: It's it? 35 years, but I, I, gosh, we'll just keep doing it. We'll just keep
[00:44:27] Carrie: doing it. Right. And how do your 15 educational audiologists do you guys network? Do you get together so that everybody's on the same page about services and supports.
[00:44:39] Johnnie: Yes, absolutely. We have a good cohesive group. We communicate of course, very often via email. And we can each reach out to each other with cell phones and texting and another silver lining to the pandemic. I started having virtual meetings you know, getting together when you've gotta drive four hours to get to a meeting.
[00:45:00] Yeah. You know, nobody, no, everybody did it, but now we don't have to. So we meet virtually the staff loves it because we can meet monthly if we want to. Everybody can network share. If anyone has a question, midweek, they send an email out to the whole group. They can get amazing feedback. So there's a good network and bonding you know, amongst the staff.
[00:45:23] Carrie: That's that's great. So. You know, I know a lot of states don't have support or maybe they only have support like you said, in the more urban areas where there's a big city and they are able to hire their own educational audiologist. Do you have suggestions from your wealth of experience of how other states may advocate to have services?
[00:45:53] Johnnie: I think the most important advocacy tool is what's legally required. Okay. If anybody starts debating and discussing, you know, we have, IDEA a you know, we have state licensure there's statements in federal and even some state legislation that will show clearly who does what. I've had over the years, not so much anymore because I've fought hard.
[00:46:21] I've advocated hard for educational audiologists to have a place. We used to have this, this, you know, gray line between, well, the teacher of the deaf can do that. And I'm like, no, they can't. And here's why. And here I have handouts. Now that show, you know, the, the responsibilities and roles above, because we, we value teachers of the deaf.
[00:46:44] But they're not supposed to be selecting and fitting FM equipment. Right. But they have, it's just a matter of advocating positively advocating with hardcore information. You know, don't, you can't have an emotional conversation with you need this, and I don't know why you have to say here's the federal regulation here's IDEA.
[00:47:07] And I even have it carved out. And this is what it states about. Audiology, you know, who can do what? I've had another recommendation is make sure you develop great relationships. Don't burn a bridge, you know, the relationships I've had from the beginning of my career are still in place today. And my example is at the Department of Education in North Carolina, the, the, the head person over all special education had me write a memo for her to send to all school systems that clearly states who does what.
[00:47:44] And so we value the roles of all of the team members, but educational audiology is a required service. And when I work with parents, I am not shy about telling them you deserve this for your child and you need to request it. And if you're denied it, then you need to demand it. and I give them the tools too.
[00:48:07] Carrie: right. No, that is very helpful. And. It shouldn't depend on what a child's zip code is, whether or not they get services. So, you know, like you said, IDEA clearly spells out what our role is and a child deserves to have those services in the public schools.
[00:48:29] Johnnie: And the, the, I I'll just reiterate one more time build relationships because now in North Carolina, if a school system calls the department of education they recommend that they call us.
[00:48:43] That's great. You know, it, it, it, it, it took, you know, 35 years of building it, but, you know, we we've really tried to educate school staff school, personnel, directors across the state. And, and I, I'm proud of 'em. They all clearly understand for the most part, you know, what they need and how to go about getting it.
[00:49:02] Carrie: Good. Good. Well, that's quite impressive that to be able to cover two thirds of this state of North Carolina with educational audiology, and hopefully the other third is covered because they are bigger districts and yes,
[00:49:17] Johnnie: they, they have in-house programs and a final, just a, a final recommendation to any audiologist.
[00:49:24] But I'm speaking to my colleagues in educational audiology. Get become active in not only professional associations, but one of the greatest learning experiences for me that serves me well to this day is I became involved with state licensure. I was the first educational audiologist appointed to the state licensure board in it.
[00:49:48] No, no offense to colleagues, but it was always been predominantly hospital and university audiology. And I love my colleagues, but the perspective of educational audiology and the public school setting was never represented. And I think it needs to be that diverse. You know, we need to understand from a licensure standpoint, because licensure is in place to protect consumers, right?
[00:50:10] Let us have a voice in that as well.
[00:50:13] Carrie: Yeah, that's funny you say that, cuz right now I'm on a state licensure board and congratulations. I think I, yeah, and I've been on there for quite some years now, but I don't think any other educational audiologist has been appointed before I have been on the board and it does bring a whole different perspective.
[00:50:33] Like you said, protecting consumers. And those are the children in the schools who are deaf and hard of hearing. So that it's, it's been a good perspective. Is there anything next for you you've, you've done so much. Do you have anything next that you wanna share?
[00:50:50] Johnnie: So this is I, I, I, this is a positive next.
[00:50:56] I'm at an age I'll be 67 soon. The important next steps for the care project and for my practice is to create a transition plan. I don't want anything I've ever done to stop. If I stop breathing, that sounds morbid, but if I'm gone tomorrow, I don't want this work to stop because I truly believe that because of all the wonderful people who have joined in and helped us move forward, I believe there's value in having it continue.
[00:51:31] And so I'm talking with younger generation audiologists on my staff. I'm talking with a variety of people, you know, in the CARE project world, I, I want to have a, a transition plan and I hope I plan, I don't want to ever stop working. And my parents are 92. So, you know, genetics may be on my side and I'll be around for a much longer time.
[00:51:54] But I think stepping outside of that, The most important thing I can work on now is a transition plan. So the CARE project lives on. And so does my practice.
[00:52:05] Carrie: Yeah, well, that's a great next step and probably brings up a little bit more time for you as well so you can enjoy some travel and other things.
[00:52:15] Sure. Now that things are opening up, but, well, Johnnie, I just wanna say thank you for being a part of the empowerEAR Audiology podcast today. I really do appreciate you sharing about the care project and educational audiology and you have. So much for the field of, of educational audiology and pediatric audiology
[00:52:36] And I just wanna say thank you for all of your insight and program development that you have been involved with over the years. Well,
[00:52:45] Johnnie: thank you for inviting me is again, a pleasure and an honor. You're one of my heroes, so it's a, a, a, a special honor to be with you and be invited by you to join you on your podcast.
[00:52:56] So thank. Well, thank you.
[00:52:58] Carrie: And thank you listeners for tuning in today. If you wanna get a hold of Dr. Johnnie Sexton, I will put some contact information in the show notes that you can reach out to him. I will also link to the YouTube channel and the CARE project that he referenced today in the podcast.
[00:53:17] And thank you for listening and have a great day.
[00:53:21] Announcer: This has been a production of the 3C Digital Media Network.

Episode 42: empowEAR Audiology - Dr. Jessica Hoefler

[00:00:00] Announcer: Welcome to episode 42 of empowEAR Audiology with Dr. Carrie Spangler.
[00:00:16] Carrie: Welcome to the empowEAR Audiology podcast, which is part of the 3C Digital Media Network. My name is Dr. Carrie Spangler, and I am your host. I am a passionate audiologist with a lifelong journey of living with hearing challenges in this vibrant hearing world. This podcast is for professionals, parents, individuals with hearing challenges and those who want to be inspired.
[00:00:45] Thank you for listening and I hope you will subscribe, invite others to listen and leave me a positive review. I also wanted to invite all of you to visit and engage in the conversation on the empowEAR Audiology Facebook group. Transcripts for each episode can be found at www dot three, the number three, C digital media network dot com under the empowEAR podcast tab.
[00:01:19] Now let's get started with today's episode. Again, welcome to the empowerEAR Audiology podcast. Before we begin today, I wanted to. All of you who join me for each and every episode release. I love hearing from each of you. And I want you to reach out to me if you have any ideas about topics and people who are empowering, as it relates to hearing differences and challenges.
[00:01:48] Part of being empowered in life is being able to share authentic stories of hurt, healing, and hope. Speaking of empowering, today's guest is one of the most influential individuals that I know. And I am blessed that we are colleagues, friends, and coworkers. In this episode, Dr. Hoefler will share about her journey.
[00:02:14] of becoming an audiologist and how her life experiences have led her to a life passion of unlocking representation through literacy for every child through her nonprofit called Piper's Key. Before I introduce all of you to Dr. Jessica Hoefler, I wanted to share a little bio. Dr Hoefler received a Bachelor of Arts degree from the Ohio State University in speech and hearing sciences followed by her doctorate of Audiology from the university of Akron through the Northeast Ohio, AuD consortium.
[00:02:54] During her time at NOAC, she completed different rotations through the field of audiology, including the Cleveland Clinic, Akron public schools, and the Cleveland department of Veteran Affairs. She started out in the world of private, private practice and then joined the Summit Educational Service Center.
[00:03:15] About six years ago as an educational audiologist, she has a passion to help individuals with hearing loss. Her goal for all students is to ensure not only access to their instruction, but also guide them to be successful advocates for their hearing and listening needs. Whether it is teaching them how to use their personal hearing assistive technology or understanding their hearing loss.
[00:03:42] She loves watching her students grow and advocate for themselves in the classroom. When she's not working, she enjoys spending time with her husband, family, friends, and running with their dog. Maddie. She has two amazing daughters, Quinn rose, who is a spunky and smart five year old and Piper Grace, who is a gorgeous and fierce angel in heaven.
[00:04:08] They just welcomed their newest addition to their family. Leo. Jessica welcome to the podcast. Welcome Jessica to the empowEAR Audiology podcast. Thanks for being here.
[00:04:24] Jessica: Of course. Thank you so much for having me.
[00:04:27] Carrie: Well, I this is a different kind of podcast, because I get to interview a good friend of mine and an an audiologist.
[00:04:35] And because I, whenever I have an audiologist on the podcast, I always like to find out from them. How did you get into the field? Do you have a story behind that? Yeah.
[00:04:45] Jessica: So, you know, honestly it's not a very cool one, but I started in journalism and then just randomly switched to communications and then realized I actually liked the.
[00:05:00] Helping people end up things. So it just kind of switched. And I really didn't like oral exams. So speech was not in the, you know, works for me and I love the ears and I love working with kids. So now being in the schools with you is just so much fun and I've, I've really found my passion in it. So yeah, I'm where I'm meant to be.
[00:05:24] But my story wasn't as cool. no,
[00:05:28] Carrie: that's okay. Some people have some like backstory of why they got into it and they met someone or whatever, but that's great. And I know today I wanted our audience to really hear about your story about Piper’s Key and how it came to fruition, because it is a story that walks through many life emotions, including.
[00:05:51] And struggle. So I know I'm probably gonna need to grab some Kleenex here, but would you be able to just walk us through the backstory of Piper's Key?
[00:06:02] Jessica: Yes. So Piper's key is my love for my daughter, Piper, who passed away in May of 2020 from spinal muscular atrophy type zero (SMA type 0). She, when she was born, we discovered.
[00:06:19] She was unable to breathe, move, walk, anything that would muscle function she would ever have. She couldn't swallow anything. So she was immediately put on life support and taken to the NICU. And ironically, I actually do think she would've had hearing loss too. She was given Gentamycin immediately, since they didn't know what neurological disease she had at the time.
[00:06:41] But when they found out of her muscular issues. She was diagnosed with the rarest form of spinal muscular atrophy. And for those that may not know, I like to kind of compare it to it's pretty much the pediatric form of ALS. So they slowly lose all muscle function and basically are trapped in their body.
[00:07:03] So after 27 days, my husband and I made that painstaking decision to remove life support. And we were able to remove life support at Akron Children's in the outside right next to a beaming hydrangea bush and the sun was pointing down on her. And so she just had a beautiful end of. But we often call that our opportunity to unlock her from her body.
[00:07:32] So we gave her the key that ultimately freed her. And so I knew when she passed, I needed to find a way to help her live on, like, I wanted a way to parent her still. I didn't know what that would look like, but I'm just, that's who I am. I like to create and give back. And I also knew that with my profession, I could kind of mend.
[00:07:53] join both of them together. And not only be able to honor my daughter, but be able to every day through my work, provide some support. So Piper's Key is my love language. Like I said to Piper and we gift inclusive books to children with disabilities that represent themselves. Right now, most of our books are children's books, but we're really trying to start to focus on middle school and even get up to high school.
[00:08:20] And our whole goal is just that every child is able to see themselves in a book. So our motto is we're unlocking representation for every child.
[00:08:31] Carrie: That is amazing to be able to have that hope come out of something that you said was so painstaking in the process, how did you get the idea for creating the idea of inclusion and books.
[00:08:49] Jessica: So a lot of it, I'm going to say to you too, and talking to you I knew I wanted to do something that was empowering. I didn't want to focus on the grief. So many of the stories I heard and the people that do honor their children, it's wonderful, but they do focus so much on that sadness and support there, which is so needed.
[00:09:09] But I didn't wanna do that. Because I have a five year old now. Well, she's now five. She was three at the time. And I wanted to give something that she could say her name, Piper's name proudly. So I just thought of the inclusion. I thought of the kids that we work with on a daily basis and what we do. And so much of what I learned through you was that empowerment, that ownership, that self advocacy and what better way to do it in the first media device, every child gets and that's through a book.
[00:09:36] So it is the first thing they touch. The first thing they hold as far you know, learning media, reading, developing. And so why not see yourself in that book? And I noticed how empowering it for siblings and parents too, to learn how to talk about it. It's almost like, okay, I can, I can talk about this disability in, in a positive way and not be afraid of it.
[00:10:02] And if Piper was here, she would've had a huge amount of self-concept issues that she would've had to work through with all of the disabilities she would've been living.
[00:10:13] Carrie: Yeah, that's great about the different books. And like you said kids love to see themselves represented in, in books and to be able to share that gift with with others is amazing.
[00:10:25] I remember
[00:10:25] when now Piper’s Key is a 501c three nonprofit. Official organization. And I remember the day that you got your letter in the mail was significance around that can you, can you share?
[00:10:38] Jessica: that day was huge. So again, everything that happened with Piper was like right at the start of the pandemic. So everything was at a shutdown.
[00:10:49] We all know like the government and getting things was at a, such a snail pace. . And so I was prepped that I, I launched Piper's key on her first birthday, which was April 23rd, 2021. And I had filed for the 501c3, but I was warned that it would be probably a few years before it would be looked at the IRS wasn't touching that stuff at the moment.
[00:11:13] And they even have a disclaimer on the website that was like, we're not looking at 501c3 applications at this time. And Randomly on, on a day in July, I found out I was pregnant with our now rainbow. It was terrifying because we were not trying, we were wanting to adopt actually to avoid the genetic heartbreak that we had with Piper.
[00:11:36] Because she, we did have a 25% chance of it happening again. And I opened the mail after finding out and also being absolutely horrified and terrified. And I just get. Little envelope from heaven. That was Piper's status. And her 501c3 for Piper's Key. So it was almost like she was saying, Hey, Nope, I'm watching my little brother here.
[00:11:59] He is. And this is my little gift. So in July 2021, we got our 501c3 status, which was such an amazing thing. And we weren't supposed to, so that was even cooler. So.
[00:12:12] Carrie: Yeah, I would say that's definitely some Divine Intervention there for absolutely your family. And yeah. So kind of thinking about pipe is key and many of our listeners for empower your audiology are audiologists and teachers of the deaf or speech language pathologist, we parents, and other related service professionals who may be working with children with many different differences.
[00:12:38] How can the get it, you know, share Piper’s Key or, you know, what is the process there for getting some inclusive books?
[00:12:48] Jessica: Absolutely. So like I said, when I started this, obviously we don't, we're all disability. So I really try to focus on every type of disability from the most severe, multiple disability children, all the way down to maybe someone just working on speech and language from a very mild standpoint, they're just maybe a little behind.
[00:13:08] But hearing loss, being a huge passion of mine, I often say like, oh, someone will email me and say, do you have any books on hearing loss? And I'm like, do I have books on hearing loss? I have this whole library that I kind of hoard for all of us to kind of use. So if they have a student, so any audiologists out there, parents of a child with hearing loss or teachers of the deaf and hard of hearing,
[00:13:29] I would encourage you to reach out to Piper's key and visit our website. Piper key.com. and I will just mail you a book. You just gimme the details. We have books on hearing aids. We have books on bimodal children. We have books on cochelear implants. The process of cochlear implants.
[00:13:48] We have Baha books. We have books for older. We have books for younger. And so just a huge plethora of books. We also do have books available for those kids that are maybe not auditory oral and focus more on the ASL aspect too. So, you know, I really do want to keep that option open. But you know, that I would just encourage to use this resource, cuz I want them in the hands of as many kids as possible.
[00:14:13] And again, particularly those kids with hearing loss because that's the second passion of mine. So.
[00:14:19] Carrie: Yeah, I love how you were able to blend. Piper's Key your personal purpose with your personal passion of audiology too. So it's, it's a beautiful thing. Fun.
[00:14:32] Jessica: yeah. I love giving them to my students and that's, I think been a really fun part is when I get a new student or a parent or I hear about it, I get to hand them that book personally, otherwise a lot of the books just get mailed, so I don't get to see them open it.
[00:14:47] Or they're at the hospital being given out by physicians, which is a huge honor, but again, I don't get to see that face. So it's really fun being the audiologist that gets to hand them the book. And then when they see the devices on these characters, it's, it's so empowering. So I'd encourage everybody listening to definitely reach out.
[00:15:05] Cause again, no cost, just something I will mail to you.
[00:15:10] Carrie: Yeah. And that part of it. So no cost? How do you. How are you able to get these books and mail them for no cost?
[00:15:22] Jessica: Yeah. So again, because we're a 501c3 now we are completely funded through donations. So a lot of our donations are anyone that just can gift online.
[00:15:33] You can, we have a PayPal account as well, but we also do a ton of fundraisers. Now I'm in Northeast, Ohio. You know, a lot of them are local in town, but we've had so much support from my community in Hudson, Ohio that have just embraced us and given that way we have done like other kinds of fundraisers online, Facebook, if you wanna even just contribute in a small way, it does pay big forward is linking on Amazon smile.
[00:16:01] You can link a charity and we are on there as well. And so I think it's. 0.05% of that purchase goes to Piper's key. However, I will tell you if you purchase like me on Amazon, it adds up and it means something. So anyway, there's so many ways to give and we're constantly growing, but you can get a tax write off and tax deductible donation online as well through my website.
[00:16:31] Carrie: great. Yes. So I know that you have actually gotten reached out to, from organizations and different groups too, to sponsor you.
[00:16:43] Jessica: Yes. That's been really fun. We've definitely had support through some preschool parent organizations that have really wanted to like kind of embrace Piper's Key and use.
[00:16:54] As their charity of choice. We had in the winter months we had Krampus, he donated there's a Krampus character. And if anyone's heard of the German folklore, he's kind of the antithesis of Santa Claus. But anyway, nonetheless, even though he scares children, they donated a hundred percent of their proceeds to Piper's key.
[00:17:17] And that was huge. I mean, it's just their, the people that organized that. The Ohio Krampus society were just so fantastic and generous. So that's one way. And then we also are looking into grants and opportunities that way to provide that funding. A lot of the authors because their parents or professionals in the industry, or even children.
[00:17:38] We'll donate books too, and I'm able to get them at an easier cheaper rate, which is nice when I'm buying bulk, because I'm just making sure that these get into the hands of as many kids as possible. So to date, I know we're rounding the corner to over 5,000 books I've been given, which has been really cool to think about they're just constantly flying off the shelves and I'm getting more and more orders and yeah, I love it.
[00:18:03] So again, emailing me. It is no cost. I will mail it out a hundred percent because all the money about 95% of it goes directly to the books. The other 5% just go to stickers and bookmarks and postage.
[00:18:17] Carrie: All right. That's amazing. And almost 5,000 books have been given, which is a, a huge milestone. I think another thing that you have told me about because of Piper Key that you didn't really expect was some additional community reach.
[00:18:34] And one of those endeavors being the mini libraries that are in outside locations. Can you share a little bit about that?
[00:18:42] Jessica: Yeah, that's been really fun. So one of the projects that I'm starting to really enjoy is trying to go into the communities and seeing if we can set up many little libraries, those free inclusive libraries that you see around towns.
[00:18:58] And I want the libraries to really be focused on that kindness, inclusivity for children with disabilities. And we have set one up at one of the elementary schools that I work work at. And then I also just set one up where Piper is buried at her resting place and that one's more grief focused, so it's not necessarily on disabilities, but nonetheless it's a inclusive book box that can anyone can grab and use just to again, get access to that.
[00:19:26] And so my goal would be to also set them up in communities. So I Tried to let people know that I know if they want to do that at their, in their town contact Piper's Key and we'll work with you to try to see how to get that rolling. There's lots of ways to do it. With the box at the cemetery, we actually had a wonderful Eagle scout do it, and she built the whole thing.
[00:19:46] It's amazing. And yes, SHEdid it. So it was really cool that it was a female Eagle scout. And I know we want to set some up in the around town and Hudson as well. And also at Summit Educational service center. We were talking about that too. So for the following, year just to make sure we spread that.
[00:20:07] Carrie: Yeah, just a great, I guess byproduct of Piper Key to yeah. Serve in the community that way as well. So, Jessica, do you have any future goals or thoughts about Piper's Key and next steps
[00:20:22] Jessica: Yeah. So it's funny. I say that Piper's key, even though right now I have this perfect little mission statement.
[00:20:31] I've always said, it's now I'm hearing like so many whispers. Like if I wanted to, I could really take this off and, you know, I really want it to be something that people lean on, but I do want it to evolve. I've said if Piper was here, she'd be growing up and going through different stages. So I've even met with an adult disability organization and trying to see how we could support there.
[00:20:53] We, it might be through books. It might be through a library for adults. But either way, I kind of just see it moving through the motions as the Piper was here and growing up too. So it's not just for children. That's why I do encourage that anyone that has a child of any age with a disability reach out, because I'd like to do my research and try to find.
[00:21:15] Some avenue to support them and empower that, that individual. But yeah, I, I wish I could say I knew where it was going and my goals are that we just continue to make progress in getting kids, confident, families, confident. I think that's a huge one. And I'm just gonna let it continue to go where it needs to go.
[00:21:34] I never saw it going as far as it's going right now. And so I'm really encouraged to watch It kind of fly. And again, the fact that I get emergent with educational audiology and with my profession and see these kids that I see every day enjoy it is just, it's a blessing and something I never really even thought of.
[00:21:58] Carrie: Yeah. And I would have to say, you know, from my standpoint, too, just being able to give books to kids too, I see the, their face light up and they're excited and they're just clutching their book and they're like, we can take it home with us. They're so excited that is theirs. And, and they can keep it and share it with their classmates and, and things like that.
[00:22:18] So really seeing themselves in books is so important. Mm-hmm. I agree. Is there anything that I didn't get to ask you that you wanna share about Piper's key?
[00:22:31] Jessica: You know, honestly, I think the biggest thing is just know that this is a resource out there. I've had some professionals hesitant. They don't wanna necessarily take the resources away from me, but that's the point.
[00:22:43] The point is to mail it to kids. And so. You are hesitant to give it directly to a family. If, if there's an audiologist or teacher of the deaf out there listening right now that maybe doesn't want to provide that child's information, you can do what we do Carrie and that is just, I'll send you a box of books and you can give them to your kids that way, if you'd rather hand them out themselves and, and give them that way, otherwise parents again, reach out.
[00:23:12] So I want this resource to be available. Take advantage. I've got lots of books. We continue to grow. The authors that I have for hearing loss are just so phenomenal. Their parents with such passion, their kids with such passion. And so yeah, let's get these in their hands.
[00:23:31] Carrie: Yeah. And if people do wanna order books, can you share a little bit about navigating your website and what your website's address is?
[00:23:40] Jessica: Absolutely. So my we address is www.Piperskey.com. And when you go to the website you're gonna go to donate to the. And then send a child a book. I do have a lot of my books listed on the website that you can kind of comb through. But I often say because it's constantly evolving, that's not all my books.
[00:24:02] So that will, when you type in the information, it will email me directly and I'll get more information, just really make sure I match the appropriate book to that child. So really it's just email me out that way. If you'd rather email me directly and not go through the website. My emails, Piperkey [email protected].
[00:24:22] And you could email me about questions if you'd like me to send you golf books. We can talk about that for our Canadian listeners. I do include Canada. I will just warn I do have to go through a different avenue for Canada, just because shipping costs more than the book. So but we, I still am including all of Canada too, because there's such an amazing.
[00:24:45] Group of not only spinal muscular atrophy, SMA of families that I just like really grew to love, but also some wonderful hearing professionals, so audiologists teachers of the deaf. And so by all means, still reach out.
[00:24:59] Carrie: Well, good. Well, thank you, Jessica. I am. So again, grateful that I get to work with you.
[00:25:05] First of all. and that you such an amazing friend and I am just always, I don't know, just. I, I don't even know the the best word for it. I'm just, you are just amazed me every day with your strength and, and your positivity and being able to change, you know, something that was very obviously painstaking into something that gives so much hope to everyone else.
[00:25:34] And to be able to say Piper’s Key every day or Piper every day with her nonprofit organization. Piper’s Key, which is positively influencing so many different people and being able to share the gift of reading and literacy with, with others too. So thank you for all that you do because you really do show.
[00:25:54] So much positivity in something that others may not have seen that.
[00:26:00] Jessica: Yeah. Thank you so much, Carrie. And again, I love every day getting to work with you. I learn about that self advocacy every day from you. This is just, I'm just a mother on a mission and. Yep. Just doing it every day. Just doing my job, raising her as if she was here.
[00:26:15] So thank you very much for this opportunity to share her story.
[00:26:20] Carrie: Well thank you for being a part of the empowEAR Audiology, podcast, and listeners. Thank you for listening today. I hope that you will share this podcast with other listeners so that they can hear this amazing story. Be sure to visit the website and order some books and think about making a donation to Piper’s Key
[00:26:40] So that others can get, get the gift of literacy and inclusion as well. So thank you.
[00:26:48] Announcer: This has been a production of the 3C Digital Media Network.

Episode 41: empowEAR Audiology - Sara Robinson

[00:00:00] Announcer: Welcome to episode 41 of empowEAR Audiology with Dr. Carrie Spangler.
[00:00:15] Carrie: Welcome to the empowEAR Audiology podcast, which is part of the 3C Digital Media Network. My name is Dr. Carrie Spangler, and I am your host. I am a passionate audiologist with a lifelong journey of living with hearing challenges in this vibrant hearing world. This podcast is for professionals, parents, individuals, with your own challenges and those who want to be inspired.
[00:00:44] Thank you for listening, and I hope you will subscribe, invite others to listen and leave me a positive review. I also wanted to invite all of you to visit and engage in the conversation on the empowEAR Audiology Facebook group. Transcripts for each episode can be found at www three, the number three, C digital media network dot com under the empowEAR podcast tab.
[00:01:17] Now let's get started with today's episode. Okay, welcome to the empowEAR Audiology podcast. I am really excited to have a guest with me today. I have Sarah Robinson. She is a speech language pathologist and family consultant for Children's hospital in Colorado Springs. She has specialized in working with children who are deaf and hard of hearing, but over 13 years, She started at Boys Town, national research hospital, in Omaha, Nebraska, and then came to children's hospital in Colorado.
[00:01:54] And she enjoys writing with children of all ages and communication modalities to help each child and each family reach their full potential. Sarah also grew up hard of hearing and uses her experiences to help guide families along their own personal journeys. So Sarah, welcome to the empowEAR Audiology podcast
[00:02:17] Sara:
[00:02:18] Thanks for having me. I'm excited to be here. Well, I
[00:02:22] Carrie: thought we would just add, maybe you start out with just, could you share a little bit about your current role at Colorado children's hospital?
[00:02:32] Sara: Yeah. So I'm, I'm a speech pathologist and I work on our deaf and hard of hearing team. So I work almost exclusively with deaf and hard of hearing kids.
[00:02:42] And that's kind of been my area of specialization since I started. So I, don't kind of a day to day. Look for me right now is just lots of individual therapy sessions. In the past we've done a lot of groups and that's kind of had to change with COVID of course. But all ages of kids, it tends to be primarily probably under five year olds.
[00:03:08] I have quite a few, two olds that I work with right now, so that keeps things spicy and fun. And yeah, I work on a great team. I get to work with our audiologists really closely. I'm on our cochlear implant team. But I work with kids of all types of hearing levels and devices. I work with ENT is we're a full therapy center as well.
[00:03:27] So we have occupational and physical therapists. So I've had some great opportunities to do some co-treat for kids who benefit from those kinds of therapies as well. So really part of a big multidisciplinary team, which is.
[00:03:43] Carrie: Yeah, that sounds amazing to have all of those different professionals working together to help all of the children that you have the opportunity to see on a daily basis.
[00:03:53] I'm really excited to have you. We're going to get back to some work stuff later on, but I'm excited to have you, because I have not had a speech language pathologist on my podcast who also has a hearing loss. So. Welcome be the first person that I have, and that, that fits that mold, I guess. But would you like to share a little bit about your childhood journey
[00:04:18] Carrie: and how you found out about your hearing and hearing loss and a little bit about that?
[00:04:24] Sara: Yeah, definitely. Before I jumped into that, though, it was just interesting that you mentioned that being hard of hearing SLP, because I feel like there's some of us, but not many, and I'm just barely starting to meet maybe one or two others that are also a hard of hearing SLP. So I think we're out there, but it's not a connected group.
[00:04:43] So it's kind of nice to start seeing some of those connections and meeting some more people in this area with some similar experiences to me, But yeah, in terms of my background and story I was first I identified when I was, I believe, six years old. My mom actually has saved the paperwork she got from school when I did not pass the hearing screening they did in kindergarten, first grade.
[00:05:10] And so that was the first indication that I had anything different with my hearing. And so my parents took me into the audiologist. And they, my dad was in the military, so we saw audiologists on the military base. And actually that was the only type of audiologist I saw as a child was through the military bases.
[00:05:31] And I was identified with a mild hearing loss. And I have kind of talked to my parents since then. And my mom has said, She was a little bit surprised, but then things made sense to her after she knew. And she said, yeah, you're just a little spacey sometimes kind of off in your own world. And you know, I'd had to really work at getting your attention if you were doing something.
[00:05:54] And she's like kinda made sense. We found out that there was some hearing loss involved. And at that time, the only recommendations they were given were to have me sit in the front of the classroom and just check in regularly with the audiologist. There wasn't any mention of doing hearing aids or getting involved with any sort of intervention or therapy services.
[00:06:18] My speech and language had actually developed without any sort of difficulties. So my parents didn't have concerns there. Although I was super shy in school actually all growing up and I feel like I still can be sometimes. But there was some comments that like, I didn't speak in preschool and.
[00:06:38] wouldn't raise my hand when my name was called for roll call. And so I think that, you know, that was prior to my parents knowing about my hearing and they think they kind of just chalked it up to me being pretty shy. And I wonder how much of my hearing difference kind of interplayed with how I was especially early on.
[00:06:57] But I think as a result of how things were presented to my parents, they kind of just figured it was not really a big deal. And so, as a result, I kind of just learned to cover up any hearing challenges I was having. So it wasn't really something that we ever talked about other than just going into see the audiologist every year.
[00:07:20] And they kind of be like, okay, things look okay. She's doing good in school. Yes. Okay. We'll see you again next year. And so. I don't know that I was consciously aware that I was doing that, but I kind of learned like, oh, you're just like everybody else. And so if I wasn't hearing things, I just kind of either ignored it or pretended that I knew what was going on.
[00:07:40] And just kind of learned to pass as somebody who was typically hearing. And you know, I don't feel like that was an intentional thing that happened on my parents' part. It's just, they really didn't know any different to. kind of talk me through strategies or even ask like, oh, have you ever had difficulty hearing in certain situations?
[00:08:01] Just kind of played out that way. And my hearing loss has been slowly progressive, so it's certainly changed since I was first identified and hearing aids were first mentioned when I was in high school. And at that point I was like umm no, thank you. I'm doing just fine.
[00:08:24] So I actually ended up not trying my first pair of hearing aids until college. And that kind of actually came about tied in with some changes in my major. Cause I was really into music. I played the clarinet in high school and was planning to major in music education. And my plan initially was to be a music teacher.
[00:08:48] And so I had been in several music classes and was taking music theory. And the music theory class I was in was a two-part grade. One part was written testing, and then the other part was ear training. So you can probably guess where this story is going. Although at the time I made no connection whatsoever with my hearing, but I was failing ear training miserably.
[00:09:12] And then doing just fine on the written portion. But my professor had kind of said, well, you're not going to pass the class. So this is the drop deadline, if you want to drop. So that way you're not, you know, having this impact your overall GPA and was like, I was just crushed. I was like, I don't know why I can't do this.
[00:09:30] And I ended up switching my major right around that time to communication disorders. Cause I'd been taking a general education class and was like Oh, audiology. I know all about this actually I've been going since I was a kid. So it was just like this weird random, like kind of things happened around the same time and ended up switching my major over and.
[00:09:55] I still wonder who this student audiologist was. I can't recall, but we had to do some hearing tests on each other as part of a class that I was in just to kind of get some experience, you know, running the audiometer what not. And I didn't think to tell this other student that I had a hearing loss and I think there's part of me that was probably embarrassed to bring it up.
[00:10:17] Cause I was so used to covering it up and like, I'm fine. I hear just fine. It's no big deal. But this poor student doing this hearing test and probably panicking or wondering if she's doing something wrong afterwards, she's kind of like so did you know that? And I'm like, oh, oh yeah, yeah. That's, that's the thing I've had that since I was a kid.
[00:10:39] And then of course, this gets turned into a professor with a like, oh, could we, we need to speak about this hearing loss that you have. And so things kind of unfolded from there. And realizing that like, you know, I had some pretty surprised reactions from my professors of like, you mean you've never worn hearing aids.
[00:10:57] How have you, how have you done this? Cause I had a pretty significant cookie bite hearing loss at that time. And so, you know, they, I started with first pair of hearing aids at that point. But I really did not like them. So, you know, I really only wore them for school and like when I felt like I had to and it honestly, probably wasn't until, probably right around the time that I moved back here to Colorado five years ago that I really was like, I have got to figure out this hearing aid thing after going back and forth for years on like wearing them a little bit and then not and feel free to stop me if you want to interject anything.
Carrie: No you are good
[00:11:46] But I was, I would say like for me, the, I, it was so deeply ingrained that I was just fine and passing and like not having any issues with my hearing, that it was pretty hard for me to kind of admit that. I really did need to have some help with hearing. And I was working really hard at looking like I was hearing just fine.
[00:12:08] And I had another pretty significant drop in hearing right around the time. I think that I moved from Omaha to Colorado and it took me a little while to put my finger on it. Cause I think I was starting a new job and had just moved. And so I was like, there's a lot of different things happening.
[00:12:25] But it's kind of like with one of my colleagues, like, so do you think you could maybe put me in the booth real quick and check? One of the great benefits of working in this profession is that all of my audiologists are my coworkers and like they're real audiologists, but I've not had like it's years since.
[00:12:44] made an appointment and gone to see somebody. I just, you know, we'll grab somebody and say like, Hey, I think I need a tweak here. So they, you know, we, we did a little check in kind of confirmed my hearing at this point. I have kind of borderline borderline normal pitches, low pitches sloping to just about a severe in the mid to high frequencies now.
[00:13:05] So you know, I really, especially being a speech therapist. My job is very requires a lot of very close listening for kids. And, you know, part of me thinks too, that may be why there. It's not as common to find SLP’s with hearing loss, because there are certain aspects of my job that require me to really focus and really be able to distinguish speech sounds.
[00:13:33] So I got upgraded, nice pair of hearing aids and was like,
[00:13:40] this is what I've been needing to what I've worn.
[00:13:42] Carrie: Yeah. Wow. Just think back a little bit about going through, you know, your elementary and high school years too. I think now with a lot of research and knowledge, we know that the impact of mild is not mild. Right. I hate that term because I know that it kind of gives everybody this misconception that it's really not that bad.
[00:14:09] And so some of the things you brought up like being shy or, you know, not responding to your name and even, you know, you said like you're paying them. They kind of saying, like, we just went to the audiologist and got checked up a year and that’s that right. And kind of moved on. When you think about it now, what are some of the biggest challenges?
[00:14:34] Like, did you feel like you have challenges socially too? I mean, I know you said you were shy, but with friends and things like that or something that really kind of stood out for you before you started wearing hearing aids a lot.
[00:14:47] Sara: Yeah, I think the thing that stands out to me most looking back is probably the social connections and experiences.
[00:14:55] Because academically and language and speech wise, I didn't really seem to have a lot of difficulties there. Although kind of knowing what I know now, even just professionally, I can see that I probably put a lot more effort into school in terms of listening effort. Then I was realizing. But I think especially like group situations have always been challenging for me in terms of hearing with background noise and multiple talkers.
[00:15:23] I have a few pretty distinct memories of some rather unfortunate misearings and then the, you know, awkward social encounters that happen after that. And I had had. A friend in middle school. And I had thought she had said that her dad had died and you know, of course like, oh my gosh, this is devastating.
[00:15:45] I wrote a card for her about how, sorry I was about her dad passing. And it turns out it was her dog and well, I mean, it's still sad, but it was like, so embarrassing as a middle schooler to like you know, then give somebody this card about how, sorry I am, that your dad passed away when it was her dog. And like, just, you know, I mean, like it's funny to look back, but I'm like, oh, my middle school self was really crushed when that happened.
[00:16:10] So embarrassed. So some things like that stick out in my mind in terms of you know, I often wonder what would have been different had I had some different supports and maybe, you know, had hearing aids or had a professional who could help coach my parents on like teaching me self-advocacy cause that's been really a big learning curve for me as an adult to be able to say like, oh, you know what, I'm actually having difficulty in this situation.
[00:16:40] and here's what I need in order to be successful is still a challenge for me to do.
[00:16:46] Carrie: Yeah. Well, I, I'm glad you're talking about it and being reflective about it because I think there's a lot of still families and teachers and professionals out there that hear mild or minimal or unilateral and like you said you got through.
[00:17:05] Okay. Right. I mean, you can kind of fake your way through and you did okay. Academically, but some of the social pieces and mishearings and things like that, that can really impact your probably self-esteem. And like you said, advocacy and not knowing what to, what to say or how to stand up for yourself.
[00:17:25] Sara: Right. And, you know, I really did off and on, especially when I first got my hearing aids was pretty, I felt pretty embarrassed about it and you know, we try to kind of keep my hair over my ears. And there's still a little bit now that I have to kind of fight against, depending on the day is like, it's okay.
[00:17:44] If people know that I am hard of hearing and you know, trying to be a good role model for the kids that I work with, two of, you know, pulling my hair up some days and like no big deal if people know that I have hearing aids and. You know, I think that's something, when you start early with kids to teach, you know, that you can be proud of who you are.
[00:18:04] Then you're not having to sort through that as, as an adult, too.
[00:18:08] Carrie: Yeah. Yeah. That agency and being okay with yourself, it takes a lot, but like you said, too, you have setbacks and then you move forward and that is part of life too. And then you said, what about five years ago you started consistently kind of wearing hearing aids.
[00:18:26] How has the, how has that helped? How have you noticed changes that way?
[00:18:33] Sara: Well, I think it's jarring to realize how much I wasn't hearing without them. And I had an experience. It was probably about a year ago where I needed to send these in for some repair work and I was going to be off work. So it was, you know, four or five days without them.
[00:18:52] And I was like, it's going to be fine. It's not that big of a deal. I'm not working, I'll just be hanging out, you know, with family, whatnot. But. I was so off kilter, like just to realize how much I like and depend on the sound that I have. And I didn't feel safe anywhere. I was like, people were scaring me left and right.
[00:19:10] I didn't know what was coming up behind me. Turn signals, went away for awhile, you know, so all kinds of things. And for me, it's not that I can't, I don't go from. hearing with my hearing aids to taking them out and hearing nothing. Like I'm still hearing actually quite a bit without them, but I lose a lot of clarity.
[00:19:33] I lose a lot of environmental sounds. Like I didn't realize that I hadn't heard birds that whole time until I put them back in and I was like, wait, I bet these birds didn't just reappear today. They've probably been here all week. So yeah, I think. Sometimes, I think what can be helpful for me to talk through some of my families with parents who have kids who have these kind of mid range, you know, they don't have severe to profound hearing losses.
[00:20:01] And it's hard for parents to wrap their minds around like what they hear and like I do without my hearing aids, but there's a lot that's missing. It's it's real muffly, muddled kind of sound without them. So I think that can be. A helpful thing to help describe sometimes. Cause it's, it's still even hard for my family to wrap their minds around.
[00:20:24] Like they're like, do you really have that hard time hearing? And I actually played a simulation of my hearing loss for my family. And it was like, their minds were totally blown. They're like, we actually had no idea. This was what you were experiencing.
[00:20:39] Carrie: And as a kid who hasn't heard before, they can't be like, oh, like the bird suddenly appeared when I put my hearing aids on.
[00:20:47] I mean, they don't have that knowledge or vocabulary to say that and think about all the little things that they're missing in their environment by not having that access all the time, too. Right. Yeah. Did you feel like your level of effort was a lot more when you didn't have your hearing aids too?
[00:21:10] Sara: I think so, especially, yeah, especially looking back although I would still say listening effort and listening fatigue is a pretty significant factor for me.
[00:21:19] And I'm not sure if part of that is. Just the type of job that I have that even with amplification and accommodations, I'm still having to be really on my toes for, especially for speech articulation, work with kids and unfortunately, timing kind of happened that, you know, I had a couple years of getting used to these hearing aids and then COVID happened and then like flipped all this stuff upside down there and added a whole host of new challenges to figure out you know, our audiologists are amazing.
[00:21:51] And the one that does my hearing new programming did some magic and helped me out majorly with masks and virtual things. And but it was really like, it was for all of us, like trying to figure things out right as it was happening. And a lot of challenges for a while before we could figure out what a good solution was going to be.
[00:22:13] Carrie: Yeah, for me, I know that was definitely a hard switch when all of a sudden you go to the grocery store and everybody has a mask on, and I felt so, I guess, anxious and didn't know, you know, what people were saying to me. And I just kind of went through an avoidance process
[00:22:32] Sara: to, yeah. And I think for me, that was a largely kind of a catalyst for.
[00:22:39] Kind of getting me to figure out my identity and who am I? Because I think even though I had already started wearing hearing aids prior to the start of COVID it was really the first time that I felt hard of hearing like really noticed it because I still could convince myself like, oh, I'm just going to wear these hearing aids, but I'm fine.
[00:22:57] Without them, it was like this little back thing in the back of my mind, like it's, it's, it's still. A convenience thing. I don't really need them. And with COVID it was like, oh no, you're hard of hearing you can't pretend. You're not. In fact this will be a little humorous story for you. I had gone to get my oil change done on my car and I would say it was probably, I don't know, three or four months in like, so still a lot of things were pretty shut down and it was one of those quick oil change places.
[00:23:28] And in the past you would drive your car in and then they'd have you get out and go into their little waiting area. But they're like, oh no, everybody stays in their car now. And so I'm sitting in my car with the window, rolled down and it's, you know, one of those garages. So the acoustics are terrible and there's a gentleman standing at the front of my car and he's wearing a mask and he's speaking to me and he's clearly asked me to do something.
[00:23:51] And I'm like, not even a single word that I could try to fill in the blanks. Like usually I'm like, okay, I got it. Half of it and I can sort it out, but I'm like, there's just nothing. And like, my anxiety is just like going like way up through the roof at this point. Cause he just keeps mumble, mumble, mumble, and then looking at me like, I don't know what's happening.
[00:24:11] And so finally somebody came up to my door and. You need to pop your hood. And I'm like, oh my gosh. And of course at that point I was so flustered. I couldn't figure out how to pop my hood. So they had to do it for me, but it's just like, you know, those situations where you can’t the context was unfamiliar. So I couldn't predict what he was going to ask me to do.
[00:24:33] And it was just like, okay. Yep. That was interesting. So but yeah, figuring out that identity piece has been important, but a challenging process, I would say for sure.
[00:24:49] Carrie: And how do you feel like you kind of sorted through the process? I know you said, you know, COVID kind of, jump-started some of this identity, but do you have any tips of how to kind of go through that and get to the point of, I don't want to say acceptance, but just kind of more certain of who you are and okay.
[00:25:09] With who you are.
[00:25:10] Sara: Yeah, well, I think it's still an evolving process. Cause I would say it's not a hundred percent there some days. But some things that have been really helpful for me is having some connections with some other people who are part of hearing and wear amplification and that was something I didn't really have until I've been, you know, mostly an adult which is
[00:25:35] interesting because I've worked with deaf, hard of hearing kids for most of my career. But it actually really wasn't until I was actually at Children's here in Colorado that I met another audiologist, my same age, she wears hearing aids and it was like, oh, you're going to be my best friend. And so just having some other people who can understand some of the challenges and
[00:25:59] difficulties that kind of can come along with being deaf hard of hearing, as well as the, somebody to laugh with me about not knowing to pop the hood of my car and just be like, yeah, I get to just turn you off when I come home. And so just to understand some of the unique things that we experience so I think having some community has been really, really helpful.
[00:26:24] And for me too I have been working with a counselor therapist for a couple of years now and having a place where there's some intentional processing that I'm able to do of some of these things has been really, really beneficial, too. So making some space to really be intentional about thinking through some of the patterns that I've sort of inherently developed around my hearing, which for me is to.
[00:26:50] To fake it to pretend like I'm just hearing everything and being more aware of when those things are happening and kind of working to go like, okay, like it's okay if I speak up and say, I didn't hear what you said, would you say that again for me? Or like for me, when I meet a new parent who's coming in for a therapy or evaluation appointment to ask the parent to switch out and wear a clear mask for me hurdle for me for a little while and still can be aware.
[00:27:19] Cause it's like right. When I first meet you, I need to go ahead and have this conversation and tell you, okay. I'm hard of hearing. I wear hearing aids. I really benefit from being able to see her lips. Would you mind switching your mask out while we're here today? And you know, it's easy to just say that right now, but it honestly still depends on the day whether I feel like I have the confidence to do that.
[00:27:38] Or I just kind of go well, okay for whatever reason, I'm not up for saying that today. So we're just going to do it this ws. So it's an evolving process, still learning for sure.
[00:27:50] Carrie: Now I am so glad you shared all that though, because when you going through it, there's so many things as someone else that is also hard of hearing.
[00:28:02] Feel that like having those connections was so critical for me too. And like you said, I didn't meet anyone else until I was closer to college age. That was like me. And so it was hard to navigate all of that and to not have anybody that understood you truly the different things. And I love your part about the humor too.
[00:28:27] And you know, like being able to laugh about the fact that, Hey, they said pop your head like 20 times, but until somebody comes over and says it, but I think it's funny, but we could, I would have done the same thing. So I can laugh with you and understand like, okay, this was totally embarrassing, but at the same time, we can laugh through it.
[00:28:49] Sara: Great.
[00:28:51] Carrie: I've got through it. But I also like your point of like the counseling part and being intentional and figuring out, okay. You know, I can't fake it until I make it all the time, but how can I kind of work through these habits that I've had all my life and try to go in a different direction too.
[00:29:12] Sara: Right. Yeah. And that was also helpful for me in just kind of wrapping my mind around the listening fatigue piece. Because I am still do put a lot of pressure on myself to be able to function at a level where a typical hearing person would and to have some grace and knowing that like there are going to be certain situations are just gonna be harder for me.
[00:29:34] And that's okay. And you know, again, it's one of those, like, I can just say that and I don't always believe that's what I'm supposed to believe and kind of knowing that, like I had to make some pretty significant changes work-wise kind of through COVID and like I said, kind of learning to advocate for myself and speak up and say, you know, I am not going to be a good virtual speech therapist.
[00:30:02] Like me doing virtual speech therapy is really, really difficult because I can't hear an S sound over the computer accurately to help, correct for speech articulation. And so that was difficult for me to have some of those conversations because it felt like it was, I was kind of judging myself professionally.
[00:30:27] Like I, maybe I'm not going to a good speech therapist because I can't hear all this stuff that I'm supposed to be able to hear. And my other colleagues can make this jump over and do teletherapy during that initial shutdown. And I did do that because that was the only choice that we had. But pretty quickly, you know, we had to start having some conversations about like, what is this going to look like for me in order to continue to be able to do my job and that that's not a reflection on my skills as a therapist, or even on who I am as a person.
[00:30:56] It's just a fact of what. What ability I have and the access that I have.
[00:31:04] Carrie: So, what are some of the accommodations and support that you currently use in your job? Whether it's virtual which we're kind of back to, but I know with the mask and you're probably still in a facility that uses mask right now. Yep.
[00:31:21] Sara: We sure are. Yeah, you have healthcare is all the way I feel like, which you know, is important from infection standpoint. So certainly not a statement to whether we should or shouldn't wear them. But yeah, some of my accommodations I have now access to asking parents to use clear masks when they come in.
[00:31:42] You know, my little ones don't wear a mask at all. If I work with older kids, you know, they'll wear a clear mask with me. I use my remote microphone, almost every therapy session, whether it's virtual or in-person. Because I just need that extra boost in volume for especially those high-frequency sounds.
[00:32:04] which of course for kids who are working on speech articulation, seems like it's always going to be S TH F like all those ones that are going to be super hard for me to hear. So I have that, I have the ability to be pretty selective about when I do virtual therapy. So it's not. I don't see any patient that's purely virtual therapy.
[00:32:27] So most all my patients come in person with the occasional switch to a virtual session. If we have bad weather or like a family member's ill and can't bring them in or something like that. But I I've come to realize, like I need that in-person work and then I can fill in with an occasional session over the computer, but I've got to do the bulk of it.
[00:32:47] Face-to-face and then. Probably this past year or so, I've actually started using a sign language interpreter for some of my therapy sessions. And this was kind of an interesting process for me to go about deciding if I wanted to do this or not. Because I've used and learn sign language for professionally, for working with kids.
[00:33:11] And I'm not fully fluent in ASL by any means I'm much more of a signed English signer. But. I kind of started having some conversations in my counseling session about this. And we kind of talked about, you know, I've, I know sign language and I use it for other kids. Would there be any benefit in considering using it for me?
[00:33:33] And cause I have noticed if there are sign language interpreters around, I do tend to check in with them. And. What I ended up deciding to ask for and what I use now is that I work with a couple of Spanish speaking families. And so when they come in for their therapy session, I have a Spanish interpreter.
[00:33:54] That's there for me to interpret between myself and the family. And I was really struggling with understanding the Spanish interpreter. They're wearing a mask and they have accented speech, which is. I mean, those are some of my biggest challenges and, you know, I wish I could understand accented speech better, and it's just something that's been difficult for me.
[00:34:16] And. So we're thinking through, and I'm like, you know, I can have the Spanish interpreter where a clear mask. But what I was noticing is that I was so focused on trying to understand what the Spanish interpreter was saying. That I really couldn't do therapy with the child, and I'm trying to keep the child quiet so I can listen to this spanosj interpreter.
[00:34:35] And I'm like, this is a kid who was like, speech therapy is not supposed to be quiet. I need you to feel like you can talk to me and we're, we're supposed to play. And like the flow was so clunky. And so we ended up, I ended up asking is that, that for that as an accommodation. And so the set up now works really nicely where I have an ASL interpreter that comes in, she sits on the floor, across the room for me.
[00:35:01] So she stays in my sight sight all, if I'm moving with the kid and then the Spanish interpreter actually sits behind me in the corner and it took a little bit. Adjustment for me to realize, like, I don't need to turn around and look at her. Cause I that's not, it she's not important anymore. I actually just need to look at the sign language interpreter.
[00:35:20] Cause she's just interpreting whatever the Spanish interpreter is relaying to me from the parent. So it took a little bit of figuring out and I have the same ASL interpreter for these two families that comes in every week with me. So she kind of knows the flow of what I need. And it's been really helpful.
[00:35:41] But again, that was a bit of a mental process for myself to be cause at first I was like, oh, we need a sign language on her part. That's for other people, that's not for me. And so there was still that kind of process of like I don't need to be embarrassed or feel like it's something that is saying that I'm, there's some weakness here.
[00:36:02] Like it's just what I need to be able to access and actually be able to do my job well. Rather than being so overly focused on what I'm not hearing in those sessions. Yeah.
[00:36:15] Carrie: And that's such a great point because I feel like every situation that we're in as someone that is deaf or hard of hearing it changes, right?
[00:36:24] There's so many differences. And to know what all of your options are, and to be able to mix and match depending on what your situation is, is really important. To be able to do and to be creative because when you got into the pandemic, nobody knew what to do, but by collaborating with other people and being creative and thinking, thinking outside of the box we're able to help ourselves be better advocates and get the access that is needed.
[00:36:58] Sara: Yep. And having the closed captions too is a big one for me as well. Cause of course now like staff meetings and everything is all done virtually. So yeah, that was, there's a lot of, I think, a lot more awareness. Just in general I think because you know, zoom didn't have captions automatically initially.
[00:37:19] Our virtual platform that our medical record system runs through still doesn't have captions. So there's just been some things of realizing like, yeah, there's a pretty broad need for access now that everybody's working virtually. And you know, I've even had parents who have typical hearing who've said like, wow, I didn't realize that it gets a lot harder to hear when people are wearing masks then like just kind of even help them realize like kind of maybe what their kid might be experiencing too.
[00:37:53] Carrie: Which is a great segue because I wanted to ask you a little bit kind of going back to you you speech language pathology role, or my first question is how did you decide? I mean, I know you kind of went from music, the speech, but did your hearing loss have anything to do with your major? And then my second part of the question is how do you feel.
[00:38:20] that your choice of major and working with kids and families who are deaf and hard of hearing has been helpful as a speech language pathologist with hearing loss
[00:38:32] Sara: So, yes, my hearing definitely influenced my career choice because as I mentioned, you know, kind of serendipitous moment that I was taking a course in communication disorders and realized, oh, this audiology thing I know about.
[00:38:46] And I had actually set out to be an audiologist initially when I was in undergrad and was actually wait-listed for the audiology grad program and didn't get in. And so I took a couple years off and took some time to, I worked as a speech language pathology assistant in a school district, worked at a hearing aid office for a little bit.
[00:39:09] And kind of found that the speech pathology side felt like it was a little bit of a better fit for me. I liked the creativity of therapy. I liked the play. I liked the consistent getting to see kids weekly. And I I'm really not a math person. And there was more math involved in audiology than I realized.
[00:39:32] I was like, maybe I should go with a place that I just really enjoyed. The creativity and that kind of thing. So ended up going then for my master's in speech pathology and because of my experience with hearing loss. I kind of felt like from the get go that I wanted to focus on this population of working with deaf and hard of hearing kids.
[00:39:54] And so that's what led me to actually pursuing doing my clinical fellowship year at Boys Town. I was like, well, this is just an amazing place. I really love to go learn from, from these wonderful people. And you know, through some amazing connections was able to, you know, get an interview and was hired and was like mind blown that I got to go and work out there.
[00:40:14] And ended up staying out there for eight years because it was such an incredible experience. And you know, I think part of me went into this field too, because I wanted to learn more about myself. Cause I was like, there's a lot here that I didn't know about in terms of hearing loss and impacts on speech and language and social and all this stuff.
[00:40:34] So there's been a lot that I think I've learned about myself through this career too. And then I think there's just, used it to being able to have some connections with the kids on my caseload. And I don't, they don't come about intentionally a lot of the times. You know, just this week, my hearing aid battery started to chime right in the middle of a therapy session.
[00:41:00] I mean, that says all the time. So I don't have fancy rechargeables right now, you know, I'm like, oops, I need to change my batteries and my hearing aid. And then the kids will be like, oh yeah, you got one of those two. I'm like, I do. I'm like my are purple will color yours. And you know, so even just some of those little moments of connection, I think with kids.
[00:41:19] Yeah. You know, can really stand out for them, for their families. So I think that's a huge benefit to being in this career too,
[00:41:28] Carrie: And do you feel like the parents, view you as almost like a deaf or hard of hearing role model for them, do they ask you a lot of questions?
[00:41:39] Sara: Some do some don't. So but yeah, I feel like some of them have, and I forgot to put this in my bio, but we actually have a deaf hard of hearing mentor role model program in Colorado that just started in the last year through EHDI.
[00:41:55] That I'm a part of. So I've been able to go to kind of some of our community events as a role model and meet with a couple of families under that program, it's called the ESENT program. So it's just for birth to three families since it's funded through EHDI, but that's been a cool experience for me as well, too.
[00:42:14] Cause it's kind of still takes a mind shift for me to think of myself as a role model for other kids with hearing loss. Cause I'm like, Hmm, I don't have this figured out very well. I don't know if I shouldn't be modeling. But I think that's exactly the kind of thing that is helpful. Sometimes parents to see, like, to know the reality and the truth there that like, you know, you don't always have to have this sorted out and it is a process of figuring that out.
[00:42:41] Carrie: Yeah, I think being authentic about it and realizing that everybody's journey is a little bit different and how you get there is going to be a little bit different and families do appreciate hearing other people's stories and journeys along the way, too. So is there anything that I didn't ask you today that you wanted to share with our listeners?
[00:43:08] Sara: The only thing that's coming to mind and this was something that we shared a colleague and I did a presentation for EHDI conference just a couple months ago. That I think is just a nice analogy for what it feels like for me sometimes with being hard of hearing as just kind of being a duck paddling under the water, like, you know, they look like they're sitting so happily on the surface and then you look underneath them.
[00:43:29] Their little feet are just going like crazy. And so it seems like an apt metaphor sometimes for, especially for my journey in terms of like, wanting to feel like I've got it all sorted out and put together but you know what it looks like under the surfaces often a lot different than what you see right at the beginning with at face value.
[00:43:49] And I think that can be fitting for even where families are in their journeys too sometimes. Is that, you know, even in when they're years down the road and it's like, okay, we've got it all together at this point, but maybe not, you know, looking under the surface and asking some more questions about how are things really going.
[00:44:07] And sometimes you can get some different answers, especially if there's that connection with a provider and a family to.
[00:44:16] Carrie: Yeah and what you shared about the different posts of your journey and how they've changed over the years, that's going to happen for families too. They're going to go through different transitions and the little feet might be paddling a little faster during some of these transitions and to be able to check back in with families and ask those important questions again, because different things will come up, but along the journey to.
[00:44:42] Sara: Yup. Yup. And I had mentioned having some community with some good friends and we occasionally find some really funny duck pictures to send. We have a little text chain that goes back and forth and there's been days where we get, I get, we get pictures of like a duck who's like flipped upside down in the water.
[00:44:59] I'm like, yeah, I get that. I feel that sometimes, especially in the middle of COVID I'm like, Ugh, The duck is not swimming anymore
[00:45:11] Carrie: We have a lame duck today. Huh?
[00:45:14] Sara: Yeah. And knowing that there's that brace too for like, I think about for like hearing aid use with families and how we emphasize, like, as much as you can, when your kids are, are awake, having their hearing needs in. But I also know that there have been days and. Frequently that I come home after a heavy day of therapy.
[00:45:33] And you know, it's six 30, the hearing aids are going out. As soon as I walk in the door.
[00:45:43] Carrie: Yes. A benefit to be able to just kinda check out, but a little
[00:45:48] Sara: while. Yep. And knowing kids need that sometimes, like we know that there's still language that happens at the end of the day, but sometimes we just know that you know, our brains are just at their capacity and trying to push for more isn't necessarily helpful.
[00:46:04] And that's a good time to say like, okay, like we can take a break and how else can we communicate and make sure we're connecting during this time. But.
[00:46:14] Carrie: No, that is all really good. Good advice. Well, Sarah I just want to say thank you so much for being a guest on the empowEAR audiology podcast. I think your story, I love your.
[00:46:28] Getting to acceptance with some of for you and your advice about the connections and being able to have different people in your shoes and using humor and giving yourself grace are so powerful advice for, for families. For professionals who may not be in our shoes that need to maybe communicate with their families and others who are experiencing the, hearing the challenges along the way and your
[00:47:00] Advice about being flexible with different accommodation, and creative I think is important for individuals and families and professionals to know as well. So I want to thank you for sharing all of your experiences and your knowledge and with all of us today. And if people would want to get a hold of you, do you have a way that or any kind of social links that I might be able to link to the show notes to.
[00:47:28] Sara: Yeah, I'll have you put my email in there. I'm not super social media active, so you probably won't get anything by finding me on social media, unfortunately. But yeah, my work email's great. I'll have you put it in there, but it's Sarah S a R a dot Robinson, R O B I N S O N. At children's colorado.org.
[00:47:51] And welcome to people are welcome to email any questions or anything that's just great. I've enjoyed kind of just expanding my network a little bit and getting to know more people. So I'm happy to, to have people reach out and yeah. Thank you so much for having me. This is a little nervous.
[00:48:08] I've never done this before, but it was fun.
[00:48:11] Carrie: Well, thank you again for being a part of this. And I just want to thank all of our listeners are listening to the empowEAR Audiology podcast. Be sure to share it with others and wherever you listen, and come back to the next episode.
[00:48:27] Announcer: This has been a production of the 3C Digital Media Network.

Episode 40: empowEAR Audiology - Matt Hay

[00:00:00] Announcer: Welcome to episode 40 of empowEAR Audiology with Dr. Carrie Spangler.
[00:00:15] Carrie: Welcome to the empowEAR Audiology podcast, which is part of the 3C Digital Media Network. My name is Dr. Carrie Spangler and I am your host. I am a passionate audiologist with a lifelong journey of living with hearing challenges and this vibrant hearing world. This podcast is for professionals, parents, individuals, with your own challenges and those who want to be inspired.
[00:00:44] Thank you for listening, and I hope you will subscribe, invite others to listen and leave me a positive review. I also wanted to invite all of you to visit and engage in the conversation on the empowEAR Audiology Facebook group. Transcripts for each episode can be found at www dot three, the number three, C digital media network dot com under the empowEAR podcast tab.
[00:01:18] Now let's get started with today's episode. Welcome to the empowEAR Audiology podcast. I'm really excited today to introduce my guest, Matt Hay. And I'm going to give a little background about Matt for all of you today. And then we'll get into, I have a, some of the question and answer of everything that he has to say.
[00:01:41] And I'm just going to read his bio up on his website. Matt was a sophomore in college when he finds out that he is going to lose his hearing because through the early years of his diagnosis and denial, but as his hearing aids get bigger and bigger, Matt realizes he wants to capture the sound that is slipping away.
[00:02:03] His girlfriend voice, the click of her heels, and especially the songs of the invincible youth. Matt starts listening to music with a new appreciation, truly studying it he curates a soundtrack for the rest of it. Between each song, there is a coming of age story about freedom, tragedy and falling in love.
[00:02:27] When maps hearing eventually fades to nothing, the silent soundtrack in his head takes on a role he never imagined the audience for his story of overcoming the physical, mental, and emotional challenges always changes, but his authentic delivery never dies. He shares his message and hopes Someone from ever, ever feeling as last helpless and alone, as he did the day he woke up death, the day sound became only a memory.
[00:02:59] So with that introduction, I know we're going to have an amazing conversation today that is going to be uplifting and really about overcoming obstacles. So Matt welcome.
[00:03:11] Matt: Well, thank you very much. I, I hear you say all of that just now as an intro, which was, I know where you got that, but I think I'm also the guy
[00:03:20] There's dishwasher broke this morning and was annoyed that I have to hand wash utensils. So you know, a lot of different facets at play there.
[00:03:29] Carrie: Yeah. Well, thank you for being a part of this. I know. I'm excited cause I felt like just in the past, maybe three or four months, I pathjs keep intersecting, whether it's through social media or a couple of other networking opportunities and I'm excited to actually get to meet you virtually in person and and get to know you a little bit better.
[00:03:53] So can you just start out a little bit of just reviewing a little bit of your story for an audience today?
[00:04:01] Matt: Sure. And I I'm particularly grateful to be here because like you said, you and I have had some parallel paths. But you come at this from the perspective of the perspective of a doctor of audiology.
[00:04:15] And I came from it from the perspective of a guy that just failed a lot, trying to hear it better. And wish I had met you and your colleagues you know, years sooner. So it's, it's pretty surreal and, and humbling for me to be a part of a conversation with so many professionals that do this. So I I'm 45 now and I was diagnosed.
[00:04:35] I started losing my hearing my sophomore year of college at Indiana University, which would have been 97, 1997. And when you're 17, I guess, 18, 19 years old, your sophomore year of college, not a whole lot of people are losing their hearing. So it was kind of a weird experience. I didn't know exactly where to go or what to do.
[00:04:53] . And I'm very, very fortunate that when my parents finally talked to me and to seeing a hearing care professional I saw someone who made no effort to sell me a hearing aid. They made an effort to treat me and treat whole me. And they said, based on the outcome of what we're saying, we're not sure we can help you.
[00:05:16] So before we make any assumptions, we think you need to see an ENT. And so I saw an ENT who got me set up for an MRI and was diagnosed with bilateral acoustic neuromas which is fancy talk for, I had two marble size benign tumors on my hearing nerves. And I don't think it wasn't until recently that I realized how lucky I was to have a hearing care professional will say, I think you need more help because they could have easily fit me for an in the canal aid.
[00:05:48] Ah, I've just been hearing care. I can legit save lives. So based on the results of that, that MRI, I was diagnosed with neurofibromatosis specifically NF2 to which at first you've probably never heard of outside of maybe one day, one chapter of a book in grad school. But neurofibromatosis is a disorder that causes nerves to grow our tumors, to grow on any nerve in your body.
[00:06:17] They grow on the sheath that surrounds your nerve, which is like if you've ever plugged in a cable and it feels like rubber or the cable inside is actually electrical, just like a nerve. And it's covered with a rubber coating. That's just like your nerves are the same way. And so I have a tumor that could grow anywhere on any of those nerves.
[00:06:36] And I have several dozen, but the two most distinguishable were on my hearing or. And over the next 10 years just like my doctor said would probably happen. I ended up losing my hearing because of those nerves, those tumors.
[00:06:51] Carrie: So after you found out when you were 18 or 19 and you started going through the process with your ENT, at what point did it got to the point where they needed to do surgery and how did that process go for you?
[00:07:08] Matt: But I think, and I didn't realize this at the time either, but when you get, whether it's hearing loss or vision or any sort of physical ailment that you, once you kind of realize, Hey, this is going to be around, this is something I have to deal with. There's a grieving process. And I was oblivious to that.
[00:07:28] And I didn't know I was going through it at the time, but you know, you just, same thing. You go through this denial, you go through a negotiation, you go through an acceptance And I, I spent years in the denial of, Hey, this is going to happen to me, even though my hearing scores were basically saying that this is not whether or not it's going to happen, it's happening right now.
[00:07:48] And so my hearing aids got bigger and bigger and we eventually got to a point where we said, okay, we know I'm going to lose my hearing because my nerves are no longer going to work, which is, you know, I couldn't get a hearing aid to help with that. You can't even get a cochlear implant to help with that.
[00:08:05] And I said, we have, we're going to have to remove the larger of those tumors. And there's a relatively at the time had just been approved by the FDA, a device called an auditory brainstem implant. That, I mean, literally it looks like a CI, but it bypasses all of your natural hearing and they sewed 12 electrodes directly onto your brainstem.
[00:08:26] And some really smart people say, we think that's the part of your brain that processes sound and. So they implant that and it takes eight weeks for them to turn it back on and because they have to wait for it to heal. And you just hope that those are the 12 electrodes work. In the meantime, you know, brain surgery just by itself is no casual thing.
[00:08:49] And I woke up with facial paralysis and couldn't walk and had double vision. And so it was kind of like, all right, I was really worried about my hearing, but I have a whole lot of other stuff. Like I can't get out of bed and I can't move my legs. So you start to learn to take things one at a time. And as I worked on that, we kept waiting and hoping when they do turn that implant on that, it's going to sound okay.
[00:09:13] And fast-forward day, weeks later, they, they turn it on. And this is at the House Ear Institute in Los Angeles. And they said with an auditory brainstem implant, you're probably just going to hear life sounds, which is like oven timers or police. But when you now have been deaf for a few months oven timers and police sirens sounds like Beethoven, right?
[00:09:35] I mean, I would love to hear it often times. So they turned it on and it did exactly what they said. It was just all buzzing. And I could hear shoes on the floor, but I couldn't distinguish that between somebody saying hello. And so though I was so grateful that it worked and that lasted for about an hour and then I wanted to sound better.
[00:09:56] So I very quickly moved from, oh, I'm so glad this worked too. It's not good enough. It's not good enough.
[00:10:04] Carrie: Yeah. So about how long did it take for you? I guess, can we go back a little bit about the after the surgery? You said you had the double vision, you had, you weren't able to walk you dizzy, all of those different components.
[00:10:21] What did you have to do to get yourself walking again and being able to see again, I mean, I'm sure at this point, hearing was not even something that you were very concerned or you you're concerned, but life things were happening to you.
[00:10:37] Matt: It really did come down to priorities of what do I need to do to get through today.
[00:10:43] And your world goes from being, you know, this big, to this big, like what is you know, with the facial paralysis, the first thing I need to be able to do is swallow so I can eat. And then how do I blink so that my eye doesn't get red and irritable and damaged. And so it's kind of funny. Do you think I have this invasive brain surgery and the things that I'm working on right now are swallowing and blinking, which are certainly things.
[00:11:10] I took for granted before. And so you work on that and then you start thinking, all right, well, now that I can eat, I want to be able to move. And at first it was out of bed and into a wheelchair. And then after a few weeks of rehab, you can move your feet. And I said, okay, now I can be in a wheelchair and kind of get around on my own.
[00:11:33] But now I want to walk. So I moved from few weeks of a wheelchair, a few weeks into a walker, then a few weeks on a cane. And it just the important thing for me, and unfortunately I've always been very goal oriented, was to celebrate, identify like small measurable goals. And then celebrate those small measurable wins.
[00:11:55] So by that, I mean, moving to a walker was a huge deal. So, so what if I was at deaf 24 year old using a walker with little tennis balls and I was in a long-term care facility and I was the only one they were under 60. And you could focus on that part and say, well, this kind of stinks. Cause my friends are all at the bars in Chicago watching the Cubs game or whatever.
[00:12:18] And here I am on a walker. It was important for me to celebrate small wins and recognize that I moved from a wheelchair to a walker in two weeks. And we didn't know if I would ever be able to do that. Recognizing those successes are enough to say, okay, well now my goal is going to be to get from a walker to a cane.
[00:12:40] And then once I can do, that's how I'm going to fill my time and occupied my mental focus because eight weeks from now, I hope I'm going to have my hearing back. So I think a lesson I learned very quickly was measurable progress today. I took two steps with a walker, you know, the next day I took four and celebrating that.
[00:13:01] So that was enough to kind of carry me to a point that I was on a cane and very unsteady without a cane when they went to turn my implant on. And I think I had learned some good lessons through that process because instead of being very frustrated right out of the gate with the fact that things didn't sound as well as I hoped.
[00:13:20] And I think anybody that gets fitted for a hearing aid probably goes through the same thing of like things sound different, or I don't like the way, you know, whatever sounds versus what it used to being able to say, okay, well, this is what it sounds like today, and I'm going to work at it and I'm going to wear it and I'm going to practice with it.
[00:13:39] And then maybe not today, maybe not tomorrow, maybe not next week, but soon I'm going to get another test. And it's going to show that I have improved. And even if that's a little bit that's enough of a carrot on a stick to keep me moving forward and working harder
[00:13:56] Carrie: I mean, for me, for the cochlear implant, I remember someone telling me who had gotten a cochlear implant before say think of your activation day as your worst hearing day ever.
[00:14:06] Yeah.
[00:14:06] Matt: Yes expectation management is key. Yeah, it is. It is.
[00:14:12] Carrie: You have a lot of grit and determination for going through, and I love your analogy, like celebrating the small steps along the way, and having a, you know, those small goals. Who helped you with that mindset. Did you have people surrounding you that would like those people who kept cheering you on to that next step?
[00:14:39] Matt: So I'm very fortunate to have a mom and dad that backed me up in everything that I did growing up to, so I guess sort of. Set the table for that. Yeah. My dad taught wood shop in his mentality and everything was just work hard, work, hard, work hard. My mom taught kindergarten and her mentality was just be kind to be kind, be kind.
[00:15:01] That's a pretty good combination of work hard and be kind. I wasn't married at the time, but was dating my now wife of 19 years and having her there and her patience and understanding. But it's also easy when you have all of this happen to you with health stuff and it's okay to get self-involved because there is a little bit of like self preservation.
[00:15:26] So I think I learned the hard way of, well, I know I learned through a lot of failure. This is again, whether it's hearing loss or any other physical or emotional or mental thing you're trying to overcome is. If you're fortunate enough to be surrounded by people that are there to support you, give them a lot of patience because there's no, they're never going to be able to understand what you go through.
[00:15:51] And I remember being so frustrated and saying like, you just don't get it. You don't understand why this is hard, why it's exhausting, why it's lonely, why can be surrounded by this support and still feel totally on my own and alone. That's not their fault. So having patience and a little bit of grace with them and recognizing they're doing the best they can, and then doing your best to communicate and maybe what you're going through.
[00:16:21] And they're likely going to give you the same kind of patience and grace and say, all right, he's snapped at me about this. And all I'm trying to do is help get him into the door. And I remember coming home on a walker to my mom's. And she's got knickknack stuff, everywhere, kindergarten teachers, right.
[00:16:39] Woodent necklace and like little like decorative stuff everywhere. And I walked in and I tripped over the welcome rug that had some kind of like feather little saying. And then I turned to unhooked from the rug and I knocked over like a wooden cat's Meow village that she has on. When I turned to fix that my arm got caught on the coat rack that she had next to.
[00:17:01] No, I don't. I was just like, I felt like a Saturday night live skit and I'm only six feet into the house. But all she wanted to do was make me feel at home and welcome. And so I think some of that that determination, it was certainly challenged. But a lot of them came from the upbringing, but to just having patience with the people around you and.
[00:17:25] Doing your best to over communicate where you're coming from. There I know that I say all that as if it's that easy, because I'm still not very good at it. And I've been working on it for 45 years. But I feel like the times where it got really hard, if I stepped back and said, well, am I explaining to them whether it's my doctor or my girlfriend at the time, or my parents am I explaining to them why I'm so frustrated because sometimes, and here's an example of that is that I was in physical rehab and I had a therapist who just had me riding an exercise bike, and I thought there's so much I can't do.
[00:18:04] Why am I just sitting on a bike? And so once I explained that to her, she explained why I was doing that. And then the next day we mixed in some stuff was like a medicine ball. And I was happier because I felt like I was doing a thing. She was happier because she knew that she was challenging me and engaging me, which is what a good physical therapist to do.
[00:18:26] But it all came back to me, not communicating well enough. And I think when you improve that communication, you start to see some better outcomes and it's a lot easier to be gritty. And it's a lot easier to persevere when you see, okay, well this week I'm better than I was last week. Yeah,
[00:18:44] Carrie: no, those are all good things.
[00:18:45] And it is, it's hard for people who are not living with, you know, hearing challenges that hearing loss to understand the everyday challenges of communication. Yeah. And even you can't, they're not in your shoes. One question I have for you is I know. Auditory brainstem implant. So pretty rare. It's not as common as like a cochlear implant.
[00:19:12] Did you have anyone in your life that had gone through the, the auditory brainstem implant process that you were able to talk to reach out to?
[00:19:25] Matt: So that is a great question because this was been around 2004 and I tried, I mean, when I was diagnosed with NF, I went on the Netscape navigator ended N you know, they, you couldn't Google something because Google didn't exist.
[00:19:39] So I Netscape and, and there were no hits, I mean,imagein going online now and Googling something and not even getting like, sorry, the internet has no answers. And so when I did the same thing with an ABI. There were people still, maybe like AOL messenger was just sort of starting. And so my hospital, the ENT in LA tried to connect me with somebody and their experience, I think in life was very different than mine.
[00:20:09] And they only had really negative things to share, which kind of made me feel worse. And I felt very alone. And I, in you, you mentioned this in the intro, that experience of losing my hearing and just wanting so badly to be able to tell us, have somebody say, here's the part that really stinks.
[00:20:28] Here's the part that's hard. That gets better. And here's the part that's great. I, I just wanted to get input and I had nowhere to turn for that. And I think it, that was a pretty fundamental change for my kind of long-term goals in life is I thought, Hey, wouldn't it be great. To help people not feel the way that I feel right now.
[00:20:51] And I had no idea how I was going to do that. And it took me 20 years to figure out how I was going to do that. But in the back of my mind, it was always how this was one of the scariest times of my life. What if I could for a living do something that helped other people not feel and share the scariest time of my life and have them experience the same thing.
[00:21:12] So I didn't know what to expect. And I think because of that and, and this is anecdotal and I, you, you, you only get one chance to live life. So I don't know for sure, but it took me decades to seek out professional help to get better with my hearing. And I don't know if that was time that I needed, I've had my implant for 18 years now.
[00:21:35] I don't know if I could have improved in those first 10 years, because there's a lot of your brains relearning to process sound. But I didn't make any effort. You know, I mentioned before they turned it on and I heard noises, I, and everything sounded like gravel trucks. Everything sounded like wadding up aluminum foil.
[00:21:53] Somebody would say hello, when it sounded like wadding up aluminum foil in two beats. And then everybody said, well, Hey, that's pretty good because we didn't know if the ABI would work at all. And I think I got a little bit lazy because everybody was telling me I was doing well with it. And so I had no standard to measure myself by and I, I quit trying for about a decade.
[00:22:17] I quit trying. And then my kids were born and I couldn't, it was a scary feeling because if one of my kids said, Hey, dad, help or something. I didn't know why it's only one sided. Now I'm still deaf on this side. You can't tell where sounds coming from you. Can't tell, who's asking for that. And that's that was the motivation I needed to be like, all right, I got, I, I need to give this a real chance.
[00:22:45] And so that's when the music aspect started coming into play, as I started using sort of self prescribed music therapy. And and that helped a little bit too of, you know, I listened to a lot of beetles before I lost my hearing. And so I started listening to Beatles again. And even though I didn't sound anywhere near the same, I slowly started picking up things like, Hey Jude, or, you know, the refrains or chords from let it be.
[00:23:12] And I think it acted as a bit of a Rosetta stone for my brain of, oh, well, your ABI has been telling us things, sound this way. But now we remember from in Bloomington and your dorm room listening to this song. So now my brain's going to tell me ABI that things actually are supposed to sound in this play. And I, I kind of envisioned this like argument between my brain and my implant.
[00:23:36] And over time, my brain started winning those just from muscle memory of this is the way that song used to sound. And so I really credit music taking from my sort of my hint recognition scores, kind of a universal understanding of speech understanding my HINT scores went from the mid thirties to the mid sixties, but it took me close to 15 years to get there.
[00:23:59] And I credited music for that progress. I just wish I had had somebody say sooner, you know, there's things out there that could help you beyond. Kind of existing in the world.
[00:24:12] Carrie: And I know I'm kind of getting ahead of myself too, but recently you've also participated in some more like one-on-one therapy for auditory listening.
[00:24:23] Can you share a little bit about that?
[00:24:26] Matt: Sure. And this is, this was I don't know, serendipity is a great words, unexpected gifts, right? You'd think that I would have learned from not getting better over 10 years not to get lazy, but that's exactly what happened. My HINT scores went from 30 to 60 and I said, and everybody, my audiologist said, wow, that's great for an auditory brainstem implant.
[00:24:47] And so I got lazy again. And so for the next three or four years, I stayed right there, but I was, I couldn't use the phone. Things still sounded very robotic and muffled. But I could tell the difference between the way my son said, Hey dad and Louie, my daughter would say, hi dad, it's Maddie. Like that was enough for me.
[00:25:07] And I got lazy as I continued to kind of flow through that, I was like, dude, is this really all I ever, like, I don't want to be able to, am I not going to use the phone ever again? Around that time technology with, you know, the video calling that we're using now, I use Otter live transcript, live transcription, and I started having these other things.
[00:25:28] And I was like, gosh, I feel like I'm almost there and understanding what people are saying based on what I see and read. So I got a little bit more motivated and I work in audiology care now and had seen a name of somebody working in auditory processing disorder training, which I had never heard of.
[00:25:46] But I sell a, a dryer for hearables and I thought, well, this person seems to be very involved in the audiology community. I'll call out, I'll reach out to her and maybe I can sell her something. So I reached out to a woman in Australia. We didn't, we hadn't placed any devices in Australia. So there's a woman by the name of Angela Alexandra.
[00:26:05] And I called her 100% with the goal of selling her a Redux drying system. And she made it clear out of the gate that that's not what she did. She focused on more of this thing called the auditory processing and I nodded and acted like I knew exactly what she was talking about. And somewhere in that 90 minute sales call and it ended up being like a terrible sales call cause she had no interest in buying.
[00:26:33] The conversation became much more about brain, the way my brain processes sound through an ABI and how unique that was. And also how the industry is starting to learn. And science is starting to learn about how integral the brain is in hearing. You know, we think we hear with your ears, but yours don't really do anything except pass along vibrations to your brain and your brain.
[00:26:59] So you actually hear with an Angela said, Hey, I would like to study you. And so I agreed at this point just because she's a better salesperson than I am, and she talked me into it. And the outcome of that was we started meeting for a couple of hours a week. And this was just last year. And in one year of having a professional say, I'm going to help you, not with life sounds and not with song lyrics, but I'm going to focus on individual sounds of words, which I learned to call them phonemes, which audiologists know, but most, most normal people though And we've.
[00:27:35] So it was everything from down to, without seeing these speak, we're going to work on the sound of ma versus NA or PA. I mean, the idea of me trying to identify the P sound it was just like, there's just no way I can do this. And so we went through the testing and I failed miserably and we did it the following week and I failed miserably.
[00:27:57] And somewhere over the course of the next 10 weeks, I started failing less miserably and less miserably to a point where I was very genuinely hearing the sounds that she was making and my HINT scores keep in mind, it took 16 or 17 years to go from zero to 60%. It took a one year of that auditory processing training to go from 60 to 90.
[00:28:25] And I don't, this is anecdotal. So I don't want to pretend like you're going to see a 30 percentage point increase in a year. I don't know if that's great. I don't know if it's bad. I don't know. I just know that's the experience that I had. And there were a lot of lessons for me there because one step I need to stop being lazy and accepting it wherever I am that let other people define this is good.
[00:28:51] Like I need to be the one that defines is this good enough for me? And the value of seeking professional help. And this is really kind of sports analogy. I'm very analogy driven with the sports analogy of coaching is great. During COVID my son and I tried to take up. Well, I thought I'm going to wait to take a lesson until I get good enough.
[00:29:13] And then the lesson will be helpful. And so every day, five days a week, I would go out without a lesson and started out terrible and never got better. I was just practicing bad habits. I didn't know what I was doing. And I, the idea of wait until you're good to get a lesson is just ridiculous. I got better in one 30 minute lesson than I did in 30 days.
[00:29:35] They're trying to do it on my own. And that if I'm so willing to, and that's pretty accepted in sports, why in the world would I do that with my hearing? And so I, I credit Angela and the work that we did together, it was me finally saying, okay, I'm going to get a hearing coach. And and she's going to help me, even if she doesn't, if I don't get better.
[00:29:57] She can give me some good habits and good things to work on. I did get better, but that was just a lucky fortunate outcome that wasn't even the goal.
[00:30:06] Carrie: Yeah. Your point is well taken, I think. And I'm just gonna speak from my own personal experience of going through the cochlear implant process and being an audiologist.
[00:30:17] I don't think we, and I'm just going to say audiology world in general does a really good job with that post implant coaching, auditory rehab as a, you know, much needed part of it. And, and I don't want to say everyone, but I just want to say, like, we, we talk about APPs. So we talk about, you know, listening to an audio book on, you know, or whatever it happens to be.
[00:30:49] But I would say there was a lot of value for me having a real person. I have what you call an auditory, a coach to that I went to, to help me make sense of, I want to say almost like learning a new language because you're listening to such a different signal than an acoustic signal. And your brain has no idea what it's listening, for.
[00:31:14] And by having someone who's benchmarking you, they can say, look, you started out like what you said. Look I, I would bomb to this, but now look where you're at. And it gives you motivation to be like, all right, I can do this. I can, I have somebody that's keeping me accountable, motivating me to take that next step.
[00:31:36] And that letting someone else define what good is having, you know you do that,
[00:31:43] Matt: And you're you're, that has been my experience as well. Is that because you live your hearing every day. So even if you have bad hearing, you're living your bad hearing every day. So if it does get better, it doesn't happen, you know, in an instant.
[00:31:58] So it's hard to recognize, oh, this got better. You know, even with vision, you can be like, well, I can read that better, or I can see that sign now, but with hearing it's you can't think, oh, well I hear that bird a little bit more clearly. Or so having those objective measures and having something on written down to say, did you know that even four weeks ago you were here and now you're here?
[00:32:22] It can be it's rewarding. It makes you feel good. And like, you know, like if you're dieting and you never see that you lose weight, if that's your goal, it's hard to say I'm going to keep doing this, but there's a reason there's reasons scales exist. Right? I mean weight Watchers has scales for a reason. There, this is the same way let's measure and show you the change that we're making.
[00:32:42] And in the point you make is about, and I don't know if lack of support is, is the right phrase, but I know I sought out help. I mean, I was actively looking for help and there was a CD rom now like, oh, Hey, here's a CD rom, well, Phil Nicholson didn't win the masters because of a CD rom, you know, you, you, you need that engagement.
[00:33:07] You need something that's constantly being adapted to you. I think I love the growth of the CI cochlear implant in the community for people to choose that path. And I work with an organization in Indianapolis called the St. Joseph Institute for the day. And the Indianapolis community is fortunate to have a great cochlear implant program with IU health and Riley children's hospital.
[00:33:31] So there are a lot of kids in Indiana at as young as 18 months that are getting these implants. And there's the, I think this assumption that they've been fixed, you know, like, Hey, we fixed that problem. And then they get into kindergarten and they're nowhere near ready. They're not on par with listening and spoken language with their peers.
[00:33:53] So what St Joe's does, is there a school dedicated to helping kids that get implanted in early age, prepare for mainstream education? And so I see the work that they do all the time and think, gosh, without the support, you have somebody that has all of these amazing tools and nobody ever showed them the right way to use them.
[00:34:15] You're like, all right, well, you got the nail in the hole, right. But you used a screwdriver to bang it in. You got a hammer there that would have worked great. If only someone had taken the time to show you how to use the tools that you have. And that's an area we'd love to see, continue to grow, because I don't know that the long-term solution is there's an app for that, or there's a CD rom for that, right?
[00:34:37] Yeah. You're right.
[00:34:38] Carrie: One thing that you said too is you did, you know, you said your HINT scores improved then, and you were happy about having someone coach you. What did you notice about your everyday life? Were there some things within your environment that you were like, I can hear better in this setting?
[00:35:01] Or what are some of those discoveries that you had?
[00:35:05] Matt: So there, I'm glad you asked that because I just made them point about how. Because you live with everyday, it's hard to notice the change. So even going through the coaching, it was still, I wasn't really trying to identify a change, so I didn't know that it was happening.
[00:35:23] And I mentioned working with Dr. Alexander and one of the things that she would ask at the beginning of our therapy sessions was, did you notice a change this week or did they notice anything new this week? Which was great because sometimes the answer was no. And I, and to create an environment where I was comfortable saying, no, I didn't notice a change that that's healthy.
[00:35:46] I mean, it's, if we have that kind of being able to be that honest and not say, make something up, but it also forced me to be more mindful of what did I notice? And I mentioned the Beatles earlier. So I use that as an example, I have the same 60 S I have a 66 song playlist, and I add about two songs a year to that, but it's mostly songs
[00:36:07] Then I listened to a lot before I lost hearing and then songs that helped me as I was trying to recover. And there's a line that the Beatless line that says for, for a long time, I thought it was mother Mary comforts me and I was driving into work and it, and it said it's mother Mary comes to me and I hadn't heard the T in, comes to me in 20 years.
[00:36:31] And I remember rewinding and listening to it over and over again, you know, rewinding so old school, but backing up and listen to it over and over again. And it like, it was so clearly mother Mary comes to me that I was excited to tell her I heard a new line in the song and, and there's no way that's coincidence because there's no way I heard a distinctly T sound the same month that we were working on identifying the phoneme T.
[00:37:01] Yeah. And I think that the brain got lazy, like I said, had just gotten lazy and it wasn't, it wasn't listening for. And so when I heard it in a real world environment and something that I've been listening to over and over again, it was a very objective way for me to say that's gotten better. Ah that's and I, my wife and two other friends both commented that my, they could tell a difference in my speech.
[00:37:29] And I think it was because I was ennunciating letters that I had gotten a little bit lazy with. Like even now, and I said, I had gotten. It's very common for people to pronounce better. That's B E D D E R. And so even just little things like making sure I'm saying, using a T and better or a pen, I write with a pen, you know, but I, I, I, my daughter puts a pin in her hair.
[00:37:56] And so just identifying those different sounds people that are been around me almost every day for decades could notice that my speech or that may speech was a little bit more clear.
[00:38:08] Carrie: That's exciting. Those are all huge. I mean, there's small steps, but they're huge in the big picture, which is exciting.
[00:38:15] One question I have for you. As you had said, you never, you know, we didn't have Google and you'd never met anybody else with a auditory brainstem implant. And the person that you did connect with, didn't have a good experience now that you're kind of out there and people know who you are and you have been publicly sharing your story.
[00:38:40] Have you been able to meet or mentor anyone that is thinking about getting an auditory brain stem implant or who has gotten one and be able to coach them a little bit through the process?
[00:38:54] Matt: So yeah, the sort of answer to that is yes, certainly. And it is something I I feel a very heavy sense of responsibility because I'm not a doctor and I don't, I want to make sure people are aware that my experience is my experience.
[00:39:13] My experience is not the way it works or what their experience will be. It's kind of a weird way of losing my hearing. I, I, I don't know that I was the most empathetic person in the world before. Losing my hearing probably made me a little bit more empathetic and understanding that what you're going through was is difficult for you because it's you, and it's your life and your experience.
[00:39:36] I try to be more mindful of that. And I don't think I did very well with that 10 years ago. And so I do share my experience and tried to go back to what I said earlier, which is, I want to share with you the parts that were really, really hard because I don't want to pretend like I don't want you to look at my eight year 18 with hundreds and hundreds and hundreds of hours of effort and think that's day one.
[00:40:06] So that expectation management is a big part of it. So I wouldn't know. What's hard. And when I say hard, I mean, physically, mentally, emotionally where I failed like that, you know, I'm being short with friends and family or the first year after I was just spoke with someone this morning at 10:00 AM who's as a family member of getting an implant in March.
[00:40:28] And I said, one of the regrets that I have is, and I couldn't move my half of my face. I have a little bit of that movement back, but I still can't feel this side of my face. And I've had a dozen eye surgeries and have my tear duct is plugged and I have a platinum weight and my eyelid and I didn't allow a picture taken of me for a year and I didn't go out and do anything for a year.
[00:40:51] And my poor wife here, you were dating, we're now married and mid twenties in Chicago and the whole world's happening around us. And. I didn't go anywhere because I didn't want anybody to see me what I felt. I felt like I looked bad and felt bad. And the progress that I have made since then I know I, I miss and I wished that I had that first year to be able to come compare myself against, to say, okay, I might be frustrated with something today, but look how far I've come.
[00:41:22] And so my advice to her, for her family member was even if you just keep them to yourself that first year is going to be the worst. Like you said, day one is the hard is the worst hearing day. Make note of that, you know, be aware of what you can and can't hear whether you journal it or a photograph.
[00:41:41] Because it was, it gets better. It's encouraging to be able to look back at that day. I also tell them what's great about it because it's, I don't, I try to be a pretty good glass, half full person. So I tried to balance the expectation management with, you know, what, even if I mean, cause there was a summer where I couldn't hear anything and my wife and I had to work out a system where, when she would come home from work and I was home on disability, she would have to turn on and we agreed that she would flick the lights on and off as soon as she got in, because she would scare the tar out of me when I'd be sitting down, watching TV on closed caption and she would appear or throw a pillow at me being able to hear her footsteps, even if I didn't recognize they were footsteps, but the thump, thump, thump of heels on hardwood or oven timer.
[00:42:28] I burned a lot of pizzas that summer because I would forget. And I wouldn't notice until I would smell it or see the smoke.. Being able to hear those things is a huge deal is a huge deal. So just recognizing this kind of goes back to the small wins thing, recognizing that even if it's not what you think it's going to be on day one, there are still things out of the gate they're going to be better than where you were before.
[00:42:54] So yes, I do have those opportunities and it's something that I take very, very seriously because I know just how much I needed that. And I don't want to give anybody false hope, but I also want them to know that there are things that it's like anything else in life, you know, the, some parts hard, the some parts easier.
[00:43:14] So much of what I've experienced now with. There's a phrase that I love is the difference between a problem and an opportunity is your perspective. And so anytime I face a problem, whether it's hearing or NF related, I think, okay, that's not going to change. What can change is how I look at this? So am I looking at this as a problem, or can I shift and look at this as an opportunity?
[00:43:38] And that's really, really hard. But being like, I, I try to help other people think of looking at it that way, knowing that they're going to fail at it all the time, just like I do. But if you succeed at it even once a day that's progress. Well, I
[00:43:56] Carrie: just want to thank you by sharing your story with others, because I know from my perspective too, As an audiologist going through the cochlear implant process, it was still the people that had gone through the process personally, before me that were my sounding board that were my motivation that shared the ups and downs with me, which, you know, a surgeon or an audiologist or anybody else on that medical team, unless they happen to have an implant, they don't know.
[00:44:36] So it's people like you who are vulnerable and willing to be. Out there and share you a story that's really going to help someone else who is going through the same thing. So thank you for that. I just thought well,
[00:44:51] Matt: and I, I feel like I shouldn't say the exact same thing back to you because your patients in your community probably doesn't realize how, and I know you're going to like blush or say, oh no, but they don't realize how lucky they are to have you because I know your training and I know your background and I know the people that you work with and, and it's, it's sort of this best of the best of people that I admire in the industry.
[00:45:16] But you have such a unique perspective to offer your patients of having your doctorate, having the experience. But then on top of that, also being somebody who is out looking for stories to share, because you don't get anything out of this, you know, you, you, we, we, neither of us get anything out of this other thing, If there's somebody that can listen to this and have a better experience, then you and I win.
[00:45:43] That's the pay off here. That's, that's not a terribly common approach. And so I I'm, I'm very appreciative of you. You know, whether it's having me or anybody else on, because I agree the, I hope and think these stories can help. I
[00:46:01] Carrie: agree. And thank you for that too, but I feel the same about you that you've made such an impact too, and people are lucky to come in contact with you.
[00:46:10] One thing that I, before we kind of close up too, is that you have done a lot to raise awareness about the hearing loss and NF2 have to by competing and some very. Oh, what should I say? Challenging events, such as marathons and the iron man. Can you share a little bit about how you are raising awareness and other ways?
[00:46:35] Matt: Sure. So there was not, I mean, I'm guessing a lot of people listening to this have never heard of neurofibromatosis and it's actually not that rare at all. It just lacked some, some marketing support. I mean, for there's a lot of people that will phrase it differently, but I work in sales and marketing, so I kind of view it as a marketing thing.
[00:46:54] And I, I just thought if, if I sought out this information in 20 years ago, couldn't find it, there are other people must be as well. So what can I do? Well, we want medicine to treat this that doesn't exist so we can start raising money. Well what can you to do, to raise money. My, I credit my wife because when she and I were dating.
[00:47:16] I was in rehab. She was living with my parents coming to visit me and rehab each day. And so she decided to run a marathon and raise money for NF. Which is you pretty much have to marry the person who moves in with your parents and starts raising money and running a marathon for the disorder. They put you in the hospital.
[00:47:37] And so then the competitive side of me was like, well, if she ran one, then my goal, when I get out of this bed and moved from that wheelchair to walker, to cane a finish line, they literal and figurative finish line for me would be run a marathon with her. So we did that. We had a great experience.
[00:47:54] And so it just kept becoming, what more can we do? What more can we do? So I ran a couple of marathons and then I was just at a point in my life where. I needed some wins, you know, I just NF not just the hearing, but all the other physical aspects of with, I couldn't continue doing the job that I had effectively I couldn't travel and do everything I was doing because of the health-related things.
[00:48:19] And so I just needed a win and I thought, well, I can't do a lot of things that even toddlers can do. So what's something hard that I can do. And I decided, Hey, I'll have out an Ironman. And so I went to look at the day one that there's the 36 week training program for the iron man. I looked at week one and it took me 10 weeks.
[00:48:40] I had to do a 10 week training program to get in. Good enough shape to finish week one of the 36 week Ironman. And so I was able to finish that I did not win. I didn't, I didn't podium finish. But 15 hours and changed later finished an Ironman and then thought, okay, I needed that for we, we raised a lot of money.
[00:49:02] We raised some awareness, but more importantly, I just needed that win of saying, okay, yes, there are a bunch of things I can't do. And I can focus on all of that and get really down. But I just proved to myself that I can do this thing, that a lot of my friends who are out there winning at things can't do.
[00:49:23] And, and I needed that for myself. And that was really kind of a big moment for me. To get the courage and confidence to start getting more involved in hearing care, kind of led me eventually to Redux and where we're now drawing cochlear implants and an auditory brainstem implants and hearing aids for a thousand patients every day.
[00:49:47] Wow.
[00:49:48] Carrie: That is so motivating. And like you said, those wins are important and in all of our lives too, but it sounds like you and your wife have such an incredible relationship that it kind of captured the eyes and ears of Hollywood as well. Could you share just a little bit about that sneak peak?
[00:50:08] Matt: The do I, I would, I would, I would love to be on a fly on a wall and have my wife share her perspective, everything that I just shared and see, see how closely that was aligned.
[00:50:18] We what. That's certainly the last few years have been challenging for a lot of reasons for folks. One benefit it gave me if working from home is I've been doing a lot more writing for Redux and copywriting and article writing and sort of reignited my joy for being able to do that.
[00:50:36] So I started writing stories about my own experience, some of the challenges of being in a relationship with that hearing and then the joys of being in a relationship with that hearing, you know, and then started telling stories too, for my kids, if like how we met or writing about the Ironman and I put all of those together and a good lesson again in failure.
[00:50:59] I submitted those the 19th publisher that I submitted that to, to be clear 18. No thanks. No, thanks. No Thanks. Nothing. And I have my final draft due to McMellon and St. Martin's press agreed to publish my memoir which even sounds goofy to say out loud. So I'm six weeks away from having that due to them.
[00:51:22] So that's been pretty exciting. And then somewhere through all of that a story similar to what we're doing was published by NPR and through a comedy of errors that somehow ended up on the, in front of Channing Tatum who said, yeah, okay, this is a movie I need to make. So that doesn't mean the movie's going to happen because there's a lot of people involved.
[00:51:44] But right now I technically would be breaking a contract if you, and I decided to make a movie about my hearing loss experience, because Channing owns the right to that. All of that is just crazy because I'm still the guy who tried to fix a dishwasher and failed this morning. But it, it is, it's also very rewarding because it wasn't doesn't feel like that long ago.
[00:52:10] I was the guy who wouldn't let anybody take his picture and didn't want to leave the house because I wasn't comfortable with who I was. And I didn't want people to see me the way I was. So this is really kind of an evolution of accepting who I am and saying, okay, I have these limitations, but where can I still succeed?
[00:52:34] Where can I still make an impact? And then focusing on those things that I could do, I could still write, I can still try to make somebody laugh. And by focusing and really going all in on those things. All this sort of crazy book, movie stuff. Even the job I have now with Redux in working the calling on audiologists and failing to sell to Angela Alexander all of those things are just outcomes of me trying to help people that deal with NF or deal with hearing loss function a little bit better, or manage their lives a little bit better.
[00:53:10] So that's pretty rewarding. Wow.
[00:53:13] Carrie: Yeah, you are definitely a very empowering person and motivating person. And I'm so excited that I had the opportunity that I could work interview you today for this podcast too. Is there anything that you want to share with the audience before we close today that I didn't ask you about.
[00:53:35] Matt: The the only, and this was, I got sidetracked and thinking about something else, but a lesson, another lesson I wish I had learned sooner, and we don't need to go into a bunch of detail on this, but the importance of self advocacy. And, and I, maybe this comes with age, but for a long time, I looked at my doctors and thought they know best and they know a lot, but they don't necessarily know best.
[00:54:01] And they might, but it's okay to question that it's okay to question your audiologist. And if you have in medical professional, who doesn't like being questioned, maybe that's not the right fit. Even, even seeking out that kind of help, nobody was ever came. Nobody ever came to me and said, Hey, we have this training that can help you.
[00:54:20] It took me advocating for myself and going out and seeking that help. And I just wish I had known that sooner that it's okay to question your medical provider, I mean, in a, in a polite professional way or to ask why, and it's okay to interview five different audiologists and find out the one that you think best meets your needs.
[00:54:44] I wish I had known that I could self-advocate a little bit sooner. Because one, it will help make sure you're comfortable with the carrier getting, but I have found I'm more successful in the outcomes that I have if I feel some ownership in them. And it was just like, if you get your first car and you have to buy it, you're going to be a little bit more careful with it.
[00:55:05] Versus if your parents just give you their old Dodge minivan, Having that ownership of your care was, was very impactful for me. And as soon as that I realized, Hey, I'm, I'm the one, this is my body. And I'm, I can be involved in the decisions. That was very empowering for me. And I think that's another reason why I had seen better outcomes since then.
[00:55:29] So I guess I could, I want to unofficially give people permission to say, you know, you're in charge of you and if you, if you're going to just wait for like something to happen, it probably won't. So do your research and go out and ask those questions. And it's just I know from my, you know, my anecdotal experience of one, that's made a big impact.
[00:55:55] Yeah, that's very
[00:55:55] Carrie: good advice. But whether it's a, an adult or a parent or who is advocating for their child and either way asking questions and being curious and finding the right fit is, is really important too. Well, Matt, I just want to say thank you, but being at the empowerAudiology podcast I would definitely link up your social media to the show notes today.
[00:56:20] So people want to read more about your story or hear the NPR podcast, or I'm gonna find you different ways. They'll be able to find you. So again, Matt, thank you for being a part of this today.
[00:56:33] Matt: Well, thank you, Carrie.
This has been a production of the 3C Digital Media Network.

Episode 39: empowEAR Audiology - Gayla Guignard

[00:00:00] Announcer: Welcome to episode 39 of empowEAR Audiology with Dr. Carrie Spangler.
[00:00:16] Carrie: Welcome to the empowEAR Audiology podcast, which is part of the 3C Digital Media Network. My name is Dr. Carrie Spangler, and I am your host. I am a passionate audiologist with a lifelong journey of living with hearing challenges in this vibrant hearing world. This podcast is for professionals, parents, individuals, with your own challenges and those who want to be inspired.
[00:00:45] Thank you for listening, and I hope you will subscribe, invite others to listen and leave me a positive review. I also wanted to invite all of you to visit and engage in the conversation on the empowEAR Audiology Facebook group. Transcripts for each episode can be found at www dot three, the number three, C digital media network dot com under the empowEAR podcast tab.
[00:01:19] Now let's get started with today's episode. Welcome to the empowEAR Audiology podcast. My name is Dr. Carrie Spangler, and I am so excited today to introduce my guest Gayla Guignard. And she is the AG Bell Chief Strategy and Programs officer. She has a history. And I'm going to share a little bit about that as the founding director of Indiana Center for deaf and hard of hearing education.
[00:01:47] And she spent several years at the Indiana’s early hearing detection and intervention coordinator data also. So does AG Bell’s chief program officer from 2003- 2007. And she worked with children, families, undergraduate and graduate students at the university of Tennessee from 1991 to 2003. Gayla was a consultant with the national center and hearing assessment and management from 2007 to 2013. Gayla is an audiologist, a speech language pathologist, and a certified listening and spoken language professional.
[00:02:25] She received her bachelor's degree from Purdue university and two master's degrees from the university of Tennessee. So welcome Gayla to the empowEar Audiology podcast. Thank you for joining
[00:02:38] Gayla: us. Thank you, Carrie. And so great to be here with you.
[00:02:43] Carrie: Well, I'm excited to have this conversation today for all of our listeners about leadership and everything that you are so involved in, but before we go down that path, do you want to go back in history about when we met?
[00:02:59] Gayla: Oh, that sounds good. I remember exactly when we met. So. You and I met in 2012 at the ag bell convention that happened in Scottsdale, Arizona. And we met at the hotel. You were with our mutual colleague and friend Cheryl Johnson. And it was so fun. And she said, the two of you want to know each other.
[00:03:23] So we met, but I had known about you because of the great work you were doing in Ohio. Probably, I mean, several years before that. So it was really great to finally get to meet you and over time to get to know you a bit better and a bit better, and just delighted to have this time to spend with you today.
[00:03:42] So thanks
[00:03:43] Carrie: for you to be here today. I always like to ask my guests too who are in the fields. How did you get here? How did you get into speech pathology and audiology?
[00:03:58] Gayla: You know, that's a story that I sometimes think changes because the older I get, the more, when I look back, I realize the different influences on my own life, in, in my decisions and sort of my, my paths.
[00:04:12] And I've had several, but. I when I went to Purdue, I initially went and thought I wanted to be a social worker and, and sort of realized that I wanted to do something that where the training felt more specific. And one thing led to another, and I ended up choosing speech language pathology, and then really got bitten by audiology during my senior year at Purdue and said, I want to do this.
[00:04:43] And so I became an audiologist after I received my first master's degree in audiology at the University of Tennessee. I ended up deciding when I was there that I thought eventually I would want to specialize in teaching children who are deaf or hard of hearing to listen and talk. So I thought that was amazing as well.
[00:05:04] It felt like a really good fit for me. And then I ended up getting a second master's in speech language pathology, because I thought that will help me be better at my job and will help me understand some of the questions that were in my mind. And so that was good, but really I got interested in speech and hearing issues because I had a little sister who stuttered.
[00:05:24] And it was so interesting because when my family got help for her, we were simply told because there are five children in your family and she's the youngest she's stuttering because she can't get a word in edgewise at your family table. And so everybody needs to stop and listen to her and give her an opportunity to have a conversational turn.
[00:05:48] And that's what we did that worked
[00:05:53] Oh, when I, when I saw this as an, as another option in terms of the career field, when I was leaving this, this thought that I was going to be a social worker to, to doing something else. I remember that. And how impactful, just that professional advice was on my family. And I, I really have never looked back.
[00:06:11] I've only been really grateful for the career that I chose.
[00:06:15] Carrie: Yeah, I'm always so interested in how people get involved and there's usually something in their past, like you said, their family that really steers them into our field.
[00:06:25] Gayla: well, and here's another funny story. So I grew up in the, in a small town of 9,000 in the middle of a corn field in Indiana called Greencastle.
[00:06:35] And in Greencastle, Indiana, I was part of a really loving close-knit community. Many of whom were my family members. My mother was one of 17 and I have 76 first cousins between both sides of the family. So I grew up with a lot of brothers and sisters and cousins in, we would put on little productions, like singing, or do a play.
[00:06:58] There wasn't a lot to do when you lived out in the middle of the cornfield. And so we had to be really creative. We talked and talked and talked. Then I, I definitely had the reputation of being the talker. So it also made a lot of sense that I would go into a field where I would help people become more effective at talking.
[00:07:19] So anyway,
[00:07:21] Carrie: oh, I love that. And then you landed. At AG bell as the chief strategy and programs officer, I know you had a lot of things that kind of led up to that place, but can you just share a little bit now about your role there?
[00:07:38] Gayla: Sure. Well, I I've actually been with AG bell twice. I do love that organization and know it really well, obviously, but I first went to AG bell back in 2003 and I, I took that opportunity at that time because I had worked at the university of Tennessee for many years, about 13 years and love the work of teaching children, the joy of teaching children to listen and talk and working.
[00:08:07] In partnership with their families to make that happen and working with graduate students, teaching them how to teach children to listen and talk. I loved it, but I wanted to see if I could impact for good. More children, whose whose families wanted them to listen and talk and more families. And I felt that if I took a position at AG Bell, I would be able to do that.
[00:08:28] And so that's really how I came to AG Bell. The first time I would have stayed, but I had a young daughter with some special needs at that time and we just really needed to be closer to family. And so we moved back to my home state and of Indiana. And then eventually just made our way back to Tennessee.
[00:08:50] And we sorta had this Indiana, Tennessee, DC sort of triangle thing going on, but I love all three and the things that happen in each one. But essentially I came back to AG Bell when there was an opportunity in 2015, because it really is a professional home for me and, and really has my heart in terms of the mission.
[00:09:14] And the impact that AG Bell has on families lives. So. I I've had a lot of experience with systems change and I've had a lot of experience with difficult and hard conversations at a fairly high level in terms of trying to make change happen when people didn't necessarily all want to see the change happen.
[00:09:36] And. And so I think that that has uniquely qualified me for that position, especially the chief strategy officer piece at AG Bell. So, and I didn't mention, you know, you know, I've been with AG Bell back at AG Bell since 2015 and in my. Role part of what I do is work with people all over the world.
[00:09:56] And that has really, really been just enjoyable and fun and a joy for me to see other professionals develop as leaders to make change happen, where they are. That is like one of the most exciting things for me is as much as I love working with children in families, parents I also really, really love working with professionals and helping them to be the leader where they are or showing them have, or giving them advice on how to do that.
[00:10:27] Because that one professional can make the difference in hundreds of lives, you know, over the course of their career
[00:10:36] Carrie: as I see you just knowing you over the last 10 years, I do see you as like a servant leader. And now that you tell your backstory of wanting to go into social work, having 76 cousins who you were around all the time your own daughter, your own sister who had different needs along the way, and then going in and getting your master's in speech and audiology, I have.
[00:11:01] Set you up, I think to be a servant leader with AG Bell, can you, you shared a little bit about your leadership style unbelief, but what else can you share that you think is helpful for others to improve upon their skills and lead in a specific way?
[00:11:20] Gayla: So I I take it as a compliment that you call me as servant leader.
[00:11:24] I would, I would really not want to be any other kind of leader. I thought about this a lot as I was developing my own leadership skills, but also being developed as a leader because it wasn't all up to me. I, I will say first, I believe that there is a leader within everyone. We lead in our own lives, hopefully.
[00:11:45] And I, I can understand when I was doing an internship in Colorado many years ago when I was young in my early twenties. And I, I saw I worked with a younger girl. She was 17, who was kind of constantly being told what to do. And even to the point of being told who she was, and I said to her, Listen, you can't let other people tell you who you are.
[00:12:11] Yes. Your boss sometimes tells you what to do, but nobody can tell you who you are. You get to choose to be who you are. And if you don't want to live your life. Somebody else will live it for you. They'll actually sort of take it over because maybe they liked controlling people. Is that how you want it to be for you?
[00:12:31] And she said, that's not how I want it to be. So I said, you know, then stand up and, you know be counted, you know, as the person who gets to be that driver in your own life. So I do believe there is a leader within, and that most of us don't know it. And that most of us either don't have any one tell us that, or we don't know.
[00:12:55] We don't see a path to, to growing into our leadership and to honing that leadership and to actually leading other people, you know, we don't know how to do that. And so I think that's, to me, I come from a perspective of plenty. I always think there's plenty. I feel like there's plenty of love. I feel like there are plenty of children who were deaf or hard of hearing to go around.
[00:13:23] Plenty of parents. I feel like there is plenty of room for other people to shine. I don't have to be the shining leader all the time. But I, I don't always, I do think that there is probably a dearth of knowledge, so people don't always know how to navigate as a leader to make change happen that they so desperately want to see.
[00:13:47] And so if it's one thing I say to someone or our ongoing conversations, I have I'm delighted to do that because the world needs more leaders because we always need to be changing and growing.
[00:14:01] Carrie: Yeah, I liked what you said about that there’s the leader within all of us. And I think that self-leadership is so important too.
[00:14:11] And just kind of what you said, you know, do you want somebody else to be controlling you or do you want to be controlling yourself and how do we lead within ourselves too? There's plenty. And your point about anybody can be a leader. But I think some people wait to have a title and that doesn't need to be the place for you.
[00:14:34] Like you said, you can lead wherever you're at. And how do you navigate through some of that? I think, This is just my impression to you. I think you're a great storyteller and that you have a lot to share with others. And do you feel like storytelling is a critical piece of being an effective leader, especially being an effective leader for a nonprofit organization, such as AG Bell.
[00:15:06] Gayla: I I do. I think that I love it. Even the there's a, there's a storytelling festival. The national storytelling festival happens here in Tennessee where I live every year. It's happened for years and I still haven't been to it. It's in Jonesborough, Tennessee, but I say to myself, I got to go to that storytelling festival because I, I love storytelling.
[00:15:25] I like telling stories and I like hearing the stories and I think that's true. Of most people. Then when we tell someone who asks us how our day went, I mean, we kind of retell the story of the day, right? And some people can deal with all the details and other people can't and some people say, get to the point, but the reality is that's kind of how we as humans live our lives.
[00:15:51] And sometimes we rewrite the story. Sometimes we need to do that. And it's just a wonderful that we can. 'cause sometimes that's what helps us go on when things happen. But in terms of just storytelling and how you use that in leadership, again, it goes back to people not necessarily feeling empowered.
[00:16:11] To, to have the life they want or to make the changes they want in their career, or to have the changes happen that they want for their child and family. And so I will often, you know, say I remember when I was such and such, so I, I and, and this is kind of how I handle that. And I don't, I try not to give advice to people and say, just do this.
[00:16:37] Or this is what you ought to do, but instead just share that story that had an impact on me. And, and then if I feel like sort of that light's not going off in somebody's eyes, I'll say so. So, you know, what I did with that was this but I think it's really impactful just just yesterday and this isn't in my professional career, but yesterday I was the, the parent representative during some interviews that are happening at the University of Tennessee for a program called The Future program and my daughter's enrolled in the future program.
[00:17:10] And so I was asked to come to. Be with and speak with parents whose children are going through the interviewing process and to be able to answer questions and just sort of tell our story. And I just, I just did, I talked about who I am, who my daughter is. The kinds of things that they could expect from the program.
[00:17:34] I talked about how hard it was when I first put my daughter in her apartment at the age of 26. How hard that wasn't for three weeks, I didn't sleep well because the phone might ring at 12 o'clock or I was wondering if she was okay and really trying to show them that it's okay to be afraid. It's okay.
[00:17:53] To be nervous. And it's really good to go down roads. You've never been down because what might you find on that road that you didn't know existed? And that's certainly what's happened with my daughter and living away from home. Sometimes we as human beings just can't see beyond our own everyday lives.
[00:18:11] We're so busy. Sometimes we're really stressed, but our lives tend to be very small if we let them be small. And, and that's another thing people. Can stay in one place, but because of the internet we have very big lives. You know, we don't travel at all, but we know people from all over the world and that is really, really cool.
[00:18:33] So anyway, the power of a good story changes lives. That's what I believe.
[00:18:39] Carrie: I think as a leader, do you feel that it makes you also vulnerable and real as a person? And do you think that is helpful for others to see that.
[00:18:53] Gayla: I think that there is like a double, there's two sides to leadership. There's one where people sometimes just want you to
[00:19:03] be the leader and lead, and they want to think that you have something they don't have, because that makes them feel sick. That makes them feel more comfortable. And I remember when I left my position in Indiana and was, was coming back to AG Bell, one of the things I said as I was leaving is okay, you all are now in charge of this.
[00:19:22] It's it's, it's your time to shine. You're all leaders, you can do this, you can make it happen. And it was sort of like you know, and it, but it's, it's so true. Right. But that also, when you say to any individual person. Maybe it's time for you to lead. You're also kind of asking the person to step up to a line to do that.
[00:19:42] And you don't not, everybody wants to do that and I think that's, I think that's okay. I mean, we're all individuals, we have different gifts. But I don't think it's okay to not be the leader in your own life. I think that's really important. Because I think we have gifts and talents that we do bring to this world that are really unique and come from the really unique person, the special person that each one of us is.
[00:20:09] And so. You know, if we don't lead ourselves, then those things might not show up. And when those things show up, they impact other people's lives positively too. So, yeah,
[00:20:22] Carrie: I think on the flip side of it, as you mentioned earlier, there's also challenges to being a leader. And what are some of those challenges that you've had along the way and how have you handled that?
[00:20:37] Gayla: It can sometimes be lonely at the top. You know, there's, there's really no other way to put it. And I think there are so many decisions that leaders need to make in that can be very, very challenging because you don't always have all the information you need as the leader. You might want it, but sometimes if you're trying to get all the information, you're really just micromanaging your staff.
[00:21:01] You're you're micromanaging your team. And that's not the way to live either. It's not a great way for them to live. So sometimes, you know, as that leader, you're in that tough position where you have to make decisions on partial information and you have to be brave enough to take the risk, to do that and brave enough to, to be wrong sometimes and to live with.
[00:21:22] Sort of the consequences and the backlash of being wrong. I think that's tough. At some times, and other times it's not tough because the reality is that my mother said, you know, we were made for days like the. And so would, she said that she meant, she means my mother had a lot of leadership in her family.
[00:21:42] She had, there was a lot, there are a lot of leaders, my mother's family, where they have the 17 kids. And it was so funny when she was on her sort of just in her final days of her life, that she had contracted cancer, big surprise to all of us, that she was very coherent and only lived 10 weeks past the diagnosis.
[00:22:01] And she was one of those people you just sort of thought could never be chopped down. Very strong throughout her life. The matriarch of our family love it, very strong, very strong personality. And we were kind of afraid of her because we were smart kids. When we were in tween and our teen years, we were smart to be afraid of her.
[00:22:19] She was a little vicious, but anyway, but my mother said a lot of funny things when she was Final days and weeks. And one of the things she said is you've never been the kind of woman who was willing to sit in the back of the bus, me neither we're just not those kinds of women.
[00:22:41] 'cause. I said what I was in elementary school. I love to ride in the back of the bus and bounce up and down. So, you know, I think her language was a little confused at that point, but her point is that you, you know, you, it's important to. To, to, to recognize that sometimes you have to do the one, you have to be the one that will do those hard things that nobody else wants to do, because it's so important to make the change happen.
[00:23:08] But it is, it is sometimes very challenging when there are competing. Like this is a good decision, but this, this option could be another good decision and this option could result in another good decision. But which one is the best? Those are the kinds of challenges. Sometimes leaders have. Yeah, I think, I think that's it.
[00:23:31] I mean, it's really, I think it's fun to lead efforts, you know, it's fun to create and it's certainly, I think it's really fun to encourage other people because the reality, we all worry about a lot of things that don't come to pass. But, but at the same time, I kind of am a worrier naturally because it's how I process things.
[00:23:53] Like, let me kind of worry on this. You don't think about it. Think about it. Think about, oh, I figured it out. Right. I kind of do that when I'm processing things and trying to figure things out. But at the same time you know, it's, it's most, most of the time we worry about things that will never come to pass.
[00:24:12] And so if we can spend our time. In a different way in instead, make things happen that make the things we want to see, come to pass occur better way to use time and are really relatively short time.
[00:24:30] Carrie: Great. Great advice. And going along with the challenges, what about conflict and how do you handle that in an organization?
[00:24:40] Because I'm sure there's a lot of different opinions and ways that people are thinking and conflict that arises. So how, how do you handle that?
[00:24:52] Gayla: Conflict is so interesting, especially I think for women because so many of us, and I was one of those who was socialized to kind of not deal with conflict to sort of just, you don't talk about it. You know, you sort of. uninvite yourself to that table. You sort of say, I'm going to vote with my feet in walk away.
[00:25:12] You know, that's how many of us, and same for men, it's not just a woman thing, but I definitely was socialized like. There are some things you have to confront, like you have to confront a bully, but otherwise, you know, you just walk away. Because just because that's kind of a hot thing right now and maybe let those embers, you know, let it cool if that fire cool.
[00:25:35] Let it be, get down to that ember stage. But. The reality is that there are just some issues that are going to create conflict and you have to be willing to have the conversations. And it's plural, usually when it's a big conflict to, to understand. The various perspectives and to really come up with a good solution.
[00:25:58] So I think having conflict at that this stage of my career doesn't really bother me very much. Right. Sometimes though I have to push myself to use the time and energy to get some things resolved, because sometimes you can recognize that that some people actually like conflict. And they don't want to resolve the conflict, you know?
[00:26:24] And so sometimes it's, it's not, it's not really going to be worth the time and effort. I hate to say that, but, but other times it really is a matter of, of having conversation, understanding of the person's perspective. And, and being real with each other and then trying to come up with a solution. And sometimes we also find, we just have to agree to disagree.
[00:26:45] But now at this point I really do try to deal with conflict quickly and as, as honestly, but as lovingly as possible,
[00:26:58] Carrie: that's a good way to handle it when you can right?
[00:27:02] Gayla: right.
[00:27:05] Carrie: Several people in your life along the way that you feel have influenced who you are today and what are their characteristics that you bring that bring to you?
[00:27:17] I guess.
[00:27:20] Gayla: I, yes. I mean, I have to tell you I mean, there are many people, first of all, my parents were both leaders, definitely in their work and in their family. And so I saw that strong leadership from a very early age. My grandmother. On my, my mother's mother, the one with the 17 kids and all those grandchildren she was also a leader and it was just in the way she held herself and how she moved.
[00:27:49] And communicated with people, you know, through our community, but also she was a trustee in you know, in a, in one of the local townships and was always willing to use her voice if she thought it could make a difference, but also. In terms of of what she would say and what she wouldn't say.
[00:28:09] And I remember observing that from a very young age. Really had a lot of mutual respect. People respected her and she respected them. I think that was really important. She, she said, and then my mother and turned, told this to her five kids you know, the rest of her life. And it was always, you know, remember.
[00:28:30] You know, no one else is any better than you are, but also remember you are not better than anyone. And I, that really helped me understand the need to live in community and the impact that we have on each other, how important it is to consider other people, because we have five kids, you know, if I got a pack of gum, I cannot have a stick of gum in front of the other kids unless I offered them a stick.
[00:28:56] So if I really wanted to have my gum, as soon as I bought it and got into the car and the other kids were there, I had to share. So that was probably really good. You know, I said taught me about leadership, but many people along the way. My youth group leader Diane Flint, we had several bits. She in particular, Diane, I was in youth group you know, as a middle schooler or a junior high kid, and also in high school to this day, she said, still sends me birthday cards and still and sends my husband and I an anniversary card.
[00:29:29] From my home state of Indiana and I just want a ministry and what a legacy and what a loving, committed, steadfast woman. And so that she's a leader. And so that would be an example of someone, but there've been many leaders that I had through the years. And they've all impacted me one way or the other.
[00:29:46] Those are just my early years.
[00:29:48] Carrie: Yeah, well, that was a very formative years too. So all of those people who are listening that work with young kids and middle school kids, how impactful that can be later on in life when you are your own leader and leading other people. Yeah,
[00:30:04] Gayla: absolutely.
[00:30:06] Carrie: Do you have any advice for our listeners to take steps right now to grow as a leader within themselves?
[00:30:14] Gayla: Well, some people may think this is a little hokey, but I mean, do you pay attention to leadership quotes because they are tidbits of food for thought. And think about those and see if those are something you want to put up and apply. And remember I did read books on leadership and I also read books, read books by leaders.
[00:30:35] I mean, my entire adult life, I've done that. I also think that you know, in my early years, probably my twenties, you know, I was one of those people I did read books that were about sort of, and there were a lot of books at that point kind of like about yourself, discovering your true self, you know, knowing yourself better.
[00:30:55] So I found that really, really informative. It was, I was curious about it, you know, it's so odd That a person would feel like they don't know themselves well, or they could know themselves better because we live with ourselves every day. But the truth is we are even as high schoolers and college students really busy and we might not know how we feel about certain things or, or we may not have had the exposure to things that we needed.
[00:31:20] I know that well, before I came to AG Bell, I, I thought to myself that, how did that person. Actually become a leader in our field of listening and spoken language and in an audiology and speech language pathology. And when I came to AG Bell, the first time, I was more clear about that path to becoming a leader.
[00:31:42] So again, I, it really. Is something that I try to be very intentional about when I see that people want to lead they're in a position where they're going to be forced to lead, to encourage them, that they can do that. And if I see that path for them, I tell them about it and pointed out to them. Get over here, maybe a little bit more of this, a little less of this, but reading books helps knowing yourself.
[00:32:06] Well, I think helps. Again, being the leader within being willing to manage yourself. That sounds a little silly, but it's true. You know, about what you will, and won't say how you will, and won't be what your bottom lines are about what you will and won't do.
[00:32:27] You know staying true to your ethics, knowing those, you know, those, those are all those things. You just about being a, what we kind of consider a good human being is a really good place to start. I think the opposite in terms of you could be a leader. I'm not sure if anyone buddy we'll follow you. If you're this kind of leader, but you can also be the kind of leader who's in charge of something or an organization, and you, you know scare people into following you or you manipulate people into following you because you kind of have a pied Piper type of personality.
[00:33:04] I think it's really important to respect individuals. And I think for who they are. And I think that's one thing I've always really tried to do. I've tried to really show and give people the respect that they are due. And also I think in turn, what has happened is maybe through the years, people have maybe felt that coming from me and felt that, that I was trustworthy.
[00:33:31] And you know, when, when you're considered trustworthy, People were, are more willing to work with you and then you can do really great things together.
[00:33:40] Carrie: Yeah, no, I agree. And thinking of great things as what is your vision as the chief strategy and programs officer for AG Belll? Do you have like a. The strategic objective or leadership objective that you want to see happen under yours?
[00:33:59] Gayla: yours?
[00:33:59] So our CEO, Emilio Alonso-Mendoza is he's his he's very. His big, big ideas, big thoughts in very open-minded. And I really appreciate that about him because he's not one of these people who says, well, why he's like, why not? And that is similar to my perspective in life and especially around listening and spoken language.
[00:34:26] And we, you know, we have been around since 1898 Ag Bell's been around since 1890, Dr. Alexander Graham bell, the same gentleman who invented the telephone as a scientist. Also started our organization and on his grave marker. It says, you know, Alexander Graham bell teacher of the deaf was really the incredible event or that he was, and the Renaissance man that he was and the people he knew in the crowd but what really weren’t crowds, the circles that, you know, he, he lived and worked in were pretty incredible, but his most, most valued professional role was.
[00:35:04] Of teacher of the deaf and he understood his impact. So I think for me, in what I want to see happen for AG Bell is similar to our CEO, wants to have see happen. What are our board and really several of our other leaders who are committee leaders want to see happen. And that is that the opportunity.
[00:35:27] To learn to listen and talk is available all the way across the world. That if this is what families want to see happen for their children, that services can be made available. Qualified professionals can be accessed, hearing technology, a good family support system in place, you know and that the services can be.
[00:35:51] Developed in the systems can be created to support that child to, into becoming a really happy well adjusted so therefore successful adults, and we spend most of our lives as adults. It may not be the most fun, but it can be. So we have a big job. Those of us who work with children. And families have a really big job and it's honored to do it.
[00:36:18] And that is because we impact our words, impact our behaviors, our attitudes, the messages we send really impact those with whom we work. And we know what we're trying to do is raise or grow this little person into a big person who is well adjusted and is happy. Has really, you know, found that leader within, or is on their way to doing that and making really great things happen, you know, for themselves and for others.
[00:36:47] 'cause that's what it's about. It's all about relationships and experiences in this world. Those are the things that we're going to remember at the end of our lives.
[00:36:56] Carrie: Wow. Well, I am so grateful that you have found your amazing servant leadership skills and that you have found your passion from a young age of like thinking about social work and speech pathology and audiology and all of the experiences that you brought along the way to where you're at now, and to be able to impact families and children and professionals and adults who are deaf and hard of hearing in a more global sense.
[00:37:28] Gayla: Yeah, I I'm really honored to do this work. I'm honored to have this conversation with you today. I mean, you know, you're part of the future, the present and the future, because you're a bit younger than I, and so, you know, you're doing the same thing. I mean, you're, you recognize your impact and the potential of the work that you do and how you can impact more and more kids.
[00:37:53] And I just want you to know how appreciated you are. For the role that you have in this, this work too. And in this life, I'm glad to be on the globe at the same time with you.
[00:38:05] Carrie: Right back at you too, I appreciate, I love having other people who to look up to have amazing leadership skills and you know, drop seeds along the way.
[00:38:19] Is there anything I didn't ask you that you wished I would have?
[00:38:28] Gayla: Well, one more thing, probably one more thing. Love what you do. So that would be advice that I would give that's another way to be a leader is love what you do. And if you don't love what you do, do something else, it doesn't mean you have to leave your field. But maybe you need to do something else in the field.
[00:38:45] It doesn't even necessarily mean you need to leave your job. You just need to find the things about your job that you love. But we just, we, we I've said this earlier in the call, we are here for a while and there is a beginning and a middle and an end to what we do, and we all want to look back and feel that.
[00:39:08] we we fulfilled, you know, at least one of our purposes in life through our career. So I would encourage you to, to love what you do. So if there are any students listening out there, you know, and there's a passion that you're feeling from this work, I wanna encourage you to do it. The other thing I want to say goes with this love what you do, but understand in every job.
[00:39:31] whether you're a mom, a dad, cause that's a job too. Whether you are speech language pathologists, audiologists, social worker, educator of children who are deaf or hard of hearing, I think will be most of the people listening to the podcast in every job, there are parts of the job. You're just not going to like, don't spend don't waste time saying I'm not good at such and such, or I don't want to do such and such or
[00:39:59] I kind of feel like I'm not being responsible because I haven't done such and such instead name it. This is something I really don't like to do. So I probably need to do it at a time when I can give it my full attention, or I can do this part, but this is how life is it's. You know, you do have to take some of the things you don't like to do with all the other things that make life good.
[00:40:23] Carrie: That's really good advice because I think you're right. Everybody has something in the job that they dislike. And, but then you have to think about all of the other wonderful things that you can put your energy to, to make a difference with what you do love.
[00:40:37] Gayla: Yeah. Well, and we all have to do adulting. So I think sometimes that's the other thing is as, as you, as you grow and learn, you recognize how important.
[00:40:48] It is for you to be willing to be the adult and to do the adult things. Because by being the adult, you're kind of saving that space for people who are younger than you to learn and grow, especially children to learn and grow and become who they are. So, you know, you're strong enough and able enough to be the adults.
[00:41:07] So I think it's not always fun. So, and it's a good way to live in community with other.
[00:41:16] Carrie: Well, I think you have empowered all of our listeners to be better leaders, wherever they might be in their leadership journey, whether it's at a small step or a big step, I think this is an incredible conversation. If people want to get a hold of you and reach out to you, where should they go?
[00:41:35] Gayla: No, they can reach out to me. I'm going to give you both email addresses my work email at AG Bell G G U I G N as in Nancy, A R D as in dog. So [email protected]. And then my personal email is [email protected]. Glad to hear
[00:41:59] Carrie: from. Well, thank you, Gayla, for being a guest today on the empowEAR Audiology podcast.
[00:42:06] I really appreciate it. And I am sure that all of our listeners are going to really appreciate this conversation as well.
[00:42:14] Gayla: Thank you so much, Carrie. Thank you.
Announcer: This has been a production of the 3C Digital Media Network.

Episode 38: empowEAR Audiology - Drs. Jessica Sullivan and Lauren Calandruccio 

[00:00:00] Announcer: Welcome to episode 38 of empowEAR Audiology with Dr. Carrie Spangler.
[00:00:16] Carrie: Welcome to the empowEAR Audiology podcast, which is part of the 3C Digital Media Network. My name is Dr. Carrie Spangler, and I am your host. I am a passionate audiologist with a lifelong journey of living with hearing challenges and this vibrant hearing world. This podcast is for professionals, parents, individuals, with your own challenges and those who want to be inspired.
[00:00:45] Thank you for listening. And I hope you will subscribe, invite others, some lesson and leave me a positive review. I also wanted to invite all of you to visit and engage in the conversation on the empowEAR Audiology Facebook group. Transcripts for each episode can be found at www.3, the number 3, C digital media network dot com under the empowEAR podcast tab.
[00:01:18] Now let's get started with today's episode. Podcast listeners. I hope you will enjoy this episode. As much as I did. This was such an engaging conversation with two incredible audiologists who are making a positive difference through a mentoring program called IMPACT, which stands for innovative mentoring and professional advancement Through cultural training, these two audiologists from two different universities and two different parts of the country have connected with a common interest in advocating for diversity in a profession where diversity is lacking. Let me share a little about these two amazing audiologists.
[00:02:08] Lauren Calandruccio is the Louis D. Beaumont University Professor II and an Associate Professor in the Department of Psychological Sciences at Case Western Reserve University. She is the recipient of the Case Western Reserve University Carl F. Wittke Teaching Award for Excellence in Undergraduate Education and the J. Bruce Jackson Award for Excellence in Undergraduate Education. She also received the ASHA Fellow for her outstanding work in the areas of teaching, research/publications, and service to ASHA. Her research area is focused on speech perception, with an emphasis on understanding how linguistic experience contributes to performance.
[00:03:07] I also have Dr. Jessica Sullivan joining today. She is the interim department Chair and assistant professor in the Communicative Sciences and Disorders department at Hampton University. Dr. Sullivan is an affiliated research scientist at Haskins Laboratories at Yale University. She is co-director of the IMPACT program, a collaborative mentoring program between Case Western Reserve and Hampton University. Dr. Sullivan has served on numerous committees and boards with the American Speech Language and Hearing Association. Recently, she was elected to the Board of Director for the American Auditory Society. She received her Bachelors of Arts in 1996 from Louisiana State University and Masters in Deaf Education from Lamar University in 2000. She received her PhD in Communication Sciences at the University of Texas in Dallas in 2010. Dr. Sullivan has received numerous awards, honors, and grants.
In this podcast you will hear Lauren and Jessica share personal experiences of their students and how IMPACT has positively influenced at Case Western and Hampton University.
[00:04:29] We discuss some statistics which are eye opening, and I encourage you to visit the ASHA 2020 demographic and employment data that is linked in the show notes for a closer look at how particularly non diverse, the fields of speech pathology and audiolog really are. View the show notes for additional links for IMPACT.
[00:04:54] I hope this episode sparks you to think about promoting diversity in your current roles. Join me for the empowEAR Audiology podcast.
All right. I am so excited to welcome Dr. Jessica Sullivan and Dr. Lauren Calandruccio to the empowEAR Audiology podcast. Welcome both of you.
[00:05:17] Jessica: Thank you for having us.
[00:05:19] Lauren: Thank you so much for having us.
[00:05:20] I love your podcast.
[00:05:22] Carrie: Well, thank you. I appreciate you guys both being here today, and I'm really excited about today's episode, but before we kind of get into the meat of the episode, I always like to ask my audiology friends, how they ventured into the field of audiology would either of you want to start with just, how did you get here,
[00:05:48] Jessica? You want to start?
[00:05:52] Jessica: I was actually the kid and undergrad that couldn't decide between speech and audiology. And, um, it was a roundabout way, but at the same time, while I was taking my PharmD classes, my sorority used to volunteer at the Louisiana school for the deaf. So that being introduced to deaf culture kind of was my foray into getting like, okay, making my decision of what I wanted to do and how I wanted to spend the rest of my life.
[00:06:25] Carrie: Okay, well, that's cool. What about you, Lauren? Anything that headed you that way
[00:06:31] Jessica: that way?
[00:06:33] Lauren: Um, I was an undergrad at Indiana university and I always liked health and science. Um, but I definitely did not go into this path intentionally. And I was probably a junior and had to declare a major. Um, and I had about four choices and speech and hearing was one.
[00:06:56] And my mother who worked in a school district and always heard about what a great job outlook it was for speech pathologists encouraged me to pursue speech pathology. And it was not the right fit for me. As soon as I started taking these classes, I realized that, and I always say, um, it was my undergraduate professor, Dr.
[00:07:16] Nick, Nick Hipson, who first showed me the cone of
[00:07:20] Jessica: light.
[00:07:25] Lauren: Um, and it was that audiology class that I was lik this, I would like this. Um, but honestly I was really unsure for a very long time. And now I feel like everything just worked out wonderfully because I love wherever I am at
[00:07:41] Carrie: Well, good. I always like to hear everybody's backstory. I've had they get into the field because most people you talk to them again, what are you?
[00:07:50] And I'm like, I'm an audiologist. And people are like, well, what's that? So to get into the field, I like to hear the backstory, but on today's episode, we are going to focus on the innovative and Collaborative program that you guys have developed called IMPACT, which stands for innovative mentoring and professional advancement through cultural training.
[00:08:12] And before we go deep into that program, I'd like to step back and maybe have you guys give a little bit of background about the program and, you know, from more of a 360 degree angle of how a lot of universities are, have a goal or a mission to promote equity and diversity and inclusion, but you also saw this need at your respective universities as it relates to undergraduate programs and graduate programs in speech and hearing.
[00:08:45] So why did you see that?
[00:08:51] Lauren: You want me to go? You can start. Okay.
[00:08:54] Jessica: Um, so it started with Lauren, I think called me. Did you call me? We kept or, yeah, she called me because she had an issue with a student, um, who had been her student in undergrad and went to grad school. So then we started, um, Our session on what the problem is in our profession for these students of color, who are really good students that are talented students.
[00:09:26] And if they land in the wrong seat, they can be beaten down or a students that don't get the chance. So this is pre George Floyd, pre pandemic. We're having these discussions and I think it was ASHA 2019. We actually started pen to paper, kind of staffing out this program of what it would look like for us.
[00:09:52] And we wrote the grant, submitted the grant in March of 2020, when we were
[00:10:00] Lauren: told to shut down
[00:10:02] Jessica: right before the shutdown was submitted, the grant and we were told life will be back to normal in two weeks. And it wasn't, and it's not. And we found that in August that we were funded, but by that point, we're knee deep into COVID.
[00:10:19] So we had to pivot. So you want to jump in Lauren? Yeah.
[00:10:23] Lauren: So, um, we, we first started talking about this because I reached out to Jessica because she's a black audiologist and a good friend of mine. Um, and I wanted to get her opinion and perspective on how the best way. I could mentor this student because some of what she was experiencing, I haven't experienced.
[00:10:46] Um, and so I could help her with certain things, but not with everything. And so I asked, just get to help me out and to give me advice. Um, and that kind of was what really precipitated a lot of conversations and, um, When we started having these conversations, Jessica and I both had just recently taken new appointments.
[00:11:07] Um, we like to say that we're twins. We have lots of similarities in our lives. And one of them is that we've worked at three different institutions. And so Jessica had just gotten to Hampton university. I had just gotten to Case Western reserve university, um, case Western reserve university is in the city of Cleveland
[00:11:26] It's right downtown. Um, and it's, it is in a black neighborhood. Um, and we are in a county that is 58% black. Um, and we are lucky to recruit diverse students here. But if we're going to recruit diverse students, I always say, we need to know how to mentor diverse students. Jessica works at Hampton university, which is a historically black college.
[00:11:50] Right. So many of her undergraduate students are black. Um, and so almost all 98% number
[00:11:58] Jessica: it's I think with Hampton also it's um, We have a lot of, um, well cared for students. So some of the social issues that some of the students that may have a Case may not be the same issues that our students have. Some of our students specifically come to Hampton because they've grown up in, um, predominantly white communities and they want that.
[00:12:29] Cultural experience and the nurturing part of it. And they're really high qualified students, but they still would have trouble getting into graduate programs.
[00:12:40] Lauren: And so we're trying to play off of, we had a situation here at Case that I'm very lucky that we have a lot of diverse students in the undergraduate body, but some of our minority students don't always feel included, um, at Case in general, Um, and Jessica was having an issue that she had really strong students, but they were still having difficulty getting into graduate school.
[00:13:05] So that was where the whole idea for IMPACT came together, that we could work together collaboratively and plan our strengths. Um, I always like to remind people. We have great options and opportunities at Case Western we're a really wonderful school, but we had no faculty of color. In fact, all of the communication sciences faculty are white females.
[00:13:29] Um, and so my students get to interact with the Hampton students and then the Hampton students also get to interact with our students and our faculty. And so we're really pulling on all of our best resources and joining together as a team.
[00:13:46] Carrie: So let's just take a step back. And I think this was an ASHA, just some data about our fields.
[00:13:53] right audiology and speech pathology. And I think it was about 18% of audiology students identify as nonwhite, according to a 2020 survey and about 8% of speech language pathology. Um, identify as nonwhite, according to 2019 data, um, which was part of an ASHA American speech language hearing association, uh, survey.
[00:14:18] Why do you think that is? As far as I, you know, these current statistics and our field being that low?
[00:14:31] Jessica: Well, I think you see a flip. And even some of the HBCUs, you're going to see the same flip, where you can see a pretty diverse undergrad population, and then it flips to the graduate school. So a lot of graduate programs are homogeneous, they all look the same.
[00:14:52] Um, and I've been in situations where I've worked at predominantly white institutions. And if they say, oh, well, we need to think about diversity. They are going to go. And they're just going to cherry pick one kid who doesn't stack up and look like the other kids admit them, then they're this, they're the problem child.
[00:15:14] They're those person that is always the student of concern. And then next thing you know, they don't finish. So it's a lack of mentoring and a lack of focus on mentoring, I think at the graduate level. Would you agree that. Part of the problem, Lauren?
[00:15:37] Lauren: I think there's a, I think there are so many problems, right?
[00:15:42] It's part of the problem, but, um, just to go back to the numbers Carrie, right? Like 96% of ASHA's constituents are female and 92% of them are white. And so I always like to tell people, you know, the number of times I hear someone tell me I got interested in speech pathology. Um, neither Hampton nor Case Western has an AUD program, I should say.
[00:16:09] So we have, we have a PhD program, a clinical master's degree for speech path and then an undergraduate program. Um, They, you know, so many of the students say I got interested because my mom's an SLP. My aunt's an SLP. Well, if 96% of them are white, right. They're telling their children, their nieces who are also white.
[00:16:34] Right. And so. Since certain groups of color in this country have less access to some of our services. They don't have knowledge of the profession for those reasons either. So some of it is just coming in. You get these really how we recruit a very diverse undergraduate body at Case is we go look for the students who say things like we're very interested in language.
[00:16:57] We're very interested in science. We're very interested in acoustics. And we say, have you ever heard about us? And they always say, no, we haven't. But once they hear about us, they're very interested in our field. Right. So, um, right at Hampton, the undergraduate body is diverse at Case we've worked really hard to make our undergraduate body diverse in our major.
[00:17:24] And I think that's effort can go into that space, but then those students need to be mentored so that they can. Be successful in graduate school. Yeah.
[00:17:36] Jessica: So one of the challenges I have at Hampton, um, even for our undergrad students, um, other, our colleagues who have hospital programs or school districts, We'll I've had a person who places students say, oh, well, certain places just won't take Hampton students.
[00:17:59] Not that they've had one, there's just a built-in bias. That same facility will offer a shadowing experiences to a predominantly white institution on the other side of the river. Um, but not our students. We, we didn't even know this was a thing or an opportunity. So half the time it's even though these are kids that could compete at the same level, I am constantly trying to find ways to help give them those experiences and access because they can get it great.
[00:18:34] But just because of the name is Hampton, because it's an HBCU, there are certain institutions that have a bias. Um, just based off of that. Should I tell them about Gabby
[00:18:52] Carrie: Sure Lauren,
[00:18:55] Jessica: Lauren, Lauren,
[00:18:56] Carrie: would this be a good question? One of my question for both of you, were there a certain student or experienced, like mentoring experience that you had that really kind of got you thinking about the IMPACT program?
[00:19:13] Jessica: It is
[00:19:15] Lauren: a culmination of experiences. I don't know if Jessica would want for
[00:19:20] Jessica: me So I see myself in all of our impacts students in a way, right.
[00:19:27] So I was the one who went to predominantly, I've never went to an HBCU. I, all of my education has come from predominantly white institutions and I'm always. The one person of color in my classes, you know, especially African Americans. So I think that's one of the differences. So even those things, if I didn't, and I think I was lucky, cause I didn't even realize how much mentorship and the right mentorship could make or break you.
[00:19:58] And I was lucky and had good breaks. I was lucky that the Calier center was a good place for me. To start my PhD and not just my immediate advisor, Linda Thibideau, but lots of faculty there. Have been supportive and are still supportive of not just me, but they're supportive of my students. So, um, I was a lucky one because if you went to any of the listening sessions last, was it summer of 2020?
[00:20:31]Its horrifying the things that people still go through. These are things that happened back in the sixties. And, you know, there was like Martin Luther, king marching and giving speeches and all that stuff was so far in the past. These things still happen today. And when you look at the numbers yet 18% of audiologists or don't identify as white, but of that 18%, I would say probably less than 3% are probably African-American.
[00:20:59] When we switched from the AuD from a master's to an AuD, you deem all of the, um, audiology programs at HBCUs closed. Couldn't afford to keep those very expensive programs going. So that started to disenfranchise. And like I say it all the time. A lot of African-American audiologists. I have people who still to this day will tell me they wanted to pursue audiology, but they were counseled out of it and undergrad and were forced to go to speech.
[00:21:32] Cause they're like, oh, well you could do speech speech is easier. Luckily, one girl, I ran into it in a Basel conference was telling me her story. And I was like, okay, finish getting your degree in speech. If you still want to do audiology, this is what you need to do. She listened and now she's dual certified, so she's way better off because those numbers are also going down, but she shouldn't have had to jump through all of those hoops just to become an audiologist.
[00:22:04] Carrie: So it's almost like at that, well, first at the level of, um, I guess advising, right, and the undergraduate type programs that it, education needs to start. I was going to make them that too. But yeah,
[00:22:23] Lauren: I was going to mention too, because not all the audience might be familiar with the listening sessions Jessica was talking about.
[00:22:30] So she's referring to, um, after the murder of George Floyd, ASHA hosted several listening sessions. Um, that were not recorded. You can't get access to them anymore because they were about racism and, uh, things that our peers were dealing with. Um, they were emotionally wrenching sessions with horrifying stories throughout better.
[00:22:57] Like Jessica said happening all the time. These aren't things that are dated, um, they're happening all the time. So this goes beyond graduate school, right? I mean, we have to continue to be mentors and continue to be allies to all of our colleagues throughout our whole careers. Um, because a lot of what our colleagues of color have to deal with when they begin working, go beyond just being a clinician like it is for some of us, that's the only thing we have to think about.
[00:23:30] Um, so anyway,
[00:23:33] Jessica: yeah.
[00:23:35] Carrie: Jessica, Did you ever have an experience yourself of being discriminated against in like school or your practice profession and not too much? You, you felt like you were kind of lucky in that respect.
[00:23:51] Jessica: Definite microaggressions. I remember.
[00:23:58] One time. There was this one professor that every time I would walk down the hall, um, and I was still a student, um, would stop me to ask me where I was going. I'm like, I'm going to the lab. Like it w it became to that point, it like the other students were aware and they were like, what is the deal? And.
[00:24:21] You know, eventually that person left and then it was fine, but you know, always stopping like, well, where are you going? What are you doing? What am I gonna do? You know, I know the code to get in. Like it was, you know, but those kinds of things, I think they didn't happen at a certain degree to where it would just be like, are you kidding me?
[00:24:44] And I was lucky that I had such a strong foundation and family. That I kind of was sure of who I was. So I didn't really let those things deter me, but those sorts of things happen all the time. You have to learn as navigating this world is an African-American woman that, you know, how I react, the tone I use, all those things could be used against me.
[00:25:13] So I think Lauren and I have like this great, good cop, bad cop dynamic. Whereas she can, she has, you know, the privilege to be the hot head in, and I'm always super, super calm about it still just as upset. But I think it just shapes how you have to approach things, because I really want people to focus on what I'm saying and how I said it, or, or to even use that as a way to negate whatever argument or whatever it is that I'm trying to get across.
[00:25:46] Carrie: So I feel like just from you talking a lot of your, I mean, your personal experiences and lived experiences and having a strong family foundation and support that way, really probably shaped how you would foresee a mentorship program
[00:26:05] Jessica: happening. Well, yeah, because your parents start to tell you at a very early age that you're not gonna have it easy.
[00:26:14] You're gonna have to work twice as hard. And so that was just instilled in me. And so I'm the same way with my students. So I'm just like, this is not going to be acceptable. If you're planning to go to graduate school. No, one's going to cut you any slack. If anything, you need to be turning your work in early, because they'll look for any cracks to say, see, they're, they're not as good.
[00:26:41] They are deficient in some way.
[00:26:45] Carrie: Do you have a specific story that you can share that kind of gives you insight into, because what I want to talk about next is like the positive IMPACT program that you guys are both involved in. But I think sometimes personal stories or somebody else's personal story really gives lights that fire to what a product or a program might end up at.
[00:27:13] Lauren: Can we do the Gabby story? I think so.
[00:27:19] Jessica: Okay. So we had a student who was in IMPACT. She finished last year, so she's in her first year of grad school. Um, super good student. Um, and she applied to seven different programs. I mean great essay. Cause we really worked hard with our students on their essays and she had top of her class, like literally the top of her class in our department, like won awards was up for the president award, the president's cup at Hampton university, which is extremely prestigious award to even be asked to submit for that award.
[00:28:00] So really great student. Um, and. She wanted to at least apply to her flagship university. You back in the state where she's from. And, um,
[00:28:17] I kept trying to dissuade her. I think Lauren also tried to talk her out of it and that school was her only rejection, but we knew we knew that was coming, but luckily she is a kid that is. Tough. And she was able to go on and she got lots of offers and scholarship offers and she's doing great right now.
[00:28:42] But, um, for some kids that may be. I don't have someone to kind of advise them and help them curate. Like this is a reasonable list of schools and you can have reach and there should be like, the people should have those conversation. Lauren and I both sit on admissions committees and. I think our IMPACT students' essays are just like in a whole nother category compared to some of the ones like I think they could be.
[00:29:14] I think everybody needs someone to kind of help them and help them think things through and edit and make sure you're presenting your best self.
[00:29:25] Lauren: As the mentors, we make them work on them. There they're provided with writing coaches That helped them learn how to be better writers. They spend months editing, revising, rewriting editing, and it shows, um, I, I personally think our students' essays stand head and shoulders above other students' essays because you could see the time that they put.
[00:29:53] The passion that they put in the work that they put in. Um, but you know, that's not obvious to students that they need to do those things to stand out. Um, and that's where the mentoring really comes into play. I mean, this doesn't get at why we started the story Carrie, or started the program, Carrie, but I love to tell this story.
[00:30:17] Um, so like we said, Hampton is an HBCU Case Western is not. Um, Case Western really struggles, recruiting faculty of color. In general, we have very few faculty of color across the whole university and, um, Uh, we have a student who is in the IMPACT program, but when they, they have to interview with us. So the students apply, they submit an application, they have to write an essay.
[00:30:45] Um, Jessica and I review these applications and then we invite students to intern. And, um, you know, Jessica's name is not assuming one way or the other Jessica Sullivan is a very general name. It could be anybody. And so she just assumed that Jessica was white. And when we got on the interview, we were in a zoom room and the second she saw Jessica's face, I mean, right.
[00:31:16] Jess, that was. Just completely changed. And she had a smile from ear to ear and she was flabbergasted. But Jessica was black. And I think Jessica actually was like, teasing her. Like, did you not expect it to be me? And the student said, no, I did. I didn't, I didn't expect you to be anything but white because everyone I've met in this profession, um, at Case, and, and not at Case and the clinical experiences she's had the opportunity to have, they've been doing.
[00:31:53] Um, so that was just, it was very heartwarming. Um, and I, cause I always say, you know, there's, I've had wonderful male mentors. I've been very blessed to have amazing mentors. Um, but for me, having a female mentor has been very special in my life. Um, and they can connect with you on levels that other people can't right.
[00:32:15] And the same is true for, um, our students of color.
[00:32:20] Jessica: Yeah. So for me, because, you know, I really didn't have any professors that look like me. I had great mentors, but they didn't look like me. Um, so it wasn't until I went to my first and BASLH conference after participating in MSLP that I met, um, Dr. Gwendolyn Wilson.
[00:32:43] And she was at the time, the chair of, um, The department at South Carolina state, which is an HBCU and she was the VP of. Um, academic affairs for audiology forASHA. And, you know, I met her at, in BASLH and then later on, um, at the international Congress of audiology in Hong Kong of all places, I see your again.
[00:33:05] And so really only two African-Americans that I saw the entire week we were there. And from that moment on, like, we were, you know, like peace. Like I would call her, she would see me every asset and she would want check-ins. So every professional decision I made. To this day, I've run it past her. Like she's, she's in on everything and she's supportive of me now.
[00:33:31] She's retired now. So she, you know, gives me advice as being a new chair. So I think mentorship is not something you pick up and put down. I think it's a, it's a lifelong commitment. If you were saying I'm going to mentor you, that means I'm walking the walk with you along the way. And that's what Lauren and I do for all of these students.
[00:33:53] Carrie: So just the backup, cause I want to dig just a little deeper into the like bolts of theIMPACT program. But if you would just give like, you know, an elevator speech of, if somebody asks you, what is the IMPACT, what would you say?
[00:34:11] Lauren: I would say that IMPACT is a year long mentoring program. That's how we originally wrote the proposal for the grant.
[00:34:21] Our original idea was it for it to be one year and it has continuous mentoring throughout the entire academic year. So it's consistent mentoring, not just a one-off mentoring. Um, now we really have to say. Annual mentoring because the students love the program so much that everyone wanted to continue.
[00:34:44] And so the students that didn't even graduate, we allowed to stay in with us. Um, they like to refer to it as an IMPACT family. Um, and so, you know, it's more than even just a year now, but that original like curriculum that we developed was a year long program.
[00:35:02] Jessica: Yeah. And I would say that the curriculum is designed to kind of help them elevate professionally and also to kind of give support and understanding to things that they may face.
[00:35:15] So we talk about those tough conversations about racism and microaggressions and all those things through. Cultural empathy book club. And I think that kind of helps them. It takes the sting out of it, in my opinion, like if you read about it and intellectualize, it, it kinda takes, however, people may want to use it as a weapon.
[00:35:37] It kind of takes that away and they can kind of still persevere. So I think. The nuts and bolts of IMPACT, but it also develops networking. And I think that's another key piece because we bring it because of COVID it changed. Right? So now we're bringing in our friends and professionals to help us talk to them about leadership, building your brand, professionalism, um, career options and all of those things.
[00:36:06] So I think that was something we didn't originally think of, but I think it adds a lot
[00:36:11] Lauren: of. Yeah. So for example, Carrie, in the first year of the programming, there were 12 of them. That were spread throughout the entire academic year. Um, so some of the events, events included things like book club discussions for our cultural empathy book club.
[00:36:28] That's what Jess was talking about. Um, some events included, included virtual tours of state-of-the-art research facilities. So our friends at Boys Town, national research hospital helped us with that. Um, and our friends at the university of Pittsburgh, CSND department helped us with that and it allowed our students.
[00:36:48] So case Western and Hampton are very small programs. So our students are only exposed to a few faculty. Um, so it was their first opportunity to see really state-of-the-art laboratories doing cutting edge research with all different types of disciplines. Um, and they were just blown away by what you can do and research and look into in our field.
[00:37:14] Other events include what we call our virtual family dinners, where we all get together on zoom and we eat via grub hub, usually to a theme that the students choose. Um, so actually we just had one this week and the theme was Asian food. Um, and. Two of our friends that are, um, really awesome professionals and who are also people of color in, in communication sciences.
[00:37:43] And, um, the students get to hear their stories. They get to hear their successes. They get to hear some of the trials that they've gone through. Um, and they learn from them. So it's like it's developing them professionally. It's it's increasing their network. Um, it's helping them to see people who do look like them, um, do really amazing things in our field.
[00:38:09] Um, we also have writing workshops, um, where everybody gets together and. Um, educated on how to be a better writer. And I, I think Jess will agree with me. We love these two because the writing instructors are showing you how you teach someone to become a better writer. So I think a lot of faculty. We'll agree.
[00:38:31] We weren't taught how to teach other people how to write. Um, so we've learned a lot, uh, not just editing things for people, but teaching them. This is how you become a better writer. So that's pretty much what the activities look like and they're spread across the year. Um, and we all get together and Case together.
[00:38:54] How often
[00:38:55] Carrie: do you guys meet
[00:38:58] Jessica: once a month? Okay. You usually, some months may have two events, but usually it's like January was a little busy, but typically we only do once a month. And I will say that having those family dinners for that first cohort really elevated them seeing themselves doing a lot of different things in possibilities, because a lot of those kids looked at some of the researchers who like, maybe I'm going to pursue a PhD and some are like, well, maybe I'm going to change my mind.
[00:39:28] And I'm going to reach for like training. Apply it to the university of Pittsburgh or start to change, you know, what they can see themselves doing. It kind of broaden their perspectives in a lot of ways.
[00:39:41] Lauren: Yeah. I mean, it did broaden their perspective. I'm thinking of. Uh, one of our Hampton fellows, who was, it was so inspired by the tour at Pitt.
[00:39:50] And then she applied for the summer acoustics research program that acoustical society just started running last year and was chosen for that program and got to have a whole summer experience in it. Um in acoustics and then
[00:40:05] Jessica: I applied for the spark award and got that. And so she's been like on fire, on our roles. So we, um, we're patiently waiting to see what grad school she's going to choose next.
[00:40:19] And I will say that this is the second year. Um, We will actually have two students applying for AuD programs. So stay tuned. You know, we are, um, still going to expand those numbers and percentages, you know, when two at a time, I guess,
[00:40:39] Carrie: Uh, how do you, uh, you said this is kind of your sec, right? Your second cohort of students, and you said most of your students were like, I want to come back to the IMPACT family cause they really enjoyed themselves.
[00:40:51] How do you envision those, that likes group of students that has already kind of gone through that first year, carrying that torch forward either to the first year when that was there or beyond?
[00:41:04] Jessica: We want to invite them back. And I think we've talked about ways to invite them back and we do kind of keep them abreast of what we're doing for IMPACT.
[00:41:12] We were lucky enough at ASHA this year to have our first in-person impact family dinner. Um, and some of those students were there and able to come and meet the new ones. So it was, it was pretty special. I thought, because that was the first meeting we were in the same
[00:41:31] Lauren: space. We like to tease them that they're the future family dinner guests, which they think, you know, how could I be that person?
[00:41:40] Um, because they're looking at people like Dr. Noma Anderson, past president of ASHA, and it's hard for them to see themselves really there yet, but we say no, in that in a few years, when you are having a successful career as a clinician or in a PhD program, you, you will be our guests back in this program.
[00:42:00] Um, and this year actually, Several of our graduates are joining us for our cultural empathy book club.
[00:42:07] Jessica: Yeah.
[00:42:08] Carrie: Well, that's great because then they learn like the value of being a mentor and how to mentor someone else.
[00:42:16] Jessica: And the funny thing is I have a Hampton student that happened to have joined us for our book club and she is consistently.
[00:42:26] Begging me to start IMPACT for the grad program. And then how can she be involved in what? So it's kind of infectious at how this is, this is actually moving. So, um, it, it has legs and I think it's in a good way. I think this is inspiring our students to realize that, yeah, you had good mentors. Now you can be a good mentor.
[00:42:50] And I think that's one way that we can long-term make a difference in the change. Right.
[00:42:56] Carrie: Yeah, it sounds like you have some already next steps for your program, but do you have, I mean, the other next steps that you guys are already thinking about and how are you going to, do you have to apply to keep it funded or is it going to be so funded?
[00:43:14] How does that work?
[00:43:16] Lauren: So we've got a lot of questions there. CarrIE that. The first thing is, you know, like you, the point that you made about instilling in our students for them to be mentors. One of the things we added to this year's programming, which was different from last year was a senior mentorship night.
[00:43:36] And that was one of the ways be kicked off of IMPACT this year, where our more experienced impact fellows at Hampton and at Case met with the younger students. Um, that we're in the second cohort of students and really talk, talk to them about what to expect and, um, really took them under their wing. Um, so that was really exciting to watch.
[00:43:59] And, um, I think we can see that our hard work pays off because they are also learning how to mentor the next generation. And that's kind of the point, right? The more number of people that we can expand and increase diversity, then those people inspire others to come along with them. And then it keeps growing and growing and growing Jessica.
[00:44:20] And I know that Hampton and Case Western can't change everything. Um, but we can hopefully, you know, when people listen to the podcast and see our students at ASHA giving presentations and are inspired to do similar programs at their universities, um, the IMPACT program was first funded through a grant from ASHA office of multicultural affairs.
[00:44:44] Um, and so that's what funded us to be able to do this program initially. We are very lucky because we were given a gift by the call group. Um, who's the parent company of SimuCase and continue it, um, to keep us going this year because they saw the value in what we were doing. Um, and they really didn't want to see.
[00:45:05] The program have to stop simply due to funding. Um, we wrote and submitted an NSF grant last year that got good feedback, but unfortunately it didn't meet the pay line. Um, that happens a lot with grants. It is hard to get them funded and we're working on another one right now. Um, so we hope we can get that funded.
[00:45:27] Um, you know, Kind of like that Carrie, right? You need money and you need support to do these programs. But I would encourage people that are listening was that our grant was really small through ASHA. And what we accomplished was pretty tremendous on the budget line. We had, honestly, it was a small enough budget that many departments could probably squeeze it into their annual budget.
[00:45:51] Um, and we had great success. We had students who were not going to even apply to go to graduate school, not only apply, but then get into every program that they applied to our three seniors who applied to graduate school, all got scholarships for their programs. Um, we have another Big a group of seniors going through right now or admissions.
[00:46:17] And I think personally all their packets look great. So I think we're going to have really great numbers and not just in graduate school, but in leadership, one of our fellows is the current president of national NSSLHA. We have fellows who weren't involved in student leadership at all now on the executive boards, that there is the groups.
[00:46:37] Um, like Jessica mentioned, one of our students won the SPARK award through ASHA. Was that the ASA summer camp. Um, so we're really proud of them. They're all working really hard and with the right mentorship and guidance and their work ethic, things happen. Right. And that's how we make the change.
[00:46:56] Jessica: Yeah.
[00:46:56] And I think they are examples to the other students that aren't in IMPACT within our departments, because they're looking at them like, wow, like you can do all of those things and you're still, you know, your grades are good, everything's good. But you're, well-rounded with deep knowledge in the profession.
[00:47:16] And so I think that's the other thing, just having access. And since Lauren and I've started, we've had other friends reach out. Figuring out ways, how to help and how they can help our students get experiences. So not that they need to be given special or preferential treatment, just have them in their packets, look like everybody else and just give them the same opportunities and then let them compete.
[00:47:45] Carrie: Is there anything, I guess I think all of that, like the, uh, success stories that you guys just shared right. There is huge as far as the IMPACT. And I could see, um, people listening and especially at a university type program, thinking how could we. Involved or how can we start something in a mini type of a way?
[00:48:08] Do you have a place where people could go and kind of see your curriculum or they could reach out to you?
[00:48:17] Lauren: They can definitely reach out to us. They can reach it. We, we haven't published anything Carrie that describes everything yet. Um, but though I, I do think we will eventually write about our experience, but we're always happy to talk to people.
[00:48:34] We have lots of ideas because we do it all the time. You know, one of the things about IMPACT is we have 12 events throughout the year, but we have a slack. That we talked to the students almost daily on, um, they have our cell phone numbers. We have group chats. Um, we are in constant communication with them.
[00:48:55] And so part of it really is helping to build a community where your students of color feel included right. At an HBCU. The students are included. There aren't separate groups, but at predominantly white institutions, there are typically groups of students and unfortunately the students of color don't always feel included.
[00:49:16] Right? So the biggest thing that I would encourage universities to do is try to recruit students to the major by what we do at Case is. Ask our students to put a presentation together about speech and hearing. So they made this really cute Canva presentation, five minutes long about all the opportunities and the diversity within our field for both speech pathology and audiology.
[00:49:43] And they give that presentation at the black student association meetings at the Hispanic student association meetings at the first gen student association meetings. And they go across campus trying to Spread the word about our profession. And because of that, we have a very diverse undergraduate cohort, right?
[00:50:04] So that's like the first step. And then once the students come into the major, you have to include them. And that's just not always going to happen automatically. You have to create that culture.
[00:50:17] Jessica: Yeah. And I think give their all, it's pretty homogeneous at Hampton, but it's still an important thing of, you have to create the culture in your department that students feel like they belong and they feel welcome.
[00:50:34] Um, I also have a little more support with the McNair program that we have the Ronald McNair program that, um, a lot of universities may have for minority students are first gen students to get involved with research. So that's another support and some of our IMPACT students are also McNair students as well.
[00:50:56] So that also kind of helps support them. Because again, we're trying to get them to go and present at conferences in. How you present at a conference. And so McNair also fits the bill for some of those things. Okay.
[00:51:10] Carrie: Yeah, a lot of, I think what you guys both shared just to things that different universities could put in place, um, without having a grant, but like you said, creating that culture, um, and opportunities that students and like Lauren, and what you said, having students put together a little five minutes, Canva presentation that they take to different organizations on campus and try to recruit, and that's something that's easily done.
[00:51:39] Um, but like you said, that next step, if they get into that, they still need to be supported, um, within that department as well. Is there anything that I didn't ask you guys about IMPACT that you want to share for our listeners today?
[00:52:00] Lauren: I'm looking through your list of questions, Carrie
[00:52:06] Carrie: that kind of even, you know, a story that you want to end with. Um, how IMPACT has benefited you as professionals, or maybe, you know, changed you.
[00:52:21] Lauren: I
[00:52:21] Jessica: think for me, Being able to see all the students at ASHA and how well prepared our impact students were and how they interacted. And they were navigating like, and this was a small ASHA in comparison to what we typically would navigate.
[00:52:38] But for a lot of them, that was their first professional conference. Or maybe even first trip out of a state by themselves. Really? Um, I think that was, that was special to me to see like the growth, like watching them from when they first got in IMPACT and we're having our family dinners and, you know, it's the pandemic t and we didn't know what this was, where this was going to take us, but I am happy.
[00:53:08] That we did it. And I'm enjoying the ride with Lauren, um, Lauren, when he,
[00:53:15] Lauren: yeah. You know, I I'd love seeing them at ASHA too, but I have to say Carrie. The biggest thing for me that always keeps my heart full and my sleeves rolled up willing to work very hard with Jessica to keep this going. Is when I see there, these essays that they work on.
[00:53:36] Um, pouring their heart and soul and tears and sweat. And no matter how many times they're sent to revise and edit and they keep going back and then reading these beautiful essays that really captures who they are and what they want to be in this field. If it just can stop you in your tracks, um, the growth that they've had.
[00:54:03] Between the professionalism and just understanding what they're going to be doing in our, in our space. Um, and then th the impact I know that they'll have on other people, that's definitely what inspires me. Keep working hard. I said, we're, Jessica's never getting rid of me.
[00:54:25] Carrie: Well, I want to say thank you to both of you, but being a guest today, I've learned so much.
[00:54:31] And I can just tell that this IMPACT program. Well have a ripple effect. And like you said, the more students that have the opportunity to go through it, they get to pass the torch to the next generation of students. And then it just keeps going on and on and on. So I hope that this program continues so that the ripple effect can continue as well too.
[00:54:57] So thank you guys, both for being here today. Thank
[00:55:01] Lauren: you so much, Carrie. And I should, I would just like to thank all of the people who have helped us over the past year and a half. Um, Jessica and I run this program, but we have had so many of our friends donate their time to us to spend late evenings into the very late hours, hanging out with our students through zoom
[00:55:25] And so our friends at Boys Town, our friends at Pitt, and all of our friends that have come to the family dinners. We just want to thank them so much because we couldn't be giving the type of program we're giving to our students without all of the support from all those people. So thank you so much for having us.
[00:55:44] Carrie: Yeah. Thank you guys for being here today and thank you all of my listeners for tuning into the empowEAR Audiology podcast. If you enjoy this, please share this podcast with others and please come back next time.
[00:55:59] Announcer: This has been a production of the 3C Digital Media Network.

Episode 37: empowEAR Audiology - Lisa Kovacs 

[00:00:00] Announcer: Welcome to empowEAR audiology with Dr. Carrie Spangler.
[00:00:14] Carrie: Welcome to the empowEAR audiology podcast, which is part of the 3C Digital Media Network. My name is Dr. Carrie Spangler, and I am your host. I am a passionate audiologist with a lifelong journey of living with hearing challenges in this vibrant hearing world. This podcast is for professionals, parents, individuals, with your own challenges and those who want to be inspired.
[00:00:43] Thank you for listening, and I hope you will subscribe, invite others to listen and leave me a positive review. I also wanted to invite all of you to visit and engage in the conversation on the empowEAR audiology Facebook group. Transcripts for each episode can be found at www dot three, the number three, C digital media network dot com under the empowEAR podcast tab.
[00:01:16] Now let's get started with today's episode. All right. I just want to welcome everyone to the empowEAR audiology podcast. I have a special guest with me today, Lisa Kovacs, and she, um, is part of the hands of voices, program. She's the director of programs and she provides support and oversight to the guide by your side and ASTRA programs, including startups support as well as providing technical assistance and information coordination.
[00:01:49] She is also director of the FL3 center, which was also going to talk about it a little bit later, but, um, I'm going to welcome Lisa today to the empowerEAR audiology podcast. Thank you Lisa for being a guest.
[00:02:04] Lisa: It's so great to be here with you, Carrie. Thanks for having me.
[00:02:08] Carrie: Yes. I was just trying to think about how we connected and I want to say that we connected in Columbus, is that right?
[00:02:17] Well,
[00:02:19] Lisa: I think you're right. I think I, I think I met you through campUS.
[00:02:23] Carrie: Yeah, so campus or that overnight camp. Um, and I think you were one of our guest speakers for the parent panel that year. And you came with your son, maybe that first year, and then you came back, uh, after that. And campUS was just an overnight program for individuals or teams that are deaf and hard of hearing teens.
[00:02:44] to learn about transitions. So.now that you have a lot to share on a professional side too, but before we kind of get into your professional journey, I would love if you would be willing to share a little bit about your parent journey, because I think parents stories are really powerful to share. So would you be willing to back up a little bit and share that.
[00:03:08] Lisa: Sure. Yeah. So of course, it's gonna age me a little bit to talk about the age of my son, but yeah. You know, I have to be honest, it's really fun to be on this side of the, um, parenting journey. Um, my, our son, my husband and I, we have four kids and our son, Anthony, uh, is 21. He's a junior in college. Now I'm studying theology and philosophy at Marian university.
[00:03:36] And, uh, our journey started when he and his twin sister, uh, were born three months premature. So, um, that was, uh, a pretty rough time for our family at the time. Um, we have two other girls, um, and they were foreign to at the time. And, uh, so Anthony and his twin sister, Lanie uh, we're at Riley children's hospital in Indianapolis, um, for three months, um, both really, really sick babies at the time.
[00:04:06] And so, um, they both spent, uh, over a month on, um, a ventilator and, um, uh, but, uh, both really have had. Great outcomes. They had incredible care at Riley. And, uh, so our, our hearing journey began, um, right as we were getting ready to exit the NICU three months later, um, they came to do his newborn hearing screening.
[00:04:34] And ironically, this was in June of 2000 and Indiana had just passed its newborn hearing screening mandate. Um, so wow were we fortunate. Um, so they came in and, and um, you know, we were learning lots about newborn screening back then, so they just kept screening him over and over, um, hoping he would pass and he didn't, um, his sister did, but he didn’t.
[00:04:59] And so, um, we were sent home from the hospital, um, needing to do pediatric audiology follow-up. And so from that point again, remember this was 21 years ago. Um, he came home on oxygen and so they were, um, at the time only doing, um, sedated ABRs and they didn't want to sedate him, uh, until he came off of oxygen.
[00:05:24] And so finally at about 10 months of age, We were able, um, to do his sedated ABR. And from that we learned, um, about his hearing loss. He in the NICU had, um, a couple of pretty big risk factors for hearing loss. He, um, was given ototoxic medications because he was sepsis. Um, and, uh, he also had a toxic bilirubin.
[00:05:52] Uh, and had many, many blood transfusions. And so his final diagnosis after a few different opinions was that he has auditory neuropathy bilaterally. So, um, so yeah, so because of, um, being so premature, he and his twin sister were both receiving early intervention services. We were getting all of them, OT and PT, developmental therapy.
[00:06:19] And then when he got diagnosed. Um, with his hearing loss, we started, um, speech therapy. So, yeah. So, um, from that point on, you know, it was, it was a little rough. We had, um, you know, lots of decisions to make as a family. This was, um, really new to us. We had, um, all of the experience was new. We hadn't really experienced any family members who were dealing with, um, a child born really premature.
[00:06:50] We didn't know anybody, um, who was deaf or hard of hearing. So all of it was a new experience and, um, it was, uh, like I look back now and think, wow, those were some crazy heres. Um, so, uh, so at the time of his diagnosis, um, my older two would have been five and three and then, you know, twin one-year-olds. Um, so it was a really crazy time.
[00:07:19] Carrie: So you said Anthony was officially diagnosed at 10 months of age, and then you were already receiving early intervention. What was your next step after that diagnosis?
[00:07:30] Lisa: Yeah. So originally he was diagnosed with bilateral sensorineural hearing loss. And so he was fitted with hearing aids. And, um, so then we started, um, you know, all kinds of intervention services we were doing, I guess I would call maybe total communication at the time we were doing
[00:07:46] Sign language with him as well as working on, um, some spoken language as well. Um, again, back then, I didn't know what I didn't know. So I didn't know the difference in all the different signing systems or about American sign language, or I didn't know, you know, even about listening and spoken language. Um, and so that all came over time for us.
[00:08:09] Um, we just, you know, started doing, um, whatever we thought might work. And then we really just had to kind of watch him and we had to change courses a couple of times to find what was going to work for him. And then, um, there was just some, some, um, I'm going to talk about like the parent gut feeling, there was just some things in my gut that just kept feeling like it wasn't.
[00:08:31] So we went and got a second opinion about his hearing and that's when we got the diagnosis of auditory neuropathy. Um, so we didn't change much. He, he, um, he's been a hearing aid user even with his auditory neuropathy and he's done really well, um, with hearing aids and, um, but it was just good to know, to kind of understand a little bit more about, you know, the way we would approach, um, some of his interventions
[00:08:58] Carrie: Right. So, and then after just kind of going back to some of your school journey with Anthony. What was that like from a parent perspective of going, did he go to a preschool school or did he start in kindergarten and then kind of maybe just some highlights along the way for you that
[00:09:19] Lisa: way? Yeah. Yeah, sure. So, um, because of, um, all the other.
[00:09:25] complex medical needs. He had early on, um, uh, early intervention was tough for us. And, um, so I, he was still, he, um, made huge gains in, um, his occupational therapy, uh, physical therapy, developmental therapy needs, like at age three, he was aging out of all of those services, but he was significantly still behind in language.
[00:09:52] And so, um, again, I didn't, you know, you don't know what you don't know as parents. And so I just kind of started doing my research at two and a half. The school districts came out and did like that transition meeting with us. And prior to them coming, I'd gone to visit some different preschools. I had gone to, I went to visit our school preschool, our public school preschool.
[00:10:14] I went to, um, visit a couple of private preschool placement. And, um, when the person came into our house to talk to us about transitioning into school, I, she mentioned the public school preschool program. And I said, yeah, I went to visit that. And I said, I'd really like to talk about some of these other private school placements that I went to look at too.
[00:10:35] And, um, she said to me, her exact words were, oh, we hear it. You know, X school corporation, we. Only use our preschool. There's no other options. And so I just knew, again, that mom gut feeling. I knew that probably wasn't right, but I had to go to work and I had to learn everything I needed to learn kind of about special education.
[00:10:58] And you know, what my rights were, um, what our rights were as a family and as parents for Anthony. And so by the time I, I was, I was equipped with some information and resources. By the time we had his first IEP meeting. And so, um, we did ask, we did propose as parents for him, um, to attend a, um, private preschool program, um, through, um, the public school at the, at the expense of the public school.
[00:11:27] And after a very long meeting, um, the team did come to the decision that that would be an appropriate placement for him and that they were willing to give it a try. So, yeah, so he, he attended a, um, a private, deaf and hard of hearing preschool program. He was there, um, for three years, uh, and then his last year there, he did a split placement.
[00:11:52] So to make transition back into our public school better, we did, um, three days a week at the private preschool placement and two days a week at a public, um, preschool, um, gen ed preschool program. And then by the time he was in kindergarten, he was fully mainstreamed
[00:12:09] Carrie: Wow, but that's great during any, and I know it's going to kind of feed into all of your experience of, um, professionally that you have right now, too.
[00:12:19] But I just want to say, since I did have the opportunity to meet Anthony a couple of years back, he's such a sweet, smart, amazing kid. And I didn't, you know, I didn't know him when he was little, but I knew him as he's transitioning in the college and, um, just amazing what he's doing right now. And just to see him now, um, when you kind of tell that story, um, you know, where, where you all started, right.
[00:12:47] Lisa: Yeah. You know, I got to say it takes a village. Um, we had some incredible, um, support along the way. We had, um, really fantastic professionals, um, who supported us, um, you know, provided us with great information and resources. I couldn't have done it. We, my husband and I could not have done this without them and they taught us very early on, um, that Anthony needed to be a strong little advocate for himself.
[00:13:15] So yes, you got to meet the benefits of that great information and resources that people came to us early on, um, to create the young man that Anthony is today.
[00:13:27] Carrie: Yeah. Is there anything reflectively that you would have done differently if you would have maybe known or. had different information or not part of the journey and you just learn along the way and it helps you in one way or not.
[00:13:45] Lisa: Yeah. If it was at all possible, you know, it would have been nice to have like, you know, a way to look into the future. Um, so knowing what I know now, um, I was so stressed and so worried and, you know, um, there were some just nights of no sleep throughout the journey, worrying about getting to where we are getting the best outcomes for him.
[00:14:09] And I look back and I tell families today, Enjoy the journey enjoy every minute of the journey. Um, and then the other thing is, is that, um, we didn't have the opportunity early on to meet diverse, um, deaf and hard of hearing adults. I, and, you know, they, uh, have so much wisdom, um, to share with us as hearing parents.
[00:14:30] And so I would have done that a little bit sooner too. I would have sought that out.
[00:14:36] Carrie: Yeah, that's interesting you say that. Cause my mom probably would have said some of the same things too is, you know, she wished she would have had a crystal ball. She wished she would've had the other parents as well as, you know, deaf adult.
[00:14:52]or hard of hearing adults to see and talk to you. Bye it's. Like you said, all part of the journey and most parents have never had that experience before. So it kind of gets me to more of, um, Involvement with Hands and Voices, which is a parent driven organization that supports families with children who are deaf and hard of hearing without bias around communication modes or methodology.
[00:15:22] Can you share a little bit more about how you got involved and connected with Hands and Voices?
[00:15:30] Lisa: Sure. Yeah. Hands and voices has been such a big part of our family journey. Um, I found hands and voices. I went to a presentation by hands and voices in my home state here in Indiana. Um, when Anthony was about two and a half, about that time, we were going through all that stressful time, transitioning to preschool.
[00:15:50] And I sat at this presentation, listen to the mission and the philosophy. Of the hands and voices organization. And, um, it may sound funny, but right. I sat there and like, it was like this big weight came off my shoulders and I'm like, I found my home. I found my people, um, the philosophy of hands and voices of, um, you know, their motto of what works for the child is what makes the choice right.
[00:16:15] Was exactly what I needed at that moment. Um, you know, this, this world, um, of deaf and hard of hearing can be quite controversial at times. And I was finding myself caught right in the middle of it. And when I listened to this idea that, you know what we, um, let's focus on what we all have in common. And that is this idea of.
[00:16:39] Raising deaf and hard of hearing children to reach their, you know, um, optimal, um, you know, outcomes and, um, and it, and there's multiple ways to get there and what works for one child and one family doesn't necessarily work for another. It was, it was such a refreshing idea. And so, yeah, I've been with hands and voices now.
[00:17:02] 18 years. Uh, so I started as the founding parent of the Indiana chapter. I sat there that day and said, I want this in Indiana. And, uh, so myself and actually a deaf adult, um, who was also a parent of deaf children. Um, started the Indiana chapter. Um, I guess that would have been back in like 2003 or four.
[00:17:27] And, uh, and then I worked for the Indiana or I was a volunteer for the Indiana chapter for many years. And then in 2009, our early intervention, um, system, our early hearing detection and intervention system, EHDI. Uh, wanted to fund a guide by your side program. They wanted to formalize parents, parents support.
[00:17:50] So I had the opportunity to start that program in Indiana. And, um, you know, what a humbling experience, uh, for many years, Carrie, I got to be the first point of contact, um, calling those families right after they had just, um, were, um, given the news that their child was identified as deaf or hard of hearing.
[00:18:12] And so, um, that is what made me, who I am today is, you know, we're talking about my family and Anthony and our story, but really, um, what equipped me to be able to do what I do and support families is listening to all the other family stories. So, yeah, so I did that, um, in Indiana and then I started working for Hands and Voices headquarters, um, in.
[00:18:38] 2012. And so we are 45 chapter strong in the US and Canada. Um, we're an organization for parents. That's led by parents. So all of our chapters are led by parents like me. Um, it was founded for parents and professionals in Colorado, um, about 25 years ago. And then all of a sudden word got out, um, about the mission and the organizational structure, and then other states wanted Hands and Voices.
[00:19:11] So our primary purpose now at Hands and Voices headquarters is to support our chapters in, you know, these 45 chapters who are on the front lines, um, providing support to families and professionals in their states or territories. And, um, you know, we, we say we envision a world where deaf, where children who are deaf or hard of hearing have every opportunity to thrive, achieve their full potential and experience equity and inclusion.
[00:19:38] That's our vision.
[00:19:40] Carrie: I love that vision too. And yeah, to know that you started with just one chapter in Colorado and have grown to 45 chapters in the US and Canada is amazing. And think about all of the support and parents that are able to be reached by having this vision and mission that Hands and Voices. Has for all of you, but kind of going back to your story that you said you started in Indiana as the Guide by your Side, what would you say coordinator or, I mean, is that a good word?
[00:20:20] Okay. So, um, was Guide by your Side and official program at that point in time, or was that something that you helped develop?
[00:20:30] Lisa: Yeah, no, I'm so Guide by your Side was founded actually out of our Wisconsin chapter. I don't know the exact year. Um, but, um, again, by some great professionals there that had this idea that, um, I actually formalizing, um, parent to parent support.
[00:20:49] Of course, that is not saying that informal support of parents just meeting each other is not vitally important, but actually taking this idea and formalizing it where there's a true curriculum and a training and, and, you know, um, evaluation of how the program's working for families so that we can constantly be improving it that idea
[00:21:10] Um, came about out of our Wisconsin chapter years ago, and then just started growing. And I don't know where Indiana was and it was in the early, early group of Guide by your Side programs. But I don't remember exactly where.
[00:21:24] Carrie: Okay. And so what I guess the benefits obviously of implementing this type of the program would be having that curriculum and, um, you know, uh, something that you actually following and training and things like that.
[00:21:39] How many states right now have a
Guide by your Side program? Like an official one through Hands and Voices
[00:21:48] Lisa: Yeah. So we have 25 states that have a funded guide by your side program, where they have, um, organizations or agencies who are funding them in many states guide by your side, um, is a good fit for EDHI program.
[00:22:06] In meeting their family support and engagement, goals and objectives. Um, so many of our programs have, um, are supported and funded through the, through the EHDI system. Um, but there are diverse funding. Um, you know, sometimes it's it's money that they've raised on their own, or we've got a couple of our programs that are funded by their school for the deaf.
[00:22:26] So there's a variety of different, um, organizations who fund. Our Guide by your Side program. I think what makes us unique is, um, several years ago, We were able to be involved at Hands and Voices with a research group out of Canada, from Western university and Dr. Sheila Moodie, and they were developing, um, a conceptual framework of parent to parent support.
[00:22:51] So Hand and Voices was on the, um, original group that was developing this framework. And once the framework got published, our Guide by your Side programs have now, um, infused that into our work. So we use that framework, um, as we're supporting families.
[00:23:11] Carrie: Yeah. That's an incredible framework too, that you guys have with Dr.
[00:23:15] Sheila Moodie. Can you walk through just. About, like if a family would have a guide by your side, um, person, I guess, trained, uh, parents, what does the, what kind of support overall, or kind of from a 360 degree view, does that person provide to the family?
[00:23:37] Lisa: Sure. So, first of all, we're always following the family's lead.
[00:23:41] So, you know, every family, like I, all the families I've connected with there just, hasn't been two that have been identical. So you're really trying to get to know the family first, find out what their immediate needs are, but we're really looking at, you know, different domains. So we're looking at the family wellbeing.
[00:23:58] We're looking at the child wellbeing. We're wanting to make sure that the family has good, accurate information. Um, that they are empowered to make decisions for their child and family. So those are the areas primarily that we're looking at. But again, um, we, uh, we train our parent to parent support providers, um, to make sure that they're really following the families need.
[00:24:24] Um, we always say, you know, you can go in with an agenda, but you will scratch that agenda completely. If the family has something else, that's an immediate need. And I also want to, I'm talking about parent to parent support, but I also want to mention that Guide by your Side has a deaf adult to family support component.
[00:24:41] So we also train deaf and hard of hearing individuals, um, from diverse backgrounds. So making sure that parents can meet, you know, a deaf or hard of hearing adult who functions. Um, and they're in navigates their world using American sign language, a deaf and hard of hearing adult who uses spoken language and, you know, cochlear implants and hearing aids and a hard of hearing deaf and hard of hearing adult.
[00:25:04] Um, so we that are deaf and hard of hearing adult to family support is so that those individuals can share their lived experiences with families as well. So that's an additional component to the parent to parent support.
[00:25:18] Carrie: That's a great component as well. And just like you said, with, you know, going into families every family his journey is a little bit different.
[00:25:26] And so being able to. I have that I guess, shared experience from a deaf and hard of hearing adult. It is important to, because all of the journeys are going to be a little bit different, um, that they bring to the table. What if a state does not have a program? Is there, have you heard of any ways that states have tried to implement or another avenue to implement this kind of parent to parent support?
[00:25:53] Lisa: Sure. So, first of all, I want to say all of our chapters. Um, so, you know, I said we have 45 chapters and we have 25 guide by your side programs. All of our chapters are providing support to families. Um, you know, that's just who we are. Uh, but some of them have been able to receive funding to implement this formalized program.
[00:26:12] Um, I also want to mention that at Hands and Voices we're just one. Organization of many really strong organizations out there. And I don't want to begin to, you know, even mention them all cause I'm going to leave somebody out, but there are also other really fantastic family-based organizations who can provide family to family support as well to families.
[00:26:36] Um, you know, it's not about us making sure it's hands and voices that's providing it. We just want to make sure every family is getting access to. And, and Carrie when I talk about access, one of the, um, biggest challenges that we face is that some states have identified that family to family support is, um, part of their systems of care for family.
[00:26:59] So they ensure that every family gets referred to family, to family support families. Families don't have to go find it then. If you remember, you know, just 20 minutes ago when we were talking about my family journey and I didn't know what, I didn't know, families have so much going on that to, to assume that they are going to be able to go out and seek family to family support, um, is, is, um, it's just, it just doesn't happen.
[00:27:27] And so when a state system recognizes that this should be a part of the systems of care that every family should equitably get offered the opportunity to enroll in a family to family support program. That's where we see again, equitable support when it's not set up that way. I believe the families who need us the most are who don't find us, um, because.
[00:27:54] You know, there's no system that sets sets set up that they get an automatic referral.
[00:28:00] Carrie: Yeah, that makes sense. And I believe the Joint Committee on Infant Hearing their position statement, 100% support this family to the family support. And you have, you know, American academy of pediatrics and audiology and speech pathology and parents, and lots of organizations.
[00:28:19] Who've recognized the importance of this family to family connection.
[00:28:23] Lisa: Yeah. You know, that's been my experience certainly as a parent, myself, is there are just some, um, fantastic, um, professionals and leaders out there in the field who really see the value of family to family support. Just like I say, you know, I, I'm a hearing parent, I, I don't have the lived experience of a deaf or hard of hearing adult or I'm, I'm not a speech language pathologist, or I'm not a teacher of the deaf.
[00:28:49] Um, it really takes us all. Um, and so, you know, for those fantastic professionals out there, being able to ensure that families are also getting access to other families for information, um, it's really important. And yeah, the joint commission on infant hearing certainly supports our work.
[00:29:08] Carrie: So moving a little bit.
[00:29:09] I wanted to talk about a couple of other programs that Hands and Voices has. And you talked about empowering pay rights earlier. And so handsome voices has a program called Astra. Could you share a little bit more about Astra and how that really helps with advocacy and empowerment?
[00:29:29] Lisa: Yeah. So Astra stands for advocacy support and training.
[00:29:34] Um, and this program was established, um, after Guide by your Side. And it, um, it really just took all the educational advocacy work that Hands and Voices had been doing and packaged it into a training curriculum. What happens is many parents like myself, um, find themselves having to quickly learn about special education or what we'll call part B services.
[00:30:02] So transitioning from early intervention into special education and you know, many parnets. Again, like me would say, we, I just started learning about early intervention. Now I've got to learn about, you know, part B or special education. So that's what Astra is intended to do is train parents and equip them with the information that they need so that they can best advocate for their children.
[00:30:28] Carrie: It the training. Typical, I guess, um, training, is that done? Like what does it look like? Is it like a one day thing? Is that a couple of days? Thing?
[00:30:40] Lisa: Yeah. So, um, if you, if you go onto our website under Hands and Voices.org, we have a whole Astra section. Tons of resources there. Um, the training is actually done through our chapters.
[00:30:52] So the chapters, because they're, you know, they're our frontlines, they're our local people. So the chapters can conduct the training, um, and their state or province or territory. Um, and so we've trained now in 25 states, um, in the United States. Astra and we call it basic training. But, um, I don't know that there's anything real basic about it.
[00:31:16] Um, it's like drinking from a fire hose. I'll be, I'll be honest. It's an eight hour training. Um, and then, um, our chapters can also apply to have what we call an Astra program. And when they become an Astra program, they train individuals, um, to then be Astra advocates on behalf of families. And that's a whole second day of training, kind of the finesse of advocating on behalf of a family or not on behalf.
[00:31:45] Let me change. Let me say, alongside a family, our, um, our goal is not to do it for the family. It's for us to be models for the family to teach them so that they can then do it themselves for their child. And ultimately our goal is, is that then they'll model for their child, so the child can advocate for themselves.
[00:32:07] So that's yeah. So that's what Astra is all about. Um, and like I said, we've been, we've been to 25 states so far. Um, and we have lots of professionals that join us at our training too. And, um, seem to also really enjoy it.
[00:32:21] Carrie: Yeah, that was my next question. Is it targeted to other people besides, you know, families that you've fed a lot of professionals and debt going?
[00:32:30] Lisa: Yeah, it's really good. You know, um, I always try to, as, um, I always tell our chapters, we want to make sure we have lots of families there, but it's nice to have a mix of parents and professionals because just by the comments and the questions that are asked, they learn from one another so much. So it's, it's always good.
[00:32:47] Um, to have a mix of parents and professionals together during the training
[00:32:52] Carrie: And is this training targeted to a certain like parent child age range? Or is it from birth to graduation?
[00:33:03] Lisa: Yeah, it's really it's birth to yeah exiting school, you know, the, the. Um, you know, my son, my son's a junior in college and that, and although I'm really over the peak of the journey, um, you know, the journey continues.
[00:33:19] And so there's so many transitions from early intervention to preschool from preschool to kindergarten. And then middle school, you know, when they all of a sudden start changing and having lots of different teachers, and then that transition age, when we're really looking at post-secondary education or transitioning into the workforce there's, um, needs of students then.
[00:33:43] So really Astra covers that whole age.
[00:33:47] Carrie: Yeah, there's always something new. I think as a parent, you probably feel that every like stage of transition, it brings about those emotions again, then how you deal with it might be a little bit different but the challenges change along the way, and to be able to have other families and professionals to ask, um, would be important too.
[00:34:08] Lisa: Yeah. And you know, again, we talked about the uniqueness of each child and what's also awesome about Astra is that we serve families no matter what the communication or language is of the child, whether they're attending their home school or whether they're attending a state-based, um, deaf school or they're attending a private
[00:34:28] You know, listening and spoken language school, we are trained and equipped to support families, um, to whatever that educational need is of that student. And we know that again, um, that is unique based on each child and family.
[00:34:42] Carrie: Right. Yeah. Thank you for sharing about that as well. And I know I, I attended one as a professional in Ohio.
[00:34:49] It was a while ago, but I, I did get a really nice book that had a lot of information in it. And then I know you can go to the website and find additional support and information there too. It was a great trainingt for that day, and like you said, it was like drinking out of a fire hose because there was so much great information that was coming out of that whole information packed day.
[00:35:12] before I wanted to ask you about one other program that I know you are the director of, and that is the FL3 center. So how did this program or center come about? And can you share a little bit more about that?
[00:35:30] Lisa: Sure. Yeah. You know, we just had to join the professional world of acronyms when it comes to deaf and hard of hearing.
[00:35:36] So FL3 stands for the family leadership in language and learning center. And this was first established in 2017 by the health resources and services administration at the maternal child health bureau and its purpose is to provide technical assistance and support to national state and territory, EHDI systems of care.
[00:36:03] In order that family engagement, leadership and family support is provided to newborns and young children. So, you know, again, you talked about joint commission on infant hearing, being, you know, very supportive around family support, um, HRSA or the health resources and services. Administration also has a strong belief in the value of family engagement, leadership and family support within the EHDI system.
[00:36:29] So Hands and Voices was fortunate enough to be the first recipient of the federal funding. And then we were awarded the second round of a cooperative agreement in April of 2020. So we're working through our second round of. And the center allows Hands and Voices. Um, the opportunity to support all family based organizations, not just our chapters, um, and parent leaders in the 59 states and territories.
[00:36:57] So that's exciting. We're meeting, you know, lots of, um, other people out there who are doing this work of providing family leadership and engagement in the EHDI system. So we really appreciate our work that we do with all the EHDI system stakeholders. And we're committed to ensuring that families receive the best possible resources that they can so that their children can achieve success.
[00:37:24] Carrie: That sounds like a huge opportunity. Can you just share a little bit more of how, um, your center is able, uh, how they are supporting the different states? I mean, is it one person from each state kind of is connected to you? Or, or how does that work.
[00:37:44] Lisa: Yeah. So we, um, we really look to each one of the EHDI programs and the 59 states and territories to identify who the family based organizations are in their state that they're working with.
[00:37:56] Although, you know, all of our resources are available to any family based organization in every state. Um, and we really look at kind of targeting like technical assistance and training to family based organizations. We look at communication dissemination, like kind of being a, um, a national communication and dissemination around family engagement, leadership and family support.
[00:38:21] Um, we look at national partnerships through the family-based organizations need to partner with, um, you know, all the different professional organizations. So national partnerships are really important to us as well. Um, so we kinda, we look in all those different areas and, you know, it was a great starting place, um, with Hands and Voices, because we do have chapters in, you know, 45 different, um, states and territories.
[00:38:46] So that was a great starting point.
[00:38:49] Carrie: Wow. And so now that had just started in 2017, I'm sure that you and knowing you have a big vision for where it can go. This center can continue to grow and go.
[00:39:00] Lisa: Yeah, it's been really fantastic. Um, you know, working with, again, uh, the leaders of the EHDI programs in each state and territory, it's, it's wonderful to see the passion and the professionals who are leading those programs to ensure that newborn screening is happening.
[00:39:15] That diagnosis is happening on time that we're hitting those one, three, six timelines. Um, it, and so, you know, we're just here to, um, support them in any way that we can, because we all have the shared vision of just ensuring that all kids, um, you know, achieve their optimal success success.
[00:39:35] Carrie: Wow. Well, thank you for sharing about those programs, I guess, um, as we start to wrap up here with this podcast, So do you want to just kind of give a quick synopsis of, I know there's so much information on your website as well, but just kind of maybe some of the highlights of professionals or parents or people are listening today, if they would go onto your website, what, what would they see?
[00:40:04] Sure.
[00:40:05] Lisa: Oh gosh. Okay. So I'm going to start with our most recently released resources. So, um, we, in the first round of the FL3 center, we, um, partnered with a wonderful group of, um, professional experts in language and literacy. So researchers, speech, language pathologists, um, who came in, um, volunteered their time to work with us.
[00:40:29] And over the course of three years, developed some language and literacy tip sheets for families. And so we have those up on our website now, um, we have now added a family activity guide to each one of these, um, language and literacy tip sheets. And now we are working and interviewing each one of our language and literacy expert.
[00:40:54] To come and talk about those, the tip sheets that they were involved in creating and how families can best use them. So, yeah, like right now, up on our website, we have Christi Itano, who's up there, you know, with, you know, uh, a couple of great, um, videos I think about, uh, phonology and semantics Um, and, uh, so we're constantly adding new videos as we go.
[00:41:21] That same group also helped us, right. Um, um, developmental milestones resource. So it's, um, you know, there's lots of different developmental milestone checklists out there. This is more about explaining the importance of developmental milestones for families and how parents can, um, learn more about what to expect their child to be doing at different ages and stages.
[00:41:45] And then, um, finally this past year, you know, through living through COVID in the past couple of years, we created what's called the virtual waiting room. It's on our homepage of our website right now. And it's a really fun, interactive, um, resource that has information about tele-health parent to parent support.
[00:42:05] There's a really good, um, guide for families to audiology. And then like if you click on the little coffeemaker, it's a self care station that really talks about the importance of parents and, you know, making sure while they're doing all this hard work for their child, that they're taking care of themselves.
[00:42:22] So. That's just a few of our recently released, um, resources, but I really encourage you to, you know, explore our whole website and we are getting ready really soon to unveil a new homepage. So, um, that will be coming
[00:42:39] Carrie: Oh well, that is exciting to look forward to you too. And I will in the show notes, definitely link the Hands and Voices website.
[00:42:48] So people can go directly there and explore all of these new resources as well as the resources that you already have up there. As we wrap up. Is there anything Lisa that I didn't ask you, that you were hoping that you'd like to share?
[00:43:05] Lisa: Well, I was just thinking about like my advice to parents. Um, you know, when I look back on my journey, it, it's amazing to know that the difference, um, a family can make in a child's, um, language learning outcomes.
[00:43:22] Um, Being able to, there's so much to learn about how to provide a language rich environment for our kids. And that's where it all starts. Um, there's a lot of pressure about making different decisions for our kids, whether it's, you know, the language or communication modes or methods we're gonna use or what school we might, um, be exploring.
[00:43:45] And what I'd like to say to families is, um, you've got to start somewhere. And I think less emphasis should be made on the decision that's being made and more emphasis on that once you make the decision having, um, professionals around you who can help you, um, progress monitor to make sure that the direction you're going is working for your child and it's okay to change courses.
[00:44:11] It's, it's just fine. Um, and, uh, to trust your gut, I mentioned my parent gut a couple of times. And knowing that, you know, your child best and last, um, have fun. It can be a lot of work. Um, but there's so much joy. We sometimes have to just slow down enough to find the joy and enjoy it. The years fly by fast.
[00:44:38] Uh, so soak in this time with your children, because you just don't get the.
[00:44:44] Carrie: That is wonderful parent advice, but, um, for out families as well as any parent along the parenting journey. Cause it does go so fast and sometimes we get caught up in that moment and. Of stress and making decisions. And I like what you said too about, you know, taking time for yourself to doing that whole journey and being able to reflect on everything right.
[00:45:08] . I want to thank you, Lisa, for being a part of the empowEAR audiology podcast and sharing just your parent journey, as well as giving our listeners an overview of Hands and Voices and some of the programs that are offered there. And, um, I'm going to provide some of those links in the show notes about the wealth of information that you provided as well today.
[00:45:32] Lisa: Thanks, Carrie. It is such a pleasure to work with professionals like you and, you know, your unique experience of being deaf or hard of hearing your self bring so much value to us as parents. So I really appreciate you inviting me today. And I'd like to invite all the listeners to come, um, you know, follow us on our social media, too at Hands and Voices.
[00:45:52] Our Facebook page has over 13,000 followers right now. Um, but we have plenty of room for more. So we would, um, love. Everyone to join us on Facebook.
[00:46:04] Carrie: All right. Thank you, Lisa. And I want to say thank you to all of our listeners. I want us, um, for spending time with us today. If you've enjoyed this podcast, please share it with others and take the time to give a positive review and until next time.
[00:46:18] I hope you stay empowEARed on your journey.
[00:46:21] This has been a production of the 3C Digital Media Network.

Episode 36: empowEAR Audiology - Dr. Kristina Blaiser 

[00:00:00] Announcer: Welcome to episode 36 of empowEAR Audiology with Dr. Carrie Spangler.
[00:00:16] Carrie: Welcome to the empowEAR Audiology podcast, which is part of the 3C Digital Media Network. My name is Dr. Carrie Spangler, and I am your host. I am a passionate audiologist with a lifelong journey of living with hearing challenges and this vibrant hearing world. This podcast is for professionals, parents, individuals, with your own challenges and those who want to be inspired.
[00:00:45] Thank you for listening, and I hope you will subscribe, invite others to listen and leave me a positive review. I also wanted to invite all of you to visit and engage in the conversation on the empowEAR Audiology Facebook group. Transcripts for each episode can be found at www dot three, the number three, C digital media network dot com under the empowEAR podcast tab.
[00:01:19] Now let's get started with today's episode. Welcome to the empowEAR Audiology podcast. I am so excited to have a special guest with me today. Her name is Dr. Kristine Blaiser, and I'm going to give you a little bit of information about her before I have her come on the air. Dr. Kristina Blaiser is an associate professor of speech language pathology.
[00:01:43] at Idaho state university, she earned her Doctor of philosophy and speech language, hearing sciences from the university of Minnesota. Dr. Blaiser’s professional and research focus is to ensure children who are deaf and hard of hearing reach their fullest potential specifically through a systematic assessment as the foundation for the support and training of the adults who interact with them
[00:02:11] Dr Blaiser is the coordinator for the ASHA's special interest group, pediatric pediatric hearing and hearing disorders, the Idaho representative, but then national speech, language pathology, advisory council, and a committee member of Idaho's newborn hearing screening advisory accounts. Dr. Blaiser directs the Idaho state university hatch program, which is helping adults talk to children lab on the Meridian campus since 2015 faculty and students graduate and undergraduate from the hatch lab received more than $450,000 of external funding coauthored.
[00:02:51] She has coauthored 12 publications and over 50 presentations at international and national conferences. So that is quite an extensive bio Dr. Blaiser, welcome to the empowEAR Audiology podcast.
[00:03:05] Kristina: Thank you so much for having me. It's an honor to be here with you, Carrie.
[00:03:10] Carrie: I'm really excited for this conversation today.
[00:03:13] And I always like to start my conversation. If I know somebody, how did we actually meet? And I was trying to think about that.
[00:03:21] Kristina: Yes, I, we were talking about maybe it was through an invited speaker, uh, for an ASHA convention, but then also Beth Walker, all good things lead to Beth Walker
[00:03:33] Carrie: good. Thankfully the bedrock that she seemed to pull us into many different things, but yes, and I think this past year has been fun even though, um, we weren't together.
[00:03:46] At ASHA, I was there. You have my trial, but we got to please act together. So that was a fun time to get to know you better. Yeah, that
[00:03:54] Kristina: was so fun. It was great. It was great to hear about our different perspectives on working with kids who are deaf or hard of hearing and how we can work together. The fun experience
[00:04:03] Carrie: it was and all of the technology work that day.
[00:04:07] Amazing. Right. It
[00:04:09] Kristina: was amazing. It was just like being there,
[00:04:13] Carrie: highlighted on the big screen there. So I always like to ask my guests, if they are in the profession, how did you get to speech pathology? I feel like a lot of people have a story behind.
[00:04:28] Kristina: Well, I started off at Madison and I was going to be a, a business major.
[00:04:34] And I ended up taking a lot of pre-calc classes and, uh, different types of classes and remembered that in high school I had taken a assessment an assessment that said, uh, you know, this would be a great profession. And it was either a florist or a speech-language that. So I remember signing up for my first class, uh, in communication, sciences and disorders.
[00:04:57] And I immediately knew that it was the right field for me. And I think that the idea of. Art and science in terms of helping people communicate with each other just became, it was so exciting. And I took my first aural rehab class in undergrad, and I knew that was it. That was the only thing I ever wanted to do was to work with kids who are deaf or hard of hearing.
[00:05:22] So as I kind of moved on, I really knew I wanted to specialize from a pretty early age, like my junior year in undergrad. And I knew I wanted to find a graduate program that could help me specialize. And so, um, I went, ended up going to the university of Minnesota and, uh, as I was taking my speech language pathology classes, I was realizing I did not.
[00:05:44] Have enough information just from speech language pathology. So I asked if I could take audiology classes. And so they let me start, you know, taking some of those as my electives. And then I realized that I still needed more information to be able to really do it. So I started taking deaf education classes as well.
[00:06:03] And so it's really interesting how my path at the beginning with, so recognizing that I needed to be able to Tap into other experts to be able to get a well-rounded view of, of what, uh, kids with hearing loss need. And so I did that. Back in graduate school. Um, and now I still feel like that's one of the things that I'm still trying to be able to figure out.
[00:06:26] How do we do that better as we are working on in the profession?
[00:06:31] Carrie: Yeah. I think all of us, like you said, the teachers of the deaf and audiologists and speech language pathologists, all look at kids who had deaf and hard of hearing in their unique ways. And we have collaborative ways that we also have our own ways.
[00:06:48] Which kind of brings me to my next question. And it is you have the foresight taking classes as an SLP to see, Hey, I need more knowledge from these different angles. And I know that in your work you've been able to survey some of the background and education and experience of providers working with this population.
[00:07:13] What did you find with that?
[00:07:16] Kristina: Well, the things that I'm finding are that our profession's best practices are really outlining expertise and skill sets of people who are specialized either in listening and spoken language or American sign language, or have these skillsets. But when we look at the training programs that we have at, um, even at the graduate level, We don't have that much overlap or actually any overlap, really.
[00:07:41] And so speech, language pathologists in particular, don't have any audiology classes at the graduate level. And so everything that they are doing when they're working with students who are in school settings or clinical settings, they're basing that information from something they had in undergrad, um, and maybe one class.
[00:08:01] And so. Some of the things that we're seeing is that speech, language pathologists don't have a lot of confidence in working with things like hearing technology. Um, often if they don't have any signing skills, then they don't also have confidence in working with students who are using ASL. And so it leads us to this place.
[00:08:21] Um, that we have these professions and now with the technology, we are so reliant on each other to be able to know how to optimize those, uh, those skills, but we don't really have the tools to be able to communicate them. And so some of the research that I've been doing recently is looking at how do we visualize some of the outcomes that we're getting so that we aren't giving these black and white narratives to audiologists or teacher for the deaf or hard of hearing that we're not saying on the PLS, the child had auditory comprehension skills of some so-and-so and expressive communication skills of so-and-so because that other provider may not have really any idea of what that actually means.
[00:09:07] We've been working on, uh, having some data visualizations through Tableau to be able to kind of show the outcomes and make them very transparent, not only to families, which I think is super important, but also to the providers, um, who, who are interpreting those so that they can see, well, maybe they're.
[00:09:26] Uh, language or their vocabulary isn't quite as developed as they want, but maybe their auditory skills aren't as developed as they need them to be either. And so we can start looking at the child as a whole, in terms of communication, as opposed to just our individual assessments that we get from our profession.
[00:09:47] Carrie: Yeah, which kind of brings me to some of your, uh, research, focus on assessment of children who are deaf and hard of hearing. And you kind of touched on it a little bit, but you also are looking at identifying patterns and trends and using that information from assessment for training and collaboration.
[00:10:08] So what have you found with your research in this area?
[00:10:12] Kristina: Yeah, it's been, it's been really interesting. And so what we've done is we've taken assessment protocols and we've been at been able to get permission from the publishers to be able to put them online. And so we have the families take the assessments online at home, and so we can create this cool visualization visualize report for the individual family.
[00:10:34] But then we also have the ability to look at it across all of the families in Idaho to see where are sort of the trends or the patterns that we're seeing in specific, um, assessments or, um, even in different regions, really. So we can look at how those, uh, those outcomes are even related to sort of the 1, 3, 6 milestones that we're looking at from, um, identification and enrollment in early intervention.
[00:11:01] And some of the things that we're seeing is really just this lack of, um, The of high expectations are understanding how to take auditory skills and turn them into language. I think that sometimes when people don't have a lot of experience working with kids who are deaf or hard of hearing or are using listening and spoken language, that they will focus on skills like.
[00:11:28] Identification of a sound or detection of a sound or identification of a certain object or localization that then when it turns into how does that auditory information translate into communication? Sometimes that they will switch into either a manual mode of communication or it will, it's not really sure about a lot of providers may not be sure about how to translate that into spoken communication or, um, getting a child to be able to do.
[00:11:54] generalize too. And that when we're working in early intervention, that can be a really natural thing to do with families. And it's just a matter of having that expectation that that can happen. So some of the things that we're seeing is just not really topping out in some of the skills that could be.
[00:12:14] So in terms of auditory skills, that may be again, just a detection or identification or localization, uh, in. The, um, vocabulary. We might see. One of the things I see a lot is that we're having kids who are really using a lot of requests for help or, um, signing for more asking for more. But we're seeing as that complex language or the increased variety of vocabulary is really not there.
[00:12:43] And so how do we take these different pieces? And really integrate them in together so that we can say, well, yeah, that the child can detect this, or the child can identify this, but how do we make that into it vocabulary goal? Or how do we turn that into a combination goal or start incorporating in morphology or syntax or, um, The other thing we've been using is that language use inventory, uh, by Daniella O'Neill.
[00:13:14] And we've been really seeing some pretty amazing trends from our younger kids, um, who are deaf or hard of hearing that near some of the trends in pragmatics that we saw for older kids, um, some of the previous research. And so we've been starting this conversation about how do we take these trends and then turn it into.
[00:13:36] Professional development, uh, because everyone has these great intentions of working with children and families, but not all of us have the same background. And so we've been really looking at how do you, how do we take the trends and the strengths and build on those strengths across the state or better also, how do we look at, wow, this is a skill that we could all work on.
[00:13:58] And so we've been working on doing things like lunch and learns or, uh, professional development opportunities. Um, We have a lot of awesome graduate students right now who are really interested in working with children who are deaf or hard of hearing. And we're trying to incorporate, uh, their skills because they're so good at technology and so good at creating resources.
[00:14:18] So we're trying to help them kind of seize this opportunity, um, and work as we'd look at that for professional development.
[00:14:28] Carrie: So what you're doing is you're identifying assessment trends. Through like family surveys and assessment tools. And you're looking at those different trends and the areas that are lacking, you guys are trying to put together more on-line professional development or resources that are accessible for individuals within your state, or is it a national trend or what, what do you see?
[00:15:00] Kristina: Yeah, well, we're starting it within the state. Um, and then we've been started incorporating, inviting some other states to participate and, um, get involved because the trend that we're seeing here is not just unique to, uh, to Idaho. I think that we see a lot of providers, um, just even through SIG 9 or some of the other activities that I'm involved with that.
[00:15:25] That providers again, have this great intent to be able to serve kids, but they're not always sure exactly what that means or how to translate that into intervention or translate actually our assessment data into intervention plans. And so, uh, we're trying to think of both synchronous and asynchronous opportunities for training, but the other thing that we're really seeing is.
[00:15:49] If you ask five people who specialize in working with children who are deaf or hard of hearing, they could know resources to go to off the top of their head. Right. They would be able to find those. But when we have providers who are less experienced, it's sometimes hard for them to navigate or find. The resources that are specific to the child that they're serving.
[00:16:10] And so my vision in the future, which hasn't come to fruition yet, but is to have assessment outcomes with QR codes that bring them to specific resources or things that they need specific to that child. So if we want to increase like lexical diversity, Where the type of vocabulary a child might have, we would have a QR code that would bring them to a list of existing resources.
[00:16:36] That would say here's a good way to, to practice, um, increase, use to verbs or adjectives, uh, and so that it would be very specific to help families with their child's specific needs and providers to be able to look at and find the resources they need for that specific. That's my dream.
[00:16:59] Carrie: That sounds like a great dream.
[00:17:02] I was just, this is just a question that popped into my head. Have you found that SLPs who may not have a background in working with children who are deaf and hard of hearing do a similar like assessment battery as they would with typical, um, or developing or typical hearing children. And has that been good or not so good?
[00:17:30] Uh, oh, what pieces are missing by doing it that way?
[00:17:34] Kristina: No, that's a great question. And some of the things we've been talking about so far, I've been more early intervention based, but as we kind of move into that school age, We have a lot of speech, language pathologists who are giving batteries of assessments for kids who are deaf or hard of hearing.
[00:17:51] And. The trick is, they're not really always sure about how to interpret those because the assessments aren't based or normed on children who are deaf or hard of hearing. So a lot of times they'll give us more developmental outcomes as opposed to like acoustic outcomes or look at trends. Um, or errors that may be more specific to a child who's deaf or hard of hearing.
[00:18:12] So a child could potentially be on the borderline of like an 84 and 85, um, sort of qualifying by a standard score. But when you look at the specific errors that a child might have, they might be missing things like plural S or. Third person singular possessive S and so when the speech language pathologist looks just only at the score that doesn't really look at the specific errors that the child might have, they missed that those cracks in that child's foundation that can lead to later literacy challenges or writing challenges, or even spoken communication challenges.
[00:18:50] And so I think one of the things that. I really like and recommend is that, um, speech, language pathologists use language samples to supplement their standardized assessments because that sometimes can give us a lot better picture of what that child is able to produce and as well as how well they do with narratives and how, how does the content and form, uh, really shape up when the, when the cognitive task is a little bit more challenging?
[00:19:20] Carrie: Yeah, no, that's great information there. And I know, um, once they have that more diagnostic information, how do you suggest, um, that the SLP work inter professionally to provide in a venture to enhance that communication and language and access for our deaf and hard of hearing students?
[00:19:47] Kristina: That's a good question.
[00:19:48] I think that
[00:19:49] Carrie: the,
[00:19:51] Kristina: a key part is really understanding that we have to be interprofessional when we're working with a child who's deaf or hard of hearing that we, to be able to, for a very sort of low level example, be able to target a phoneme that a child is not able to hear is, is very challenging when, and to, I think the other thing.
[00:20:16] Thing is really important for our field is that if a lot of speech language pathologists haven't had a graduate level audiology class, or they haven't had any of that content since undergrad, they may not always realize what the hearing technology can do right now. And, and so it may be like, well, we were going to work only on visual phonemes because the child can't hear this, or we're not going to be able to do this, but this is pretty good for when a child with a hearing loss can do or what a child with a cochlear implant can do.
[00:20:45] And I think that that's really kind of old school expectations. And so. Really somehow we need to be able to get that speech language pathologist to connect with an audiologist, whether it's an educational audiologist or a clinical audiologist to really kind of recharge their thinking of what that technology can do.
[00:21:07] Um, and then I think we need tools to be able to communicate effectively so that a speech language pathologist isn't kind of just thrusting a standards, you know, a standardized assessment into an audiologist's face. What can we do here, but being able to look specifically at what are some of that error patterns that might exist so that, that collaboration can really take place to start thinking about, well, is it about auditory access is about consistent access or are there things in quiet or are there things in noise that we should be working on?
[00:21:42] Um, but it's really just integral that we are talking to each other. I've been so fortunate to work as a speech language pathologist in an actual audiology office when I was at, um, in Minnesota. And so it became so clear to me how quickly we could change outcomes. When we talked to our audiologists really frequently and say, Hey, I think we might need a little bit of a modification here.
[00:22:09] And then when we worked together, Kids would walk out of the audiologist office like sh/s… oh, wow. I hear that now. Well, I never knew that was missing. And so, um, so I, not everyone has that optimized work environment, but that as a profession is something I think we really need to figure out is what are the tools that we have to share this information without reinventing the wheel for either profession.
[00:22:37] Um, so that it's easy. That, um, that consistent.
[00:22:42] Carrie: Yeah. You bring up a good point about the knowledge from both ends, because like you said, if a child is not producing any high frequency, phonemes is that a programming, you know, issue that they're experiencing. And by having that knowledge from a speech language pathologist standpoint, it's not just, they can't make the sound, but are they not hearing it?
[00:23:10] And to have that collaboration with the audiologist is, is important as well. So it goes both ways for sure.
[00:23:20] Kristina: Yeah, it's real. I think it, and I, there's not a lot of existing tools out there to make it super easy for, uh, for some of the communication and, and that's in places where people. You know, have a lot of clinical audiologists or educational audiologists.
[00:23:36] And there are a lot of shortages of providers, um, across the country. And so how do we, how do we do that when someone went in a pediatric audiology setting, but why do we do that when we don't have someone who even has a lot of experience with peds.
[00:23:55] Carrie: Right. And I just think of my experience in the school was, and there's definitely.
[00:24:01] Hearing loss are lower incident. Um, yeah, so, um, at most schools, speech pathologist may not have a student who is deaf or hard of hearing on the case mode for multiple years. And then all of a sudden they get someone and they haven't had somebody for 10 years. So the, like you said, the expectations have to be different, um, based on advancements with newborn hearing screening and.
[00:24:28] Yeah, early identification and technology when our kids are using technology as a form of communication.
[00:24:37] Kristina: Right. That's so that's so important. And that's where I feel like resources have to be catered to some of the assessments that we have so that we can better align sort of assessment, uh, interpretation to, to actual intervention.
[00:24:56] Carrie: Right. And fit it when it is school-wide with just common core curriculum and educational curriculum. How do you patch that in together as well? Absolutely. Well, your research has showed that there's definitely a, a gap with assessment and, um, how we integrate, um, interventions and just knowledge as well.
[00:25:24] So for those of who are listening today, who may be out there, and whether the speech language pathologist, the teacher of the deaf, even audiologist, um, um, parents, why would. What advice would you give? As finally, I was sharpening their knowledge and skills when they may have a student that is new on their caseload, or even current on a caseload.
[00:25:51] Kristina: I think being humble is an important piece. And recognizing that you don't come to the table with everything and that's okay. Um, you come to the table with a lot and. And that we have so much to learn from each other. I know that sounds a little bit cheesy potentially, but that watching, you know, cochlear implant mapping or watching a hearing aid fitting as a speech language pathologist, spending the time to be able to see how that actually looks and works is amazing.
[00:26:24] Right. And so, so many SLPs never had that experience, but if you can, and it, it makes sense. And just, it doesn't. I mean, it takes a lot of time to become a specialist in this, but to open your mind a little bit, to be able to say like, wow, I see, you know, cochlear implant programming is, is amazing. And seeing how that, how that hearing technology works in getting that idea is I think a huge piece of, um, of getting started.
[00:26:56] I think. Creating, there are a ton of amazing resources out there. Uh, and so maybe it's even going to something like, you know, our presentation at ASHA where it, it challenges you a little bit to be able to think outside of the box or to give you a little bit more information, thinking about. How do I get that refresh on what's really out there and what that expectation is, uh, connecting with.
[00:27:27] I think the family, the teacher for the deaf or hard of hearing, the audiologist, um, the speech language pathologist. Having a good relationship and figuring out what's the best way to communicate. Um, we, when I used to direct a school, we had a day where we had audiologists on the phone and speech language pathologist on the phone, and we would have just one room set up for conference calls and different people would go in and out, uh, for their child that was on their specific caseload.
[00:27:55] So, but we had it sort of set up so that this was the day, the second Tuesday of the month. We are still really good about privacy, that we could have the peep, right. People in the room at the time. And, um, and it was carved out and it worked really well. It took time and trust and, uh, and sort of creative problem solving.
[00:28:18] But I think that was doom now. And some of the other ways we have for communicating it can happen. It can happen. Uh, it's just a matter of putting the intent behind it.
[00:28:31] Carrie: And is that our great. Suggestions as far as collaboration and using technology and putting yourself out there and being humble about who you are and, and asking, right.
[00:28:43] Asking questions and developing those relationships. Do you have any favorite resources or are the resources that you were talking about as far as, um, some of the professional development that you went to develop, uh, any of those available yet, or? Well,
[00:29:01] Kristina: Yeah, we're getting there. Um, so I mean, I think Hearing Rirst is a great resource that is out there and Hear to Learn is another great one.
[00:29:12] Um, there is another really good one at, uh, Boys Town and I'm forgetting that website at the top of my head. Uh, but, but I think that there, I mean, there's great resources out there. A lot of the. Um, hearing technology companies have resources. It's, it's not that they're not out there sometimes it's just hard to navigate.
[00:29:35] What resource do you need for the specific child or specific case that you're working on? Um, I think that. I, this is a bias, but I think SIG 9 is a great resource. There's a great learning community that a lot of those different resources also have learning communities. Um, so being able to just join one of those and have that, that interprofessional collaboration, I think if you can be an interprofessional, um, community, I think EAA has a learning community as well.
[00:30:07] Um, I think that those things really help you to be able to see outside of just. Your specific area of expertise. Yeah.
[00:30:18] Carrie: And I think there's even some Facebook groups for sure. Professionals out there who, you know, can ask questions and, uh, lots of people chime in on different resources that they use to.
[00:30:29] But I agree with you. I think sometimes it's just hard to match Assessment data with what to do next. People can get overwhelmed. And if you're already busy with a huge case load, your idea of being able to have this is the assessment area, and this is a QR code that will take you to different interventions or tools that would be helpful would be a great way for.
[00:30:58] Early interventionist and school-age speech pathologist. It really just pick up and go, um, along with being humble and collaborating with the right people who are on their team too. Is there anything I didn't ask you that you were like, I wish I could talk about today?
[00:31:21] Kristina: Oh gosh. Um, you know, I think that the one thing that I'm kind of.
[00:31:28] Recognizing is that it takes all of us to be humble to do this. And I know that I've used that word twice now in a short amount of time, but just thinking about there's things that we know, and then there's things that we don't know. And, um, and that we, we are so much better when we try to just listen to the other person's perspective.
[00:31:53] Um, and. And I think that this field is so full of philosophies and, uh, backgrounds. And in that, if we can, if we can try to listen to each other, I think that may, that may help us because I think it's really important that we just try to optimize Outcomes for kids who are deaf or hard of hearing. And it's, we cannot do it by ourselves.
[00:32:23] I mean, we just, we cannot do it. We don't have a scope of practice. That's big enough to be able to do it all on our own. Uh, so I think that it's really a, it's an exciting thing when it works really well. And I think we have all the capability to be able to do it, uh, to, to a really, you know, pretty significant extent.
[00:32:45] It's just a matter of. Learning from each other. Like I learned from you, Carrie. I think you're awesome.
[00:32:54] Carrie: I learn from you too. I have to say that when we did our presentation together, Asher, I learned so much from you and thinking about it from a different lens, but it really solidified again, the importance of our two professions, really working closely together because.
[00:33:13] Like you said communication is important for both listening and it's a two way street. And by having our professions work very collaboratively together, this is, it benefits the whole child. Absolutely. Well, if other people are listening today and they were like, I have to get more information from Dr.
[00:33:40] Blaiser. I know she's working on some great information and resources and research. How can they get a hold of you?
[00:33:48] Kristina: Well, probably just my email. Uh, I'm not always the fastest at email, but I always get back eventually. Uh, uh, it's Kristina, [email protected]
[00:34:08] Carrie: Perfect. And I can put that in the show notes as well. So people want to get a hold of you. They can reach you that way. I just want to say thank you for being a part of the empowEAR audiology podcast. I loved having you on today. I love having the lens of a sweep language pathologist who are working with children who are deaf and hard of hearing as part of the podcast.
[00:34:30] So thank you again for being a wonderful guest.
[00:34:34] Kristina: Thanks Carrie. Thanks for having me.
Announcer: This has been a production of the 3C Digital Media Network.

Episode 35: empowEAR Audiology - Dr. Kym Meyer 

[00:00:00] Announcer: Welcome to episode 35 of empowEAR Audiology with Dr. Carrie Spangler.
[00:00:17] Carrie: Welcome to the empowEAR Audiology podcast, which is part of the 3C Digital Media Network. My name is Dr. Carrie Spangler, and I am your host. I am a passionate audiologist with a lifelong journey of living with hearing challenges in this vibrant hearing world. This podcast is for professionals, parents, individuals, with your own challenges and those who want to be inspired.
[00:00:46] Thank you for listening, and I hope you will subscribe, invite others to listen and leave me a positive review. I also wanted to invite all of you to visit and engage in the conversation on the empowEAR Audiology Facebook group. Transcripts for each episode can be found at www dot three, the number three, C digital media network.com under the empowEAR podcast tab.
[00:01:19] Now let's get started with today's episode. I'd like to welcome Dr. Meyer to the empowEAR Audiology podcast. I am really looking forward to this conversation about how to advocate for educational audiology when the service might not exist. And I'm going to just give all of our listeners a little bio about you.
[00:01:40] And I'm just going to say back to Kym Meyer received her undergraduate degree in communication disorders and education. And she did her student teaching at Millnet Manor School for the deaf after teaching for a year. She decided to go back for her master's degree in audiology at Gallaudet university, with the intention of working in the clinical setting and not in the schools she worked as a clinical audiologist for a few years.
[00:02:09] Including at the Massachusetts eye and ear infirmary. And then she position as an educational audiologist opened up at the learning center for the deaf in Massachusetts. And she has been working for this organization ever since, since 1994. And then most recently a huge accomplishment Dr. Meyer graduated with a PhD in 2021 and special ed policy from the University of Massachusetts at Amherst.
[00:02:41] And one of the reasons that she decided to get this degree was to learn how to expand educational Audiology services for all deaf and hard of hearing students across the U S and Dr. Meyer, thank you for being on the empire audiology podcast. Thank
[00:03:00] Kym: you so much. It's really great to be. And yeah,
[00:03:04] Carrie: reason to go back to get your PhD is really a central topic for today's episode, which I'm really excited for our listeners to hear.
[00:03:14] But before we dig deeper into that, I always like to ask my professional guests, how did you get into the field of audiology? Was that someone or something that happened in your life that steered do this way.
[00:03:28] Kym: So I grew up hard of hearing in one ear. And so I, you know, it was learning sign language, but I was a spoken language user.
[00:03:35] And I decided to go with a certificate deaf education, which is how I kind of got started. Actually. Before I got into deaf education, I was actually a radio major. So I truly started in radio engineering. And I thought it was gonna be a DJ or a radio engineer. I did not like it. And so I started taking, I took an intro to audiology class and sign language, which classes of undergrad and loved it.
[00:03:56] Decided to go into education. I taught deaf blind adults for a year at Helen Keller national center. And really thought about what I wanted to do for the rest of my career. You know, looked at. The special education did I want to continue to be a teacher? I'm a speech language pathologist. And then I started, I did some observing of different people and observed audiology.
[00:04:14] And I said, that's what I want to do. I love the science of it. I love the, you know, kind of the range of people that you can work with. So I decided to go to Gallaudet University for my master's degree to kind of keep that, that education piece of it, but then also keep the science part as well. And.
[00:04:32] Good. And
[00:04:33] Carrie: you have done so much in the field. Why don't you say, I think I met you initially at an EAA conference. I want to say in Denver was when we met and we had a nice dinner and that's when I really got to know you. So I always find, have to connect with people all over the
[00:04:51] Kym: world. That's I love EAA conferences and can't wait till we can be all in comfortable
[00:04:57] Unmasked. That's really my hope. It is
[00:05:00] Carrie: my home too. So one of the things I know you went back for your PhD and really thinking about advocating for educational audiology to services. But I always know that. What you've done is huge. And we're going to talk about that, but it usually starts with some grassroots effort and along the way, because, so can you share a little bit about how you really got started with advocating for educational audiology services?
[00:05:32] Kym: Sure. So I was the school audiologist at the learning center for the deaf working with the deaf, deaf and hard of hearing children at our school. And I got a call one day from our, from the town that Framingham public schools called me. They knew who I was and they said you know, the special education director said we had an IEP meeting.
[00:05:48] The family moved up from North Carolina, I believe. And the, we had the IEP meeting and the parents said, well, where's the educational audiologist. And the special education director goes, I don't know what that is, but I know the deaf schools have one. So let me call them and find out. And I, at that point, explain to them, there are educational audiologists in public schools across the country, but not in New England at all.
[00:06:09] Only the deaf schools have educational audiology. And I got me thinking, why can it happen in other states, but not here? So I started doing a little more digging and I said, Especially directors didn't know they were supposed to and audiologists didn't know how to make them. So I went to some of my audiology friends.
[00:06:30] I still have lots of connections to the hospitals. And I said, I want you to start putting it into your reports. And educational audiology educational audiologists consultation is recommended. And they looked at me as if I was bonkers. They said, we don't have that. Why can we can't recommend it if we don't have it?
[00:06:48] And what I try to explain to them, you know, in my, in my special ed policy you know, PhD, I took. Special education law. And so it's not, they're supposed to do it's it's part, it's a related service under IDEA So they don't just get to say, well, we don't have it. So, you know, shook her shoulders and not do anything about it.
[00:07:08] So I to put it in and let's see what happens. And that was the trophy. special ed director. The parents were getting these reports from their clinical audiologist saying an educational audiology consultation is recommended. They were giving it to the special ed director. The special ed director was going, oh my gosh
[00:07:23] What do we do with this information? We don't have this. Where do we find it? And from there I was, I was given the, go ahead at my school to start a program 20 years ago that provided contract educational audiology services to public schools. And we have just boomed ever since. But you know, I can't, I can't, I'd love to replicate this in other places, but parents have to.
[00:07:42] We all have to work together to make this happen in other places. Yeah.
[00:07:46] Carrie: Wow. That is definitely a grassroots effort and a ripple effect that really happened in the whole process. So I think this conversation can be great because like you said, it could be replicated in other places and probably needs to be replicated in other places as well before.
[00:08:06] Too much deeper into policy. Can you just for our listeners, like start out with the why of like, why do children who are deaf and hard of hearing need an educational audiologist? Why can't they just have their clinical audiologist?
[00:08:23] Kym: You know, th that was the model in Massachusetts, before we had educational audiology and what the down part downfall of that was clinical audiologists often didn't know what to do with, with hat hearing, assistive technology.
[00:08:35] They'd just go we'll just order it, but I've never touched one since maybe college. So or it's not so much, you know, Just fitting the equipment, but getting into the classrooms and determining how is the equipment used? Are the teachers using, do they need additional accommodations? In addition to the the technology is the technology fit properly for a classroom?
[00:08:58] Is the teacher using it properly? You know, I, I can't tell you how many times I've walked. I've I've like tons of stories walking into a classroom and the teacher's wearing the microphone. First speaker and the speakers in the class. So, or they're using, they're using speakers when it's inappropriate to use them because it's not appropriate for the, for the child.
[00:09:16] So it needs to be an educational audiologist that chooses and fits the technology and then can get into the classroom and make sure that it's used properly.
[00:09:25] Carrie: Yeah. I think that partnership between the clinical and educational audiologist is so key for our students to be successful in the classroom.
[00:09:35] Definitely. So kind of getting to that question and really the meat of this podcast. What happens if a school district does not have an audiologist? Is this considered just nice to have if its available?
[00:09:54] Kym: So under the individuals with disabilities education act, IDEA which is special education law, there are a whole list of related service providers, occupational theory.
[00:10:06] Physical therapy, speech, language, pathology, nursing sign, language interpreters, audiology, or is listed there. Now think about what would happen if a family went to an IEP meeting and, and, and the team determined this child needs speech, language, pathology services, and the sped directors for the team chairperson who's running the meeting says, yeah, we don't have that.
[00:10:29] That's not allowed, right. Parents would go bonkers. I think the issue really is people don't know what's supposed to be there. I once asked a good friend of ours, Dr. Cheryl DeConde-Johnson. Why does Colorado state of Colorado has, has educational audiologists throughout the state? I said, how come your state has it?
[00:10:48] Mine. Doesn't. And she says, because our state followed the law. And so I, you know, and I kind of use that. It's like, okay, we need to, to, to show people what the law is. And then how do we make it available? Most parts of the country have school districts that are in large collaborative organizations here in New England.
[00:11:09] And in much of New York, we have these little individual towns. We don't have a collaborative type of program. So each individual's class district. It's town. The town I live in probably has 12 deaf and hard of hearing kids in the town. That's not enough to support a full-time educational audiologist.
[00:11:25] So there needed to be a different kind of model because a, a district couldn't hire them on their own. So so that's hopefully the, the model that we've created can be replicated in other places, states education as a state's right. What that means is states can set it up the way they want to. So in, in New England, Massachusetts, every town or collaborative town can do what they, you know, had their own educational system.
[00:11:47] In other states, they have huge regional systems which work for an educational audiologist hired in those, in those communities. Parents need to be given the tools in order to determine, you know, to, to advocate for their child.
[00:12:04] Carrie: I definitely. And like you said, you've done a lot with Wright law too. And I want to, I'm going to definitely ask you more about that document that you helped for that website too.
[00:12:17] But before we move on, I know you talked about IDEA, but what about. Some of our students who are deaf and hard of hearing may not be eligible for a specially designed instruction through an IEP. However, they still have hearing difficulties that they may need accommodation through a 504 plan. Can an educational audiologist be requested for this type of plan as well?
[00:12:44] Kym: Absolutely. 504 plans. You're correct. Do not require a specially designed instruction. That's what an IEP is for, but what for 504 plans, what they see, it's an access law. And so what the child needs is the access to the general education curriculum. And they can either use, they can use to, to, to gain that access accommodations or related services.
[00:13:07] Remember I mentioned before audiology is a related . Listed so we can provide the same kind of approach on IEP or 504.
[00:13:18] Carrie: Okay. That's great information to know, because I think most of that, I could see that fit into one of those two categories and the public school type system too. And another thing, I mean, I think educational ideologists, we went to be part of that whole team.
[00:13:35] Does the educational audiologist bring to that whole team that might be doing. Than what a speech language pathologist or a teacher of the deaf brings to that
[00:13:45] Kym: team. It's really important that those three professions work collaboratively you know, often with SLPs and I, I do training of SLPs at the universities that I work in.
[00:13:56] You know, they get one. And in, in hearing you know, what hearing loss is or technology. And so they had their expertise in that child. They might know that child really well, but how the hearing loss impacts the child's ability to access. They might not have that information. That's where the audiologists can come in, come in.
[00:14:14] There is, you know, teachers of the deaf Certainly that's all they do. But my, my dissertation, my PhD dissertation was actually on the teacher of the deaf shortage in our state in Massachusetts. So, you know, we don't have enough teachers of the deaf either. So, you know, it would be great if, if they had children who had both access, but, but truly on 504, as I mentioned before, 504 is an access related services, audiologists related service.
[00:14:39] So audiologists can provide that service on 504. Teachers of the deaf educators usually cannot. So that's why we kind of be important part of how the technology works, how the how it impacts the child, how it's used properly. That's what a, an educational audiologist can bring in. In our, in my program our teachers of the deaf in our educational audiology, Work very collaboratively in order to make sure that, you know, when there's technology questions, my audiologist will step in, in other districts.
[00:15:09] The audiologist is the only one providing the service. And so supporting the public ed, the regular classroom teachers on a regular basis.
[00:15:17] Carrie: Yeah, no dig a little deeper and a hearing assistive technology. Can't they just order that and get it out of the box and be ready to go
[00:15:26] Kym: Yeah, they can, I can they can and I've seen so much bad happen on that because I I'll tell a story.
[00:15:36] Cause my students know that I'm always full of stories. I once was asked to you know, go into a classroom and the, it was a, it was in February, I think. And they asked me to the school district, asked me to come in and said, well we've, we've just, we've decided to stop using the equipment on this child.
[00:15:57] That was a child I'd never met. I didn't fit the HAT quipment. And the parent and the district decided that they were going to take. The FM had equipment because it wasn't working, but the parents kind of pushed back and said, I want an educational audiologist to come in and look at the system.
[00:16:14] So now this February, so back in September, they did the school district. Did exactly that the speech language pathologist ordered the, the HAT system fitted on the child's a six year old child. And they said his behavior got worse. His you know, he just stopped. He wasn't making progress academically.
[00:16:35] So in February I get called in, I go in to check the hearing aid. I check the hearing aid. I listen to the hearing aid. It shut off. Every time you put the FM, the audio shoe wanted, the hearing aids shut off. So he had no amplification from September to February. And I'm like, and you didn't think that this was a problem back in September, October.
[00:17:00] I tell that story because it's the most frightening thing that can happen. They said, well, we did everything we were supposed to do. I said you didn't bring in an audiologists and you know, tons of stories like that, kids having equipment that doesn't fit with their, their hearing aids or their cochlear implants.
[00:17:17] You know, there's just so much not, not being done well. You know, you're going to, if an audiologist, I mean, sorry, but speech, language, pathologist, or a teacher the deaf does it, they're putting their license, their state license, their teacher license. There has somebody licensed at risk because they're not, it's not within their scope of practice in order to fit this equipment.
[00:17:39] Carrie: Yeah. And that's a great point. So you may have a director or administrator that Say to the SLP or the teacher of the deaf, you know, this is part of your role. And I , especially in some, maybe rural areas where they don't have a lot of outside connection. What would you say? You know, advice, can you give to that?
[00:18:06] Professional.
[00:18:07] Kym: Right. So, yeah, I get that a lot. I, you know, often I'll go into a, you know, I'll meet SLPs or I'll meet teachers and they'll kind of on the slide. Tell me, you know, I, I tell my sped director that I can't, but you know, they say I have to, it's my job and really. I want to, I want to tell all of those people listening today, that this is not your job.
[00:18:29] If you're not a licensed audiologist in your state, it is not your job to fit equipment. And you're functioning outside of your scope of practice. And I would say exactly that this is outside of my scope of practice. It's putting my teacher license, my SLP license and the school district In, in potentially a litigious situation.
[00:18:51] And you know, it's better if we get, if we get an audiologist it's not better, we need an audiologist. You use actually words, and this is what we need. We need an audiologist to come and fit this equipment. Or, and when you mentioned this earlier, if the child if you don't have happen to have an educational audiologist where you can't find one, then the clinical audiologist needs to do this.
[00:19:12] You need to pay the clinical audiologists for that service. And then the child will bring the equipment back and we'll make sure that it's, that it's, you know, functioning in the classroom. But to say that it's now the SLPs are the teacher of the deaf job. It's pretty frightening. I mean, I, I look at a lot of you know, groups on Facebook that she showed the deaf groups and there are just some pretty frightening things.
[00:19:33] You know, teachers that have her saying, I've got this child with a Baha. And I, how do I fit the, the FM to it? And I'm like, please don't please. But, you know, sometimes I'll, I'll, I'll message them privately and say, you know, just that please don't. And they say my job is on the line and that's just scary.
[00:19:55] And so how do we, we need to get more word out to parents so that they can help advocate for their child and for their selves
[00:20:02] Carrie: I'm sure a lot of it also got comes down to, they want to make sure whatever child they're working with is getting what they need. But you know, some of these, the other stories that we can probably both share about hearing assistance technology I don’t know, non-functioning because of the related service of educational audiology, not being there is really critical.
[00:20:30] Kym: And that happens, I think more often than any of us will ever know, because people don't know to check it. Don't know how to check it. Don't know that they're supposed to check it on a daily basis. That is actually in the law as well. It is a. Tell special, special education directors that it's supposed to be checked on a daily basis.
[00:20:49] I've been called a liar. And and I said, well, here's the here's the the guidance in IDEA here's, here's the, the, you know, the the section that you should read and, and it's, you know, that is supposed to happen. And so when parents learn the kinds of things that their school should be doing to make sure that the equipment and the technology is functioning on a daily basis, and then they can advertise that they can advocate for their child as well.
[00:21:15] Carrie: And I think that checking on a daily basis is so critical to, and I'll just tell them real quick story about non functioning technology too. There was a district that didn't have an educational audiologist, and I think it was probably a year later that we ended up contracting with that district. And I was brought in and I went in same thing, check the equipment.
[00:21:38] They had all the right pieces and parts there. And I went to listen to it and I'm like, this, the microphone is not working, you know, everything's on. And this was when we still had the little stickers and the contacts before the hearing aids and. It would say it was connected, but there was no sound.
[00:22:00] So this student for a whole year, they were doing this whole process of putting on audio shoes and connecting. And the child was never hearing out of that microphone for an entire year.
[00:22:14] Kym: And I think, you know, that going back to the six year old, same kind of story, one of, you know what I told me, the speech language pathologist who fit the equipment and shouldn't have you know, he's not hearing anything.
[00:22:26] Well, why didn't he tell me because he's six. And I think often what we see is the expectations of an adult told me to wear this equipment. I'm going to do it even though, you know, and it becomes this kind of self gaslighting of, well, I don't think it works, but I don't want to tell them that. Or if I tell them that they're going to tell you I'm wrong or, you know, so it's, you know, I once got called into a school district and they were, they were telling me that the the child is not, you know, they're just making stuff up.
[00:22:55] And I, I never go there first because I just don't. And so I went in and I listened and I said, he's not making this up. I'm here, it's intermittent. And that's part of the problem. When you have intermittency, it doesn't always not work when you want it to not work. So but I sat there for a whole day and I listened to him.
[00:23:15] This child is not making this up, this needs to go out for. And so, so that when that becomes the go-to, oh, they're probably making it up that that causes children to say, you know what, I'm not going to say anything we have to believe. Right.
[00:23:28] Carrie: And then adding onto that when someone's getting HAT for the first time and it doesn't work.
[00:23:36] The student doesn't know what it's supposed to found. Like I don't have, so of course, you know, that like, okay,
[00:23:44] Kym: exactly. When I got that six-year-olds equipment to work, I went outside the door and I always play Simon says or something. And so it was a door with a window. So you can, I can see each other.
[00:23:53] And I played Simon says, and he, his eyes were like, oh my gosh, is that what I was supposed to be listening for? I said, it's supposed to. And I told him, I said, this is what it's supposed to sound like if it doesn't sound. Tell a grownup, but that it's not working. Okay. I will. But it's so heartbreaking that it was February from September to February, that child did not hear it.
[00:24:13] And that's, that's one of my worst stories, but not the only one I have.
[00:24:18] Carrie: I know, but it highlights the importance of why the educational audiologist need. Figuring out what type of technology is appropriate to put depending on what they have personally, as well as, you know, classroom acoustics and all of those other things that are important for access in the classroom.
[00:24:40] What have you found as some of the main challenges for schools not to be able to find or access an educational audiologist?
[00:24:50] Kym: It is challenging and certainly our program would not be here if we didn't set it up. The
[00:24:57] you know, one of the things I would say is, is, you know, contact your, if there's a local parent organization, like a Hands and Voices. Do they know of what do they, is there a neighboring town that has one contact and see if you can contract with them? You know, contact one of the things we're starting with the educational audiology association.
[00:25:17] It's not really out a lot. There is contact EAA our parent organization and see if their state representatives were I'm one of the I'm the Massachusetts state representative. If you contact the person who can they refer you to, that can provide educational audiology services at the very least, if you can't get any anyone use the clinical audiologists that the child already goes to and, and partner partner with them.
[00:25:40] And these are some of the ideas that I put in the Wrights law document that I, that I published a few years.
[00:25:48] Carrie: Yeah. And can you share just a little bit more about how you got involved in that that Wrigth’s Law document and what that Wright’s Law document really would benefit for those who are
[00:26:00] Kym: listening today or so rights law is a website that was created by a special education attorney Pete Wright and His wife, who's a parent
[00:26:12] Right. And it, it really is quite rich in explaining the special education to families. Lots of parents, they do webinars and they do in-person trainings all over the country. I've been in their training. It's wonderful. One of the things that they they do is they put information out about related services, you know?
[00:26:31] And so one day they put out some information about a related service, a list of related services, and there was a whole list and audiology was missing from it. Now I I've gone back to, I wanted to make sure at the time did IDEA, especially law change. And I did not know it because. That shouldn't be but it did not.
[00:26:50] Audiology is still listed there. So I reached out to them and I said, you forgot audiology. And, and can you put it into that list? And they came back and they said, well, we don't have anything on educational audiology on the Wrights law website, would you be willing to write something? And so I did, I'd never done anything like that kind of writing before.
[00:27:09] And so it is on the website that I think it was in 2017 or 2018 that I wrote that. And They and what I have since learned is families around the country are using that document to advocate for educational audiologist services in their child's school as to why it's needed informing special ed directors, that it's a related service under IDEA.
[00:27:29] And so it's just basically a list of everything we're talking about today. You know, what happens if, if, if something. They don't have them have one. What can an educational audiologists do and, and provide some, some support and information there. I've been also contacted by you know, parents all over the country as well about that.
[00:27:47] So it's kind of really nice that it's making the waves and it's kind of getting out there. Yeah,
[00:27:52] Carrie: it's a great document. I know I've looked at it and been able to share that with, I had just, not only parents to direct too, but it's just a well written document that really explains what our role is and how IDEA supports that role too.
[00:28:09] Kym: Thank you. Well, I'm hopefully, hopefully it'll stay up there and be used by people. And I know that
[00:28:15] Carrie: you've done some webinars, for audiology online, teaching clinical audiologists that had an advocate for education audiology. Do you want to share any more about that
[00:28:25] Kym: webinar? So that was very specific to clinical audiologists.
[00:28:30] At the beginning of this. Remember I talked about putting you know, making a recommendation in the, in, in, in a report. You know, that's the clinical that's one of the critical pieces is we need to get the word out that this is what the clinical audiologist is recommending. You know, most AUD programs.
[00:28:48] I don't want to say most, I don't know how many AuD programs. It would be progress, but I know that there are 80 programs that never really even mentioned educational audiology in their, in their clinical training. So most audiology many, including, oh, y'all just may even not know about what do I need to do. This is what, so basically this was laid out.
[00:29:05] Step-by-step what clinical audiologists can do in order to advocate with their parents. About educational audiology services. One of the things I say is every time that parent leaves, they should get that Wrights Law documents. Every report they write, they should put in that recommendation that they are making a you know, the child needs an educational audiology consultation.
[00:29:26] The more they can say. The more, the district is going to start listening because, you know, if you say it once I, you know, I've worked in education, my whole career almost especially directors will go, yay. Yeah. When they get four or five reports from different audiologists that say the same thing, they're going to start to say, maybe I have to do something about this.
[00:29:46] And that's how change is it it. Yeah,
[00:29:49] Carrie: definitely. Do you have any other thoughts? Like it just kind of rang a bell in my head about how do we educate maybe more at a grassroots, but also at a national level for special ed directors. And what our role is as educational audiologist
[00:30:08] Kym: One of the, one of the challenge.
[00:30:10] So I'm a member of the council for exceptional children, which is a special education organization. There's not one overarching group where all sped directors belong to. And that's part of the issue. CASE is one special ed director group counsel, I'm not going to get the acronym, right? It's CASE And maybe split directors belong to it, but not all of them.
[00:30:32] And so kind of in my, you know, my next kind of iteration, I wanted to think about how do we get our, get, get the information out there. But more broadly to the special education community so that they can then advocate you know, further you know, so I'm hoping with this podcast, we can help with, you know, getting teachers and SLPs kind of the wording that they need to know with the, the webinar, the audiology online webinar, the you know, having educational clinical audiologists provide the you know, the wording and how to, how to do things from their perspective, by the way that, that podcast that Webinar is free to access for anybody to access.
[00:31:08] And but, but I don't think that's going to, that we can't, I can't end there. We can't end there, but we need to continue to, for all of those deaf and hard of hearing kids living, particularly in places like rural communities you know, how can we provide services now with you know, since COVID sadly we've now used more.
[00:31:26] Zoom and use more opportunities for remote work. How can that factor into, you know, if you have a child living in, you know, some rural county and they're the only hard of hearing child, you know, in a hundred mile radius, it's probably a realistic to say it, audiologists going to drive there every week, but, well, how can we use remote technology in order to connect with the school districts and do, do some observing and give some feedback and.
[00:31:52] The people that are there in order to make sure that the child is really is accessing their school
[00:31:58] Carrie: good outside the box, thinking for that too. Right. And I know I can actually link in the show notes the Wrights law document, as well as your audiologoy online webinars. Because I think both of those are great resources, but people did to click on too.
[00:32:16] But I know you are an active member of the education audiology association, and there's also a number of documents there. Do you want to just highlight some of those in case people want to reference those or go look at that?
[00:32:30] Kym: So one of the, one of the documents that I share with my students, I share with my, my staff know about this and, and special ed directors, which I think is really important.
[00:32:39] I think one of, one of the issues about special education or special ed directors is they. Hearing loss. Deaf and deaf, hard of hearing. Children are a very, very small number of what they do. What we know is it's, it's less than 1% of all children are on IEP, how hearing loss as a primary disability. So because of that, they don't really know.
[00:33:01] They just know hearing, you know, hearing the teacher does as hearing SLP does hearing. So that's why they kind of lump them in. There was a great document that that EAA put out a few years ago, it's called shared and suggested roles of educational audiologists, teachers of the deaf and hard of hearing and speech, language pathologists.
[00:33:18] There is a lot of overlap in what we do, and there's a lot of things that, that an SLP can do it where I can do depending on what it is. But there are things that only in SLP. Things only a teacher of the deaf can do and things only an audiologist can do. And that shared, suggested roles document from EAA really outlines what, everything that needs to happen for a child who is deaf or hard of hearing.
[00:33:42] And then which person is the only profession that can do it. And then. There are checkboxes in those that are already there saying this is the job for an audiologist, selecting, and fitting how adequate that is an audiologist job, but then there's some, some you know, boxes that aren't checked, which means anyone can do it, but who is assigned to do it?
[00:34:03] That's also important. One of the things I mentioned before is daily checks of hearing aids, cochlear, implants, and HAT. That doesn't have to be on by an audiologist or even a speech language pathologist, but who is going to do that? And it needs to be intentional. We need to be talking to school teams about, okay, well, it has to be done.
[00:34:23] And the classroom teacher is not the right person to do it because they are busy with 23 other people. So what else, who can we teach? You know, I basically say I'll look at a group of teachers or a team and say, okay, well who who's got the, the tech team. It's got the technology gene who will, who likes doing that kind of stuff.
[00:34:42] And then I grabbed them either the nurse or the teacher's aid or someone who's available and accessible to check the child's equipment on a daily basis. So all of that information is in that shared the shared resources. And then you can go through and kind of write in whose job is it to do that. And who was their backup?
[00:35:02] And it's a, it's a, it's quite extensive, it's an extensive document. And I certainly recommend that people will look at it because it's also good for advocating. You know, if, if a parent is learning that. A computer tech is fitting their kids equipment. I've had it happen. They can use this document to say, you know, this is an audiologist job, not the computer tech people.
[00:35:26] You know, one of the things I mentioned about whose job is it, you know, teachers, the teachers of the deaf and. SLPs, aren't trained to fit equipment. They're not trained to select a pro to select the equipment they're trained to maintain it. They're trained to, to, to, if there's something wrong to maybe fix it or get started at fixing it, but that's not their training.
[00:35:47] And so that's what an audiologist is trained to do. So that's shared and suggested roles of educational, audiologists, teachers of the deaf and SLPs. That is a great document for people to take away. And I learned what, who should be doing what.
[00:36:00] Carrie: And I think your point earlier about the fact that whether it's on the 1% of a very small percentage of students who are on IEP, who have deaf and hard of hearing as a primary disability, this document is so important for, like you said, it's a checklist it's very detailed for these teams that are not used to having a student in the district who needs these services.
[00:36:25] Kym: They don't know what they don't know. It's, it's just that they don't know. They think, you know, when you and I have both had this experience where they go, oh, those hearing aids or those cochlear implants, they're just going to fix everything. And they're just going to be like glasses. I'm wearing glasses.
[00:36:40] You know, my glasses make me see 20, 20, it's the same as hearing. And we all know who work in audiology. That's not the case. And so, you know, and, and so they just assume that the technology is the only thing the child needs and. Nothing, you know, the accommodations are lesser and there's just so much that needs to happen in order to have high expectations for deaf and hard of hearing kids and to make sure that they are reaching their potential.
[00:37:05] Carrie: Definitely. Is there anything that I didn't ask you that you're like, I wish I would've asked you that you want to share with all of our listeners
[00:37:17] Kym: So a few years ago I, I did this kind of this presentation to mainstream conference, Rochester, New York. And one of the things, because, you know, I, I knew what I thought I knew, but I said, I want you, so I did one of those, you know, they can type into their phones and it comes up on a screen what they're saying.
[00:37:35] And so one of the questions was why do you as teachers of the deaf, why do you need education on. And I was kind of, it was just so nice to hear there and I still have it. You know, I, I don't know the most current technology to support the student as well as the interpreter with hearing aids and cochlear implants to troubleshooting.
[00:37:54] As a teacher, I spend my time researching best practices and teaching. I don't have the time to learn all the tech as well on they're the experts, the audiologists are the experts. And so it was really kind of, I, whenever I need, I feel like a little down, I go back to this list because it's important to say, you know, they don't, they don't want to do teaching job.
[00:38:13] That's what they want. They just don't know how to, to navigate their administrator to say, this is not my job as well. I'm not everything with deaf and hard of hearing and SLPs. My, no, even less about deaf and hard of hearing, like I said, they have one class. So we need to provide that, you know, we're here to kind of give you the terminology so that you can kind of move forward and, and maybe get educational audiologist in your district, either hired by your district, a consult model.
[00:38:41] You know, at someone at, at at least to make sure that the clinical audiologist is part of the team.
[00:38:48] Carrie: No, this is a wonderful information, and I hope that our listener to this today. We'll be able to use our, these incredible resources and your webinar in order to create that ripple effect. If they currently don't have an educational audiologist, how, how do they access one or get one in one shape or form, if I listeners would like to get in touch with you, how would they do that?
[00:39:13] Kym: So I'm very active on Twitter at K Y M P Meyer. And so that's one way to get in touch with me. I have a website, it's with some still building it, but it's kymmeyer.com and you know, and what we'll do is I'll put in the show notes, my email address, certainly if anybody wants to contact you.
[00:39:33] And I
[00:39:33] Carrie: can also put your Twitter handle and your website address in the show notes too, so that our listeners can get a hold of you that way. Well, Kym, I just want to say thank you so much for being a guest on the empowEAR Audiology podcast. That was such a positive, I guess, empowering conversation about educational audiologists and how we can help our students who are out there in the schools who had deaf and hard of hearing to really get all of the services that they need.
[00:40:01] So thank you for being a part of this.
[00:40:02] Kym: Thank you so much for this opportunity. It was wonderful. It was great talking to you and seeing you again.
[00:40:08] Carrie: All right. Thank you listeners for listening and tuning it.
[00:40:12] Announcer: This has been a production of the 3C Digital Media Network.

Episode 34: empowEAR Audiology - Dr. Derek Houston 

 [00:00:00] Announcer: Welcome to episode 34 of empowEAR Audiology with Dr. Carrie Spangler.
[00:00:17] Carrie: Welcome to the empowEAR Audiology podcast, which is part of the 3C Digital Media Network. My name is Dr. Carrie Spangler. And I am your host. I am a passionate audiologist with a lifelong journey of living with hearing challenges in this vibrant hearing world. This podcast is for professionals, parents, individuals, with your own challenges and those who want to be inspired.
[00:00:45] Thank you for listening, and I hope you will subscribe, invite others to listen and leave me a positive review. I also wanted to invite all of you to visit and engage in the conversation on the empowEAR Audiology Facebook group. Transcripts for each episode can be found at www dot three, the number three, C digital media network.com under the empowEAR podcast tab.
[00:01:19] Now let's get started with today's episode. Again, welcome to the empowerEAR podcast. I am so excited to have a friend and colleague with me today, Dr. Derek Houston. And I'm just going to share a little bit about Dr. Derek Houston. He joined the department of otolaryngology, had a neck surgery at the.
[00:01:41] Ohio State university college of medicine in July, 2013. He received his doctorate in psychology from John Hopkins university in 2000. his graduate training research focused on how normal hearing, typically developing infant segment words in fluent speech and recognize words across different talkers. After graduating, he moved to Indiana university school of medicine and constructed the world's first laboratory to investigate the speech perception and language skills of deaf infants who received cochlear implants.
[00:02:19] Since then his work has investigated the effects of early auditory, deprivation and subsequent cochlear implantation on speech discrimination, attention to speech, sensitivity, to language, specific properties of speech, word learning, and general cognitive skills in deaf infants and toddlers. His research in Columbus, Ohio represents a collaborative effort between OSU and nationwide children's hospital.
[00:02:51] His work is currently funded by the national Institute on deafness and other communication disorders. Dr. Houston is currently director of the Buckeye center for hearing and development, whose mission is to make discoveries that will empower care givers of children who are deaf. And hard of hearing with knowledge that will help them foster.
[00:03:15] The children's development in alignment with the goals and culture. Welcome Dr. Houston to the empowEAR podcast. I'm so excited to have you today.
[00:03:28] Derek: Well, I am very excited to be here, Dr. Spangler. It's I really love your podcast. You know, this format for, you know, having people come on and talk about their personal journeys.
[00:03:46] With hearing loss, I think is so important. I mean, each person is different. Each person has different experience. So I think that we just learned so much from, you know, I've learned so much from you and I think, you know, each of each of your guests and their own journeys we just learned so much from, so I'm really happy that, you know, you're not, I, I will probably be like one of your less interesting guests, cause I don't have that personal jouirney hearing loss, but I nonetheless very much appreciate you.
[00:04:17] You know, inviting me on here.
[00:04:19] Carrie: Well, thank you for being here. And I know this is going to be a great conversation cause you have a lot to offer and I love being able to have guests who have personal journeys, but also have a lot of professional and research background to help empower those who on.
[00:04:37] This journey, regardless of where they're at, but before we get started, I thought I would just kind of take a step back and figure out when did we actually meet? I feel like we met at
[00:04:51] Derek: yeah, yeah, yeah. That's that's it at the, yeah. So when I joined shortly after moving to Columbus and joining Ohio State I was invited to serve on.
[00:05:03] That committee for the state's committee advisory committee for universal newborn hearing screening. Yeah, and I, the first meeting I, you know, came early. I didn't, you know, because I didn't know where to go, so I want to make sure I was there on time and I came early. And you were there, you were there with somebody else?
[00:05:20] I don't, I don't remember who, but anyway, I just remember, you know, that. You know, you being you and the friendly person and welcoming person, you, you are, you were like, Hey, who are you? It's like, oh, I'm new here. I'm Derek.
[00:05:35] Carrie: Nice to meet you. I probably said it just like that.
[00:05:39] Derek: Yeah. Yeah. And then, and then and then, you know, shortly after that, or maybe within the next year, we had some changes to, to some of the. Administration of the EHDI system in Ohio that led to, you know, a group of people, you know, getting together and just, you know, kind of discussing the implications.
[00:06:03] And then that led to like, You know, projects that has been one of the favorite projects of mine that I've ever been involved with with, you know, with you and Todd Houston and no relation Maria Sentelik and Wendy Steurwald and then, and Jessa Reed. My post-doc at the time got funding through the Oberkotter foundation to do kind of a survey of the state on families on families' journeys with hearing loss in the, in the state of Ohio and, and kind of like what, what kinds of you know, challenges they face, you know, it was, you know, it was a broad look at what their experiences were.
[00:06:45] It wasn't focused just on like, you know, the state EHDI system per se. Like, you know, what, what are some things that are challenges where some things that, you know, they really enjoy enjoy. And, you know, I think we learned a lot from that. And that's, you know, kind of, you know, kept you know, several.
[00:07:05] Or I guess it's led to several collaborations of of different kinds, but that was, that was a really fun project that we, you know, you and I were both on this steering committee together and, and then remembered Cheryl. Cheryl Johnson was our facilitator that we were able to, to bring on and and and then a ton of people of different.
[00:07:27] You know, perspectives throughout the state different viewpoints from different areas of the state, you know, came together to, you know, develop focus groups, questions, and surveys. You know, we had of course audiologists, speech, language pathologists, but also teachers the deaf parents people in the state agencies early intervention providers.
[00:07:50] And indeed even, even a grandparent, right. Who were, who were all involved in this project. So that, that was a lot of fun. And that was, yeah.
[00:07:59] Carrie: Yeah, it was. And I think what we gleaned from that we can still use moving forward as we work on other collaborative projects to help our state and hopefully others too, who are on this journey.
[00:08:15] Derek: Yeah. Yeah, absolutely. I think the key lesson for me was really, you know, listening to families and, and other professionals. And really, we have a lot that We can learn from each other as in terms of like what's really important for families on, on their journey and how we can, you know how we can best support them.
[00:08:39] Carrie: Yes. So kind of taking another step back. I always like to ask my guests how they actually got into the field of working with children who are deaf and hard of hearing. So how did you get into this?
[00:08:56] Derek: All right. So I knew you're going to ask this cause you, you always do. All right. So I, so go back to 1999.
[00:09:04] All right. Early in 1999, I'm a graduate student in psychology studying infant speech perception. So just. Perception with typically developing, typically hearing infants in, in Peter Jusics lab in Baltimore. And I'm, I'm sitting there in the lab. I'm analyzing data for my dissertation project, which was about infants ability to recognize words across different talkers.
[00:09:32] Okay. and Peter comes in to the room I was in. And you know, it doesn't say hello or anything. He just says, wants to know why you haven't. To be a postdoc with him yet. Okay. And so he's referring to, to David Pisoni and David , you know, is, and, and, and was, you know, even, you know, 20 plus years ago, a huge, a world renowned figure and in speech perception.
[00:10:01] So I'm just like, Thoughts are racing through my head. Right. I'm thinking, okay, how does David Pisoni even know who I am? Okay. Yeah, we've met once because he happens to be, you know, a friend of, of my advisors. You know, but like he has lots of colleagues and friends and they all have lots of students.
[00:10:20] Second, I didn't know that he had a postdoc position available. Why does, like, he think I should apply for it? Why, why is he wondering why. I haven’t already applied for it. So as I'm just like, you know, thinking all these thoughts, just kind of staring at Peter, you know, with a blank stare he goes, well, just go ahead and apply.
[00:10:41] It'll be a good experience for you. And you know, it'll appease PIsoni and, you know and, and anyone who knows David Pisoni will laugh at. Hearing that, you know, it'll a piece presented, cause they'll they'll know exactly what that means. And, and, and, and it's actually a very positive thing. It's just that the, you know, he's, he's very intense person.
[00:11:01] And, and, and if he has, if he has an idea of like that, something should happen, you kind of won't let up on it until it happens. So, so yeah, so I, I go, he, so he was at Indiana university and he was you know, he's in the psychology department, he's also a psychologist. And but collaborating with the cochlear implant program up in Indianapolis.
[00:11:23] And so I go out to Indianapolis to, to interview you know, and I, and ahead of time, I, I, you know, I think, well, I had heard that. David Pisoni, had started collaborating in this new area of cochlear implants. I didn't know what a cochlear implant even was, you know, at, at that time. And you know, You know, he, he sends me, so I get the mail, like this pile, like it's like, it's like, like four inches thick of, of papers right ahead of my interview to read.
[00:12:01] And so I started reading them. Oh, actually, this topic's really interesting. So, you know, maybe, maybe this could be really interesting and then, and then I go there and I just, you know, I just fall in love with the people, like, you know, immediately just with the work that they're doing and the, and the environment you know, there was Karen Kirk was there Maria Skriski of course, Richard Miyamoto.
[00:12:24] You know, the, the, the chair of the department and cochlear implant surgeon, Steve Chen. Marsha Hey McCutchen was there at the time. And the, we had our cochlear implant, audiologists, Wendy Myers and Kelly Laura Moore and speech language pathologists, Liz yang, Kara Kaiser, and Shelley Goldar and you know, a bunch of, a bunch of other people.
[00:12:45] It was just, you know, as and then all the people who can. You know, through there during the 15 years I was there just like incredible you know, a group of people. So, you know, this was yeah, I just thought, wow, this is like a really interesting opportunity to work in an area that you know, where.
[00:13:08] You know, it's an opportunity to understand neuro-plasticity sensitive periods of language development to understand, you know, add up how infants might adapt to this new signal. So it was really, you know, kind of just like in an intellectual interest to begin with really, to, you know, be honest and and, and then.
[00:13:32] You know, but I did, you know, actually my first interest in this is, you know, a whole other story was, was in aphasia actually. And then and so it was like, okay, well, you know, now I'm finishing my PhD in this, you know, sort of basic science area. It would be, you know, really interesting. And, and, you know, I think that it be fulfilling to work in an area that, you know, might have more direct you know, impact in the lives of people who, you know, have challenges.
[00:13:59] With communication. So that was, that was really you know, appealing to, so yeah, so that's, that's where it started and, you know, and, and since then, You know, it really just has, has been inspiring, you know, how much I've, I've learned from and, and, you know, really made it, you know, it's something I'm, I'm, I, I'm really more and more focused on, you know, wanting to understand what will, you know, help families on their journey with with hearing loss.
[00:14:31] Carrie: Yeah. I love hearing how people get into this little niche of a profession. And I love how you bring that psychology perspective to our field be out too. Cause we don't always, there's not enough of you to bring that kind of lens to our field. But kind of taking a step back as far as language and. You know, your whole focus is really been on that early editorial experience and language development from that whole child perspective.
[00:15:05] Can you just take a step back and kind of look at it from a more global perspective of how language as a system, how we communicate with each other, whether it's, you know, through a spoken language or a sign language. How does having a direct or indirect exposure facilitate growth? For communication?
[00:15:29] Derek: Yeah, a director or indirect exposure to, to language. Well, really language needs to be direct. I mean, you know, we. Yeah, I don't know how big picture I want to go, but but I mean, let's just, you know, go back and, and, you know, think of us, you know, in terms of like being human beings. Right. And why do we even have language?
[00:15:56] And we have language because we are highly social animals. I mean, it, it, we probably evolved language. Because of a need for a social interaction and understanding each other's intentions so that we could cooperate better for survival. Right? So So language didn't evolve to be, you know, an intellectual exercise to learn it, it, it evolved in order to help us interact better with the, with each other and more effectively with each other.
[00:16:34] So and, and now we have a lot of research, a lot of evidence showing that that infants and children really don't learn much from indirect Exposure to language. They don't learn much from, from watching people talk on TV and or from, from overheard speech. They, they really, they really need that social interaction to to connect with language and to makes sense of it.
[00:17:03] And you know, it doesn't matter if it's, if it's spoken or sign language other, you know, any more than it matters. If it's, if it's English or Spanish humans have evolved to be very good at decoding linguistic systems when they are motivated to do so by, by social interaction.
[00:17:25] Carrie: And basically the key is having that direct language
[00:17:30] Like immersive language, no matter what it is.
[00:17:33] Derek: Yes. Having an immersive and having it connected to social interaction. Right. So like there's a lot of You know, there's a lot of emphasis on, on language input. And you know, and most people do also emphasize the interaction part of it, but that, you know, I think we could do more to, you know, continue to emphasize that too.
[00:17:57] So, you know it's, it's not just about like how much. You know, you talk to your child, it's about turn-taking with your child, engaging them in, in social interaction and, and, and having them integrate language as part of that social interaction. And of course, social interaction can be just like, you know, smiling at each other.
[00:18:19] That's that social interaction. But then, you know, incorporating language into that is, is really what is going to hook language into the child's brain.
[00:18:31] Carrie: So knowing what we know about language as a whole, when your new research, you focus a lot on children who are deaf and hard of hearing, and in particular, those who receive cochlear implants.
[00:18:44] So how does that part of it impact language.
[00:18:52] Derek: Yeah, well, the you know, a child with a cochlear implant, you know, so we're talking about children with, you know, typically severe to profound hearing loss. So they've had very little to no access to sound before they get a cochlear implant. Right. And you know, during that time, You know, the, the brain doesn't wait for, you know, all these experiences to happen, to develop it's, it's going the brain develops based on the input, that and experiences that it is getting no, no matter what it's getting and, and you know what it's not getting.
[00:19:29] So, you know, the brain is highly adaptive and, you know, we, we, you know, and this is a good thing, or this is like, you know, this gives us neurodiversity, you know, No two brains are, are alike. And, and, and then a, you know, then when a child gets a cochlear implant, then there, you know, is you know, then adaptation to a new signal is is needed.
[00:19:53] And, you know, I think that, you know, what we're seeing is that what you know, so, so I guess what's different for these infants and children is that, you know, maybe attention to sound and to speech isn't as automatic. Right. It's maybe more effortful. And that's because they've, they've been.
[00:20:17] You know, plugging along, you know, fine, you know what, you know, without sound or, you know, or that that's the experience that they know. So now they have this new signal that, you know, they, they, you know, have to learn to make sense of for, to, for it, to be meaningful for them. So, you know, so then, so then that's where, you know, language development.
[00:20:42] Is more of a challenge. I think you know, the, the signal itself is always going to be, you know, not as you know rich or detailed as it is for typically hearing children, but there, there's also this aspect that what's, what's new. Is, you know, integrating the sounds with what they're experiencing in the world.
[00:21:06] So that's been that, that for me has been a real learning journey because, you know, I came into this field, as I just said, as an, as an infant. Speech Perception person. So I just was really, you know, one of the things that my colleagues and I say is, you know, the ears connected to the brain. We, you know, remind ourselves of that.
[00:21:25] And so developing language for a child with cochlear implant You know, giving them optimal access to fine grained, acoustic phonetic information is important, but that's not the only challenge. The it's also another challenge is integrating what they hear with, with their other experiences in the world because they've developed.
[00:21:49] Up until getting a cochlear implant there, their brain has developed without the auditory input. So it's really something new that they have to learn to, to integrate in with everything else.
[00:22:00] Carrie: And I think your research you've been able to really propose a Conceptual framework to dig deeper into this topic, like using your knowledge of, children of a typical hearing, as well as those who are deaf and hard of hearing to a, an idea called TAAC.
[00:22:19] And I'm going to let you explain and dig deeper into this idea, but taking a total language input directed to children is moderated by what is accessible, attended, and coordinated with the child. So I guess maybe picking this apart a little. What would you describe as accessible and how does that impact children with cochlear implants?
[00:22:44] When it comes to spoken language acquisition?
[00:22:48] Derek: Yeah. So actually, can I, can I say something about like this conceptual model? Cause like, like I feel almost uncomfortable, like, like saying that it proposed a conceptual model. So I feel like I almost have to like justify this. And so this came about by, I was, I was invited to submit a manuscript.
[00:23:11] To a journal. I won't name the journal because it's, it's only like kind of sort sorta provisionally accepted right now. So maybe these last revisions, they'll say, nevermind. And this'll be the last you ever hear of this conceptual framework. But you know, they want me to be kind of summarize, you know, some of, some of the work that my colleagues and I do.
[00:23:31] And and so I did that and then, you know, the reviewers, like, ah, you know, this. Nice summary, but can you kind of put it together in like a little bit more of like a conceptual framework? So they, they said, you know, can you put together a conceptual framework? So, so I did. So I said, okay, you know, I'll, I'll, I'll, you know, try to try to do then actually it's been helpful for me.
[00:23:52] In terms of just like, I don't think, you know, it's nothing. You know, earth shattering or anything. But kind of just like helping me and maybe it'll help others, you know, just to sort of think about things. And part of what motivated it also is that, you know, there are. With typically developing children.
[00:24:17] There's a lot of evidence that, that there's a pretty strong relationship between amount of language input the children receive in their language development with deaf and hard of hearing children, including children with cochlear implants, the findings are pretty mixed. There's actually like not very good evidence for that relationship.
[00:24:37] And, and, you know, that's like really puzzling, right? Cause you, you. You know, in some ways like it should be even more important. Because you know, that, that, you know, they're, you know, being children at risk for difficulties with language development, you know, having, you know, a lot of input is, is is going to be important.
[00:24:57] So this is kind of an attempt, you know, for me too, You know, try to kind of unpack and think about, you know, why so far we're not seeing a lot of evidence for this relationship. And, and so that's, that's where, so, you know, each of these things accessible, attended and coordinated, these are, these are all things that I think are more variable for children with cochlear implants and therefore you know, kind of complicate
[00:25:29] The relationship between language input and language, language outcomes. So I just, I just wanted to sort of give a little bit of a framework for talking about this conceptual framework. If we're going to go dig into it. So we're on the first part, right? The accessible. What does that mean for language development?
[00:25:53] Yeah. So for kids who Cochlear implants. So of course, you know language input, isn't going to do a child any good. If, if they can't hear it, if it's not accessible. So this is, this is really this first level. And, you know, for a child with cochlear implant, it's, it's, it's not accessible if they're, if their cochlear implants not on, right.
[00:26:18] If they're not wearing it. Right. And we know that children who receive cochlear implants are not always wearing their cochlear implant. Right. So that that's, that's one factor. And you know, for children are typically hearing, you know, their ears are always on. So, so that particular variable is, is or.
[00:26:42] Factors less variable for typically hearing children than it is for children with cochlear implants. Also audibility is more variable for kids who have cochlear implants and also sensitivity to environmental noise, or I guess say, you know how the degree to which environmental noise will will, will sort of block access to sound is, you know, all these things are more variable for, for kids with cochlear implants and than they are for kids with a normal hearing.
[00:27:14] So. That is the first step at which the relationship between language input and language outcomes, you know becomes kind of complicated to look at for kids with cochlear implants,
[00:27:29] Carrie: but taking an unpacking it that way helps families or, you know, other professionals, working with the children to really think about like amount of time and a good mapping.
[00:27:42] And you know, is the TV on, in the background inthe house and, and all of those variables that maybe you don't think about with typical hearing children because they can filter out that background noise or they don't, you know, it doesn't impact them as much, but having that accessibility for children with cochlear implants and paying attention to it is going to be important.
[00:28:07] Derek: Yeah. Yeah, absolutely. Yeah. And I think that this is what, you know, people who work with these families, you know, emphasize a lot. Right. You know, clinicians emphasize this stuff. So,
[00:28:19] Carrie: so then the next part is that concept of attended language input. So what does that mean?
[00:28:26] Derek: So that, that means that, you know, we have to remember that just because a child can hear something doesn't mean they're, they're attending to it.
[00:28:37] And attention is, is, is fundamental for learning. And we know that. Attention to speech is different for children with cochlear implants than it, than it is for children with normal hearing. So, so the, this is, you know, so we have several studies showing this that it's not as, it's not as automatic.
[00:29:03] So even if something is presented above threshold children with cochlear implants, we have found do not attend to all types of speech as much as, as normal hearing children. And more specifically you know, you have this like type of speech that's referred to as infant directed speech right or motherese is like, how, how we talk to how we talk to infants.
[00:29:28] In, in one of our studies, we found that at. Older ages then. Okay. So let me back up. So for typically developing children they show an attentional preference for infant directed speech over adult directed speech, but it's, it starts to fade away. You know, at older ages say, you know, 18 months, two years what we found was that fortunately a cochlear implants, even at older ages, they show that preference.
[00:30:02] And actually they, they, in our experiment, they showed no preference for adult directed speech compared to hearing nothing. And, and so it, it really suggests. You know, there are that it's really important. Kind of like what the speech sounds. I, two children and cochlear implants. Now I'm saying that in a way that's being, you know, maybe I'm generalizing too much, like really what our findings show is that there's more variability in, in attention.
[00:30:38] To speech and in children and cochlear implants. So some kids, cochlear implants are attending to speech just like chills as normal hearing. But that others aren't. And so again, this is this like increased variability on this factor is, you know, complicating the relationship between amount of language input and, and language development.
[00:30:59] 'cause, you know, two parents might be providing, you know, two families might be providing their child with just as much, you know, the same amount of accessible speech, but for one child, just the way their attentional system has developed, they might be attending to more of it than, than another child. And that, and that will probably lead to you know, different language outcomes.
[00:31:25] So I think like really paying attention to what the child is actually attending to is important
[00:31:34] Carrie: because if they're interested in it, then they're going to be more likely to gain that language input Then, if you're talking about something that they aren't interested in attending to. Yeah. So, and then going back to the motheresewhat you talked about and, you know, typical developing a typical hearing children, you said about 18 to 20 months, that kind of.
[00:31:58] Don't attend to it as much. Do you might
[00:32:01] Derek: be misremembering the exact ages. So
[00:32:07] it's some something around that. Yeah.
[00:32:09] Carrie: Do you think that because children who are severe to profound and typically don't get their cochlear implant till about a year of age? Need to have that motherese for a longer period of time, because they've missed both in utero hearing. If they were born with a hearing last and that possibly first year of hearing until they're a candidate to get a cochlear implant, they need to almost their brain needs to hear that .
[00:32:42] In order to have that stepping stone for good language
[00:32:47] Derek: access. I think that's an excellent hypothesis, Dr. Spangler. And we, we are right now analyzing data for a study that is looking at novel word learning. I mean in children with cochlear implants under conditions of infant directed and adult directed speech.
[00:33:06] And so this is, I think, getting this will address your hypothesis, I think to some degree, because what we will find out is if, because we, in, in a previous study with typically hearing children, we found that not only do infants prefer infant directed speech over adult directed speech, but actually helps them learn words better.
[00:33:29] But this, this benefit of infant directed speech of motherese goes away for this at, at, you know, around again around two years of age So we, what we'll find out in this study is if the benefit of infant directed speech, actually, if there is any benefit at all of infant directed speech for kids who have cochlear implants, and then if there is, does this, does this benefit persist, you know, later into development than, than what we found with typically hearing children?
[00:34:05] Carrie: Well, you have to let me know what the outcome is
[00:34:09] Derek: I will. I definitely
[00:34:11] Carrie: will. And then you also mentioned coordinated language in print. Can you share more about what that means? Yeah,
[00:34:19] Derek: that's about joint attention, right? So, so we, there's a huge literature on joint attention and, and typically developing children and, and, and other populations and particularly for developing a vocabulary for learning words it's important that, you know, parents and children are, you know, sort of potentially on the same page, right.
[00:34:40] That the child knows what the parent is attending to. The parent knows that the child is attending to it's even better if they both know, you know, that the other knows what, what they're attending to. And, and then that helps children connect what the parent is saying to what they're experiencing. So like, you know, if, if, if.
[00:35:04] You know, if a child is playing with a toy and they hear, you know, a. The parents say Blick. Okay. They, they may or may not attach that word to that toy. And part of what will determine that is if the child is attending to it, but also if the parents is attending to it and if the child knows they're attending to it if, if the child is playing with that toy, you know, say called a Blick.
[00:35:32] But then like, you know the, the parent talks about the Modi. You know, a different toy, then, you know, that's labeling something else that the child is not attending to. And you know, that, that as you can imagine, that might not encourage or facilitate learning of that particular item. So.
[00:35:56] You know, so it's, so basically what we mean by coordinated is the degree to which the parents language is coordinated with what the child is attending to. That's one sort of meaning of, of coordinated. A second. One is the degree to which the language is coordinated with the child's development.
[00:36:19] Because. You know, if, if if a you know, if a child is at a very early stage of language development and they're, you know, processing of language is maybe you know, not, not as efficient than. You know, they, they might need like this motherese or infant directed speech. Whereas like, if, if the parent isn't, you know, it's just talking, you know, maybe like really quickly, like they would with an adult, then that would be sort of like, That's what I mean by sort of not being coordinated with the child's development.
[00:36:58] Right. And I think that this is, you know, this is a, can be a challenge for parents w for children, the cochlear implants, because you, the, the way parents speak with their children changes. With the child's development but a child that gets a cochlear implant, you know, their, their sort of cognitive age, their developmental age is, is different from their, their hearing age.
[00:37:29] You know, we sort of have no idea, like at this point you know, like what would, you know, should, should a parent talk with a kid who is two years old, but had a cochlear implant for six months? Like the child is a six month old or should, should the parent be talking to the child and, you know, Yeah, I hope nobody is like looking for answers to that question.
[00:37:57] Cause we, we don't have answers to that question. We do have evidence that, that some parents do sort of use at least intonational patterns that are. More aligned with the child's hearing age when they have a cochlear implant than that, than it is with their, with their chronological age that that's worked by my colleague, Tonya Bergeson.
[00:38:21] But I, I guess we, we don't really know at this point, if that's like beneficial or not, or detrimental or, or whatever, or anything
[00:38:29] Carrie: beyond, well, I know we have like a lot of unanswered questions. Yeah, it's just the nature of the field and not knowing. And like you said, there's so many variables too. For children who are deaf and hard of hearing and get cochlear implants.
[00:38:50] However, I think you, like you said, you've done so much research and we do know, we do know a lot too at the same time. And I think this framework and just kind of putting it into these. This way with accessible and attended and coordinated language input is a, you can grab onto it, like if something that you could apply, but taking that framework that you kind of put together or piece together.
[00:39:21] What can we share with parents or professionals who are working with these children to positively facilitate spoken language acquisition for children who are deaf and hard of hearing and who have cochlear implants? Do you have like a top five or something to get our listeners started with?
[00:39:43] Derek: Well I, I think really I can.
[00:39:47] Really just emphasize probably. You know, some of the things that probably they're there, you know, speech-language pathologists or audiologists are probably already telling them. But let me just emphasize you know, the importance of, of interactions of, of back and forth communication. Again, it's not just about like how much.
[00:40:10 parent is talking with their child, but the back and forth I think, and, and this involves in terms of coordinating of attention, this, this might be you know, thinking, you know, probably doing more following of attention. And what is your child interested in and talking about that rather than doing, you know, more, more directing of the child's attention, I think has, has been found to be beneficial.
[00:40:40] I think Okay. Now we all, I am guilty as guilty of this as anybody else, but I think we all should be paying attention to how much time we're spending on our smartphones on when we have children. There, there are actually studies out now showing that this is like we're w we all, all of us I'm, I'm included you know, we're, we are When we're on our smartphones, we're not engaging with our children.
[00:41:06] And, and, and we're, you know, we're losing opportunities to, to communicate with them. So, you know, we all, we all, you know, nowadays need to be on our smartphone some sometimes, but, you know, I think just like we should be cognizant of how much time we're spending on it. Also, you know, environmental noise.
[00:41:27] I mean, I think that. You know those of us with typical hearing, you know, I think that it's hard for us to appreciate the challenges of dealing with noise. So, you know, I think it like really, you know, we have. You know, sort of exert some mental effort to like keep, you know, remember that this is like an important thing to be paying attention to so that you know, so that our children with hearing loss can you know access and, and attend to what is being said more, more easily by, you know, trying to reduce the amount of Of environmental noise.
[00:42:08] I think, and this is something I've, I've, I've kind of learned or, you know, thought about thanks to some talks that I've, I've heard recently. But I do think is a really important thing to keep in mind is, is. This idea of fostering joy in, in communicating with your child you know, having joy in it is very motivating.
[00:42:34] And you know, so, so it's important. Like it's, it's really actually important not to think of this as always just, just. Right. That, that it is, is going to, to, to, to let yourself just, you know, feel the joy of the journey of interacting, you know, with your child is, is not you know, is, is. It is not you know, sort of being lax in your, in what you might think is your duties as a parent, you know, to, you know, help with language development.
[00:43:10] It is actually helping language development by, by enjoying it because. Infants and children are very sensitive. I mean, we have evolved to be very sensitive to, to each other's emotions and social interactions. So to, to feel joy yourself in the interactions we'll, we'll help children. Enjoy the interactions, you know, if I enjoy the interactions also in that and that, that, okay.
[00:43:39] I don't have any research really to, to, to point, to, to, to prove that. But I feel strongly that that's, that's the case. And, and there is some research that, that, you know, In, in general, fostering joy is, is helpful for motivation and in providing language input. So so to me that that's, that's, that's enough evidence to suggest that it, it is going to be important.
[00:44:04] And we do know that infants are very sensitive to, to our emotions.
[00:44:09] Carrie: No, I love that. That's a great way to sum everything up because there is a lot of work that goes behind the scenes and families have to know about and learn about in this whole journey, but to think about it as fostering joy throughout the journey can make that interaction more meaningful along the way.
[00:44:32] Derek: Yeah.
[00:44:34] Carrie: So just to kind of sum up today, where do you see this research headed? What, what needs to still be done?
[00:44:45] Derek: Well there there's a ton that needs to still be done. But I think the future, you know, for me, the future of research is, is, is that research, you know, shouldn't be, you know, done just by. You know, people with PhDs or, you know, other letters behind their names that that research should be science should be a community, you know, activity I've, I've learned so much from, from providers and parents that, you know, I really think it's important to to, you know, involve.
[00:45:22] You know, the people that we, that we want to help, you know, I think really need to be a part of like developing the research questions because you know, if we want the research to, you know, impact people we need to understand from them, like what, what are their challenges and what are their perspectives?
[00:45:46] What are their experiences? So I'm, I'm really excited about that. Carrie Davenport, who's a postdoc working with me is leading an effort to form, but she's calling a family research council to the, the idea of the project. And we're hoping to get some funding for it. Some support for it as is to.
[00:46:08] Is to make efforts toward bringing parents and, and and, and some providers like more into a little bit more into the research world. So that then, you know, we, as researchers have a little more common ground. With families to talk about research and to develop research questions. And, and that's, that's what I'm excited to do.
[00:46:35] I'm, I'm excited to do, you know, research that will lead to discoveries that will, you know, provide knowledge to to families so that they can foster a healthy language environment for their children.
[00:46:52] Carrie: Yeah, that's a great idea. Cause like you said, those are in the trenches. I understand the challenges of everyday life.
[00:47:00] And, but then to coordinate that with research can really solve some problems, you know, more discoveries along the way.
[00:47:12] Derek: I hope so. I hope so. Yeah.
[00:47:15] Carrie: So if, is there anything that I didn't ask you that you wish I would have.
[00:47:21] Derek: I can't think of anything. That's okay. We've covered. We've covered. We've covered a lot.
[00:47:26] Yeah.
[00:47:29] Carrie: If people wanted to get a hold of you, how should they do that?
[00:47:34] Derek: So I'm in the department of otolaryngology at Ohio State University. We have something that we call the Buckeye center for hearing and development that I'm a part of. And you know, so they could find that through the department's website, Okay.
[00:47:50] I mean, I could, I could read off the URL. Yeah.
[00:47:54] Carrie: I’ll link it in the show notes. And if people wanted to visit the webpage, they can do that. Okay. Sound good. Well, I want to thank you for being a guest today on the empowEAR audiology podcast. I think it was a great conversation and thank you for being a part of it.
[00:48:12] Derek: Thank you so much for having me, Carrie. It's been a real pleasure.
[00:48:16] Carrie: Yes. So listeners, I just want to thank you for engaging in the conversation and be sure to follow and empowEAR audilogy and our Facebook page. And if you liked this podcast, please share it with others so that they can listen in as well. And post a positive review.
[00:48:35] Thank you for listening.

Episode 33: empowEAR Audiology - Dr. Donald Goldberg 

Announcer: Welcome to episode 33 of empowEAR Audiology with Dr. Carrie Spangler.
Carrie: Welcome to the empowEAR Audiology Podcast, which is part of the 3C Digital Media Network. My name is Dr. Carrie Spangler, and I am your host. I am a passionate audiologist with a lifelong journey of living with hearing challenges in this vibrant hearing world. This podcast is for professionals, parents, individuals, with your own challenges and those who want to be inspired.
Thank you for listening, and I hope you will subscribe, invite others to listen and leave me a positive review. I also wanted to invite all of you to visit and engage in the conversation on the empowEAR Audiology Facebook group. Transcripts for each episode can be found at www dot three, the number three, C digital media network dot com (www.3cdigitalmedianetwork.com) under the empowEAR podcast tab.
Now let's get started with today's episode.
Carrie: Welcome to the empowEAR Audiology podcast. I am so excited to introduce our guest today, Dr. Donald Goldberg, and I have him with me today, and I know we are going to have an interesting, vibrant conversation. Before I have him come live on the air I'm just going to tell you a little bit about him.
Dr. Goldberg is a full professor and the inaugural chair of the Department of Communication, Sciences, and Disorders at the College of Wooster. He is a PhD. He's an SLP. He's an audiologist. And he is also an ASL certified auditory verbal therapist. He is a part time member of the professional staff for the section of Audiology and Hearing Implant Program at the Cleveland Clinic’s Head and Neck Institute.
Goldberg is also a visiting scholar at the university of Newcastle's Royal Institute for Deaf and Blind Children and North Rocks, Sydney, Australia. And that was from December, 2014 through February, 2015. Dr Goldberg earned his PhD at the University of Florida in 1985. He earned his bachelor's degree and speech language pathology from the university of Florida and his bachelor degree in biology education from Lafayette College in Easton, Pennsylvania.
He has been a university college professor and the co-director of one of the largest cochlear implant centers in the United States. And as the former executive director of the Helen BB Speech and Hearing Center in Easton, Pennsylvania. Dr. Goldberg has co authored the book Educational Audiology for the Limited Hearing Infant and Preschooler, an Auditory Verbal Program.
And he has written numerous books, chapters, published a range of research-based and clinical publications, and has been an invited speaker throughout the United States and Canada, and to 16 other countries. He was awarded the honors of the AG Bell Association of the Deaf and Hard of Hearing in 2018 and became a fellow of the American Speech Language Hearing Association in 2020 and will be honored actually coming up this November at the ASHA annual convention in Washington, DC.
Dr. Goldberg's most recent clinical work has been the field testing of the soon to be published test of auditory functioning by Blue Tree Publishing. So I'm excited to introduce to all of our listeners today, Dr. Don Goldberg.
Well welcome Dr. Goldberg to the empowEAR Audiology podcast. I'm so excited to have you today.
Don: Thanks for the invitation. I'm happy to be here.
Carrie: Well, I always like to start out with how, if I know someone, how I paths have crossed, and I don't know if you ever, if you remember meeting me the first time
Don: time.
Well I know there's a Carol flexer, Denise Wray connection, and I don't know if it was something at school or social, but I can just envision you with those two wonderful friends going, oh, this is someone you need to know, Don. And my sense is they said, this is someone you should know. Okay. I think that's
Carrie: like, I think I might've been in graduate school when our introduction first occured
So I think our paths have crossed multiple times, way back and multiple times along the way. So it's, it's great to still be
Don: connected. Absolutely.
Carrie: And I also like to ask my guest is how they actually got into the field of you speech pathology and audiology. Do you have a backstory
Don: to that? Well, at the risk of people finding the real deal on Don Goldberg, I went to a little college called Lafayette college, north of Philadelphia.
I wanted to be a veterinarian. And my first semester, keeping in mind, I have a PhD and I'm a professor. My first semester of college, I got a 2.64 GPA really bad. So I knew I was never going to get into med school or vet school. So I was checking out my options and this is not a negative cause I love teachers, but I started taking education classes as a minor.
I was a biology major. I graduated, but I took an education minor. I had no money, no car. So they placed me at an elementary school, close to the college. I walked from the college to this elementary school. And in that kindergarten class was Robert. I figured out the other day, Robert is probably in his fifties now, but a six year old changed my life.
He had two body aides on a harness. He went to this little shack of a building called the Helen Beebe speech and hearing center. My first acquaintance with anyone with hearing aids was Robert. And I assumed because I volunteered for the rest of my time at the Beebe center that all deaf kids listened and talked.
That was my start in this world of. Going to college, not sure what I wanted to do. And now I tell freshmen don't get us 2.64 mathematically. It's really bad. But the real issue was I then applied to grad school and I didn't even know which one I wanted to do. And when I went to the university of Florida, they said, do you want to go and speech, or do you want to go in audiology?
And I went, what's the difference? I don't know. And they said speech pathology. Work with people and audiologists work with machines. So I picked speech, language pathology, and all along. I wanted to work with kids who were deaf. And essentially when I got back to my doctorate, I then also took audiology, but I did learn speech pathologists and audiologists work with people and some machines, but a five-year-old changed my life.
Carrie: That's amazing. So all of those little pitfalls along the way, ended up being a good move and a long and fulfilling
Don: career. And even to go to Lafayette, I had no idea. People from around the world came to Eastern Pennsylvania. Helen Beebe was described as the crazy lady on college hill because she was teaching deaf kids from the 1940s.
When hearing aids just started. That many kids had a little residual hearing that could be trained. She was the crazy lady thinking a deaf kid could listen and talk. And at the same time she was doing that Doreen Pollack was doing that in Manhattan. Before she moved to Denver, these two grands who have changed my life, we're doing the exact kind of therapy and they never even met till years later.
Carrie: Yeah, that's amazing. And you said you volunteered at the Helen Beebe center, but you also. Work there as
Don: well. Yeah. During college I volunteered and I think it was novel. That's some boy from the college, some male came to the speech and hearing clinic. And I went down to the University of Florida because Helen Beebe was a speech language pathologist.
After I got my master's degree and worked in the schools and became certified, I went back to the Beebe Center. Learned about what I didn't know they were doing. Apparently there are behavioral objectives when you work with a child, I just thought you played old maid and concentration memory. And then I got my doctorate worked for a few years and ultimately did go back to the Beebe center as their director of audiology.
And then shortly thereafter became their executive director until moving out to Ohio. When my wife got her job at the Cleveland Clinic.
Carrie: Yeah. Wow. That's amazing to have that experience there too. Cause you are able to integrate it into a lot of other things along the way, but you also wear another hat as a professor.
So can you share a little bit about influencing the future of our profession at the college of Wooster?
Don: Right. Well, my wife grew up about 20 minutes from here in Lodi, Ohio. We used to come down to Wooster for the movie. When we came home at Christmas, the only thing they had in the north end of town was a movie theater.
So I knew there was Wooster. I never knew there was a college. Sharon got the job. Dr. Sharon Sandridge got her job working with Craig Newman at the Cleveland clinic. And I kept my step son back in Easton without his mother. I had Nicholas because we got married and I had a step son and he stayed with me.
And then I went. I think Nicholas, I love being your stepfather, but you need to live with your mom. He went to Ohio and I worked for one more year while they were out in Ohio. And I went, I got to find a job and literally just fate again. An opening came about at the college of Wooster, someone who was retiring after 30 years.
And I didn't even know Wooster was a school. And I've been here for off and on. I've worked here over 20 years, but I did take a five-year break to run the cochlear implant program at the Cleveland clinic with Peter Marsh, Pete Weber, who is a cochlear implant and one of cochlear implant surgeons in the past. So it was fate that got me to Wooster.
It's a diamond in the rough. It is a fantastic. Undergraduate only program at this point in time, over 30 of my students have either earned their AuD. Or have gone on to be currently in a doctor of audiology program. So tons of AuD students have come out of this program. Stacy Lim came out of this program and anyone can learn that our weird connection to the Beebe center Wooster.
And now one of my greatest friends. So anyway, with Wooster, we have speech pathology and audiology, but many of our students don't know which to do. So even if they go into and I'm a dual, so I have to like both, but even if I go or have students going into master's in speech, language pathology, I want them to be that SLP, who isn't afraid of an audiogram, can interpret the audiogram.
Isn't afraid of technology. And as you can relate. Lots of audiologist know their hearing aids. I want all audiologists to also know about typical speech development, typical language development, and we got to work collaboratively. I know this is an interview with me, but I can't not shout out. The summit ESC is a beautiful model of this preschool program, three or four of the best educational audiologists I ever have met.
I told a family of a baby move to Hudson Ohio. You'll get Carrie as your educational audiologist. They have a baby who is just implanted yesterday. The youngest kid ever implanted at the Cleveland clinic, seven months old. There'll be eight months and four days. And they bought a house in Hudson because ESC and what you all provide is that collaboration of working with an implant team, speech, language pathologist, and someone on your team, or more than one person, who's a LSLS cert AVT ED.
We need to work collaboratively and not be in our silos. I have so much and so proud of those speech pathologists who may not work often with hearing impaired kids, ever respect for audiology and vice versa. So I guess if I was to look, reflect on Wooster, lots of stimulating thesis students, I said I would retire when I got to 300.
Well, I've done 285 thesis students. Cause everyone does a thesis. Yeah, it sucks the marrow out of my bones, but it is so reinforcing and I missed it When I spent five years, full-time at the clinic. I wanted to come back to this incredible institution and I'm, it's not easy to retire. So I'm going to do phased retirement.
Carrie: Well, that's amazing that you've had that impact on, so. The students along the way and just kind of gave him that foundation for what they're going to go to next. Right. And and I appreciate what you said about the summit ESC. And I tried there because I I'm proud of everyone there. And like you said, you know, speech pathology and audiology and teachers of the deaf need to be collaborating together.
And we all bring a different lens and perspective to the picture and that's what our kids deserve in order to be successful in whatever they want to do. Yeah. So I learned, you know, how you have the little background with Stacey Lim and knowing her from a young age and, and college and on, I feel like that's my Carol Flexer and Denise Wray.
They were knew me from a younger age and got to see me through. Cool and still have that, but I saw those two together and I was like, that is a perfect match to have the audiologists and speech pathologist working hand in hand. And that's really like what you said needed to happen in order for our kiddos have used it to do well.
Don: Right. And I think the other component is I work with so many kids at the early end. My most common, cause I have a limited caseload at the clinic I triaged and have all the babies and anyone on the CI track. And I used to say, cause obviously Carol Flexer and I have done research on graduates who are adults.
I used to refer to my three and four year olds at the clinic as graduates because they're at or above. They're hearing peers for receptive and expressive language. Their auditory skills are through the roof. Their speech intelligibility is fantastic. I, for a short period was saying, they're my graduates and they're four years old.
And the downside of that is they're never truly graduates. There's still. Preschool and kindergarten to enter. They still have to go through so much, but they're oftentimes at, or above their hearing peers. But we know from the LOCHI study in Australia, sometimes there's some plateauing at eight or nine.
And quite frankly, how does a three or four year old graduate from anything? There is a lifelong of listening and development. So if it turns out I see them every three months or every summer to do some assessment before they go on to fourth grade or fifth grade, they never really truly leave. And I like to think I can be their coach.
I have really evolved. And I think I'm still a decent clinician, but I think I was more full of myself early on. I was trained by Helen Beebe. I know how to do this now. I so respect the parents and what they do. Not that I didn't before, but they're the change agent. They go home with the kids. I have great toys and I give them cookies, but I'm just a coach.
Alexander Graham Bell on his tombstone says, teacher. He didn't say he invented the phone. He's buried in Nova Scotia and on his tombstone, he wanted to be remembered as a teacher. I too. And I'm not comparing myself to AG Bell, but it's just the idea that I hope people remember me. I hope as a gifted teacher of a lot of different constituencies, but when I'm working with those babies, I am their coach.
I'll be your coach and your clinician. And then down the road, we can be friends. I can go to Stacy Lim's wedding. I can go to AuD externs weddings, but our intervention intervention is very different, but it evolves because they did the hard lifting. I was their coach.
Carrie: Yeah, and we need good coaches along the way, because when we become adults, we still, there's still a lot of lifelong learning that goes on because your environment changes and your job and everything else changes.
So there's always going to be more learning, but to have good foundational coaches is important.
Don: And that's true of parenting as well. I have a 40 year old and three granddaughters, but our relationship is in a different scheme because of the years of in pass. But you know, when I lost my parents, my dad and mom were like 95 and 92.
I was an orphan at like, in my fifties, it's sort of like parents are forever and our parents still go through all sorts of cycles of grief. And I remember someone say, well, my kid learned to drive a car or would my kid with hearing loss, go to the prom? And now it's sort of like, I didn't know where the question came from at the time, but there are those ups and downs no matter how together we all are.
As parents of a kid with hearing loss, or just as parents, your kid went off to OU. That was dramatic. My kid, his grant, his youngest kid going to kindergarten, that was traumatic to me. And I'm sure she's doing just fine in kindergarten, but we have those cycles. And I think too often we think that our families have reached acceptance.
That cycle for all of us is a cyclical nature and we can be angry and we can think, and even acknowledge to our kids, pardon the expression. But some of our kids, you can say it must really suck to be the only kid wearing an implant or having the only one in the class with hearing difference. But most of our kids, if we crowned them well.
They are proud of what they are. And those little, little increments of some of our kids with multiple disabilities, I'm more proud of a kid putting their lips together and doing a bilabial. Then my superstars who are off to Harvard, I'm proud of everyone, but some of those kids with multiple disabilities, I probably have learned more about growth and perseverence.
And how hard families work as a team with lots of dedicated team members. Yeah.
Carrie: And kind of circling back a little bit. Can you just share a little bit about your role at the Cleveland clinic with the hearing
Don: implant team? Sure. When I started at the Cleveland clinic, I left my tenured position at the Cleveland clinic to be the co-director of their implant program.
Part of the attraction was Peter Weber, who is a great surgeon. He's now in New England. I was tired of driving from Brecksville, Ohio down to Wooster. It's an hour and at five 30 in the morning in the snow, it's not a fun drive. So I left, but I really thoroughly enjoyed build Excuse me, building the program.
We were at a point where we were doing about a hundred implants a year. We were in the, certainly the top 10 biggest and busiest cochlear implant programs in the United States. So it was very positive, but I still was a clinician. I was still seeing the kids, but I so missed Teaching college students and I actually missed those independent study thesis.
So then when the implant program moved from one family health center to the main campus, I was a little overwhelmed at how big the Cleveland clinic is and the opportunity developed that I could go back to the college of Wooster. And oftentimes what happens is when you tell someone you're leaving. But you've done such a good job.
You can't leave. So I wheeled and dealed and I made the College of Wooster agree that I could still see patients at the clinic. A lot of them are on my breaks and on Saturdays. And I asked the Cleveland clinic, would it be okay that I saw some patients, but I couldn't keep up the caseload I had. So both sides agreed and I have the perfect combination.
I see college students stimulated by their thesis activity. Some of those thesis use kids that might be patients and at the Cleveland clinic. I don't have two year olds and three-year-olds like at the Beebe center, happy to have a two year old come to therapy. I have five week old kids and the Cleveland clinic.
Has really grown with many cochlear implant surgeons and a larger group of dedicated and talented cochlear implant audiologists for programming. But I am primarily getting to your question. I primarily see all CI candidates. For a speech language and auditory communication eval. So I weigh in as a speech path audiologists type person on the CI team.
It's called the HIP program, hearing implant program. And essentially I triage. Some of the patients for ongoing therapy. So it's primarily a, a busy clinic day of lots of assessments. And typically the youngest kids become part of my every other week or once a month caseload. And then others are every two months, every three months, but I can't get away.
And the little one who had surgery yesterday at seven months, I have known him since he was five weeks old about To get his hearing aids. And one day he may be getting consultative services from the summit ESC. Cause he's going to be just fine, but still need support. They'll always need support assistive technology.
Gotta be there. Non-negotiable right,
Carrie: right. Yeah. There's we, we don't live in a very quiet world, so, and our classrooms, definitely not quiet. So there's always going to be accommodations and accessibility that we have to look at, but I, I
Don: okay. Right. And we're doing lots of studies looking at teachers and even teachers of the deaf and educational audiologists and speech people.
A lot of people really are not completely comfortable with the broad needs of the kid. The slp oftentimes is very comfortable doing artic therapy, but less comfortable with auditory. Kind of auditory skills building and oftentimes it's the auditory that will develop into wonderful language and speech skills.
The teachers today, most general ed teachers have very limited or no educational experiences coursework in working with kids with hearing impairment. 80% of our kids are mainstreamed in schools and for some teachers they've had lots. For some it's their first kid. So all of us have to be working collaboratively and essentially many people, if they were honest, they would say not quite sure what to do with this kid with hearing loss.
My favorite was what if the coil came off? And I'd go, well, you put the coil back on the magnet, you know, essentially technology scares people and essentially these kids need that team of individuals working together. So, you know, it's definitely a world of teaching the teachers and teaching the related professionals that are working with our kids
Carrie: Right. And then your point about like, you know, some have a bunch of kids or have had multiple kids and some, you know, had one, but then you have the teacher that had a kiddo 20 years ago and then has one there. I think you're looking at a different kid. Then, you know, the 20, 20 years ago because of technology, which kind of brings me to another point, cause I know you have been on multiple committees and organizations, but one being the joint committee on infant hearing and you know, that has a long, important history, like dating.
Pretty far back for early identification and intervention and follow-up, but can you just share a little bit about how you became involved with the joint committee on infant hearing and what your role is?
Don: Sure. And if anyone listening to this is going to be an ASHA. The joint committee on infant hearing is going to be in the audiology row of the ASHA convention.
And I'm definitely willing to respond to people's email. If you share that information. The joint committee is probably the greatest, one of the greatest honors I've ever had. I serve as the ag bell representative to the joint committee on infant hearing the quote permanent members are ASHA, AAA American academy of audiology.
Ag bell is one of the founding members along with CED, which is the council of education of the deaf, which includes culturally deaf representatives, which is really important. And then two medical groups. It includes rep to representatives of all groups from the American academy of otolaryngology, head and neck, sir.
Surgery. So to docs and to pediatricians from the American academy of pediatrics and the last permanent, it sounds like the United nations, then the other permanent member of JCHIare the directors of speech and hearing in all of the states. So health and welfare, it's an indifferent agencies in government, but essentially their nickname is the dips.
And I can't even tell you all the letters. Those folks, but they're the members of joint committee. So it works in a consortium of sorts. We have supportive other folks, including NCHAM and CDC and and NICD. But the working group has oftentimes been known to release committee statements, which aren't there they're advisory.
They're not law, but US and many other countries look to the JCHI statements. The kind of gold standard of how to work with the implementation of universal newborn hearing screenings, which they were instrumental about and also just the early intervention. So essentially we meet at least twice a year.
Face-to-face pre COVID. We're about to meet again at EHDI in the spring. So we get to see each other, and then we've had lots of zoom calls and team calls, but essentially it is so good to have those individuals at the table. And the most recent release was a joint statement in November, 2019. They have a 42 page statement.
A three or four page executive summary. And there've been several developments. It took many years to development, develop it because you need a lot of people to agree from kind of divergent backgrounds. We needed to make it as evidence-based as possible. But I would say. Two of the most important recommendations are people I assume are familiar with 1, 3, 6, 1 month, three months, six months, one month to have the screening done by three months of age to have follow-up diagnostics, OAE, or AABR our ABR diagnostics and six months for intervention.
For me, intervention is not slapping a hearing aid on this kid with hearing loss, but intervention, early intervention, state programs, private agencies, et cetera, for the states that are compliant and reaching 1, 3 6, which is not all 50 states. We aspirationally recommended 1, 2, 3, 1 month, two month, three month.
One month universal screening, two months follow up diagnostics to confirm the screening results and three months intervention. This is how I would like our future to go one day. So everybody in 97% are screened in a hospital unless there's some other reason. One day should be our target cause once I leave the hospital, you sometimes can't get those kids back.
Now two months is not a bad idea. There's literature from David Luterman and others. The families should probably take home and love that baby that they didn't expect was going to fail. But two months is really too many months for a lot of families who might be at least at a point to come back to the hospital for the diagnostic, the newborn diagnostic
At the Cleveland clinic, we do two newborn diagnostics to confirm hearing loss, that little boy who had his implant yesterday, he came, met four or five days and he came at 16 days and he was on his way long before two months. So let's move its downward and three more. I am so happy to have any kid who has been diagnosed with a hearing loss, even if they come without their hearing aids, yet that they can meet someone to say the sky's the limit for your baby.
With the exception of kids with multiple disabilities, I am completely comfortable to say. All of your hopes and dreams can be realized for that little baby you're starting early. You're getting technology that is transformed their audibility. They are getting into early intervention programs that teach the parents the sky's the limit.
And as you may know, that is been my, it has been a mantra. I actually have a kid named Sky. Anyway. So the sky's the limit and her big sister was one of my early patients as well. So at the same time, the 1 3,6 is 1, 2, 3 is aspirational. That's an important development. I want to make one quick comment that as much as we're aware that because of UN UNH, UNHS, Because of all the things I talked about, technology and intervention, many families are going to, going to elect or select a listening and spoken language program.
Most of our kids have two hearing parents, but I want to make it very clear. I am so proud to have been a fall, a past president of AG Bell. I am so proud to be a little. But people need to know. I actually know how to sign. I actually teach a class that's to sign or speak or sign or talk. We have to be respectful of our culturally Deaf people, culturally deaf individuals who may elect for their child.
To learn ASL and be, bibi. Bye. I just want all families to know the options exist and just like, there is no one size fits all. Not every kid will be a listener and spoken language user for a variety of reasons. And not that many people who have hearing parents get hearing parents who are fluent. To give a really strong language model in sign, but if a family elects and they deserve to have that option to elect ASL or a bibi program, I just strongly recommend that they become fluent to get the best language model in.
So in the JCIH deliberations, we're always talking about the idea of a listening and spoken language. Or a visual spatial option. So it's a very balanced statement and I think it is important to know that is foremost in our conversations. And then last thing that I'm proud of in the JCHI statement, I'm not always a big believer in a medical model of doom and gloom and pass and fail.
But the recommendation was made instead of when a kid does not pass UNHS. That we say they failed. It is no longer to be pass/refer it's to be worded, pass, or fail. There has been a reducing number, but too many of our kids are lost to follow up. And it's sometimes how they're told, oh, your kid, probably if we did this again, they'll probably pass or maybe there's fluid in their ear.
We didn't get it all out. And if you hear that, are you going to be rushing for the newborn diagnostic? But if the very first test besides PKU testing, it's the very first test a baby has his hearing and you hear the F word that they failed. You may have more likelihood following a medical model to get the children to come for.
Follow-up at an earlier date. So one of our hopes and we'll know for more longitudinal data. Is have we done a service by saying fail versus refer in my heart of hearts? I believe we did do the right thing. I was totally supportive of that. And my wife who does quite a lot of auditory electrophysiology, she'll do some kids at one year old, two year olds and sedated ABRs we go back, the kid had failed or referred universal newborn hearing screenings.
They were told to come back and then at one or two, they're not talking. And then we find out a unilateral loss or a significant loss. I wish you had come earlier, but it is what it is. We take a kid from that place and we move forward. Yeah. And
Carrie: hopefully that'll be good, but I know the pediatricians I involved with JCIH , but again, I think they're another stopping point along the line where you know that they may not be.
Stressing the importance of that. Follow-up and, but maybe it would change if they see this fail on the page rather than a refer.
Don: And they're important gatekeepers as are other physicians, some kids don't go to pediatricians, the GPs, the family practitioners, even the doulas who might be delivering a kid in Vermont in the home.
It'd be great to get them doing OAEs. For those kids who aren't born in hospitals, Vermont just happens to be the state with the largest number of in-home birth. Someone did a thesis on that at the college of Wooster. So I knew not just cows and Ben and Jerry. It's a lot of home births. Yeah.
Carrie: Yeah. So another key component.
Well thank you for your service and that committe and your step you've been on that committee for a while. Right. But
Don: he started the position statement came out in 2019. I think I came on board in 2015 when we thought it would be done in a year. So 2015 to now. And the other member of AG bell representative is Meredith Sugar, who is a mom.
She's an attorney by training and she's a mom of a bilateral cochlear implant user flying off the charts. And I think a middle school or about to go to high school. And essentially she's a very talented person, former president of ag bell, but we get the parent perspective from that ag bell member. And one of the parent members from CED has two teenage.
bi-bi kids. So it's nice to have two parents who are always there to be that monitor of all those trained professionals in audiology and speech learners, pathology and educational of deaf and pediatrics and ENT. We need to hear from the parents. As Doreen Pollack said our child's first and most important teacher.
So thank heavens for Meredith and Stacey Abrams service on the JCIH.
Carrie: Yeah, parents are the most powerful people in that child's life. So they always will be. Oh, so another thing that I know that you've been working on is a new diagnostic test called the test of auditory functioning. And I know it hasn't been formally released yet, but do you want to share with our listeners a little bit
Don: about that?
Sure. I've had several sabbaticals and I typically have gone, done, gone to Australia for most of my sabbatical. So on one sabbatical, I kind of evaluated a auditory quote hierarchy. And then my last sabbatical I was able to, after quite a lot of work, I was able to get funding to field test this test of auditory functioning in Israel in the United Kingdom.
In San Antonio, Texas in Atlanta, in Cleveland, and a real height. Did I say Jerusalem? Israel, Jerusalem, Israel, where there's AV, Israel, AV UK. And my last trip right before. Was at the shepherd center in Sydney, Australia. So field testing of 125 plus kids from two to 13 years of age, the only test that had even come close to what I have in my test was a test of auditory comprehension, which you can't even get.
And just as an aside last Thursday, my only copy of the test of auditory comprehension, which came on a CD. And then I put it on a C came on an audio cassette, then they put it on a CD was stolen from outside my office. So whoever out there at the children's hospital of Cleveland clinic stole my orange TAC, give it back because my test is not ready to go yet, but I do have.
 a Binder . You're not going to be able to view it, but it starts 19 subtests. I plan to not give it away, but probably charged. I don't know, $25. I'm going to, I didn't do this for money. This was the culmination of my life of teaching, listening to children, with hearing children, with hearing loss and being able to quantify.
Those audiograms that say CNT could not test and mostly means the audiologist didn't know what to do to figure out the lowest level of detection. So we have presence and absence long versus short, high versus low fundamental frequency with hello there. My name is Reagan. Hello there. My name is Reagan. My granddaughter is recorded, beautiful pictures, but for my granddaughter, she gets to say, hello there.
My name is Reagan. So it's the same sentence. And they're picking. I have to find it I'll be a much more fast seal, but the person hears each sub test as a calibration tone, they hear the audio. So it's all from auditory and they would pick my daughter-in-law's voice, my voice, or my granddaughter's voice.
It moves on to things like the ESP. So I took all the best from all the tests, the ESP, we have pattern perception. We have spondee recognition. We have word identification with bees syllables, but the big point is it moves hierachy. I did learn two year olds. Don't do too well. They are really, even though they like computers, they're having some trouble, but three-year-olds on their Ling sound assessment.
There's learning to listen, animals, learning lists and vehicles, sequencing, listening comprehension. And one of my objections to the TAC, which I've collected data on for 25 years. They hit the kid with zero signal to noise ratio, which is a great thing to do. Testing and noise. Very few tests are very few audiologists, even tests at varying signal noise ratios, but for profoundly deaf kid
To hear a speaker where the noise is as loud as the speaker. That's a little bit much, all of us have trouble at zero signal noise ratio. So I have my final three subtests at plus 10. Plus five and then zero to signal, to noise, signal to noise ratio. So it's going to be computer driven. It has calibration tone each sub test.
It will be, and this is the tricky part that's taking me a little while long with COVID. The kid will be able to touch the screen and that will give the, keep the score and advance to the next picture versus. Kind of mouse driven assessment and field testing. And I would say I have kids with implants, kids with hearing aids.
I have bi-modal kids. I have several bone anchored kids. It is for any technology and it's a criterion based of every year. You could administer the appropriate subtests and be able to demonstrate auditory development and auditory growth from. Initial assessment to next subtests, next assessment. And how much farther they go?
No kid got to ceiling, but the oldest kid was 13. And the reason why I originally said two to 12, that 13 year old just turned 13 and he had his bar mitzvah in Jerusalem. And he's my oldest kid who moved from the Cleveland clinic to Jerusalem. Obviously an English speaker and he's my oldest kid. And most times I would stay, it would go up to really high performing kids who are 10, 11, and 12.
And anyway, a very proud development of, I think, a professional who has worked with lots of deaf kids through the years and really has a good sense of. Where do they break down? And the real true test of real true test of a test is where they break down. It then gives us direction of where to intervene.
If you have a kid who is not even able to tell long versus short. You can't be doing learning to listen sounds. If their auditory skills are needing to really develop long versus short and as kids get new technology, as kids get better as listeners, they are going to move through many of the higher subtests getting to listening comprehension at zero signal noise ratio.
So I named it the TAF, the test of auditory functioning, because after many conversations with Norm Erbert. Who is co you know, classic auditory training book in 1982. He critiqued me every time I went to Australia, he was concerned that people said hierarchy. It's more than just a hierarchy of detection to comprehension.
We have kids who might be identifying, but they still need to detect some kids. You have identification, they can do some things in comprehension. You just don't knock off detection. And stick it discrimination. So the triangle of a hierarchy, I have been using the terms level, term levels of auditory functioning, hence the name of the test.
So that's my crowning glory. I'm not planning to die or retire yet, but I am hoping that this can be circulated to teachers of the deaf speech pathologist. You don't need a sound room. You just need a sound level meter, and we will get really important data. But the auditory ability of children from three to 12 who have hearing loss, no matter what their technology
Carrie: Yeah, that sounds amazing. So, well, it'd be like on an iPad or computer that you download or how has, how does that work?
Don: Some of the bugs have to be worked out. The first one is to make sure it can be driven in, by touch of a mod, a monitor of sorts. I'm anticipating that I'm less inclined to think it will be an app to go to an iPhone, but it will probably go to tablets and tab.
Monitors of sorts that we'll be able to really collect the data because there are also issues I had to think about. Cultural sensitivity in the images. Well, you also need to think about people's motoric ability and also you're very good. Would you get very different data potentially on an iPhone versus the size of the monitor?
So there are a lot of variables, but because it's criterion based, my main reason for not standardizing is. That is a humongous job. So many variables with hearing loss, but more importantly, we have so many variables with the technology they're using. And as you know, some of our kids are hearing aid kids who then become implant kids, or they become bi-modal kids.
So I elected this to be a useful test. Hopefully. Very accessible for usage and administration. And probably that will just be able to really move on to get data. So every year we can find out how the kid is doing. Yeah. And would you
Carrie: suggest every year, would you suggest before that, depending on the, like where they're at with their technology.
Don: I think it might depend. I mean, I certainly want to quantify things like Ling sounds, learning to listen associated sounds that one, those are almost kind of training modules, but the real heavy duty items that have identification of words, two critical elements, sequencing and listening comprehension.
There is the concern about learning, learning the task. So I've never told the kid and I've given the TAC. A thousand plus times I can go through practice items, which are also on the TAF, but I've never given kids the correct answer to the actual test items because you don't want the kid to remember. Oh yeah.
Don said that was about a chicken hatching, an egg in 21 days. So essentially that's the caution on probably the preference for anniversary testing, because you could have a kid learning. The answers with too many administions. Yeah,
Carrie: no, that sounds amazing. And I, I can't wait to get my hands on it once it gets published, because I know as an educational audiologist and being in our program like those just, you know, we write an IEP goal.
Based on the evaluation that we give and to be able to have a tool like this, to evaluate, and then be able to write good IEP goals and objectives based on areas of need based on the assessment is going to be very helpful.
Don: And I actually think educational audiologist. We'll very much be interested in this.
I'll make sure I come to an EAA convention. But also that speech language pathologist who just didn't have much experience working with these kids, will try this out. And I assume one of the accompanying documents might be a manual to give some suggestions, but I've never believed in cookbook therapy, but at the same time, people just, they want to do the best job.
And I think sometimes people revert to artic therapy because they're not quite sure how. Incrementally and appropriately do learning to listen work. So kids get better and better. So if this can lead to better services for our two and three-year-olds on up all more power to it. And I never did this with the idea of, I got a test.
I mean, some of the test. I mean, I buy tests, including speech and language test. Some of the tests are like $500 and then you pay a buck for each form. This was not to make money. It was really to share, I guess, a lifetime of good work. With wonderful teachers starting with Helen Beebee, my parents and Helen Beebe.
And I learn from the young AuD extern. I learned from my undergrads that one of the gifts of our professions is we learn from others and I will never be so proud of I'm the experienced old man in auditory verbal. I hope I'm a better clinician at seventy. Then I am at 67 today. And what I was when I didn't know what the heck I was doing, thinking SLPs played old maid and memory concentration.
Cause that's the only thing I remember besides they could never hear E and speech pathologists play card games. So why not go to grad school at the university of Florida to learn how to play card games, go to the beach and surf. Angel's not by the water. I forgot to look at a map before I went to Gainesville, Florida.
Carrie: Well, thank you for all that you've done and, and share with our profession too. Cause I, I know I that's the gift of giving back, right. That we learn and to be able to give back, is there anything that I didn't ask you that you wished I would have.
Don: That is a great question. I guess my takeaway two real themes.
It's not the device and I think we're too often thinking implant in all well, implant in unbelievable audibility. But work is still needed. The access to sound is easy. I was friends with Dan Ling and Dan Ling would say, it's easy with an implant. And I said, Dan. I am so respectful of you, but that message is powerful.
But what if you have the kid, when it isn't easy and you get the impression it's all about the device, can you stop saying it's easy with, because of the technology? So it's not the technology. And I think the other thing in a way, I think. Our relationship and my respect for your colleagues in your ESC.
And as I interact with a lot of speech people who are afraid of audiology and vice versa, I hope our goal we'll always come back to that child, that child of a family that really didn't sign up for a kid with hearing loss unless there's some other sibling. It's not what people necessarily were expecting, but if we break down our silos of I'm the master SLP, or I'm the.
There's a lot of people that are not LSLS that still can do really good auditory teaching. I want more people to be LSLS, but you don't, it's not your degrees and it's not your initials. It's this breaking down and getting away from silos and that final theme of the skies, the limit. I know that Robert taught me.
Oh yeah, everybody who's deaf or wears body aids listens and talks. Robert might've been an exception in 1974 when I started, but we have more kids who can be the sky's, the limit. And even our kids with multiple disabilities. It's that kid compared to him or herself, because it is kind of cool. When we work with the most intriguing and cool kids and I have to be careful.
I'm so excited about a five week old and it's like Don, You could be given the wrong image to this family. They're not that happy that there's a hearing loss, but I hope the enthusiasm just like Carol and Denise were for you. And literally Beebe was for so many others. You take the attitude that until proven differently, that kid can go to the moon and more and more of our kids are going to the moon.
And that's pretty darn special.
Carrie: It is, well, I want to just thank you for being a guest today on the empowEAR podcast. And I agree, I think our kids, the sky should be the limit for them and to be able to be a coach and what collaboratively like it together outside of our silos is really the way to go.
So thank you, Dr. Goldberg, Don for being on here today. I so appreciate
Don: it. Thank you. And thanks for everyone who might've listened and feel free. They can best get in touch with me with D Goldberg ERG at Wooster Dot EDU rooste
Carrie: I will put that in the show notes too. And then they will be able to click on your email and get ahold of you as well.
Don: Sounds good. Thank you.
Announcer: This has been a production of the 3C Digital Media Network.

Episode 32: empowEAR Audiology - Drs. Dainton and Huzzy 

[00:00:00] Announcer: Welcome to episode 32 of empowEAR Audiology with Dr. Carrie Spangler.
[00:00:16] Welcome to the empowEAR Audiology Podcast, which is part of the 3C Digital Media Network. My name is Dr. Carrie Spangler, and I am your host. I am a passionate audiologist with a lifelong journey of living with hearing challenges in this vibrant hearing world. This podcast is for professionals, parents, individuals, with your own challenges and those who want to be inspired.
[00:00:45] Thank you for listening, and I hope you will subscribe, invite others to listen and leave me a positive review. I also wanted to invite all of you to visit and engage in the conversation on the empowEAR Audiology Facebook group. Transcripts for each episode can be found at www 3, the number three, C digital media network dot com under the empowEAR podcast tab.
[00:01:19] Now let's get started with today's episode. Hi everyone. Thanks for joining the empowEAR Audiology Podcast. You are in for a real treat today. And I am going to be talking to two extraordinary educational audiologists, and we are going to be talking about why providing educational audiology services for children who are deaf and hard of hearing to promote listening, learning, and spoken language.
[00:01:51] in their mainstream environment is critical for them to succeed. And that audiologists are a part of this interdisciplinary team of professionals that support students of all ages and their families. So I am going to give a little introduction to the two educational audiologists that we have with us today.
[00:02:16] Um, from Clarke hearing and speech one is Dr. Ashley Dainton, and she has an audiologist at the Clarke hearing center. Ashley. She knew from an early age that she wanted to work in a multi-disciplinary field of healthcare. She graduated from Kent state with a bachelor's in science, in speech pathology and audiology.
[00:02:41] And she completed her doctorate of audiology at the Northeast Ohio AUD consortium. And she also received the 2017 labor award for outstanding graduate students. Ashley had a clinical placement at the Independence, Cleveland clinic, family health center, Stark county educational service center, the Kent state university, and University of Akron clinics.
[00:03:08] And she was part of NOACs First audiology, mission trip to Guatemala. Ashley went to California to complete her fourth year audiology extern at the Providence speech and hearing center. And during her externship, Ashley had three clinical rotations that included adult and pediatric unit fittings and services, diagnostic testing, and specialty testing, auditory brainstem, response, testing, and cochlear implant.
[00:03:38] I also have Dr. Rebecca Huzzy with me today. And she is an educational audiologist at Clarke schools for hearing and speech. And she graduated from Bloomsburg university in 2003 with a bachelor's in science in audiology and speech pathology. And then again, in 20 2007, with a doctorate in audiology. she has worked as a clinical audiologist that.
[00:04:06] Nemours Children's hospital in Delaware. And then since graduating and began working as an educational audiologist that Clarke Philadelphia in July of 2013, her clinical interests include clinic cochlear implants, amplification, and education. I know all of you listeners that input treat today and let's learn a little.
[00:04:31] More about the key roles that educational audiologist play in this schools. I welcome to the empowerEar Audiologyo podcast. I am so excited to have Dr. Rebecca Huzzy and Dr. Ashley Dainton with me today. So welcome. Both of you.
[00:04:51] Rebecca: Thank you so much, Carrie, I look forward to working with you. Thanks.
[00:04:56] Carrie: Yeah, I would start out and I just ask you some of your professional background.
[00:05:02] Um, and how did you get into the field of audiology? So, Rebecca, do you want to start.
[00:05:09] Rebecca: Sure. Thanks again. Thank you so much for having us. We really appreciate you taking the time to talk with us today. Um, so I graduated from Bloomsburg university with my AUD in 2007. Um, and. Continued or started my career at Nemours children's hospital in Delaware, uh, which is a pediatric, a small pediatric hospital in north Wilmington.
[00:05:32] Um, and then a couple years later, my schedule allowed me to, uh, split my time to work both at the hospital, as well as working for Clarke schools for hearing and speech in Philadelphia, where I've been there since 2013. Um, that's a little bit about my background in history.
[00:05:56] Is
[00:05:56] Carrie:Is there anything that drove you into the field of audiology?
[00:06:01] Rebecca: I think my. My background really is similar to a lot of a lot of other people's, um, going into first, I was going to go into deaf education then, um, speech pathology, and then ultimately audiology won my heart. So with that first audiology class, I was like, oh, this. So,
[00:06:23] Carrie: well, that's awesome. So, Ashley, do you want to share a little bit about how you get steered into the field of audiology and some of your background?
[00:06:34] Ashley: Absolutely. It's good to be back and seeing you again. Um, so in terms of me, I did my undergraduate at Kent state university. And then I did my graduate program through the Northeast Ohio AuD consortium, where I happened to meet you as a mentor. And I had observations with you and I did some volunteer things and, you know, opportunities with you.
[00:06:58] So originally, interestingly enough, I wanted to be a nurse before I got into audiology. Um, but through clinical observations at hospitals, I kind of found my way through observations to the field of audiology and similar to Rebecca, those audiology courses, the research, you know, having those observations really solidified it for me as well.
[00:07:19] Um, I ended up doing my externship in California. So went all the way from Ohio to California. And then after that, I came back this way a little closer in Massachusetts, where I started in 2017 at Clarke. And I've been there ever since.
[00:07:35] Carrie: Well, I just have to say, Ashley, I remember you as a student and you had your little book.
[00:07:43] Dr. Spangler, I meet with you about educational audiology and it had looped little tabs, and I think it was like all color coded with your notes and everything.
[00:07:52] Ashley: And I'm pretty sure I had purple hair as well at that time. So I
[00:07:59] Carrie: had this whole notebook of questions that you were So intrigued with educational audiology.
[00:08:05] So it just makes me happy that you are so settled in on this. I think that the secret hidden gem of educational audiology as I like to call it, uh,
[00:08:16] Ashley: absolutely.
[00:08:17] Carrie: So I thought it would be great to have a conversation about, um, educational audiology and how it is. Again, different from a lot of other sectors of audiology and as an educational audiologist myself.
[00:08:34] Um, I think we get this question quite a bit when you're in the school setting. So what, how is educational audiology different than what maybe a clinical audiologist might do? So I don't know who wants to start with that one?
[00:08:52] Rebecca: I think I'll go first. Um, so honestly, When I started, like I said, I was, I was a clinical audiologist first.
[00:09:00] And then when I first started as an educational audiologist, it was, it was even though I've been doing it for seven, eight years, um, it was. An eye opener, right? Because you know, you can diagnose hearing loss. You can, you can fit the hearing aids. You can fit the remote microphones and then you get into the real world at school where all the things are different.
[00:09:29] So everything in the, everything in the. In the clinical world is finite. And there you go. It's all quiet for me. And then you get into the classroom and you realize that equipment doesn’t Connect when it should be connecting and people are hearing here, our kids are hearing other teachers. Um, when I first started as an educational audiologist, it was literally the month that Roger or a couple months after Roger came out and it, I was on the, on the phone with Phonak for, at.
[00:10:05] I don't know, 30% of my day, every single time I was in the classroom. Um, so it's a lot of different things to different skillset. We have that we do have the skills, but it's a different way. You have to think more on your toes about, about troubleshooting and making sure that things are working, um, in the moment.
[00:10:24] You know, we have to make sure the equipment is working in connecting with the school's equipment. We have to make sure that, you know, we have, are collaborating more with the teachers and the educational discipline, uh, multidisciplinary team, um, and making sure that they know that what, how hearing loss affects the child globally.
[00:10:45] And some, some characteristics of hearing loss might not be as intuitive as. As one might understand it could be, you know, how many times did we hear? Oh, well they can hear me. Let's just like, Hmm. Not quite. So we do have to be a voice for our students, um, and really be able to troubleshoot in the moment.
[00:11:12] Carrie: Yeah. So Rebecca, just to ask, I know you're at Clarke Schools for hearing and speech right now. And you guys have five different, um, locations. Did that help you to have like, almost like, did you have a mentor then going into the educational setting from that clinical setting?
[00:11:32] Rebecca: At the time. Yes. Um, I worked with the educational audiologist, um, who, who was up in North Hampton.
[00:11:41] Um, although we run because, because it's a different state, the, uh, the agencies are a little bit different. Um, so she gave me a lot of the, the, um, information that she worked off on, off of and from. we work together to make sure that I kind of knew what was going on. As far as the whole five campuses goes. I'm a little bit about the history, but because of the role of being a little bit different, um, I, I really, I did rely on, on the manufacturers to help me, um, with the troubleshooting and, you know, and everything.
[00:12:20] I, I used my resources.
[00:12:23] Carrie: Yeah, I know. I think really all I have to use my resources. And like you said, every state's a little bit different and how. You know, the federal laws are the same, but how it's implemented looks a little bit different depending on where your location is. So actually have anything you want to add.
[00:12:39] I know you had an opportunity to actually do a clinical rotation in the schools before actually going, um, and into your, you know, graduation. So do you have anything to add between that clinical and educational role?
[00:12:54] Ashley: Yeah. To add on to Rebecca, you know, fortunately I did have. That educational placement.
[00:13:01] Um, and it's amazing from even my first observation to like my clinical placement to now how much has changed between manufacturers and just updates in technology. Um, so I was fortunate, you know, whether it was my placement or texting you really quickly, or, um, I think definitely what's really exciting about Clarke now is.
[00:13:23] Once a month meet with audiology teams. So I noticed a lot of brain picking and like what we noticed in our clinical settings. So, you know, coming in, I did have a mentor and mentors, so some of it was, Hey, we're adjusting this and we're gonna maybe, you know, we do testing with the equipment every year or so maybe adjusting our report and how that looks.
[00:13:45] I'm still following the same AAA guidelines and everything. So I think. Adjusting and updating information, but still collaborating with the team members. I think what's a little neat in terms of the North Hampton campus is for some districts, I'm the managing and the educational. Um, and we've tried to divide districts that way.
[00:14:04] So. I've made it really important if I'm the managing audiologists to really try and touch base with the educational audiologist or for, if there's not one, try to see if there's a way to get an educational audiologists or those important team members. And then as the educational audiologists, whether it's in our kindergarten to eighth grade program or for mainstream students, I'm really trying to touch base with the managing audiologists.
[00:14:28] So I agree with Rebecca it's a lot of. Either role, making sure to touch base with the professionals, touch base with the students. Um, regardless of hearing loss, or we have some students who have auditory processing disorder as well. So I feel like there's some things that. Are definitely, we're becoming creative about how we provide services, especially with a virtual world that we're kind of transitioning into.
[00:14:54] Um, but I've noticed actually the virtual in-services and those meetings and emails has actually provided more access for students, which is great. So that's what I've kind of noticed this transition as we continue.
[00:15:06] Carrie: Yeah, there's definitely some, I think, benefit of the virtual world that we've lived in, that I would like to see move forward.
[00:15:14] And do you guys feel that you make a pretty good effort, then they know who they're managing our clinical audiologist are for the students that you have. And do you think that's helpful, um, to make sure you're almost like that bridge in between the more clinical, um, and then those who are, um, the educational team.
[00:15:37] Rebecca: I do, you know, we, we want to make sure of that. Not only are we providing the best audiological management in the classroom, but also we want to make sure that the teachers are aware of the current audiograms. And if there's any concerns on the educational side, you know, it's really important to collaborate with their clinical audiologist and their managing audiologists, um, to just to make sure that everyone is on the same page with everything.
[00:16:08] Carrie: Yeah. So thinking a little bit back to, I think what you said Rebecca about, um, how teachers might say, well, they can hear me just fine, right? In the classroom type environment. What are some, I guess, signs that maybe teachers or, um, caregivers might have that would spur them to get their child's hearing tested?
[00:16:36] Ashley you have Rebecca, would you guys want to add. Yeah, we can kind of tag
[00:16:43] Ashley: tag team this for sure. Um, so kind of like the clinical hat on, um, what's nice is at least in Massachusetts is one that I can definitely speak on behalf of is we do the universal newborn hearing screening, um, all different states, maybe have different protocols and mandates.
[00:17:02] But we do a screening before they leave the hospital. So I think that's a great starting point with families. And based on those results, they may need an additional follow-up appointment or that's enough information for this family. Um, so typically at the Clarke North Hampton campus, what's interesting is we see children who are six months and older, um, for that initial testing.
[00:17:25] So oftentimes it's a child who has maybe a speech delay or, you know, Family has a concern about hearing loss. So I think for those really young children where maybe they're not quite developing that language yet, it's looking out for those markers. Are they interacting with you? Are they interested in who's talking and kind of knowing where sound coming from?
[00:17:47] Are they alerting to sounds in the environment, whether it's the family pet. Or dog barking or maybe a car horn. So that's definitely a big source of referrals and just being aware of family history and kind of some risk factors. We've seen little ones where they've had family members who have hearing loss.
[00:18:07] Um, as I discussed, I think a great starting point for those families is touching base with your primary doctor. First, if you have any form of a concern, whether it's speech, whether it's hearing it never hurts to bring it up to your primary first. Um, they may do an initial screening in office and then make a referral if needed.
[00:18:24] So I think that's a great starting point. And you know, we also. Families that don't pass the hearing screening. So don't be scared or alerted. At first, I've done some hearing screenings where we're in a noisy gym room and, you know, maybe the acoustics or the sound in that room might affect test results.
[00:18:40] So I always tell families, you know, even if test results show typical hearing, or there's not concerns, you have a great baseline for your little one. Um, and then if Rebecca, if you want to kind of talk about the educational audiology setting.
[00:18:55] Rebecca: Yeah. Um, I think that. Some teachers should be aware that, like I said before, that hearing loss can sometimes look at, look at, look like a, a behavior concern.
[00:19:07] Right? So if the child doesn't, doesn't hear the teacher and teacher looks back and sees little Johnny talking to his neighbor saying, Hey, what page did she say our homework was that in out of, out of context, looks like she's not, he's not paying attention. It looks like he is. Talking out of turn, it looks like that he is.
[00:19:28] Um, it's not, he's not ultimately it doesn't look like he's being an advocate for himself. Um, so another, you know, Just not paying attention. Um, getting up from their seats, it looks a lot like behavior concerns. And so, you know, especially if they have a known hearing loss and their equipment might not be working or the, the remote microphone system isn't working or connecting properly, those are the things that we need to really address in the classroom as well.
[00:19:58] Um, a lot of other things is if, um, You know, the, would their speech, if their speech starts to decline, um, those are some red flags that we need to be readdressed in the clinical setting.
[00:20:11] Carrie: Yeah, I know. I, I feel like every child that is being referred for any kind of speech and language eval should definitely be having their hearing screen prior to any type of speech, language articulation.
[00:20:27] And I don't know. I mean, I think for the most part that happens, but I don't know if that always happens and it can be a big part of, you know, those referrals too. So, um, and every state, like you said, it's probably different in how they do school hearing screenings and how they get referred to you ultimately, um, in the end.
[00:20:46] So it's, I think a national thing to, to be aware of too.
[00:20:52] Ashley: Yeah, something I even noticed too, for some of the referrals that we get, um, it'll say like did not pass screening whether at school or in the primary care physician's office. And it's one of those, you look in the ears and you see wax blocking the ear.
[00:21:07] Um, or, you know, some parents notice maybe their little ones are poking at their ears or kind of pulling on them. That can be another sign that maybe there's an ear infection. Um, I think it's a really helpful thing. There are things that maybe a kid's not going to say, Hey, my ears hurt or, Hey, I'm noticing my ears sound different than they previously did.
[00:21:26] Um, so those are oftentimes what we've found too. It's an ear infection or maybe some wax in the ear, um, that can be hopefully treated and resolved.
[00:21:37] Rebecca: Oh,
[00:21:37] Carrie: sorry. Not testers as a good and result. Right. There's always going to be a way that we can find. Ultimately what's going on with the child's hearing. And we think that's important to have you over the last decade.
[00:21:53] There's been increases in the number of children who are deaf and hard of hearing who are mainstreamed who I, you know, in the neighborhood schools, um, and maybe not in as much of a, um, a specialized area. So how do you feel audiologists can support. Students who are deaf and hard of hearing in a more mainstream type setting.
[00:22:19] And why does I role important?
[00:22:22] Rebecca: No, I think the role as the educational audiologist is, is super important because we, um, are their first line of defense as far as auditory access. Right? So I think first and foremost, we really need to establish that the child has functioning equipment and that, that functioning equipment.
[00:22:40] Is brought to school every day and that it has good and stable connections with the remote microphones. Um, so because of, because of the, the need for, you know, the, or the foundation of hearing as access to speech and language and ultimately learning that needs to be addressed and it's in and of itself.
[00:22:59] Um, I think also that. Knowledge and education sharing between the teachers and the caregivers and the nurses and the educational team is really important. Um, kind of going off of what Ashley was saying before, you know, when they come in after a failed screening, you know, and you look in the ear and there's huge, you know, wax occlusion, you know, I, I, there was one time.
[00:23:20] I, I had a, um, I had a student come in, um, in my clinical world and then ma and he known. wears hearing aids, um, comes in with a , a referral from a screening and. Did we know, like, does the nurse know that there's, there's hearing loss and she's like, oh yeah, but she said that the hearing aids aren't working because he, you know, when we put the headphones over the ears, um, with the hearing aids on, oh, this is no joke.
[00:23:47] This literally happened. Um, That the hearing aids weren't working because he wasn't responding when, when the headphones were on over the hearing aids, I said, oh, I said, can we just write a note that he's excused from these hearing screenings at school? Um, because that's, you know, so that really, it drives home.
[00:24:03] The fact that nurses don't know a lot about how technology works either. So it's our role as educational audiologists to inform everyone who's caring for this child. Um, and you know, also. Our biggest thing that we can also do is to be an advocate. So if we can be an advocate for our students, they can be an advocate for themselves.
[00:24:25] There was one time. Um, you know, I, when I started at Clarke, you know, this little girl, she was four years old. You know, I was going around, I was checking everyone's equipment and I was looking at everything, making sure everything was working. Um, I said, okay, you know, I'm going to be I'm I'm finished now.
[00:24:42] And she said, okay, thank you. I said, oh yeah, here. No problem. Anytime. And so in on her face, she, she looks at me with confusion. I didn't know what to do at that point. So I was like, okay, have a good day. Bye friends. And then she got very angry. She stood up from her chair and said, you are supposed to say, you're welcome when someone says, thank you.
[00:25:03] And I said, oh yes, yes, you are right. You are definitely right. Well, you're welcome. And thank you for pointing that out for me. Um, yeah. If that doesn't strive home, the need for advocacy. I don't know what else does is, I mean, what else does in, in the moment, because that little four year old knew what she wanted to hear.
[00:25:23] And clearly I did not meet that expectation
[00:25:27] Carrie: and I'm sure she's doing quite well for herself.
[00:25:32] Rebecca: Absolutely. Oh,
[00:25:35] Carrie: that's awesome. So Ashley, do you have anything to add about like that mainstream setting and, and the importance of education, educational audiology?
[00:25:46] Ashley: Yeah, I think, you know, definitely whether it's managing role or educational audiology, what's been really great at Clarke is oftentimes if the teachers of the deaf are providing services for a student with hearing loss, and even if they're managed by an outside clinic.
[00:26:01] They try really hard to touch base with the school and say, Hey, you know what? There is great benefit to having a teacher of the deaf and the educational audiologist on the flip side, too. I know without, you know, getting out of my scope, I also say, Hey, the student seems to really be focusing on. I don't want to wear my amplification or my hearing aids.
[00:26:24] I think having that support in the classroom with the teacher of the deaf, um, would be really beneficial. So I think it's that comfort level of also touching base with the schools and checking in, Hey, are there any new students? I think just letting them know that you're there and what you can provide.
[00:26:40] I mean, I know so many students who, whether it's unilateral hearing loss or they have a slight to mild hearing loss and we do testing with noise and it's amazing the score differences with just amplification, just implants Versus with all the equipment for school. So whether it's discussing that with the school, you know, with the student, with the team, I think all of that is so helpful.
[00:27:03] So I think it's just being comfortable to just touching base, checking in, um, whether you're managing audiologists educational, or you have some team members that are touching base with you too. Um, we've even have instances where I think of those students who are mentioned be cochlear implant candidates, um, where I have so appreciated the teacher's updates.
[00:27:24] And there may be that borderline candidate where the speech, the teachers, that team update has really helped these students. If the family's interested to get cochlear implants to pursue that, to help them, you know, make sure they're getting the right treatment that they need. So again, I think like Rebecca was saying, you know, having that team approach.
[00:27:42] Including the educational audiologist is really, really helpful because oftentimes the managing audiologist is touching base once or twice a year. Um, and that comes from my perspective too, where maybe it is that once or twice a year appointment and the educational audiologist, as well as those other team members are seeing the student every day in their real world situation.
[00:28:02] Um, so all of that can be really helpful.
[00:28:05] Carrie: Yeah. Another the good point, what you brought up is having all that information. Like you example of that borderline cochlear implant, you know, you candidate, and by you gathering that school information might just be the information that cochlear implant center needs in order to go to that next steps
[00:28:24] or the parents might need to go to that next step. So again, that bridge between that clinic and educational audiology is so critical along the way. And then I think you brought up another good point about the functional assessment. Then that's another role. Have you guys found that really plays into the educational team?
[00:28:47] Being able to functionally assess them in their school environment?
[00:28:54] Yeah.
[00:28:55] Rebecca: Yeah, absolutely. I think that that functional that, like I said before, the, the world in the clinic is so small. You know, and you can, you can adjust the hearing aids and you can have them walk around the cafeteria or walk around outside. And it doesn't really mimic real world. Um, so the people who are, who are working with the students and the, and the, and the children, um, uh, on a daily basis, really have such a massive amount of information that they can share to make sure that we, uh, you know, as the clinicians know what's happening in the real world,
[00:29:34] Carrie: So I have both of you guys too.
[00:29:38] What if you have a student or just say the, you know, somebody who's listening right now and they have a student who is deaf or hard of hearing, whether it's their own child or, you know, their teacher that's listening and they don't have an educational audiologist. Do you have any tips for advocating to get either one of you?
[00:30:04] Rebecca: You know, I, I'm a big fan of making my wants and needs known to anyone in any kind of world, you know, kind of anything you can't assume that someone knows what you want and what you need until you talk to them. So as the parent of a child with hearing loss as a, as a clinician who, who knows that there is no educational audiologist on the team, and it's really important for us to make sure.
[00:30:32] the Educational team is aware of what the child needs and, and can make a really big difference in their potential. To succeed. Um, so, you know, recommendations, reaching out to change the IEP, to making sure that, you know, I don't want the nurse doing the hearing screenings. I want to be referred to the clinical world.
[00:30:56] Um, I think that's really important. That the parent knows that they have that power to request things. Now it might take a lot of negotiations and, and meetings, but they do have the power to request what they need
[00:31:14] actually.
[00:31:16] Ashley: Yeah. So I definitely think, you know, a big part of it too. I think that's, what's awesome about managing audiologists. I know some of our reports that I've typed up have gotten a little lengthy with recommendations, um, but included in the recommendations I've had parents feel motivated and
[00:31:35] Empowered with this lengthy report that has these recommendations, um, to advocate for themselves. And I know there's resources out there for parents in terms of even quick searching educational audiologist, and there's, you know, the educational audiology group of America, that huge group that kind of connects all the educational audiologists in the world.
[00:31:58] So I think a good starting point if you're feeling a little overwhelmed and maybe you have a teacher of the deaf. You know, with asking them, or if you feel more comfortable, maybe touching base with your managing audiologists and go from there. Um, I definitely think there's a lot of resources out there for families and for audiologist.
[00:32:15] Right.
[00:32:15] Carrie: Definitely. So just to kind of wrap up a little bit, I know, um, you guys both work for Clarke schools for hearing and speech, but you're both at different campuses. And I understand there's five different sites that offered I have a center-based services, but can you just share a little bit more about your services and supports that you have.
[00:32:43] Rebecca: Sure. Um, so like you said, Clarke schools for hearing and speech, um, has five locations. I, um, work in Philadelphia. And my primary focus is working with the students, um, weekly to again, make sure and, and, um, and manage the integrity of the systems of their personal systems up their, of their, of the classroom.
[00:33:10] Systems. I also, um, we're sandwiched between in Philadelphia. We have a couple of children's hospitals, um, who all diagnosed the, our students, um, and manage them on the clinical side. So I am corresponding with their managing and clinical audiologists on a regular basis. I, um, provide them. Uh, in services to the classroom teachers, not only at Clark, but also in the mainstream, um, a typical day for me really is going to make sure each classroom, all equipment is working, coming back in, touching base with our team to make sure there's any, anything that if they're noticing any decreases in the listening checks or concerns that they might have with their, with their students, that, um, I'm, I'm unaware and ultimately, um, bring to the clinical side, um, And that's, that's pretty much what my role is.
[00:34:06] Isn't most of the time in the preschool at the Philadelphia location. Okay.
[00:34:11] Carrie: Ashley does your role look different.
[00:34:15] Ashley: Yeah. So I could literally show you my week's week schedule. And even though I have certain spots for certain appointments, it literally looks different every day. So like I discussed, I kind of wear both hats of managing audiologists as well as educational audiologists.
[00:34:31] So my day could be providing hearing tests for whether it's six months and over or adults. Um, we also do, you know, hearing aid fittings for. local patients in the community. Um, it also typically three times a week, I'm checking in with our kindergarten to eighth grade program for children with hearing loss.
[00:34:52] Um, so oftentimes similar to what Rebecca was saying, I'll check in with the students, I'll, you know, complete testing to make sure their equipment's functioning well. And then there's also. Educational piece for mainstream. So whether I'm managing or just the educational audiologist, um, we provide services testing.
[00:35:11] I know lately I've feel like I've had a million virtual in-services so lots of that too. Um, It's different day to day. And I love the opportunity to be able to support our kindergarten to eighth grade program. We also have a preschool program, um, that another audiologist supports. And then I get the opportunity to work with mainstream, which is totally different.
[00:35:33] And I know it can be chaos sometimes of the start of the school year, making sure all the equipment service and out there. Um, and then getting the opportunity to work with. Adults and kids in the area is great too. So as I said, you could ask me this today and the next week, and my schedule could look completely different, but I love that.
[00:35:54] I love that. I get to have that variety throughout my day.
[00:35:58] Carrie: Great. That's such an amazing, um, services that Clarke is able to offer to, uh, find different sites and communities. So thank you guys, but all of that. So I guess just to wrap up, I thought I would just ask, is there anything that I didn't ask you that is that you were like dying and thinking, oh my gosh, I hope that she asked me this question.
[00:36:22] Anything else you want to share?
[00:36:29] Rebecca: Um, honestly, I think that we've really covered all of everything that Ashley and I prepared for and more, um, I just think audiology on a whole is such a wonderful world that really makes a difference in our patients, students, Children's lives that, you know, educational clinical, anything in any kind of, um, individual in this world really is, is, um, really important, um, to any student out there that you make a difference.
[00:37:03] And it's really important to know that you, you have a really important role in your, in your students and your patient's lives.
[00:37:11] Carrie: Yeah. That's great. Ashley,any final a words.
[00:37:15] Ashley: Yeah. I think for me, you know, we're definitely getting into the time where we're getting towards the holidays. So don't hesitate to reach out to your managing audiologist or your educational audiologist.
[00:37:26] If you feel there's been any changes or if it's been a while, since you've seen one of them before, you know, since the last time you've seen them. So. I think overall we've kind of summed up the importance of not only educational managing, but all the team members that help support pediatric patients, as well as discussing further about the support for adult patients too, because we do have some adult patients that are in.
[00:37:51] College or university setting as well as you know.
[00:37:55] Carrie: Yeah. That transition piece, no matter if you're transitioning from what early intervention to preschools at school, age to college, um, touching base along the way is going to be really important because your needs change. And all of those different steps along the way, but I just want to say thank you to both of you for joining me on the empowEAR Audiology Podcast.
[00:38:17] I know our listener to as I really going to benefit from this conversation. Um, and so again, thank you.
[00:38:27] Announcer: This has been a production of the 3C Digital Media Network.

Episode 31: empowEAR Audiology - Dr. Stacey Lim 

[00:00:00] Announcer: Welcome to episode 31 of empowEAR Audiology with Dr. Carrie Spangler.
[00:00:16] Carrie: Welcome to the empowEAR Audiology Podcast, which is part of the 3C Digital Media Network. My name is Dr. Carrie Spangler, and I am your host. I am a passionate audiologist with a lifelong journey of living with hearing challenges in this vibrant hearing world. This podcast is for professionals, parents, individuals, with your own challenges and those who want to be inspired.
[00:00:45] Thank you for listening, and I hope you will subscribe, invite others to listen and leave me a positive review. I also wanted to invite all of you to visit and engage in the conversation on the empowEAR Audiology Facebook group. Transcripts for each episode can be found at www dot 3, the number 3, C digital media network dot com under the empowEAR podcast tab.
[00:01:18] Now let's get started with today's episode. Hi everyone. Welcome to empowEAR Audiology Podcast, I am really excited today to introduce my guest and friend of mine and someone I have actually known for quite a while. Today I have Dr. Stacy Lim with me. She is a PhD audiologist, and she's an associate professor of audiology at Central Michigan University.
[00:01:48] And Stacy has a history of different degrees. She went to the college of Wooster. She went to the University of Akron and to Kent State University to get a PhD. And all of those universities, are in the great state of Ohio. I have to say that right now because she's from Michigan. She does teach many courses related to pediatric and educational audiology.
[00:02:15] Cochlear implants and aural rehab. She's had numerous honors and recognitions. She has numerous publications, and I'm just excited to have her on today because she is going to share a little about her personal and her professional journey. So welcome Stacey.
[00:02:36] Stacey: Thank you so much for having me here. I'm so excited to be talking with you and it so good to see.
[00:02:43] my fellow friend and colleague in the field of audiology, we have a, so many interesting common I'm going to have stuff to share. It really exciting. So good to be here with you.
[00:02:54] Carrie: Yes. And I was trying to think Stacy, like when we met and I want to say that it was. At like a Natural communications event, maybe,
[00:03:07] Stacey: maybe I was trying to figure it out on that one too.
[00:03:09] I was thinking I probably was Natural communication and maybe you tested my hearing at U of A, I don't remember.
[00:03:22] Carrie: I might have. And that's probably all of on that same time, because when I was in graduate school at the university of Akron, with Dr. Flexer, and your parents were very involved with Natural Communications, which was like an auditory, verbal parent organization that they started in our area, and I want to say, maybe you were helping out with one of the Halloween.
[00:03:50] family events and I might've met you there, but I might've tested your hearing when I was a student to
[00:03:57] Stacey: you. Might've done both. I'm a, not so hard to say. And I know when I was going to Akron you were also one of my supervisors in clinic so we have this long history, but I'm not sure when it started
[00:04:10] And what's even crazier to me is that both of us wanted the same high school.
[00:04:19] Carrie: Yeah. So we both went to stow high school and grew up in Stowe and we never knew each other. We were just far enough apart. I was just far enough older than you that we never. We're in the same school at the same
[00:04:35] Stacey: time. Right? Exactly. It was so funny when people are like, oh, do know Carrie and she is from Stow. I was like, oh, It was so cool that we started in the same place and ended up doing the same kind of work.
[00:04:52] I will pass along the way. There's a kind of fun, not quite parallel , but not kind kind of parellel.
[00:04:59] Carrie: Right. And then they intersected when we both decided that we were pursuing a degree and ideology.
[00:05:08] Stacey: Yeah. It's so neat to have that kind of conversions. Yeah, it
[00:05:13] Carrie: is. So kind of going back to stow and, and growing up. Do you want to share a little bit with our listeners about your childhood journey and growing up with a hearing
[00:05:26] Stacey: loss?
[00:05:27] Yeah, I was born with profound hearing loss and my parents were really. Trying to find ways to know the pathway from the communicate. But if I have to option for me that they felt was the right fit for them. But every time in really was one day identified with hearing loss they went and asked for like multiple second, third, fourth
[00:05:54] I don't know how many opinion. So it kind of getting out of hand maybe the third or fourth time they ended up at Kent STate University when Carol Flexer was still a graduate student there. And for some reason the professor was supposed to test my hearing wasn’t there but Carol was. So she tested my hearing and it was confirmed that I had hearing loss and of course my parents started crying and she was like it is OK, there is a place in Colorado called the Listening Foundation and they work with kids with hearing loss and they teach them how to talk and hear
[00:06:33] And here my aunt, just totally by coincidence my dad I had a business trip, I think the next week or the week after the Denver, Colorado wow, like before the internet, like you call the telephone operator or telephone directory and get phone number.
[00:06:55] and he called and asked for the listening foundation and the person knew who he was talking about and knew it was a place where kids went to learn how to speak and hear. So my dad went there and no, he saw these kids and was ready to move to Colorado and Doreen Pollack who was their director at the listening foundation. So, no. Was a place in Pennsylvania, the BeeBee center.
[00:07:20] And you kind of go there and see what you think and see if it is a good place for you. needs and she feel that that's a good place for you and they went there with Carol Flexer and Jenny who was my speech therapist auditory verbal therapist
[00:07:33] at the time they brought me over there, I would probably like just a little over a year old, I think. And so there they met Helen Beebee was one of the pioneers of auditory verbal therapy and they brought the things they learned from Helen Beebee, back to Ohio and they began to work with me.
[00:07:58] and Now my parents worked really hard. No, I think one to chat with really hard, I think because a lot of people were like telling them, they were doing the wrong thing you know that this was not a time when cochlear implants were really not around basically and but hearing technology works.
[00:08:19] Not as advanced as they were now. I guess it probably would be a good way to think of it. And so now I had to go to Stow high school, but not right away. No, because they didn't want me. At the time, you know, when I maybe like, I think I want to say, like kindergarten I have to go to Kent which is neighboring school district.
[00:08:41] And I was in a classroom for part of the day with some other kids who hearing loss, but it was an oral program, which means they used spoken language. I don't remember how kids were in the classroom. But then they transition into a sign language based program. So my parents were like well that I well put a back in Stow or a parochial school and she can know if I could go there.
[00:09:10] Well the parochial school didn't want me because of my hearing loss and Stow didn’t want me at the middle school because of my hearing loss.Really didn't want me because of my hearing loss and they thought that I should use sign language and be in a self contained classroom and I my parents had to fight really hard to get me and the school psychologist
[00:09:33] was amazing. And he was the one who tested me and he started, he thought I could do well in the regular classroom. But it was more conditional. They mean, like I got my, an agreement with my parents that they would let me go to first grade and they were at the end of the year, kind of see my progress.
[00:09:59] And if I made enough progress or if I was doing well in school, they would let me go onto second grade. Otherwise I would have to go. Maybe a self-contained classroom or something, but I was mainstream all the way through high school at Stow which, you know, I think overall, I think it was a good experience for me in turned out like the classes are talking to my friends and all of that.
[00:10:27] I'm sure. I have a lot of things. I'm not sure why, but I just want to know about, yeah, no, I
[00:10:31] Carrie: guess I'm just thinking of a couple of things. Well, first of all, kudos to your parents because they are amazing. And basically, you know, what they felt was right for you. They were going to fight for it and they continued to do that, did that and they will.
[00:10:49] Pioneers. And so many ways since I know them, I know that they were pioneers in so many ways to help other families that and children that came after you and neighboring districts and programs be able to participate. Because of everything they went through, they were able to guide other families and how to do things.
[00:11:12] So first of all, kudos to your parents. I, I love your parents, so great. But I, I guess so when you, you said you went to Kent then for like pre and kindergarten,
[00:11:27] Stacey: I think for preschool, I want to one. I'll preschool in Cuyahoga Falls
[00:11:37] I got my wheel and I know like, okay, I don't remember much about it, but I remember having fun, but like, I know Kent I was in a self contained classroom with some other kids with hearing loss.
[00:11:51] Carrie: Okay. Do you feel, so then you went back to the Stow and you were probably one of the only kid maybe that you knew of that had hearing loss going through the school.
[00:12:03] Did you feel. How did that make you feel?
[00:12:08] Stacey: No, I really didn't mind it so much. I'm an, I think what was really great is that I had really good friends in the classroom and my teacher in Echo Hills were amazing. I love my first grade teacher for first grade and they all wore FM system in class. And I think. No. I have to really great friends who were extremely supportive.
[00:12:32] That they would, they love to use the FM system and that kind of thing, you know, like a lot of fun. And then I was really involved too. Like girl scouts in elementary school and other activities later on, but I don't think that. Nobody, they didn't like me because of my hearing loss. And I had no idea.
[00:12:50] They were all really nice about it and I don't really know open about it. They were all really accommodating. So I think I got lucky. So, and I think that, no, I don't think I've ever really noticed anybody being bad to me about that because I'm not hearing loss. But the other thing I thought was really great is because of my mom.
[00:13:10] She, I don't know how old I was, but we'll probably have another acquaintance or friend in common. Um Tony, I don't know if we remember her, but when I really let all, I. Maybe I was hoping you'd be, I have no idea. My mom introduced me to Tony’s mom
[00:13:31]probably a few, like a few years older than me. So she was really a great role model for me, I used to go play with her all the time. She's super outgoing. She super like a really good advocate for herself. If you couldn't hear something, things were fairly outspoken about it. You need to look at me and you know.
[00:13:53] So I can see you or whatever really great about it. I don't know. I'm honestly really shy. You both do a little bit of that too. And then I think meeting people like you along the way. Got a little bit older and more mature than got to become more my role model. That way I can. Okay. This is what Carrie does, and I can do that too.
[00:14:18] But I think that really helps just having a really great core group of friends who are really understanding of My hearing loss maybe how to communicate with me and also having other parents who also have hearing loss . And now my mom and natural communication though, are all, there's a whole bunch of other kid
[00:14:40] I was the oldest one, but there are others were close in age to me. So that helps
[00:14:45] Carrie: too. Yeah. That does always help to know that you're not the only one out there and to be able to mentor those who are younger, but then have those who are kind of a little, a step ahead of you to look up to you and, and to talk to as well.
[00:15:02] So kind of moving along to like, okay, you did your elementary and your high school career and graduated. When you were 18, you decided to pursue a cochlear implant. So what made you decide to do that
[00:15:19] Stacey: And that's new. Okay. right now couldn’t wore but at the time I think we're three or four. One of the kids in a natural communication had a cochlear implant and that thinking that implanted one might be one or two.
[00:15:36] Really early and who came over to our house and have Christmas tree. And we have, I mean, my parents own a hallmark store, so have all these musical ornaments and everything surely on tons of great ornaments. And he found one of my one of my ornaments which was a musical ornament. And it will push a button and then he pushed the button again and he is clicking along in tune.
[00:16:08] And now I was 17 and I was thinking if this kid can do this you know and he is in tune. I've got a pretty missing something here. I'm missing something because I can't do those. I can't, he’s in key. And so I started investigating the cochlear implant my senior year of high school, and really to think about not no.
[00:16:39] A lot of people like me who grew up auditory, verbal who were getting cochlear implant later. They were all like all the different kinds of backgrounds. I would like, I have no idea what's, but I'm thought was kind of my main motivation of why I still don't understand, but music sounds a lot better.
[00:17:00] So but but that was kind of like the turning point for me in getting a cochlear implant. So, wow.
[00:17:08] Carrie: that little Christmas ornament. Right. Who knew.
Yes it is a special ornament for me.
[00:17:17] So can you share a little bit more about that journey of the next step? So you kind of started thinking about it. How long did you think about it for, and then just share a little bit about your appointment and your next.
[00:17:33] Stacey: I think it happened. When has it been in the spring time? She knew y'all. I started thinking about it and I started investigating and, you know, like, I don't know, going for appointments and testing.
[00:17:46] I kind of remember like going and listening to a bunch of words and having to do that No other point. And I remember meeting Dr. Rizer who was an amazing surgeon. And I remember asking if there is anybody that I can talk to, and they connected me with like, what are they getting the names of? Maybe some young adult who knew sign them with, but really had no auditory experience before the cochlear implant. And I started asking about AG Bell and AVI Auditory Verbal International and kind of seeing the other teenager who got their cochlear implants like later even young adults who used spoken language and all that kind of hard.
[00:18:34] I, that, no, they all have really different experiences. Some of them are like adding any listening at first or I felt them. And it took a long time to know, understand anything and at that, okay. I really have no idea what to expect at this point, but well, I still have to still have the one good ear and so if it doesn't work.
[00:18:58] I have one good year and I am, I think my mom worried a lot about know what could happen and. My worry was a little bit different because I was absolutely terrified of like needles. I was terrified of like having the IV. Like my biggest worry was about an IV. And not like what would happen afterwards, but well, what, what happened to me?
[00:19:27] But no, after about a week after my 18th birthday, I got my cochlear implant surgery . I. Came home on the Same day and recovered. And about a month afterward in July, I got turned on. And I'm kind of interested in me cause I'm really nice about it. And I would kind of remember this because on the same day that I had surgery
[00:19:52]there was an older gentleman who got implanted and they also wanted to make sure that we were also getting activated on the same day and it was really nice to see him again. that to see him again and had shared that same day, that same family. And, but the interesting is that now, in the very beginning they turn me on and all that
[00:20:15] So they were like do you to hear that. And I'm like, hear what? They were like there is a radio. I'm like, I don't hear a radio. I don't hear it. And You know, when you have that. And of course my mom getting really nervous. So on the way home in the car, maybe half an hour after the appointment, which was in Warren which is about an hour away [00:20:37] My mom has done, like testing me, you know, like csan you hear me hear me and just don't ask me I'm repeating stuff to her. And I said, okay, what can I hear? Like, I think maybe that is a fire engine or an ambulance or some kind of emergency vehicle or something, I don't remember what it was and like, okay, well, but then all of a sudden you begin to hear.
[00:21:01] All of the different sound. You never knew where they are. Like I went home and I turn on the stove and I'm like, oh my gosh. Now the pilot like really annoying. It sounds like turning the stove on and off. I opened a bottle of pop and I didn't know when to open the bottle of pop, but don't make the shushing noise.
[00:21:21] What are the carbonation escapes, but there's other things. But the other thing that was Important for me was that no, I really love musical and I was a really big musical fan, like my high school year, like the Beatles, Tom Petty and musical and musicals all over my goals too. And so if I'm out of shows, I watch like all my favorite musical, like, okay, I'm going watch all of these just in case like.
[00:21:54] There's definitely work out. I still have the memory of, I can leave. So like a month after I activated and I'm like, I'm going to try that. And I'm going to try this. I am going to watch the Sound of Music. So there's a song Climb up Your mountain, which is sung by. I don't even know who sang by, but. Opera singer.
[00:22:16] Right? So we, before the cochlear implant if you kind of like, wow, like, wow, amazing. Because before my cochlear implants should go up the notes, then we got really high. Right. But another limitations are hearing aids. Well that after a while it kind of clip like different frequency. Right. And so. So, first of all, our, until we come back, then I thought that was completely normal before my cochlear implant and I'm watching this afterwards and I'm like, oh my God.
[00:22:49] Oh, boy, her voice is not stopping anywhere so amazing to me. And I liked if it's so cool. And now there are all these moments you really don't know like how much better you do with a cochlear implant. I think not if I'm on the phone with a friend of mine for half an hour, maybe a few months afterward and I hung up and I was like, oh my gosh, I was just on a phone with a friend a half an hour, 45 minutes, like a long conversation.
[00:23:19] And was easy. Like I didn't have no, no, the walk of heart. I got not that well before the cochlear implant, would have been really difficult to do so. Just a neat journey.
[00:23:35] Carrie: Yeah. No, those little moments that you just described are so exciting and makes you realize like that difference between having the cochlear implant and.
[00:23:48] what The hearing aid can do. And it's so, so different
[00:23:51] Stacey: different. And I felt, I mean, and I've still used for, because I got benefit from both, but like, I I'm really glad I never been more grateful than this past year. Hopefully I'm fat because I, I should think about the time when my, hopefully when cochlear implant battery died.
[00:24:17] And the most inconvenient places. If people are wearing a mask and I'm like hang on a second. I knew I put a battery in so that I can hear you., And I'm talking to people. Yeah. I mean, not all easy, but a lot easier than I think it would have been with hearing aids. Because I'm able to follow a lot of conversation, even when people are wearing a mask and that's not an ideal listening situation at all.
[00:24:44] Carrie: I feel grateful. Even though it happened, the cochlear implant for me happened right before COVID and the pandemic and masks. And I felt like I was still getting used to the cochlear implant, but at the same time, It was my cochlear implant was my stronger ear. And I depend on that more so than my hearing aid itself.
[00:25:09] So before we go on, I wanted to talk a little bit about your audiology career too, but I just want to ask what benefit do you find from keeping the hearing aid on?
[00:25:22] Stacey: I want to thought. I definitely, I kind of go back when I kind of explain it, is that with my one, analogy, I got it. Now with my cochlear implant.
[00:25:36] I got really, really fantastic. The middle and high frequency and when she, oh my God, I. Yeah, I think that I'd have been a long time since I played a piano. I'm like time to imagine the chord, that to be a math and a, to high two frequencies are. What the cochlear implant really gives me a really great high-frequency information.
[00:26:03] A lot of really good mid-frequency information, low frequency information, not a switch, but with the hearing aid. I got really rich information from low and mid frequency, a lot more of robust. So things sound a lot more full, and I know how to like I think even listening to music, it could feel a little bit, what sound for music for you have a nicer quality and tap into people.
[00:26:31] The voices sound much more full, and I've still got some, some localization. Oh, but no, but I want their sound quality for me.
[00:26:44] Carrie: Yeah, I do. I was just interested to hear what you had to say since you've been a bi-modal user for many, many years, and I haven't been, but that's what I've noticed too, is people's voices sound more. I guess some natural for me. And a, or a fuller, robust is a good word too. And like you said, with the music, it's like, the bass is coming into this ear, my hearing aid here and that all the treble is coming in this ear.
[00:27:15] But the cochlear implant, but I, as of right now, I know this is the right decision for me to be bi-modal and if it was. switch you know, decrease a lot in my hearing aid ear, then I would definitely consider being bilateral. But right now it doesn't make sense to be bilateral, but me that's
[00:27:36] Stacey: how I feel too.
[00:27:37] That's kind of what I told myself too. If for some reason my hearing got worse. My hearing aid I would get a call plan, but right now it just sounds like. Well,
[00:27:49] Carrie: it's good to have that validation from someone else too.
[00:27:57] So kind of moving forward a little bit, you graduated from high school and then you eventually became an audiologist, but how did you decide to go
[00:28:09] Stacey: on that path? So what happened when I was sixteeen.
[00:28:15] So let me back up and just by saying my mom, is from the Phillippines and check different connections in the Philippines. And somehow I don't remember howteacher for the deaf in the Philippines who wanted to have a conference about auditory verbal therapy. So they invited me and my mom, Don Goldberg with an auditory verbal therapist.
[00:28:43] Faculty member at the part of the Wooster and Catherine Macinroe who was an auditory verbal therapist at the Bee Bee Center they invited all of us to go speak at their conference in the Philippines. So what happened is I was sitting next to Don and they had an ENT who've got up on the stage and starts saying children who are severe to profound and who are deaf will never learn to speak.
[00:29:12] And Don and I look at each other and say okay, this is totally not true. And I kind of decided at that point, I want it to be an audiologist and possibly a pediatric audiology that, so that way I could know mix of actually knew that they were fun, but do they cater to a deaf and hard and that they could not in fact learn to speak that kind of how I started you know really becoming really serious andinterested about audiology.
[00:29:43]
[00:29:46] Carrie: Wow. That's, that's a great story. And to think, I know that you are still connected to Don Goldberg as well, and to see how. All of that came full circle for you.
[00:30:00] Stacey: the Other thing about Don, is that not the first time I met him. But when I wanted to BeeBee Center, he was the auditory verbal therapist that my parents were observing.
[00:30:14] Wow. At that age, maybe one to two years old they were observing Don. Obviously the first time I met him I don't remember him at all. And then our paths crossed again when I was 15 at that conference. They all, everybody kind of knowing contact and one of my mentors, so definitely kind of cool. So that, yeah, so that's my main motivation for becoming an audiologist.
[00:30:43] is was that conference with Don, Catherine McEnroe, Matthew Miller, and my mom and the ENT. Wow.
[00:30:50] Carrie: Yeah, because the ENT had the wrong perception about and making an assumption about all kids who had deaf and hard
[00:30:59] Stacey: of hearing. And that's should not be happening now, especially with technology.
[00:31:06] Carrie: Right. I think it still does, but I think, you know, it's great that you went into this because families need to be informed of what all of their options are.
[00:31:16] And then I think it's important that they have the opportunity to meet individuals who are deaf and hard of hearing who are adults so that they can talk to them and ask them questions too. So being well-informed parents is a good thing for their children.
[00:31:37] Stacey: I agree. And I think it's really important for audiologists to put parents in that planning. I know looking back on my parents experiences
[00:31:41]they didn't have that, and that was pre internet going to card catalogs and kind of no time so that I was doing a lot of that research on their own. And that's a very difficult learning, I think for parents who made maybe a little bit, usually now the internet, but definitely not back then.
[00:32:04] Carrie: Right, right. Yeah. And maybe now it's even information overload. So you get so much information and you don't know how to navigate it too. So that's also kind of the other end of it.
[00:32:20] Stacey: Right. And we got at all. No. Yeah, no.
[00:32:27] Carrie: So tell me a little bit about. How why you decided to pursue your PhD after getting your
[00:32:35] Stacey: AUD [00:32:37] So basically I've kind of had to go back to maybe undergrad too, because I think know, in undergrad too, I obviously I went to Wooster because of Don, but the one thing about Wooster is that and. I really didn't quite understand that completely until my while into my senior year at Wooster, that when you go to wooster the
[00:33:04] capstone path, which is basically a thesis, you do something kind of aligned, like a master's level student to do so that cut up my exposure to the research. At that time to all fall apply for Fulbright grant to do you research in Germany and there has always been a little bit of
[00:33:24] It would research in my blood, but I already know, after I graduated from Wooster I'm like I am never doing research ever again in life. And I went into to Akron thinking, I'm just going to. Got my degree and become a pediatric audiologist. And my third year I gave a presentation in class and that different, really fun, being able to teach people something in what.
[00:33:54] I think I was doing a presentation about my research in Germany. I think that's what I was doing. And I'm like meaning fun. I'm really kind of like the teaching thing. So I've started thinking more about a PhD and because I wanted to go on to teach. So. After I graduated from my graduate degree
[00:34:18] . I decided not from Akron. What am I thinking? I'm kind of thinking how to kind of stay when Kent State. Wait, if I'm Akron I decided to get my PhD, at Kent state university. And because I wanted to teach eventually.
[00:34:37] Carrie: And now you're at Central Michigan. And can you share a little bit about what your research and your teaching focus is at central Michigan?
[00:34:47] Stacey: Yeah, so my teaching is primarily and I taught a lot of classes at CMU. I got to see I'm you, but down some of the stuff I had taught have been cochlear implant. I've taught aural habilitation though, for my thing to offered to, to me. So it's my third class is a research methods class. And I got assigned to when I first started that I assigned to a pharmacology class, which I was like, oh my goodness.
[00:35:15] Okay. But no, what I've to kind of love it too. I've gone through that. Really interesting, really fascinating. And I think I'm really lucky in that I've been able to teach classes. I like, and different times I'm covering for people while I'm taught different classes. I'd be in and out of different course.
[00:35:38] And I've also taught other things throughout the time of CMU, like anatomy and physiology and. Educational audiology or when you cover for somebody went on sabbatical on the her leave for the class hearing disorders, a lot of different courses I've taught, but my main core courses have been cochlear implants or rehab, research methods and
[00:36:02] the pharmacology and tinnitus we had to add tinnitus we intended to add. We also started teaching the undergrad course. What I started teaching last year and teaching this year with communication sciences and disorers. And differences in society with the kind of interesting core. So there've been a lot of variety, which I spent a lot of fun and some their stuff I have done.
[00:36:32] And my, I got maybe my passion. No, I guess I finished that in a Kent state university when I was a PhD student. And. Something that I, I am still no find, very exciting. It was something that after we blew out of a fun show with another person who was a PhD student, but in a totally different department she is or like a fashion professor and to like getting a PhD In the education department and we met in a statistics class and she's taught me knitting being really interested in fashion.
[00:37:17] She's like, what are you doing? And someone has to do the other long thing that too, but what happened? We both liked each other so much while I. I want to throw something together, but what the heck can we do here in fashion? And I'm an audiology, what the heck do we do? Totally different kind of feel. And we don't reach out to nothing.
[00:37:40] Like, like what do teenagers want from their hearing devices and how do they view their hearing device and that kind of thing. In Minnesota for a fashion conference, fashion and health symposium. And do I do a couple other talks about disability and fashionable prosthesis and legs
[00:38:06] or clothing for people with disabilities? Shall we start looking and kind of exploring this idea of disability and fashion and that intersection of fashion and fashionable. You know assistive devices and accessories for people on disability, including hearing loss and what really grew out of it really exciting. I think, and what a museum exhibition called disabled beauty the evolution of beauty, disability and ability and museum exhibition, that feature.
[00:38:44] Thanks. We knew. Cool. Hearing aids and earmold and
[00:38:52] adaptive clothing for people who have, have other disabilities, maybe, wheelchair, you show all the different teams or walking and all different kinds of. I didn't and that walk, and it's still like my passion. And just sit in the topic at that intersection of disability and fashion, because I think when you have thing that all know, it can very big time to encounter stigma.
[00:39:21] And we thought that. No, you got to be me, you know, and I, some of my students have been very interested in some of the topics I'd want to do and how we thought path along looking at now and what know, what do you kids want basically. And then in some of the other stuff I've been involved with happened things like reading and learning , that kind of thing with hearing loss
[00:39:55] Like some stuff. the dissertation. We're definitely, I'm bilateral cochlear implants. I'm really interested in the topic. And I actually developed interest in other things and I developed aural habilitation other things I'm really interested in . I think I would continue to kind of go down back that direction. And the other than that one really exciting for me is seeing what kind of ideas my student come up with?
[00:40:20] And some of them will come up with some really cool stuff. And I'm like, wow, impressive and amazing what you guys are doing. And they got really excited about it, even though they never go on for a pH D, which is okay. No, I have a couple who are going for PhD, like now or planning to, but they were kind of exploring.
[00:40:40]the idea that they are interested in, but that's been really fun for me. That, that pot,
[00:40:48] Carrie: yeah, all of that is so great. And I think. Your perception, like your own self journey of living, you know, and growing up with hearing loss really plays into so many of these different insight that you can bring to the profession that not everybody can.
[00:41:08] So I'm sure your students who have you in class, you're able to share some of those personal insights along with the research that really. Makes that information stick for people, so being able to tell a story about your own style while you're sharing research can make students remember that research more because they tie it into a lot of this storytelling.
[00:41:32] Do you feel that?
[00:41:33] Stacey: Yeah, I think that's really exciting. And when they got really excited about what they're doing or
[00:41:44] collecting their data and it's so much fun to see that and kind of see data and kind of how they're thinking about what the. Right. That's a lot of fun for me.
[00:41:57] Carrie: Yeah. And I just want to tell you too, that the disabled beauty, I was able to come to your kickoff. Was it like your kickoff event at Kent state when you had that?
[00:42:08] I mean, it was like a dinner and it was a reception and it was it was so amazing. And I was able to meet the other professor from the fashion education department that you are not progressing with. It was true the PhD student student at the time. It was just amazing the setup of what you guys put together and they had on display.
[00:42:30] So thanks for sharing that. And I'm glad that it's still a part of what you're interested in and moving to so great
[00:42:38] Stacey: fun, so much fun to kind of bring to you. Into contact half in a lot of really interesting people in the community and the disabled community, and a lot of fun now kind of seeing the different factor about know how they viewed on or how they'd be fashionable have been many, not that really interesting conversation about disability and perception of.
[00:43:07] Carrie: And the, in the show notes, I can put that link that you shared with me about the disabled beauty and they, people can go to that link and find out more information about that project as well. So just to kind of wrap up, because I think we're coming up on an hour and I just wanted to ask you the anything else that you want to share that I didn't ask you, that you were hoping I might've asked you.
[00:43:34] Stacey: I think some of the things I kind of think are important if, you know, I think for anybody whether they are a parent or person with hearing loss with it not to underestimate them. And don't have a lower expectation, I mean, I, I know that you know. It's good to challenge yourself. It's good to try things. Like, no, I decided that I wanted to learn German and that kind of thing.
[00:44:01] So we got to and live in Germany for a year and that kind of thing. And or you want to try things like music or whatever, just kind of explore it all is really important for the Chinese. See it like that's the most fun thing is making sure you like it. And the other thing I will say, I know both you and I have the same opinion on this thought is really important to have a community of people who have hearing loss h that you can relate to.
[00:44:35] They are the ones who will be able to like understand what new going through return, go for them for advice and help. And they can be a role model. If you can do a little model for somebody else. I think even if they could see that they're doing really well, and they're the only kid with hearing loss, make sure they have that connection with somebody else.
[00:44:55] We got that many helpful my top bank.
[00:44:58] Carrie: Oh, I 100% agree. And I'm so glad that you're part of my community.
[00:45:03] Stacey: I'm so glad. It's all. It's so good to have, you know, one of my role model and my colleague that I combined. What about the, well, I can ask a question or whatever, really great. I've
[00:45:17] Carrie: enjoyed collaborating on different projects and being able to be at different conferences with you.
[00:45:23] And again, being able to reach out to you when I was going through the cochlear implant journey and our little community of cochlear implant using. You guys were able to tell me what to expect. And I so appreciated that. So your comment about making sure you have a community is important to have. So again, Stacey, I just wanted to say thank you for being a part of the empowEAR Audiology Podcast.
[00:45:51] I think this has been a wonderful conversation with a colleague and a friend, and I just want to thank you for being a part
[00:45:57] Stacey: . Oh, thank you so much for having me. I know we could talk forever. I know let's catch up sometime other time too.
[00:46:06] Carrie: I'm sure that hopefully we'll be able to see each other in person at sometime in the future and we'll be able to catch up that way too.
[00:46:13] So thanks again.
[00:46:15] Stacey: And thank you so much. Good talking to you.
Announcer: This has been a production of the 3C Digital Media Network.

Episode 30: empowEAR Audiology - Dr. Anita Jeyakumar 

[00:00:00] Announcer: Welcome to episode 30 of empowEAR Audiology with Dr. Carrie Spangler.
[00:00:16] Carrie: Welcome to the empowEAR Audiology Podcast, which is part of the 3C Digital Media Network. My name is Dr. Carrie Spangler, and I am your host. I am a passionate audiologist with a lifelong journey of living with hearing challenges in this vibrant hearing world. This podcast is for professionals, parents, individuals, with your own challenges and those who want to be inspired.
[00:00:45] Thank you for listening, and I hope you will subscribe, invite others to listen and leave me a positive review. I also wanted to invite all of you to visit and engage in the conversation on the empowEAR Audiology Facebook group. Transcripts for each episode can be found at www dot 3, the number 3, C digital media network.com under the empowEAR Podcast tab.
[00:01:19] Now let's get started with today's episode. All right. Welcome listeners to the empowEAR Audiology Podcast. Today I have a special guest with me, Dr. Anita Jeyakumar. And I'm going to tell you a little bit about her history. Dr. Jeyakumar works for Mercy health otolaryngology in the Youngstown area and Ohio.
[00:01:40] She received a bachelor's degree in chemistry from Belmont university in Nashville, Tennessee. She received a master's in chemistry degree from Tennessee State university in Nashville, Tennessee and received a medical degree from Maharry medical college in Nashville. Dr. Jeyakumar completed an internship and general surgery and a residency in otolaryngology at Strong Memorial hospital university and Rochester and Rochester, New York.
[00:02:11] She completed her clinical fellowship in pediatric otolaryngology at the Cleveland Clinic Foundation in Cleveland, Ohio. She has over 20 years of experience and brings the new service line of otology and the advanced treatment of hearing loss to the Youngstown, Ohio area. She is starting a mock high disciplinary clinic for patients with hearing loss and a cochlear implantation and hearing rehab program.
[00:02:38] Dr. Jeyakumar’s current research into a study focused on the genetics of hearing loss And quality of life projects. So welcome to the empowEAR audiology podcast. And thank you for being here today.
[00:02:53] Anita: Thank you for having me very much excited to share this experience with you. Yes. And
[00:02:59] Carrie: I believe I always like to start out my podcast of how we know each other.
[00:03:05] And I think we met each other maybe around four years ago. Does that sound right?
[00:03:10] Anita: That sounds about right. And we have continued. It's like, I'm glad we like each other because we can't avoid each other. Cause we overlap all the time.
[00:03:20] Carrie: We do, we definitely share similar interest in a broad field and we both save on the American cochlear implant Alliance as the state champion for Ohio.
[00:03:31] Then we have our. In common. And I'm excited to talk a little bit more today about unilateral. And I think one of the big questions that I got as an audiologist, and I don't know if you get this as an otolaryngologist, is that while you have one good year, so you're good to go. Do you ever hear that?
[00:03:54] Anita: I hear that all the time.
[00:03:55] If I had a dime for how often I heard that I would be a very wealthy person, you know, just to kind of give context, when you talk about from a pediatric perspective, it's a little bit different than when you talk about it from an adult perspective, but from a pediatric perspective, it is not actually super rare.
[00:04:14] So about one in 1000 children are born with single-sided deafness. And that incidence goes up with age. So by the time children are age six to 19, about 14% of children can have some level of single-sided deafness. And we've known since the eighties really there's a pretty prolific author from then called Bess who wrote about children who had significant issues, both educationally, socially, cognitively, and behaviorally from single-sided deafness.
[00:04:46] In adult world, we often talk about the cocktail hour. So for anyone who likes to go to parties, whether you imbibe or not when you go to a party, you're typically surrounded by a lot of people, but your two ears then give you access to that full room of people. And there's a lot going on around you and your ears and brain learn to filter out what's important.
[00:05:08] And what's not for a child that cocktail hours sort of mirrored on a daily basis in the playground or a classroom, when a child goes to a playground, they are surrounded by the appears and their teachers or whatnot. And when you have single-sided hearing loss in either situation, you only have access to half of the information.
[00:05:28] So you're working that much harder to try to figure out what the context of the conversation. What the nuances of the situation are, and it's not unusual that you will get some of it wrong. So a lot of people end up being able to shy or reclusive because they don't want to put themselves in those environments, whether on the playground or in a party that expose them to what are perceived as sort of traumatic events.
[00:05:56] Quite frankly.
[00:05:58] Carrie: Yeah. That's a good point about playground or cocktail hour as you describe it. I think one of the things that I hear from an audiology perspective is that Parents or teachers, so, well, one on one that, you know, they seem to hear me quite fine. I don't see them having any difficulties. How do you explain to families or to other significant people in their life that there is more of an impact because they're not seeing it.
[00:06:32] Anita: So I think the best thing is twofold. One is that I often have what I call my poor man's video of what hearing loss sounds like to a person, because particularly when it's a family trying to make decisions for their child, you're really talking to people who probably have normal hearing most of the time.
[00:06:52] So they're trying to make a decision that's really important about something. They totally have no understanding of. So one I play a video? Then too, I try to relate to what's happens daily. So let's say Jack has a single sided deafness. I asked them things like, how does Jack do when you call him from another room?
[00:07:12] How does Jack do when you give him instructions? And he can't see you? And what I universally typically will get is some kind of acknowledgement that Jack does not do well in those situations. And they assume it's because Jack is being a kid and not listening. And of course, that's an element of that.
[00:07:31] It's not like these kids are always the model citizens of the world. But you know, it's really that Jack cannot follow an instruction if Jack doesn't know where the instructions are coming from or worse yet what the instructions are. So I try to relate on that level, because it's not too many families that don't want to relate to their loved ones, whether it's a child or a spouse or what not.
[00:07:55] So once you can get them to say that all these situations are happening. So these are some of the adjustments you want to think about taking, like, for example, exactly what you cited, Carrie that They will do better if you talk to them face to face, don't ask Jack for a bottle of water when you're in the kitchen and he's in the living room.
[00:08:14] Cause Jack won't know what you want, but if you go to Jack and say, you want a bottle of water, Jack will probably get you a bottle of water. You know? So things like face-to-face communication, the ability for them to integrate their lip reading and social cues are all going to be very important for them to communicate on a one-on-one basis.
[00:08:34] Now those don't solve the cocktail hour issue and things like that with echoing and sound localization, because that's the big thing that you're really losing when you don't have hearing in one ear.
[00:08:46] Carrie: So from a medical perspective, just kind of backing up, but what are some of the main causes of Unilateral hearing loss in children and then also in adults?
[00:08:58] Anita: So I would say it's fair to say that the differential for both are quite different. So if a child is born with unilateral hearing, Oftentimes a child is recommended to have some kind of a workup, which includes things like screening for congenital CMV. It has a high incidence of unilateral hearing loss.
[00:09:17] Children tend to have more anatomical anomalies. So oftentimes we get imaging because we want to diagnose those. And there's also a high incidence of Auditory nerve findings. They may have a nerve, but it's sometimes kind of what we call hyperplastic, which means it's kind of wimpy looking. So they have findings that you can actually concretely find and potentially address.
[00:09:39] If you know, they have the findings. By the time you start to get older, some of these are not as prevalent, probably acquired. And some amount of presbycusis causes more adult onset, unilateral hearing loss, you know, people don't protect their hearing at all. So there's a high prevalence of unilateral hearing loss in people who use weapons because they fire guns and don't necessarily use hearing protection.
[00:10:06] And those hair cells, as you, and I know are, are very fragile and don't like being traumatized. And so when it's gone, it's gone. So. Pathway and the mechanisms kind of are different, little different between kids and adults.
[00:10:20] Carrie: Yeah. So are there other, like co-existing factors that sometimes are red flags with unilateral hearing loss, medically.
[00:10:31] Anita: So medically, probably congenital CMV is the biggest one. Because unfortunately congenital CMV is something a child is typically born with and they get it in utero, but most places in our country do not do screening for congenital CMV because in the mother. It manifests as a cold. And if you don't know, you don't know what you don't know.
[00:10:53] Children with congenital CMV can be divided into symptomatic and asymptomatic. So unfortunately the symptomatic, maybe fortunately the symptomatic ones are a very small group. Those kids usually will show up as being really small birth weight or small head, or may have other medical issues going on.
[00:11:13] So those kids often times are identified in the nursery or in the NICU. And that testing for congenital CMV really needs to be done in the first two weeks to one month of life before you can't really rule it out. So you're in a, such a tight window. They're way more kids born with asymptomatic, congenital CMV, and those ones are often missed and there really is not a good way of finding them unless you have access to their newborn blood spot.
[00:11:41] Most states don't store that for clear periods of time. So you are kind of using some clues that you might get along the way to determine that, but you don't necessarily always know the etiology.
[00:11:56] Carrie: Yeah. Sounds like a hot topic as well, but I was going to ask you is my next question. Like, what are some of those hot topics that are surrounding unilateral hearing loss?
[00:12:09] Anita: So kind of like what we opened with, you know, back in the day, let's say the eighties. And prior they really weren't a lot of options for treatment of unilateral hearing loss. So I would say a lot of the hot topics focuses on, well, my grandfather had unilateral hearing loss and he did just fine.
[00:12:28] So why do we need to do anything for Jack or Jill? Well, it's 2021. And fortunately I will say there are options. So I think the big thing is to really kind of get it out there that, that you know, a family may choose not to exercise their options, but a family needs to know that they have options and really they have quite a range of options.
[00:12:51] So one, we do have to identify them, but hopefully with newborn screening and things like that, we can identify them effectively. Those kids need to be plugged into early intervention because it's important that the children get access to sound good Quality sound to kind of keep on target with the peers, because there's a high incidence that these kids will repeat a grade or will suffer in school.
[00:13:15] If they want to start with less interventions, things like preferential seating in the classroom can be really impactful as well as wearing an FM system in the classroom. So to provide those resources in a public school setting, as you well know, they often have to have a 504 plan or an IEP to make sure that those resources can be provided for them.
[00:13:36] And those kids have really measurable targets that follow them. A lot of these kids will need speech therapy. And then when we start to really go into the individual interventions, anything from a specialized kind of hearing aid called a CROS hearing aid, or a specialized kind of conduction hearing aid called a Baha or even a cochlear implant, which was FDA approved in 2019 for single-sided deafness five ages five and above are all options.
[00:14:05] And I think it's important for parents and families to understand that the options are there.
[00:14:11] Carrie: Yeah, which kind of brings me to my next question. And I know you've been heavily involved in the cochlear implants for many years, both children and now adults. But for kids who are five and above and even adults, what is a good candidate for a single sided deafness kid or an adult, I guess maybe talk from the child perspective.
[00:14:35] Anita: Okay. That's such a great question. And I think. Depending on who you talk to, you'll probably get different answers. So, as I mentioned, I think the FDA approved for five and above now, majority of our data really comes from Europe. Europe is sort of 10 years ahead of the US in terms of implant technology and outcomes.
[00:14:55] And what they seem to show is that even for single sided deafness, the younger, you implant them the better they do. Now the confounding factor. That makes sense for those of us in the implant world, because the sooner they have auditory stimulation in the affected ear, the better their brain knows what to do with the sound.
[00:15:13] The dilemma is when they have single-sided deafness, really it's the brain that hears. So the brain has a good ear that it can hold on to that whole time. So how do you focus a rehab option? Or focus the attention on the implanted ear. And I don't know that we have conclusively figured that out for children.
[00:15:35] Fortunately implants, if that's the route they go, they do have streaming technology. So really beyond just putting the implant in the child, there needs to be a dedicated rehab program for the child to use that ear. Otherwise, guess what? The child is always going to have better sound in their normal ear. And their child is always going to listen to the normal ear.
[00:15:58] The same really goes for adults. You know, I think auditory the duration of auditory deprivation matters. In adults, there's some literature saying that anywhere from four to seven years of auditory deprivation, meaning they've had no access to that sound can negatively impact the outcome. The confounding factors are always that most adult implant programs in our country don't have.
[00:16:22] Rehab as part of an implant program. So without giving them the structured guidance of how to use the new found access to sound, adults really struggle. You know, this is not necessarily all intuitive. It might be intuitive to you and me because we are in that world in such a different way. But it is not intuitive to the average adult who is seeking this.
[00:16:46] They just want access to sound on both sides, but without that rehab focus, streaming everyday focused therapy to that ear, they tend to always use their better ear and really rely on this only as a failed state. So that mechanism probably really needs to be even in better place for both adult and children.
[00:17:06] Carrie: Yeah, that's all good information. So one question I have out of that is you talked about that time of auditory deprivation from like four to seven years. Whatever, but for kids, if the child was using Some sort of amplification and that ear that was has the hearing loss, whether they, I was stimulating one hair cell.
[00:17:32] And that's it. Have you noticed, or is there any research that shows that they may Benefit or take, you know, ownership of that cochlear implant more so than someone that's never used any kind of technology in that ear?
[00:17:49] Anita: Yes, absolutely. And I think some of that is an extrapolation from bilateral cochlear implants, or just an unilateral implants and older children for other reasons.
[00:17:58] The reality is that the sooner you teach a child to leave a device on them, especially if they have a little bit of auditory benefit. Yeah. It may not be speech. It may not be clarity, but it's just some auditory awareness. Then the better they're going to accept something that'll give them more. The reality is when we first put an implant on anyone.
[00:18:20] It sounds awful. I don't care what we say. It sounds terrible. You know, you talk to anyone who can verbalize to you. They will say it sounds nothing like normal sound sounded to them, but they have to push through it. And if a child never accepts it in the first place, they're never going to get to a point that they push through it.
[00:18:39] Cause eventually it'll sound Greatish better than what they had before far better than what they had before, but they have to push through all of that. And that's really what the efforts of our audiology team or a speech pathologist both come in because they have to tinker with it to really get each person's individual program to be what is optimized for them.
[00:19:01] And there really is not a one size fits anybody. It has to be individualized to each person and that's where the dilemma with the young kids come in too. It's like, how do you get the feedback from a three year old? That the sounds awful when the three-year-old is saying five words, you know, it's, those are challenges.
[00:19:21] So there's a lot of effort that has to happen behind the scenes to really show that it's going to be beneficial. I think with the right infrastructure, it really is. I'm a believer for sure. It's just, I don't know that we always have the right infrastructure in place.
[00:19:38] Carrie: And you talked a little bit earlier that there are some other options that families or adults may want to try as well, such as a CROS type hearing aid or a bone conduction devices.
[00:19:53] What has been your experience with those types of devices or is it pretty individual? I have, depending on the person, but that is what.
[00:20:03] Anita: So, I guess I'll start with one is that I, as a cochlear implant surgeon probably have an innate bias against some of those devices. So maybe you might need to take everything I say with a pinch of that salt and it now the thing, but the reality.
[00:20:20] Before coconut implants became FDA approved for, you know, single-sided deafness. There was no FDA approved option for single-sided deafness for the affected ear. The only options were technologies that basically routed sound from the affected side to the normal side. So both the CROS and the Baha based on technology that doesn't use the affected ear at all.
[00:20:45] It just gets the sound from one ear, the affected ear and routes it in different ways to the unaffected ear. So the issue I've had, I think not, especially now that's the cochlear implants are an option is that you really are not getting information on that side. You're not using the ear that you were born with.
[00:21:05] Let's put it that way. You're basically your good ear is doing all the work for you and you're learning to say, oh, okay. That information was from my affected side. This information is for my good side and it's really, really confusing. And that's certainly what I saw in my patients is that yeah, there were certain situations that had worked.
[00:21:27] It's definitely not easily accepted. I would say both of those technologies have also come a long ways. When I first came out of training, I would have said I would never, ever, ever prescribe a CROS to anyone because they were awful. And they just seem like they muted the good ear as opposed to help to anything.
[00:21:47] But both of those technologies have become so much better. That the nice thing about them. The one benefit that they both have is that you can try them without surgery. You know, you can put hearing aids on people and try them without necessarily saying, this is what they've committed to for life. You can try a bone conduction device on a soft band that they would wear and get.
[00:22:09] Yeah, it's not a hundred percent what it would be like if it was put surgically, but at least it's a really good sense of what it could be like. That the cochlear implant is a leap of faith. You know, you have to say, okay, this is what we're doing, but you can't really test it out until you just do it.
[00:22:26] And I think that's probably the big advantage of the nonsurgical or less surgical approaches is that as a patient, I do think they should march along the algorithm, you know, they should try the non-surgical ones at least briefly to get a sense of, do we see any improvement in the. Does the child learn to wear this non-surgical thing well?
[00:22:49] before we put on the useful surgical thing, and I think there's value in the story for them.
[00:22:57] Carrie: Yeah. And I think that commitment piece that you said is so important. So if they're not going to be committed to a more non-surgical outcome, are they ever going to be committed to a surgical outcome?
[00:23:12] Anita: Yeah, the reality is we are Americans and we live in an instant gratification society. So when you tell people that they have to go through this one big hoop, but that leads to 800 little hoops, you know it's not necessarily what they want to hear. They are willing to go through the one hoop, but they want it to be done.
[00:23:33] They want it to be taken care of. And unfortunately with any of these options that. It really, we're talking about a lifetime of a journey. You know, I tell our pediatric patients and their families that you were going to see this through to high school because your kid needs to finish high school. A lot of children with hearing loss don't get that opportunity because the system doesn't work for them.
[00:23:56] Not because their intelligence is remotely an issue, it's just a system fails them. So that applies to the kids with single-sided deafness and the, and the literature shows that.
[00:24:08] Carrie: Yeah. I, I know it's been such a hot topic along, along the journey of working with families who are going through these different decisions.
[00:24:20] So if a patient decides to do nothing and you kind of mentioned this earlier, what can we do to still be supportive?
[00:24:30] Anita: So I, I think that is complete, you know, we have autonomy in our world and I think as long as they've heard their options and they decide to do nothing, that is not the worst thing in the world.
[00:24:46] I think things we need to do, we need to We need to not dismiss the patient just because they've chosen to do nothing. Doesn't mean they're not a patient still. We need to watch and see how they're doing in school. These kids have a high degree of depression and anxiety. So we need to make sure that we're not missing the boat on other things going on, that we can support them with.
[00:25:07] And it might be things like support groups, you know? Yeah. They may not be wearing technology, but maybe they'd benefit from meeting a peer who also has single-sided deafness to say whether it's an older peer that has been successful to say, how have you navigated the world? You know, what kinds of things, peers meeting peers has always been a win.
[00:25:27] You know, the biggest deficit that I always Personally is that I personally do not have hearing loss. So while I've read and read and read and I listen and all of these things, I truly don't. And you know, it's like saying a, guy's supposed to know what it feels like to have a baby. Well, good luck. You know, I mean, you can only do so much research.
[00:25:49] You really don't have an idea, but the peers know what the peers need. And there's something to be said for a support system that they can bank on. The one caveat, I would say the only one that probably as far as we know right now that does have a time. Limit on it is if someone is born with single-sided deafness and they don't, and the parents say, you know, they're doing okay, they're in speech, they're meeting their milestones.
[00:26:15] We're going to wait for them to have this decision as an adult. Well, that decision may not exist as an adult. And that's the one thing that is really hard for parents to understand. They're like, well, it's the same anatomy. It's the same brain. They have access to sound on the other side. The literature just doesn't seem to support that.
[00:26:35] Giving them access to sound when they're 10 plus years into a journey is going to be successful. But there are lots of caveats to that. We don't know if it's because they don't have therapy to match it. We don't know if it's because the commitment is not there. We don't know. We think that there is basically a.
[00:26:54] Neuro-plasticity that goes away why that would go away when they have access on one side, don't know, but that's just the data that we have. So I would say that's going to be an evolution. Hmm.
[00:27:07] Carrie: Interesting. So there's. I guess one of the questions that I wanted to throw out at you is that, is there anything that I didn't ask you that
[00:27:18] Carrie: I should've asked you about unilateral hearing loss and what, you know
[00:27:24] Anita: gosh, I think.
[00:27:26] You know, how do we create more awareness among our peers is what I'd say. I think, you know, we are an informed clientele, probably the people listening to this podcast, me and you. This is what we do on a daily basis, but how do we continue to keep the conversation going? How do we make sure our primary care providers know that this is an issue that their parents and patients deserve a conversation?
[00:27:55] How do we make sure general audiologists who haven't been in the CI world are made aware of that the conversation has changed. So people who are struggling past their hearing aid really should have that conversation to the next level. I think that's a nice thing about this. You know, getting the awareness out and continuing to have an open candid conversation is important because there are way too many patients that come to see me that say You know, we didn't even know this option existed and that's crazy to me that they wouldn't, but why would they, if they're not in the right circles in the right place?
[00:28:32] The other thing is a whole cohort of patients who come to talk about an implant because their insurance won't pay for hearing aid. Well, that's a whole different can of worms and probably its own podcast. But, you know, I would say that there there's some legislature going through to hopefully change some of that.
[00:28:50] To me personally, it's very exciting. It breaks my heart. When I see people come through and I think to myself, gosh, all you just need is a good hearing aid. And we have good hearing aids that you haven't reached the level that you should be talking to an implant surgeon, and that's no fault of theirs, but the reality is they figure, Hey, this is paid for that one.
[00:29:11] Isn't so I'm just going to go for the one that's paid for. And that’s Crazy to me. And I think more of the conversation to make that happen will be helpful to pay. That's my view anyway. No,
[00:29:23] Carrie: I think that's good. And I think what you had said previously, too, when I asked you about, you know, when a patient decides not to do anything, to keep them informed, because our conversation today is going to look really different in a year from now or five years from now, 10 years from now, when we have more data and research and evidence of what is supporting.
[00:29:47] Anita: Absolutely. I mean, the reality is when you think about medicine and the evolution implants have really only been around since the eighties, that is not a long time and we've come leaps and bounds ahead since the eighties, but obviously there's a lot more we need to know. So, you know, sometimes when people talk about, well five-year 10 year, well, it's only been since the eighties, we don't actually know the answers to a lot of these questions.
[00:30:16] So I think, you know, within our industry, a lot of people are talking about more standardized testing so we can report things more transparently among the companies. I think all of that is needed, but hopefully we'll continue to come forward because our consumers are Need transparency to help make better decisions.
[00:30:38] And right now, as you know, Carrie, if you send them out on the web, it is a Smorgasbord of stuff that it is going to come away with. I mean, Dr. Google is sometimes a tough place to be. And you know, we, we need to guide that conversation. I think a bit better. Right.
[00:30:53] Carrie: Yeah. We have come a long way. When you think about our conversation about unilateral hearing loss in the seventies was like, we, we don't do anything about it.
[00:31:04] And then with the eighties and more research, but again, I think we still have a long way to go in educating just the general public on the impact, but also I have families and patients who are experiencing that firsthand.
[00:31:20] Anita: Absolutely. And you know, when some of the, my primary care colleagues have said to me, things like, oh my, my patients like that are very quiet and I enjoy them.
[00:31:32] And, you know, with masking things have been particularly hard for anyone who has any level of a hearing issue, really. I mean, you'd never realize how much you lip read, even as a normal hearing person, how much you use facial cues until they're all gone away. And so. I just think we need to continue to be cognizant and we need to fight for our people.
[00:31:57] I had someone say to me recently, oh, I thought all people who are deaf and hard of hearing knew sign language and, you know, You hear things like this and you just realize, okay, we need to do a better job educating our own peers and our community because someone who's in my circle should never think that.
[00:32:17] Then I haven't talked about it enough or created aware enough awareness enough because that's clearly not the case.
[00:32:25] Carrie: Right. Yeah. And I guess masking there is a silver lining and the fact that like what you just said, individuals with typical hearing are seeing the impact of degraded speech, and hopefully it helps other individuals put themselves in the shoes of those who actually do have mild unilateral or any degree of hearing loss.
[00:32:51] Anita: I hope so. I hope so. We are much more and more very I guess this is a philosophical discussion as selfish and self-centered world. And it's hard to think about how much people are struggling around us, but man, people are. Really, really struggling. I mean, people have changed their lifestyle completely because of masking.
[00:33:11] Not because they wanted to, but because they had to, because it was miserable for them to do things as simple as going to the grocery store or, you know, certainly going out to dinner was a disaster. Because they couldn't, they felt dumb because they had to keep repeating themselves and they didn't understand what the menu was.
[00:33:29] you know, all kinds of things that just really are, are, are unfortunate and shouldn't happen. You know, I have people who are scared about their jobs because they have single-sided hearing loss and with masking, they're like, oh, their colleagues are mad at them because the colleague is sitting on the wrong side and they're afraid to advocate for themselves.
[00:33:50] So, you know, we just need to continue to encourage the conversation. That's really, really important. I think.
[00:33:58] Carrie: I think you're right. And I think that's a great way to end is that we need to continue to encourage the conversation and we'll have to have another conversation in the future because I'm sure what we talked about today is going to be updated in some way or form with research and, and new information.
[00:34:16] If anyone would like to get ahold of you, how could they do this.
[00:34:21] Anita: Well, they can always email me. My full, my email is an [email protected], a J E Y a K U M a R. Ed mercy.com. I respond really well to emails. You can call my office and I will have to get back to you on that number. I was doing good on the email.
[00:34:40] You can
[00:34:40] Carrie: I can put that information in the show notes, and then people will be able to click on your email. The that way. And if you have a website with mostly, I can, I can link that up to the show notes as well, but I just want to thank you for taking the time and being a part of the empowEAR Audiology conversation.
[00:34:59] Anita: Well, Carrie, it was an honor. Thank you for having me really enjoyed our conversation as I always do. So hopefully this is useful to others and yeah. Please email or call us. We are here to help. I think. You're not alone in this. And that's just important to remember.
[00:35:17] Carrie: All right. Thank you listeners.
[00:35:20] Announcer: This has been a production of the 3C Digital Media Network.

Episode 29: empowEAR Audiology - Valli Gideons

  [00:00:00] Announcer: Welcome to Episode 29 of empowEAR Audiology with Dr. Carrie Spangler.
[00:00:16] Carrie: Welcome to the empowEAR Audiology Podcast, which is part of the 3C Digital Media Network. My name is Dr. Carrie Spangler, and I am your host. I am a passionate audiologist with a lifelong journey of living with hearing challenges and this vibrant hearing world. This podcast is for professionals, parents, individuals, with hearing challenges and those who want to be inspired.
[00:00:45] Thank you for listening, and I hope you will subscribe, invite others to listen and leave me a positive review. I also wanted to invite all of you to visit and engage in the conversation on the empowEAR Audiology Facebook group. Transcripts for each episode can be found at www dot 3, the number three, C digital media network dot com under the empowEAR podcast tab.
[00:01:18] Now let's get started with today's episode. Welcome everyone to the empowEAR Audiology Podcast. I am really excited today. I have a special guest with me and her name is Valli Gideons. And I have been following Valli on her social media for some time. And I said to myself, I need to get her on the empowEAR Audiology Podcast because I really feel like she's a.
[00:01:46] You're real. You're down to earth. You're insightful. You are a mom who is raising two teenage children who also have cochlear implants. So I'm just kind of investigating some of you. And I found out that you have over 800,000 people. Following you and your Facebook page and you also a manager and several other Facebook pages and groups.
[00:02:12] So a little bit about Valli. And if I'm her web page is that she has a webpage called My Battle Call and I am excited to learn more about that today. She is a military bride who writes about navigating through the fog of. Okay, this is with cochlear implants and other things from the heart. And I have just loved reading everything about you and your blog and following you on Facebook.
[00:02:42] And I'm really excited to start this podcast today. So welcome Valli. 
[00:02:47] Valli: Thank you so much for having me I'm happy to be here. Well, I 
[00:02:51] Carrie: think we're going to have a lot in common from maybe a couple of different angles, and I'm really excited for you to share more with our listeners today. So I know you have given much passion.
[00:03:05] And I, you say a sliver of hope to others. I think it's much more than a sliver of hope. But would you Just share with our listeners a little bit about your story and how you got started your kids and that kind of thing. 
[00:03:22] Valli: Oh my gosh. I, you know, this one is really hard to succinctly state because where do you begin?
[00:03:30] So just as far as how hearing loss came into our world, I can start there by telling you that we had no family history. And my son was born and failed. I hate that word, but failed the infant here, hearing screen. So we were they followed up with the two week, two weeks later with the ABR. And we went into that appointment, literally thinking we'd just be told.
[00:03:59] Yep. All good. And that is not what we were told. We were brought into the room. I've described this so many times. My mom's like, Val, you need a new story, but it's true. It's the room you don't want to be invited into. I just can't put it any other way. And the doctor came in and said he failed. He'll probably go to mainstream high school.
[00:04:17] Maybe cochlear implants, hearing aids and many questions. Well, my husband and I were like, You know, literally in shock. So needless to say we changed clinics because we did learn early on if it didn't feel right, it probably wasn't. So we ended up at a clinic where they were fabulous and we felt supported and heard and empathized with and all the things.
[00:04:43] So that was kind of what. We had to roll our sleeves up and literally learn what is hearing loss. And my son is 16 and a half, so we couldn't go on a Facebook group for all of you young ins out there. There was no Facebook. I mean, barely, I don't even know if we could go. If you could Google a thing, you were waiting for your dial up internet.
[00:05:09] I mean, I, so finding support was really hard. And so that brings me to all these years later, I created a space and a place for people. That is what I wished would have been available when my son was identified with hearing loss. And then 21, 1 months later, my daughter was also born and has the same syndrome to 25% chance of also having hearing loss.
[00:05:37] And she. Also has it, so we're, we're a hundred percent, we're two for two. So that's kind of how the 
[00:05:47] Carrie: 16 and a half and for 
[00:05:48] Valli: what she did, she just turned 15
[00:05:49] Carrie: 15. Okay. I said to two wild teenagers and has 
[00:05:55] Valli: said, yes, they're a freshman and a sophomore. So I have both my babies in high school this year. 
[00:06:02] Carrie: Oh, wow. Well, that's at least they're both at the same school now, right?
[00:06:07] Valli: Yes. And my son is driving them to school. Oh 
[00:06:11] Carrie: yes. So when did, so you found out about your son right from the get go and obviously, probably your daughter since then with the family history  in the newborn hearing screening. At what point did you. Can you share a little bit about intervention and when you decided to go down the cochlear implant route, 
[00:06:34] Valli: so I'm going, I have to kind of piece it together because it's now so long ago.
[00:06:41] So I think there's probably lots of details missed in how we did have early interventionists from the state and city or county. We found an amazing audiologist. Who referred us to an amazing auditory verbal therapist. He got fitted with his hearing aids at three months of age. And so we started down that route to see how he would do, but also he has enlarged vestibular aqueducts.
[00:07:13] So we knew there would be fluctuations in the hearing. So it was a lots of retesting getting him conditioned behaviorally, which he's a champion. I mean, the, my, both my kids are so accurate. Their audiologist is like always kind of amazed by how accurate the information is. They give anyways. So because of that fluctuation in his right ear, it was a deteriorating pretty quickly.
[00:07:43] And so we came to the decision to get the cochlear implant on that, that time they weren't doing bilateral. And we still didn't know what would happen with his left ear. And I think somewhere in there was a sliver in us, hoping it wouldn't deteriorate. Which looking back, that's kind of funny because it's, it is going to deteriorate.
[00:08:04] It's just a matter of when. So we went ahead with the cochlear implant on his right side. Just so that we would no longer have to be worrying about whether he was getting access or not. And we came to it with nobody telling us to do it, but a lot of people guiding us with good sound information.
[00:08:26] Carrie: Okay. So he was how old, when he got his first implant then? 
[00:08:30] Valli: I think he, it was 14 months. 
[00:08:33] Carrie: Okay. So yeah, you've been on this cochlear implant journey for a while. And then what about your daughter? When did she get her first one? So 
[00:08:42] Valli: her hearing loss was not as severe when she was born. So she did get a lot more information and use out of her hearing aids.
[00:08:49] And we kept watching to see what the shift was going to be. And we did made the decision when she was 18 months old. She got. Her cochlear implant. So she's doing a ladder. She only has one she's. What do you call when it's implant hearing aid? Bi-modal bi-modal I always get the terms mixed up. She's bi-modal and we ended up getting his second implant when he was in kindergarten.
[00:09:14] Okay. So he calls that his baby ear, his infant year, and he still prefers just to wear his right implant only even though we make him wear both when he actually really needs to hear I shouldn't say make him put, put people off. We don't, we, he knows when he really needs to hear, he wears them both, but around the house, he is leaning towards.
[00:09:38] Wanting to just use the right ear. It's really interesting. Yeah. 
[00:09:42] Carrie: I've heard that a lot from different kids, especially when the time is a little bit different. In between set the 14 months to the five years your has not caught up to as mature ear yet 
[00:09:55] Valli: says he can't really explain why. Because he does know he gets a lot more access with both.
[00:10:03] He knows that. Cause when it really counts, he wants them both. But so it's, it's, it's really interesting. 
[00:10:11] Carrie: Yeah. And every listener, a little bit different with a whole cochlear implant journey. So one thing I wanted to ask you is you talked about your experience of not having a good experience and the initial kind of diagnosis and getting that information and then finding someone that you knew in your heart that didn't feel right there and finding someone else.
[00:10:39] Do you have any advice for like parents or I would say even audiologists out there. Really prompted you as a parent to explore something else and then feel, I guess, at home somewhere else. 
[00:10:54] Valli: Well, I think my biggest piece of advice I like to give parents is always trust your gut and your intuition is usually almost always right.
[00:11:04] And I don't know why we think when it comes to dealing with hearing loss and people in that expertise that we're not allowed to get a second opinion, third opinion, or. If you don't like your, the haircut you get, you have no problem with going to a new hairdresser. So if you're not okay with somebody's bedside manner, or you're not sure about the information they're giving you, or you just don't feel like it's the right fit, get another opinion or try something new with we've had to do it with auditory verbal therapist, because that relationship so important.
[00:11:42] And we just I think we didn't know anything about hearing loss, but we did know what right would feel like. And we know it didn't feel right. There was no empathy. I mean, none. And that's what I would tell audiologists. And I've spoke to classrooms of budding audiologists and that relationship is so important.
[00:12:05] I mean, our audiologist is Mo the most important person to me. She has been. So much so that we traveled we're military family. And when we were living 3000 miles away and we, I would still load my children up on a plane and fly cross country for her to do their mapping for their implant, because I just trusted her.
[00:12:25] And our rapport was just that good. And one thing that she does that I highly recommend for audiologists or anyone working with kids is she spoke to them. When they're in the room, she doesn't talk at them or about them. She talks to them and it's, they really love her. And I think part of it is because she really does make them feel seen and she makes their input.
[00:12:56] It's valuable to her, not just mom, sitting there doing all the talking for the kids. So. For anybody who's studying to go into this line of work. I think if you can look right at that child and ask them the questions that's so important, 
[00:13:13] Carrie: and it also empowers that child, but as well to take leadership of their own hearing and hearing journey and know that they're just as part of the process as anybody else in the little village.
[00:13:27] Valli: Right. So. Sometimes I'm telling you we're in, I love going to audiology appointments now, which is so funny because when the kids were little, they were excruciating because, you know, you're just trying to get it out. Especially when you're traveling across country, you're trying to make sure everyone's rested and fed and ready to attend.
[00:13:45] And, you know, I've got the fish crackers in the pocket doing the bribes for ice cream after and the whole thing. But now, I mean, we make it like a field trip and I just enjoy listening to what the kids have to say. When it comes to their hearing or anything else, but they can articulate things that I would have no way of articulating.
[00:14:07] Like I, and their audiologist is so proud of them. She was like, that is so well stated. I know exactly what you're trying to convey. So it's really powerful for kids to establish that kind of ownership of theirdevices and they're hearing. 
[00:14:26] Carrie: Yeah. Which kind of brings me to my next question. I think that's amazing.
[00:14:30] And like to develop those types of skills and to really listen to what I have to say. And I always tried to do that as an educational audiologist, talking to the students that I work with because they do, they have so much insight into the everyday life that nobody else is going to have because they're not sitting in those shoes every day.
[00:14:52] But you developed My Battle Call. And I am assuming that has a lot to do with a lot of the experiences that you as a mom, as a family have, but also continuing that with everything that your kids have to say about their own journey and kind of incorporating that. But can you just share a little bit about My Battle Call and how you came up with it and then name as well?
[00:15:18] Valli: I'll start backwards. The name is my son's name is Battle. Okay. And my husband's in the military, so we're a military family. So, and
[00:15:33] being a hearing loss advocate and parent of children who have hearing loss just became really my. Passion or purpose. So it just My Battle Call just seem to just sum it all up. And the first essay I ever wrote about it said I studied journalism in college and I was a writer. So writing was not something I was new to.
[00:15:58] However, I, once I had kids, I'd kind of transitioned and stopped doing that as a career. And I was on a girls weekend with my two best friends and they asked me how come I never write anymore? And why don't I return to writing? And I'm like, well, I don't really even know what I would write about. And they're like, are you kidding me?
[00:16:21] So that kind of set planted the seed. And I, my first essay I wrote in this genre was after my son had accomplished like a little bit of a milestone and my husband and I kind of just threw it away. Like took it for granted. I was like, this is sad. Like we need to remember how far we've come. So I wrote about it, so I wouldn't forget.
[00:16:53] And that was the first piece I published. When I finally decided to just put it out there into the world and then. And my profession I've worked for the YMCA as a director and as a writer, I've always just kind of let things happen organically and not been too stuck in a box and said the platform grew into something completely organic and it's everything I.
[00:17:20] Could I could have never hoped or dreamed for it to be what it is. Just what a privilege to get, to have these connections with other parents and professionals and people that had I not hit publish. Never have met and then gone on to write. I think you've know about the book that my daughter and I wrote together.
[00:17:42] I mean, I would've 
[00:17:43] Carrie: never guessed. 
[00:17:45] Valli: Oh, yay. Yes. Oh, right. That's right. That's awesome. So anyways, that, that was the long answer to the, the question is it's just really a place that I wished would have been available when we had our kids. And then also I don't sugar coat. Yeah. And I think 
[00:18:06] Carrie: that's so important for parents to have that information because a lot of times, well, first of all, I love that you write aboutit right away.
[00:18:15] Like it's kind of authentic. It's fresh in your mind. And it's real because I think like you said, if you wait longer than. It's not as fresh or I don't know the emotion, isn't always there as much unless you do it kind of as you're going along in the moment. So I do appreciate you sharing that way and I'm sure other parents really appreciate hearing what you have to say.
[00:18:43] So I thought we would I love reading your posts just for that reason, because I think they are authentic and encouraging. Informative as a professional. And then also as someone that also has a cochlear implant and a hearing aid too, it's thought provoking to hear. But your kids have to say too, but I thought we would go deeper into a couple of your recent posts if that's okay with you, for our audience.
[00:19:14] So the one, and I'm going to read some of it just so that I don't get it. Quote anything, but the first one I'd love to go deeper. And it's something that you posted August 5th which really prompted me to kind of reach out to you and the, and the post to explain that someone had commented on one of your heartfelt post and said that you really should drop the last part of the term hearing loss and instead add deaf gain into that.
[00:19:42] So I thought I would just ask Ask you what you thought about that or how you can kind of expand a little bit more on that? 
[00:19:53] Valli: Ooh, well, one thing you realize right away when you write on the internet is you have to get thick skin and really take the personal out of it. Because when I was a writer for a magazine and a newspaper, If someone had a complaint, it was a letter to the editor.
[00:20:19] I mean, this is, that is a lot different. Right. But it did make it, so you didn't have a relationship with your audience either. So I much prefer this format that we can, I can get to know the people who are reading my work, but I just have decided I will give people the benefit of the doubt. Until they show me that they aren't willing to think of things in a different way, or maybe they were missing.
[00:20:53] They didn't mean what they wrote or they used different words. So I just kind of reached back out to that commenter and just nicely asked her to really think about what she's saying and how it. Make the writer feel and other parents reading it, he was, it ended up being fine. I think there was a, more of a mutual respect that I was willing to give her grace, but then I also have very little patience for people dropping rude comments on someone's page for the sake of just.
[00:21:40] Causing controversy or just spreading mean rude things. So I wrote about her and I wouldn't want to call her out specifically cause I've gotten other comments that are equally strange to me, but I realized it was really about her pain and not feeling seen as somebody who was deaf. And I have so much empathy for that, but I'm the truth is I'm telling our story and I'm actually telling my story as the mother ma this is not my kid's story either.
[00:22:23] I can't, I don't tell their stories. I tell it from my point of view, I did not. Their stories are not mine to tell, and that's a real fine line. And I see other people try to jump into this. Platform really speaking for their kids. And I think you have to remember, they're going to read this. Mine do read it now.
[00:22:43] The lot. I eye-rolling a lot. Oh my gosh. My daughter and I are somehow connected on our phones as a family sharing where our photos and she's like, mom, all your PR. She just said this to me yesterday. All your ridiculous memes And she was mocking me no. And encouraged. I was like, well, too bad. So sad.
[00:23:09] They're not for you. 
[00:23:12] Carrie: Oh, well I obviously that posts. You know, responded to garnered like 550 likes. I think it was for that comment. And you had like 120 different comments and lots of shares. So it really, I think struck a chord with a lot of people. And really, like you said, it was an opportunity to have some grace, but open up a conversation.
[00:23:38] And you know about that. And I think that's something that. And I don't know if it's just because of everything else that we talk about with diversity and inclusion, that's happening more on a global level. And then it trickles kind of took us down to our little community of deaf and hard of hearing or, you know, individuals with hearing loss.
[00:24:02] I don't know whatever you want to call yourself, but. I've had that comment, you know, to me too. And I was kind of had the same reaction. It was like, this is me. This is what I have chosen to say about myself and why I don't need someone else I don't even know who you are commenting about how I decide to identify.
[00:24:30] And I think that's why your post really struck a chord with me is because I had personally experienced that as well. 
[00:24:39] Valli: Yeah, I think it's well, that's why it got so much engagement because people related and I think it's a lot of hearing parents feel a lot of judgement. And shame. And on my page, I don't tolerate it.
[00:24:58] So I will delete comments or ban ban somebody who's just being hateful and, and shame shaming another parent for the choices they've made, because then. That's not creating a space where people feel supported and have sense of belonging. And I could try to keep reiterating that are each one of us, our stories are unique and valuable and let's learn from one another.
[00:25:27] We don't even have to agree. Like I have changed. I've gotten more involved in collaborating with people in the disability sphere and I've learned so much. Like I've taken the  the word special needs parenting special needs out of my vocabulary, just from what I've learned by listening. And that's what feels right for me.
[00:25:53] Now. I wouldn't go onto somebody else's page and comment rudely, why they shouldn't use the term special needs. I might have a private conversation. Hey, have you ever thought of it this way? Or this is something I learned, but I. You know,
[00:26:12] it what's the goal, you know, what is the goal to make people feel supported and encouraged, and you're never going to change hearts and minds by shaming and judging period. 
[00:26:23] Carrie: Right. And I think your comment about being open and changing and talking to other people is, is important because over time when, if you think about, you know, 20 years ago, our vocabulary was much different than it is today.
[00:26:40] And just like you said, being open to new terminology and how we identify. Is is always going to be something, but again, what feels right for you is also important 
[00:26:55] Valli: Right. And the other thing is I take my, I follow my kids lead, so I that's the term they use. And if I say I asked them, what would you say if instead we called you deaf gain?
[00:27:10] They are like, what? Like that. This is them saying that would just be weird. Like they are not, I think it's generational. Perhaps they are not easily offended either. They really aren't. They, if somebody says, what are you deaf or something, they go actually, Where, if I heard someone say that I might go, Hey, that's very insensitive.
[00:27:38] Or you might want to consider your audience, but the, my kids are like, yeah, I actually am. And they, I mean, they, it doesn't do anything to their feelings of self. And so I don't know. We're not over. I don't think we've gotten to a place where we're too sensitive, but I think you have to listen to the person who has the disability and follow their lead.
[00:28:05] Carrie: Yeah, no, I agree. 
[00:28:08] Valli: Even using that word, I'm starting to get okay with it because my kids say it is a disability mom. They use it, but a lot of people don’t consider hearing loss of disability. And they're like, well, without accommodations, we can't go to school. And so anyway, they have their feelings about 
[00:28:33] Carrie: you.
[00:28:33] Can't get, you know, IEP services and different things like that. So it's definitely something I would say for me. And this is just me talking, I would say yes, I do have. Disability. I'm the only person in my family that has hearing loss. It's not something that is part of like our culture, I guess. And I I've I've family.
[00:28:59] This is just how I grew up. And however, I don't feel like my disability has  limited me, but like what you said I need accommodations and supports in order to navigate through my daily everyday life. 
[00:29:16] Valli: Yeah. That is well said, and maybe there's other people. I know there's other people who feel differently and that's okay too.
[00:29:26] It is. 
[00:29:27] Carrie: So that's why we're all 
[00:29:28] Valli: unique. There's no one size fits all. That's the tagline on my website. 
[00:29:34] Carrie: There you go. That's a great tagline. So what just thinking about parents and a lot of your follower, both are parents. What nuggets of advice would you share today for parents who are on this journey? 
[00:29:49] Valli: Well, I think I touched on trusting your gut.
[00:29:55] And then the other thing that I think is one of the main messages in the book that my daughter and I wrote is. For your child set the bar high because that's what they're going to reach for. That was advice we got early on, early on when my son was still a baby in this amazing auditory verbal therapist.
[00:30:25] He's legendary. I won't name his name, but he told us that right away and it just stuck like. You know, the sky is the limit. Doesn't mean there won't be challenges and they won't be times where, you know, it's really hard. There's times. I want to just cry for my kids when I just, you know, they come across some experience.
[00:30:49] That's just so hard, but I've, we've never told them there's anything they can't do and they believe it. So that's the biggest nugget is. Your kids are going to believe what you tell them and what you show them. 
[00:31:10] Carrie: Yeah. And the parents are the greatest example. So this is just a question for you. So has anyone outside of your family ever told you kids?
[00:31:21] They can't do something. And how did they respond? 
[00:31:26] Valli: Oh, I don't know. I think so. I don't think so. I mean, our family and extended family I'll tell you, a lot of them have learned a lot about our family by reading my work. I've even had some very close friends who said I had no idea how hard those early days were the early years.
[00:31:56] Well, when we were, I told you military, so we were living remote. A lot of the time, not near good family or good friends and family. So one specific instance, I just republished it for deaf awareness month was how, when people use the word, nevermind makes someone who has hearing loss feel. It's probably one of the most powerful pieces I write and reshare I'll ask readers how it makes them feel, and then I'll edit it to add new comments.
[00:32:35] But my sister who I love and who loves my kids has always just treated them amazingly, read that. When I originally posted it and she, she called me and said, I am so sorry. I'm like, what she's. She said, when you're, when Battle, sometimes doesn't hear me. I'll just say nevermind, like instead of just repeating it, and I'd never thought about how that might make him feel.
[00:33:06] Okay, well, there you go. You know, better, you do better. And that's why I write it and publish it because it might just reach somebody who didn't have any idea that certain things and behaviors they had were hurt could be hurtful. 
[00:33:23] Carrie: Yeah. I don't like that comment at all. And of course 
[00:33:26] you 
[00:33:27] Valli: go universal. I think it's universal hearing people don't like that.
[00:33:35] So I can only imagine, well, I can imagine cause people keep telling me how it, so isolating and makes you feel not important and frustrating and makes you want to you know, my son would say when he's in a group conversation after the third, fourth, fifth time, he's had to ask for. Clarification, he just forget it.
[00:34:02] Like, so if you have people who are more conscientious and just willing to just repeat it, then rephrase it if necessary or turn your body, get where they can see your lips. Turn off the background radio. That's blaring. One of my daughter's friends. If she reads my she reads my blog. She was taking my daughter somewhere and she said, I made sure to turn off the radio when we were driving.
[00:34:33] And just so she'd be able to follow along the conversation easier. And I'm like, thank you so much. Like how thoughtful that you put in because maybe the other girls wanted to hear the music. But anyway, it's just, I think understanding is key. 
[00:34:51] Carrie: It definitely is. So what about some advice for audiologists or SLPs or teacher of the deaf or anybody else that works with children who are deaf and hard of hearing?
[00:35:05] What would you want them to know? Nuggets of advice? I know you shared some, but what do you have any others?
[00:35:16] Valli: Well, I think the setting of the bar high is good one. And I think celebrating successes is pretty key. We had one therapist that we left because every session she would report to me, all the things Harper wasn't doing. And my, I brought my mom with me. And when we left. The session. My mom's like, I just don't understand why look at all the things Harper is doing.
[00:35:53] She didn't point one of them out. And I said, that's why I leave here defeated. She's like, there was not one bit of encouragement. So again, you're not lying to the parent or the child, you know, you can always have things you're working on, but not. You've just got to point out things that are, people are doing well, successes to keep being, feeling encouraged because also for professionals, particularly if you don't have a child who has hearing loss, don't pretend like, you know what it's like?
[00:36:37] And I had the same therapist would do this to me. She had kids about the same age as mine and she acted like it was just the same. And like, it's not, it's, it's very different for you to spend one hour with my child then to  to be that child's parent. So don't,
[00:37:01] don't presume to know, learn and empathize, but don't presume to know because you're an expert. That you know what it's like to actually parent the child.  That’s really good advice
[00:37:17] Yeah. It's tricky because you do know, you all know a lot, but 
[00:37:24] Carrie: right. We don't live. Yeah. We don't live your life. And when I in your house, 24 7. So 
[00:37:33] Valli: yeah, I had a note. We had another therapist we were going to for OT. And what I appreciated about her so much is if I had run into like a roadblock somewhere with like something behavioral that was related to the vestibular sensory issue, she would give me strategies and like, literally look me in the eyes and go, it's going to be okay, let's try this strategy.
[00:38:01] And I'll be darn if we couldn't end up finding things that would work. Sometimes it took a couple of different techniques or tactics, but that having somebody that's like an ally and a resource was lifesaving for me. 
[00:38:18] Carrie: No, that sounds like having those different strategies and supports and being able to, as a parent, go home and try and navigate and see what works for your own child.
[00:38:29] 'cause you never know what I wanted to also ask you a little bit more and you've kind of mentioned it about your most recent endeavor of publishing a book with Harper. Can you share a little bit more about that? 
[00:38:45] Valli: I can talk about this book all day if you want. I am so proud of it. It's been one of the most meaningful experiences of my life.
[00:38:55] We published. Ironically, February, 2020. 
[00:39:00] Carrie: So right before the show shut down, 
[00:39:03] Valli: we had ones, we got, we went to one school visit to do a read aloud, and then all our whole book tour got canceled. It was kind of a, but we did switch right on to zoom doing lots of zoom, readings and presentations. But anyways, so the book, how it came to fruition is.
[00:39:24] Rather than me writing my own book. I, my daughter came home from fourth grade and unpacked her backpack at the last day of school. And I pulled out her writing journal from school and they had done a daily prompt and I just got mesmerized by this journal. She's a really good writer and just reading through it.
[00:39:46] And I came across an essay. One of the prompts was said, what's something that makes you unique. And she wrote that how she was unique because she was deaf. And part of why she played basketball was to show other kids hearing or not that anything is possible and how to help other kids who might have challenges feel encouraged.
[00:40:08] And I mean, it was just this, well, here's the book Harper, this is a book. It's not my story to your stories, the book. And so we started, she didn't really believe me if you interview her, it's kind of funny. She was like, what? She, she just didn't believe me that we'd really make it into a book. And we started just flushing through the manuscript draft after draft.
[00:40:34] And then we finally hired up illustrator who started putting some of the pictures to the story. And then that's when Harper. Well, it's like, oh my gosh, this is really gonna happen. Yeah. So it was, it's pretty special. It's so it's encouraging. It's funny. So it's told in her twelve-year-old voice, very witty. It's a lot of words because she is such a reader.
[00:41:05] She wanted it to be something you could reach your small child, but then once your child becomes a reader, They won't grow out of it. Yeah. You know, till I, we, I have a friend who's sixth grade are still reading it and then the back is a glossary of terms. And then real life pictures of the family and the people in the.
[00:41:30] Carrie: I cannot wait to get it. 
[00:41:31] Valli: Yeah, it's fun. It's it's really cute. 
[00:41:35] Carrie: It was called Now Hear This, Harper Soars with her magic Ears. 
[00:41:39] Valli: Oh yes. Thank you. And it's available on Amazon. And also we do signed author copies, all get a shipment of author copies and we can sign those for people so they can just message me. And we write a personal message.
[00:41:54] So I find out I just signed two today. We find out about the child it's four and right. Personal message. Both me and Harper. Right. Like something about the kid. And because Harper had a book that was like that did somebody had personally signed. I mean, to this day, we're never getting rid of this book. So anyway, that's, that's been something really fun.
[00:42:17] Carrie: I think it's amazing because I think kids Of all ages really want to see themselves represented in a book. And so for you and Harper of really her experiences and two words and pictures, other kids are going to be able to relate. And, you know, if you're, I'm just thinking from an educational audiology perspective, to be able to share this with the kids I work with and several kids.
[00:42:47] Prompts different conversations about what might be happening and has this ever happened to you? Whatever happens to be in the story, it's just a whole way for them to have a conversation about their own journey. 
[00:43:02] Valli: Yeah. That's what we wanted kids to see themselves. And we talk about her other deaf and hard of hearing friends.
[00:43:10] You know, might use different some use sign language, some have hearing aids, some have bone conductors, some have a combination and kind of some of the hobbies those kids are into that are different than what her and her brother are into. And so. I agree with you. It's so important for kids to see themselves reflected in what they read and see.
[00:43:31] And when they, my kids were little, there were not a lot of options in books, particularly. So it's fun to see more and more books coming out. We're in the creative part of the next book, because now Battle is going to get his turn. He's not going to write it. Me and Harper are going to write it. Okay. It's going to be about him.
[00:43:52] It's going to be fun. Because he's funny, like it's I wish I could tell you the premise it's real. It's going to be more picture bookish. This is not picture book. This is wordy book as a book is don't be afraid. I only got one bad review. Well, it's not even a bad review, but, but the woman said it's very.
[00:44:11] And Harper said, thank you.
[00:44:16] And we like words. So we, we are happy someone called it wordy, but. Yeah, 
[00:44:23] Carrie: well, obviously like your background in journalism and then your path having two children with cochlear implants really intersected nicely, but,  
[00:44:34] Valli: and did I? It did. And when you're a writer, everybody says, are you going to write a book?
[00:44:40] I even got an, I reached out a literally office agent reached out to me about me writing my own. And I just was like, I'm not really ready to take on that kind of project, a hundred thousand words. Like I don't really have that story in me yet, but this is again organically just, and we really hope it ends up in front.
[00:45:03] People are buying it for their schools, for their libraries. That's we want it on every kid's nightstand. They'll send us the kids, send us pictures with the book. Oh, my gosh, I videos one little. Girl's like my new name is hopper. She's dribbling a basketball cause her foot plays. We talk about basketball in there and she's dribbling.
[00:45:24] Same Mike, call me Harper. Like she sent us a little video. It was so cute. Yeah. 
[00:45:29] Carrie: I bet. Hope I love that too. She, I don't know how she 
[00:45:33] Valli: feels. I think. I don't think she realizes the impact yet. So I think it's going to be even, they have her do the reading at her school to her whole. It was then seventh grade class.
[00:45:49] She was so embarrassed. I mean, in a lot of people at the school, her classmates bought it because they just thought it was so cool that Harper written a book. And then she read some of the lower grades at her school. And I don't think she really gets it yet. Yeah. 
[00:46:06] Carrie: Someday, 
[00:46:08] Valli: someday 
[00:46:08] Carrie: she will. So a couple other questions before we wrap up, but I know you have your website and your social media pages and.
[00:46:21] You have a store too, right? You sell like shirts and other fun things. Could you share a little bit more about your webpage and your store and how people can find you? I have 
[00:46:33] Valli: a store. I love it. Yeah. So I'm My Battle Call on Instagram and Facebook are my two big social platforms. Please come to Facebook people.
[00:46:44] We really. Engaged heavily on Facebook, but then also Instagram, my Instagram is growing. I've met some great people there. And then my website, my store I've created and designed a couple of different shirts. So proud. Cochlear implant, mom, proud hearing aid. Mom. I'm grateful. There's a shirt with the design grateful.
[00:47:08] And then I created a bunch of resource guides. So my biggest one, my favorite, well, I have an ebook that I wrote, it's just a collection of essays. And then I wrote a teacher's guide and it's nine page document with both hearing aid and cochlear implant versions.  And it's a document my kids and I wrote together that we give out to the school stuff every year.
[00:47:35] And so included in it is all the nuances and ways. It's above and beyond an IEP or 5 0 4 plan. It's like the actual humanizing of, you know, shut the windows, closed the doors, turn off the background music like real life, tangible things. Teachers can really. It makes sense to them, the nuances, and then there's a sheet in the back where people can personalize it so that, and then we wrote one the same kind of way for coaches.
[00:48:12] So I highly recommend people. Send this document to their teachers and their coaches way before the first day of practice or the first day of school. So the teachers have time, the coach has time to read it. Then you set up the meeting to go over it, but not on the first day of school and not on the first day of practice.
[00:48:34] We plan ahead because we made this mistake a couple times before I came up with this. Guide you can't grab the coach on the first day of first grade basketball, they have 20 kids there and they're just trying to herd cats it's too much. So you need to make, go the extra mile and make that appointment, or just ask for, you know, 10 minutes of their time to just kind of go over it.
[00:49:03] And they appreciate it so much. 
[00:49:06] Carrie: I'm sure they do. I know that's always a struggle for parents of like, what do I do for, you know, the coaches, especially when it's a parent coach, you know, just things like that, that you didn't even think about that. And you're like, oh, you get to practice. And you're like, oh no.
[00:49:23] Now what? So we have that resources, such a great opportunity for parents to have, and for professionals to have to, in order to share with families. So as we wrap up today, is there anything that I didn't ask you that you want our listeners to know about you? 
[00:49:41] Valli: Oh, well, I am a real, you know, I haven't really put this out there, but because I get approach rather than pitch myself, but I am available to do a speaking and it's something I'm super passionate about and was starting to do kind of regularly before COVID.
[00:50:04] I mean for real. So if you have a parent group or a professional group, students, whatever you need a guest speaker, I'm happy to come and, you know, work with you to in any way to kind of shape the speech for that group. We're always happy to come and either via zoom or in real life, share our book, share our story.
[00:50:28] So I think that's one thing I would like to the people might not know when they see my work, that that's something I'm really passionate about doing so. I think, I think we covered a lot. We 
[00:50:44] Carrie:  We did discover a lot. I think this was a great conversation. I'm so glad that you were willing to come and the empire ear ideology podcast and be a part for our listeners today.
[00:50:55] And I hope that all the listeners, whether you're a parent or you are a professional, will get onto your Facebook and Instagram pages and explore your website so that they can follow you and get all of this great, authentic, real information. Real time experiences that you are. So I guess gracious to put out there so other people can learn.
[00:51:22] So thank you, Valli for being a part of this. I really appreciate it. And I am so excited to put a name and a face together, and I hope that in the future we can actually meet in real life.  
[00:51:35] Valli: I would love that. Thank you so much for having me this was fun
[00:51:39] Carrie: All right. Thank you listeners for being a part of the empowEAR Audiology Podcast.
[00:51:45] Announcer: This has been a production of the 3C Digital Media Network. .

Episode 28: empowEAR Audiology - Dr. Samantha Kesteloot

[00:00:00] Announcer: Welcome to Episode 28 of empowEAR Audiology with Dr. Carrie Spangler.
[00:00:17] Carrie: Welcome to the empowEAR Audiology Podcast, which is part of the 3C Digital Media Network. My name is Dr. Carrie Spangler, and I am your host. I am a passionate audiologist with a lifelong journey of living with hearing challenges in this vibrant hearing world. This podcast is for professionals, parents, individuals with hearing challenges and those who want to be inspired.
[00:00:46] Thank you for listening, and I hope you will subscribe, invite others to listen and leave me a positive review. I also wanted to invite all of you to visit and engage in the conversation on the empowEAR Audiology Facebook group. Transcripts for each episode can be found at www dot 3, the number three, C digital media network dot com under the empowEAR podcast tab.
[00:01:19] Now let's get started with today's episode. Ah, well, good morning everyone. My name is Dr. Carrie Spangler and welcome to the empowerEAR audiology podcast. I am really excited to have this guest today, Dr. Samantha Kesteloot with me and she is currently a full time educational audiologist that Trenton.
[00:01:42] Um, oral program for deaf and hard of hearing in Detroit, Michigan. She graduated from Wayne state university with her AUD, and then prior to completing her AUD, she worked as an audiology assistant for four years. Gaining multiple experiences, working with children who are deaf and hard of hearing.
[00:02:01] Samantha also dedicates her time and talents through volunteer. She has been active. She was active in a doctoral program with a student academy of audiology. She's active with a teen program in Michigan. She's active with Michigan's EHDI family matters conference. She's been active with summer camps for children who are deaf and hard of hearing.
[00:02:25] And she also volunteers with the educational audiology association, Samantha is both a personal and professional journey to share with all of us today. So thank you for joining. 
[00:02:37] Samantha: Thank you for having me. I'm really excited to be on this podcast and, um, just talk about everything and share my journey and, um, yeah.
[00:02:49] Carrie: I always like to ask my guests how we met and that we kind of have a longer history. 
[00:02:56] Samantha: Yeah, well, I think so. I know when I was in Lapeer and I had audiology assistant with Kate Salathiel, we drove down to. Um, oh, gosh, I want to say, is it stuck or where were you at 
[00:03:11] Carrie: Stark county educational service center?
[00:03:13] Samantha: Yes. And then we, we went, we met, we went and got lunch with like some, uh, like Asian place, hibachi place. And then, um, cause we were trying to figure out different ways to accommodate, um, my, having my hearing loss and providing the services for kids and Kate had known of you, I think just from working in the field.
[00:03:32] And so we set up. And we got some good ideas. Um, and that's, that's how I remember meeting you. That's 
[00:03:39] Carrie: how I remember meeting you too. It was, and that was a long time ago because county, but a long time, 
[00:03:48] Samantha: that's probably eight years ago, at least because I mean, in between that time, I had my first year as an audiology assistant and that was out for.
[00:03:56] And then I got my doctorate and that was another four years. I mean, there's a little bit of overlap, so maybe six years, but yeah. Then 
[00:04:04] Carrie: in high school, 
[00:04:07] Samantha: no, I don't think so. No, I was, um, uh, I was definitely grad because I had just graduated from UGA in 2012 ish. So, um, I think, I don't remember being in high school and meeting you.
[00:04:22] Okay. 
[00:04:22] Okay. 
[00:04:23] Carrie: But I know it was at least six. It was probably at least 10 years ago. I mean time flies. So it was a long time ago and you guys had a great little road trip from Michigan and I got to meet you for the first time. So it was great to meet you. And I was so excited. To see someone else with a journey like mine going into the field of audiology.
[00:04:50] So it was a great connection from 
[00:04:52] Samantha: the beginning. I experienced this definitely like kinda, I don't wanna say mimic each other, but they're very, very similar. So that is at its cool to be able to be here on the podcast. But I feel just to work with you and have you as a colleague. 
[00:05:05] Carrie: Yeah. So Samantha, can you just, well, back up a little bit, and could you share a little about your own childhood journey and growing up and your diagnosis and amplification journey and school, things like that.
[00:05:21] Samantha: Absolutely. Um, so I'm actually an identical twin and my sister and I were born, um, pretty poor. We were very premature with three months early. Um, and so, uh, we were given, uh, this ototoxic drug called gentamicin to, um, keep us from going septic basically. Uh, and so that was sort of the cause that they definitely believe that the cause of my hearing loss, but, um, so then I was late identified.
[00:05:49] But when we go, when you're going to preschool, you get the hearing screenings done. And so, um, that's when I, they caught my hearing loss then, so I dropped three and a half to four years old when I was diagnosed and fit with, um, hearing loss. I'm sorry, hearing aids. Um, so I had bilateral, um, like normal.
[00:06:07] Precipitously sloping to profound, um, sensorineural hearing loss. So I had the good, low pitching and then almost like nothing in the highs. Um, and so, yeah, I wear hearing aids my entire life growing up until about, uh, well, 2017. So about five years ago, I got my, um, I got a cochlear implant in my left ear. So, um, it's kind of a, I have a hybrid, so it's a shorter electrode, array that will, um, like replaces the highs.
[00:06:35] And then I have a hearing aid portion for, um, my lower frequencies. Um, so that's kind of my, you know, my device usage and my diagnosis there. Um, in school, I received services from educational audiologist and teacher consultants, uh, for the deaf and hard of hearing. Um, I think I saw education, the educational audiologist about once a year, just for updated testing and then the TC, like once to twice a month.
[00:07:02] Um, and then that tapered off as I got older, um, when there wasn't as much of a need for, um, TC services. Uh, um, but I definitely, um, Hm. I don't know where to stay. I usually FM system that you've preferential seating, um, captured if they were available note-takers in college. Um, and those types of things, um, let's see.
[00:07:30] So those are the kind of the technical things. Um, what it's like emotionally in school too. Um, I definitely think that, um, there were lower expectations of students who had hearing loss. Um, but I, my, I had an identical twin. My parents always made, like, expecting me to do this. Like. on Target with her. And, um, so I think that that was a huge reason why I, a quote, unquote, successful person with hearing loss.
[00:07:58] I think that everybody can, but, um, you know, just in terms of kind of shadowing those lower expectations for kids, with Hearing loss, at least in my district and in my experience from what that seemed like, um, my mom was also really involved. Um, once she was. You know that I needed services and those kinds of things, she really fought for me to get the most.
[00:08:20] And so I, um, uh, I was actually, uh, put into a special education classroom, like preschool And then, um, then it was mainstream from kindergarten onward. Um, in high school, I, uh, you know, I was, I wasn't, I was a cheerleader. I just didn't count. So I was in class council, so I took on a lot of leadership roles and, um, those kinds of things.
[00:08:44] So I was also. You know, very involved. And that is, I think, a stereotype that a lot of people with hearing loss get, I thought you can't be a leader. You can't be involved in sports and, um, those kinds of things, but you just have to find a way around that. Um, and, and, you know, kind of accommodate for what you need.
[00:09:07] Carrie: What about friends? How was that? Did you tell you them about your hearing loss 
[00:09:14] Samantha: that. I've always been like a social butterfly. Um, but I feel like a lot of that, a lot of hours. Um, yeah, because, uh, growing up with hearing loss, I get pretty isolated. So I think that like you would just kind of, I would just kind of get to know anybody that I could get to know.
[00:09:32] And I mean, maybe it wasn't like the deepest relationship or whatever, but, um, I knew a lot of people, um, cause I really wanted to like try to fit in and all of those things. Um, but. I think socially, I had a lot of reliance on my twin sister, uh, to like interpret situations and those kinds of things. And then, um, sometimes I could just come to the point where you just can't keep up.
[00:09:55] And so you just sort of like retract back. Um, but I definitely think that that is something that. Always kind of been a problem. I just have a feeling of isolation and a left outness. Um, I don't know. I don't know if it's a problem, but I mean, it was always like a struggle or something that, um, just stopped.
[00:10:16] I, somebody who like I'm, my nature is very social. Like to feel like I couldn't be. Um, so I want it to be with always like, 
[00:10:25] Carrie: Yeah. Yeah, no, I could relate a hundred percent to that as well, because I feel like I was always the 
[00:10:33] Samantha: social butterfly. Definitely. Um, yeah, it's just something that always just will always carry through, but I definitely feel like I'm getting my implant has helped me like realize that and like be able to be that person we want it to be.
[00:10:48] So that's kind of like cool that the technology is able to do that. Um, and then I had the option, an opportunity to do that. 
[00:10:57] Carrie: Right. So your next, I guess, um, a step after high school was applying to college. And so how did that go? And, and how did you pick a major. 
[00:11:11] Samantha: Oh, gosh. Um, okay. So in high school, I always like, I, um, I first wanted to go into fashion, but then I quickly realized that that wasn't for me and my teacher consultant.
[00:11:23] So I actually, my teachers consultant from elementary school who her name is Shannon Williams and she, I mean, Uh, like give her so much credit for, um, the self-advocacy skills that I have and just like everything. Um, she just did so much for me when I was young and struggling and everything like that.
[00:11:42] Um, but I came full circle because when I was a senior in high school, she came into my district. And so she was like, why don't you do. Uh, junior, I should say, uh, why don't you work with kids who have hearing loss? And then that just was like, duh. And so ever since high school, I've always knew that I wanted to work with kids who had hearing loss.
[00:12:00] And, um, initially I was like, oh, I'll be like a psychologist or a therapist who works with, um, kids with hearing loss. I drive away and I. I actually started a CMSD at the University of Georgia, sorry. That's communication, sciences and disorders. Um, but I really, really struggled with anatomy and I had to take it like two incompletes and, uh, in that class and my brain just wasn't or just wasn't working for me.
[00:12:27] So then I looked, I just went for my psych. My bachelor's in psych, uh, thinking that I would, you know, go through that whole path and become a therapist for kids, with hearing loss, um, that get it like entirely pan out. I ended up moving back to Michigan and then that's when I became the, um, my, I got my educational, um, audiologist assistant role, but in terms of applying for college and all of that, um, I mean, there was a lot of guidance from the school, you know, there are all those like matching programs and, uh, That's how it was so long ago.
[00:13:03] I'm, I'm going to really think about that. Um, I will say like applying for disability services, um, my  my mom took a lot of like, kind of control over that. I feel like, um, the transition part between high school and beyond. So kids with kids  hearing loss is really just, um, I don't want to say a place where we're failing, but I kind of think it's the place where we're failing.
[00:13:25] Those are like, um, So many things that children just are not getting about, like the transition to adulthood or applying for college and like, um, I don't, I don't think it's anybody's fault necessarily, but those, um, there's just so much it happens. But in that transition, I don't think our kids are prepared for, um, I feel for me, I would say like, I didn't, I wasn't even, I mean, I work in the.
[00:13:53] And the industry now, I wasn't prepared to buy my first pair of hearing aids that I wasn't prepared to. Um, you know, disclose my hearing loss when I was, but I mean, just closing your disability to, uh, future employers, you know, all those kinds of things. Um, I think just kind of, I don't, they just don't really click and I don't know if it's because we are talking to teenagers or, um, just, you know, how we're trying to reach them.
[00:14:21] Um, but that transition to adulthood, I think because I had a very strong support system. Wasn't as hard as that is first from others, especially from other people. And then I got, I mean, I had all kinds of accommodations at UGA, but they gave me an FM system that was pretty old, like 1980s style. Um, so that was terrible, but I ended up kind of being pretty vocal about that.
[00:14:47] And, um, we were able to get like brand new FM systems for the university, by the time I graduated. So that was. Really proud of and pretty exciting. It was shocking to go to like a, you know, a school as big as the university of Georgia and not have top of the line equipment and stuff like that.
[00:15:10] Carrie: Right. They don't the disability services, especially if there's not like a strong program, that's connected with them on campus. That's, you know, has those types of services available for audiology and speech? They may not know that they like a comtex FM system is probably not appropriate for students right now.
[00:15:34] Samantha: I mean, like I still come back to like the whole thing of like, people know. You know, students not being ready to, to addition is they don't know that they can ask for better equipment. Right. Or, you know, oh, this is what we're getting, but like, you always have to. Like be willing to ask, you know, and like advocate for the things that work for you.
[00:15:54] And if something's not working, you also have to make them aware of that too, because legally the school's obligation to help you in the best 
[00:16:01] Carrie: way. Right. So you advocated for the FM. Did you get any other services in college? 
[00:16:09] Samantha: Um, I didn't know. I had a couple of note takers, um, like, I mean, preferential seating.
[00:16:15] I mean, that was sort of self-driven because you see yourself wherever in college, pretty much. Um,
[00:16:24] I think I might've had extended test time, but I've, I've never really utilized that as a, um, um, as an accommodation, 
[00:16:38] Samantha: I also, at one point did have like written notes, like copies of if the teacher would just lecture, I'd have copy of copies of the notes, um, or the, you know, oh my gosh. Um, overhead projectors, they do have at all.
[00:16:51] Yeah. They do the little like sheets of paper and you could, I would just fill those in, um, I would also like I would meet with my professors too. I think that that was something, uh, I mean, UGA is a huge school. There's 30,000 kids. Um, and so you'd have the accommodation letter and I would set up meetings with all my professors, um, before, or even during.
[00:17:16] You've been doing like those semester. I think that was a huge help because it just, it, you know, differentiate yourself and put you, you know, from all those, whatever, you're more than just a number, you know, face. And they know like they all, they would check in on me, um, those kinds of things and make sure that I understood the assignment or.
[00:17:37] So that was something I think also that, um, was very helpful in 
[00:17:41] Carrie: college. Yeah. A great tip by a teenagers and our parents who are trying to help navigate students or their own kids who are deaf and hard of hearing to be like, you need to meet with your professors. 
[00:17:55] Samantha: I mean, they don't, they're not like they do seem scary and intimidating, but they're there to teach you and help you learn.
[00:18:02] And if you can do anything. Um, apart and I mean, take, you're taking control and you're at, you have your own voice. Um, they know you respect that and they look out for that. So, um, I, I definitely, um, advocate for meeting with your professors, for sure. 
[00:18:18] Carrie: Definitely. So one of the other things kind of just segwayed a little bit, you ended up getting the audiology assistant position and then that did that drive you then to apply for the AUD program.
[00:18:34] Samantha: I’m sorry, you said, uh, my audiology assistant position, you 
[00:18:38] Carrie: had your audiology assistant position for about four years. Is that what drove you to then eventually apply and do the AUD program? 
[00:18:49] Samantha: Well, shout to Kate Salatheil again, because she was, um, she, I mean, she was just like, she taught me so much and she just saw how much I cared and how much I wanted to be involved.
[00:19:01] And she just really just was like, I would just respond like soaking up everything from her. And she, um, at that point I kind of like, what am I going to do? I know this isn't like, um, you know, like I knew that I had the personal experience and I mean, in Lopera they were so. Just supportive of that and like really, uh, respectful of it.
[00:19:22] And they would always do. Yeah, they would always want my input. And that was amazing. Um, when I felt like I had that personal experience, but I really wanted like the credentials to back it up and I really wanted the education because I, I don't want to say I felt like a fraud, but I was kind of like, I don't know if I have like all the right, um, qualifications to be providing this input.
[00:19:44] Right. So then, um, she was like, and then Kate was like, you have to go, like, you have to go. You'd be like an amazing addition to the field. And it would be started exciting. So then like, yeah, now it's pretty cool to have like the personal experience to bring to it. And then I also have the professional, you know, um, expertise and experience.
[00:20:03] Uh, so I feel like. Just kind of, I feel much better about saying things and doing things. 
[00:20:12] Carrie: No, that does make sense to be able to, you have such a gift to provide to the students that you work with and the families, because you can say this is my journey, but then you have the professional knowledge to, to direct them in different ways 
[00:20:31] Samantha: and being involved in different.
[00:20:35] You know, different programs, different, um, uh, uh, groups and stuff like that. I think it is a really, really unique and kind of a necessary perspective because when you're talking to parent and you're talking to these people who are, you know, sharing their anecdotal experience, um, the there's a lot of misinformation out there and it kind of can get spread pretty quickly.
[00:20:56] So I feel like, um, I feel like when I'm going into certain situations, I'm pretty unbiased, but I know that there's like a very scientifically backed like clinical reason for XYZ. And I've been in panel than on an indifferent cause, uh, on different cars and say, um, where I feel like that perspective needed to be shared because what, whichever, whatever was interpreted was.
[00:21:25] Does it make sense clinically? Do you know what I'm saying? Like as an audiologist, you're like, oh no. So let me, like, let me clarify this kind of, um, so I think, but I think it a less intimidating way of doing it than when you're in the clinic or at a doctor's appointment or whatever. So it's, it's cool to be able to kind of, um, provide both of those, uh, perspective.
[00:21:49] Carrie: Yes, definitely. So going, you know, you graduate with your AUD, which is awesome. And then you end up getting your job. Were there any roadblocks that you feel like you encountered as just an individual who's deaf and hard of hearing and getting a job? Or did you feel like it was. Kind of a good segue because you already in that kind of deal.
[00:22:17] Samantha: Oh, interesting. I mean, I don't really feel like I've felt any like huge systemic roadblocks or anything like that. I feel like there were some, uh, like comments that were made and stuff that could have been pretty. You know, if I wasn't me, I think it would have been like really upsetting, but I I'm, I've had people say like, there's no way that you can be an audiologist.
[00:22:40] If you have hearing loss, how can you do that? You can't hear, um, And that kind of thing. And it works out is that most of those comments came from other people with hearing loss and a lot of them were older or whatever. And I, I know it's because you know, the, their technology, isn't the technology that I have and that my technology isn't the technology that the younger kids younger than me have.
[00:23:03] So, um, that was kind of the, that was really shocking, I would say, but I wouldn't necessarily call it, um, a roadblock. Um, I feel very lucky. I've always been very supported by the audiology community here in Michigan. Um, and so I haven't really experienced many roadblocks, um, getting my implant, which talk, I mean, adjusting to, um, I mean, I got my implant and I was activated and then the next week I think I was back in clinic.
[00:23:35] Um, so that was really, um, That was really tough. Like that change just in back to being in the clinic and every little sound was so loud. And I couldn't like my, like my professor to my supervisors would like, like rush all their papers and I would be like, oh my God, what is that noise? That is so loud.
[00:23:57] That a 
[00:24:00] Carrie: little bit for that. Cause I wanted it. That was one of my question for you is. When did you decide that you needed to explore the cochlear implant process and kind of go backwards a little bit? That. 
[00:24:18] Samantha: So it actually started when I was still an audiologist assistant. Um, the woman who previously worked in that district was also a cochlear implant and she was a cochlear implant rep.
[00:24:30] And then, um, just like through going to the different conferences, we. Kate. And I were kind of like, oh, there's this hybrid implant. Like, why don't you do it? And I'm like, ah, I don't know. I'm kind of nervous. So, I mean, it probably took me a good two, two years, three years, um, of like being aware of the new, uh, implant and that I would, I was a candidate and that kind of thing, um, for me to actually pursue it.
[00:24:57] But, uh, a huge reasoning why I did that was because I felt, um, as a.
[00:25:05] And I wasn't, uh, performing my best. I wasn't doing the most for me to be able to best understand the kids I wanted to work with and that type of thing. I mean, children are pretty soft spoken and a lot of them have like speech errors. And then if you put like a child with hearing loss on top of it, you know, I need to make sure that I have all the tools.
[00:25:26] To make sure that I am doing my best job and show. That was something that, that was a huge motivating factor. Um, for me to get my implant, I was definitely just be my future goals and working with kids, um, as an audiologist. 
[00:25:42] Carrie: So you didn't have any like sudden change in your hearing or anything like that.
[00:25:46] You just knew that this technology was out there that now make you a candidate. 
[00:25:53] Samantha: Yeah, I guess I would say I had a lifestyle change. Right. But my hearing, um, was stable, has been stable my entire life. I've never had any sudden changes. Um, getting the implant in my left ear did change. Um, my hearing it did decrease in the low pitches.
[00:26:09] So, uh, that's something that. Which it's pretty hard. It's pretty hard still because when I don't have my implant on, people have to switch sides. Cause like my, like I consider, so when I have my implant on my left, did my good side of it. Then when I have it off my right, it's my good side, because I'm used to hearing with that residual hearing, like I've used it my entire life.
[00:26:30] So, um, it's something that I always kinda joke about. But, um, but yeah, so that would be the only time that my hearing ever changed. 
[00:26:39] Carrie: Okay. right  So. Can you go back and just kind of explain how you came to, um, I guess like make an appointment and kind of determine whether or not you really, I mean, I know you knew you were based on your audiogram, but like actually
[00:26:58] Yeah, the process of the cochlear implant. Um, um, 
[00:27:02] Samantha: yeah, I mean, it's pretty tricky to navigate and it's really intimidating. Um, I think for, you know, for parents or for, um, individuals to make, to take that first step, um, kind of a different. Journey, I guess, because, uh, like I said, a woman that I knew was a cochlear implant rep.
[00:27:20] And so she was aware of some, um, like research trials and stuff that were going on. So she had informed me of that and then put me in contact with the audiologist. Um, I think via email. And so I just emailed the audiologists and said, I'm interested in being in this research. I want to see if I'm a candidate, et cetera.
[00:27:39] So then I actually, so the closest research center or. Where they were doing this trial was at Vanderbilt in Nashville. So I actually, um, my mom and I went down there and I did my entire, the whole test battery there. And I didn't qualify for the initial research study, but I qualified for the other one.
[00:28:03] Um, and then. I came back home and my husband at the time, it said, why don't you keep it in Michigan? I go to Michigan. So then I ended up making an appointment at the U of M CI center. And then, um, I went there and it was kind of, um, I mean, there was conflicting results. So it was just, you know, um, just in terms of EAS.
[00:28:25] So like, uh, Vandy fell my left ear as a candidate. You haven't found my right as a candidate. And I always thought my right ear is stronger, just an understanding and stuff. So that was kind of like, ah, I don't want to wait. Like I want to get this done. Um, and then. So I just went back to Vanderbilt and, um, they w they were, I mean, I will highly, always recommend Vandy that the continuity of care has been something I've never experienced.
[00:28:52] I mean, I would email, I would email the surgeon and he would email me back the same day, same thing with the audiologist. So, um, that was just something I was like, I feel comfortable here, you know, and I think that that's something a lot of people need to do to just like, just make sure that you're comfortable with the people that are helping you.
[00:29:11] Um, yeah, I mean, if you just, I know here in Michigan, like if you just call. MCI center, which childrens hospitals, audiology clinic, those, you can just schedule an appointment for CI eval. Um, I always try to tell my parents too, because people are really scared about CI’S and, um, you know, I always try to, I try to tell them, like, if you just go in for the appointment and get an evaluation to see if it even a candidate, um, cause I know.
[00:29:42] Like when I was younger and my mom, like my mom and dad were told, I wasn't, I would never be a CI candidate, but the thing is that technology changes and you know what, 27, whatever, 24 years later, I'm a candidate. So I think it's, you know, it's important that audiologists continue to encourage their patients to like seek out the best and just seek out information, like having information isn't doesn't necessarily warrant, uh, needing to make an immediate decision.
[00:30:12] Yeah, 
[00:30:12] Carrie: I agree. I think. We cochlear implants have changed so much as far as candidacy goes, and we need to recognize that it's not a last resort anymore. It's part of that continuity of care and you know, you and I have. Similar. I think they like probably identical, um, ski slope audiogram. 
[00:30:40] Samantha: Yeah. I remember seeing the audio going that one of your presentations know, I was like, oh, that's really creepy mine.
[00:30:47] Carrie: It was like a mirror image of each other's audio grams. All of these great sound low-frequency sounds, but all of the high frequency sounds have been, never been audible. 
[00:31:01] Samantha: I know that's something that I think is just, I don't know if, I mean, that was one of the most amazing things was like, wow, I literally have profound hearing loss and these ranges, and now I'm detecting these steps.
[00:31:16] Carrie:  25 dB and a hearing aid would never touch frequency. So 
[00:31:26] Samantha: I don't know. I mean, for you, I, this was one of the things I was just kind of a side effect and I never really like realized it until my surgeon asked me, but like my fatigue level. Uh, so much less. I said, getting the implant. Is that something that you've experienced?
[00:31:43] I'm just curious. It is. 
[00:31:45] Carrie: I feel like. I definitely for me started having discrimination difficulties, uh, prior to the implant. And that's what prompted me to think about an evaluation. So I was definitely having a lot of fatigue prior to the implant, just because I had to concentrate so much harder with my hearing aids and.
[00:32:10] so that Prompted me to go for an evaluation. And then of course, like what you said initially after you first are activated and your brain starting to get used to a whole new language. I was exhausted just trying to figure that out, but as time has gone on and I feel like that focus, so the speech is more like speech rather than.
[00:32:34] chirps and beeps, it's a lot different now. So I, and I'm the same way when I had my implant on I'm like, you need to be on my left side because that's my good side. And then the vice versa, if I don't have my implant on, for whatever reason, like you need to be on my right side because that's my right side or my good side.
[00:32:56] But I do like having. The residual for me, just because I have so much residual low frequency hearing, having that was the residual low-frequency hearing just brings back, I guess, the natural acoustics that I'm used to of escaping. It's 
[00:33:15] Samantha: almost like a, it's an a to like a comfort thing. I, you know, in a way too, cause I can only, I have always heard this right now.
[00:33:21] I'm just hearing better this way. Um, when they do my testing at Vandy, like there's a huge difference in noise. Like if I had just had my implant on versus if I had my hearing aid and my implant on so, you know, somehow my point is using both that like both of those, um, To make a lot more sense of it and noise too, which is like the most challenging environment.
[00:33:44] So, um, yeah, the combination of the two is like the best 
[00:33:49] Carrie: that is in that. Most frequently asked question by people who don't have, you know, experience, uh, where they aren't pushing off his name. So it's like, how is your brain going to get used to this signal? That's total electronic and natural acoustic signal.
[00:34:09] How is it going to bring it together? And it does. 
[00:34:14] Samantha: We don't know, but it works
[00:34:18] Carrie: so was there anything after your implant that you felt like you did to kind of speed things up? I know you kind of got thrown back into work obviously, very quickly, and that can be a challenge, but did you do anything on your own or did you have therapy that you felt like kind of fast tracked to progress?
[00:34:38] So I 
[00:34:39] Samantha: didn't do any therapy per se. I would listen to podcasts. Like I would I'm stirring the pot that I would be. So when you're in clinic, there was a lot of driving. Um, so I would turn on a podcast in my car and just. Leave my implant on and try to listen, um, through that, or, I mean, when those are too hard to podcasts, a difficult for me already, uh, are still, I would say, but, um, like even just listening to music, like songs I knew and, um, you know, I knew what the lyrics would be.
[00:35:12] So I could, you know, with like figure out what the lyrics were just using my implant. So, I mean, that would probably be the only thing I did do audio books for a little while. But everything was just kind of on my own, like using my commute, that sort of thing. Yeah. 
[00:35:28] Carrie:  Maximize that dive time, right? 
[00:35:30] Samantha: Yeah.
[00:35:30] Might as well. Well, 
[00:35:36] Carrie: we definitely have a similar journey with a cochlear implant. I just want to say to thank you because I got my implant a couple of years after you did and  great sounding board for me when i was making that decision
[00:35:53] Samantha: That's terrifying. You don't know if you just don't know what to expect, you know? And like now I'm like, dang it. Why did I wait so long? But I mean, you really just don't know. And it's like, the fear of the unknown is, is pretty intense. So, um, I mean, I'm glad that I was able to, uh, you know, be a good, safe, like sounding board too, because I mean, I think that's what we do.
[00:36:16] Right. I see. As audio audiologists who have hearing loss, I think that. You know, you just kind of want to tell parents to go for it and you just want to like, know, let them know it's going to be okay. So I think that's a huge way that we give back and it's cool to be able to give back to colleagues 
[00:36:31] Carrie: as well.
[00:36:32] Yeah, it is. And I think what you said about it took you about three years to kind of come to that point where you're like, I'm going to make an appointment like you. And it is, I think it's a whole different Ball game when you're a patient. Oh, 
[00:36:48] Samantha: absolutely. 
[00:36:50] Carrie: So to be able to have that perspective for parents and, but, you know, teens and adults, um, to say, Hey, like you're still a human being and you still have to go through that emotional process of, um, getting to the point where you feel comfortable.
[00:37:08] Samantha: Absolutely. Absolutely. Yeah. I mean, sometimes I feel like I, maybe I'm a little bit, I don't wanna say aggressive, but I'm like, just do it, just do it. Like, you know, I think, you know, most of the time it's cleaner, it's gonna work out better than you could ever imagine, but it's got to be more judgment. So it's really, you know, it's kind of tricky sometimes I want to be respectful, but it's like, oh, if you could just do this, you know, like, um, shout it out.
[00:37:33] We see that obvious cochlear implant. You candidates, it's just heartbreaking. Cause I, you know, we've experienced the power and the change and you know, how much easier it makes life. So that's hard. I think that's one of the hardest things. And, and doing what we can do it anyway. I do, or whatever. It's just like, man, oh, I just want you to do it.
[00:37:57] Don't hold back. But no, well 
[00:37:59] Carrie: right. But everyone has their own process too. So I have to be, I guess, a support along the way in wherever, like part of their journey that they're on is, is important to. So kind of switching gears just a little bit before we wrap up today, I just wanted to ask you, um, you have been an integral part of a campUS experience, which is a overnight experience, at least pre COVID that we, um, my colleague, Dr.
[00:38:31] Gail Whitelaw and I do at the Ohio State university. And that you were gracious enough to be a counselor for. So, can you just share a little bit about what your experience was being a counselor and how that, you know, kind of paying it forward is helpful? 
[00:38:51] Samantha: Absolutely. Well, it was so much fun and like, just so rewarding and to me, Like, you know, campUS and all of that, like, that is just why I do this.
[00:39:01] Right? Like, um, like I said, I feel like that spot where teens are transitioning into adulthood, it is one of the, one of the most under-serviced. And I just feel like making it fun and doing this camp and bringing peers with hearing loss together. That is such a, um, Critical point in life to do that. You know, these kids are like facing the unknown and they don't really know what to do, but then here's adults with hearing loss who are kind of cool.
[00:39:27] Just, just getting Jasmine, like we're fun. But anyway, so it's like, you know, we have those conversations. Um, can't have with anybody else, you know? And so when they're talking to their students or talking to their peers with hearing loss, like the laughing about awkward situations that they've been in because of their hearing loss and, you know, I think there's so much stress and anxiety that comes with, you know, going to college or going to the workforce or doing whatever you're going to do after high school.
[00:39:57] And so knowing that you aren't the only person out there with this and developing. Those friendships and those bonds and seeing these mentors in the okay. It's going to be all right. Um, I think that's just, that's a powerful thing to be a part of. And I was honored to be asked to be a part of it and work with you and Dr.
[00:40:16] Whitelaw. Oh my goodness. She was amazing. Um, I think, you know, when like people like me and Jasmine and like, because the other people who were there, I feel so bad, but I mean, we, Jasmine is like one of my close friends. So I just keep saying that I think that, um, we can talk about our experiences transitioning to adulthood and they're all different.
[00:40:40] Right. So. It also just normalizes the differences of experiences that we all have, and then we have fun and that and then it's just a good time. And, um, I loved it. It's fantastic. 
[00:40:55] Carrie: So did you feel like meeting some of the other counselors? How was that experience? I don't know if you've ever really had like a peer mentor kind of before meeting 
[00:41:08] Samantha: other.
[00:41:09] What I owe and never forget. So this is a different camp. It's called Bear lake camp in Michigan. And so it's a, a camp it's like a week long camp for a kid who, uh, is an oral program for kids with hearing loss. And it’s a camp and. I will never forget the first day. I like we were checking everybody in and you see these kids come in and there's literally a weight lifted off their shoulders.
[00:41:34] You're going to see them relax. And still like how it feels. Um, when you meet, when you're in a group of people with hearing loss, you know, um, I think about at the AAA conference, we always have the meeting of audiologist with hearing loss and it. This amazing people, amazing place with all these people, and we're all bouncing ideas off each other and trying to figure out how can we all help ourselves and sharing experiences and just to kind of a different sort of a safe place, um, where it's like, okay, yeah.
[00:42:06] You know what I'm talking about? And, uh, so I think that that is obviously something that I experienced with the counselors and, um, my. Yeah. It's sometimes too. It's like a little bit like, oh, I will say sometimes I get a little bit of anxiety. Sometimes meeting somebody else with hearing loss because you just don't know like, Where they are.
[00:42:27] And some diff that makes sense. Like, cause I have a pretty like open book about anything. Like people can ask me anything I'm, I'm not going to hold back. People can like say jokes, you know, say something offensive and I won't be offended, but other people might not be there. So sometimes I'm always trying to gauge that.
[00:42:44] Um, but when I meet people with hearing loss, Right that weight off your shoulders. 
[00:42:51] Carrie: It is, it is. And I just, that was one of the reasons I really wanted to start something like that. Then be able to have the, in the shoes experience with someone else and recognize like, all right, I might be the only person at my workplace or my school or wherever you might be, but there are other people out there that.
[00:43:16] Samantha: Absolutely, And like the internet, like Facebook, like Instagram just took all of these like ways that we can communicate. Um, I think makes it so much easier for everybody to like, stay in touch, you know, like if something happens, something funny happens or something awkward happens, or you're like, oh my God, Jasmine and I we'll text each other, you know, and it's just like really cool to, you know, those friendships and those relationships don't they only come from things like this.
[00:43:40] You know, the majority of people with hearing loss are in the hearing majority. So we're not finding each other. And I don't think that we innately seek each other out. You know, I think that we have to be brought together because we don't identify as, you know, only somebody with hearing loss and it's not.
[00:43:57] Like, there's not like a deaf community around it with like the hearing community around it. So it's just a place that we have to carve out and relationships that we have to develop. And campUS is such a, an amazing way for us to do that. 
[00:44:12] Carrie: Yes. I think it's just important for professionals who are listening or parents or individuals that do, uh, who are deaf and hard of hearing to hear that because.
[00:44:24] We can, we, we can make these connections for people, but if sometimes needs to be, I don't want to say forced, but brought together so that people understand the value of it. 
[00:44:37] Samantha: I feel like I just like, because there's this middle that we're in, right. You know, like not big D deaf. We are hearing, we, we identify as hearing.
[00:44:47] We're all we can hear. So we're always, you know, Well, making it work in that world, but then there's this part of us. That's not necessarily like, I don't know what the word for those as part of us is, is a little bit of a void or whatever. I don't even know if it's a full void, but like, it was just like, oh, there's something missing.
[00:45:06] Oh, I'm just always trying harder in this world. And then the other, well, let me go. This is what, this is the coolest space. Like this is like not taking away from who I am here, but it's just adding like a deeper connection and understanding. 
[00:45:21] Carrie: Yeah, because there are a lot of challenges in the hearing world.
[00:45:24] So to be able to talk to someone who is experiencing the same challenges and how they navigate is important. So I think that's, yeah, that's 
[00:45:34] Samantha: helpful. I hope I hope. I hope I can others too
[00:45:38] Carrie: And I hope we get to be back in person sometime too, because the virtual connection is, is hard, but it's better than nothing. So I have to say that much.
[00:45:48] Absolutely. As we wrap up today, is there anything else that you want to share with any of our podcast listeners that I didn't ask you? 
[00:45:57] Samantha: No, I don't think so. I feel like we've covered the gamut of everything. 
[00:46:02] Carrie: Yay. And if people want to get connected with you, if they have questions, is there a way that they can connect with you?
[00:46:10] Samantha: Yeah, absolutely. I mean, um, probably just my email would be the best way to be honest. I don't have like any other, um, like I don't have any of the websites or anything like that. 
[00:46:22] Carrie: Um, active and like LinkedIn. 
[00:46:25] Samantha: Oh yeah. I am active LinkedIn. 
[00:46:29] Carrie: And I can put your LinkedIn, um, 
[00:46:32] Samantha: yeah, if you want to just put my LinkedIn and my email, or maybe LinkedIn would be the better one.
[00:46:36] If you want to just put my LinkedIn on a, in the blurb or whatever, that would be fine. 
[00:46:41] Carrie: I put it in the show notes display us. So, but I just wanted to say thank you so much for being part of this podcast and sharing your Professional and personal journey. I hope our listeners will gain a lot, which I'm sure they will.
[00:46:55] And I just appreciate all that you do as, um, and your own field in Michigan, because I know you, um, certainly do help, uh, have a ripple effect on the kids that you serve as well as the professionals that you get to interact with. So thank you again for being part of this. 
[00:47:14] Samantha: Thank you so much. Carrie. I am honored to be a part of it.
[00:47:18] Carrie: All right. Thank you for joining us on the empowEAR Audiology Podcast. And please feel free to share this podcast with any other listeners that you think will benefit. Have a great day. 
[00:47:32] Announcer: This has been a production of the 3C Digital Media Network. .

Episode 27: empowEAR Audiology - Dr. Michelle Hu

[00:00:00] Announcer: Welcome to episode 27 of empowEar Audiology with Dr. Carrie Spangler.
[00:00:17] Carrie: Welcome to the empowEar Audiology Podcast, which is part of the 3C Digital Media Network. My name is Dr. Carrie Spangler, and I am your host. I am a passionate audiologist with a lifelong journey of living with hearing challenges in this vibrant hearing world. This podcast is for professionals, parents, individuals, with your own challenges and those who want to be inspired.
[00:00:46] Thank you for listening, and I hope you will subscribe, invite others to listen and leave me a positive review. I also wanted to invite all of you to visit and engage in the conversation and the empowEAR Audiology Facebook group transcripts for each episode can be found. www three, the number three C digital media network.com under the empowEAR Audiology podcast tab.
[00:01:19] Now let's get started with today's episode. All right. Hi, everyone. Welcome to the empowEAR Audiology Podcast, and I am really excited to have a return guest with me today. I have Dr. Michelle Hu and, uh, from mama who hears, and she is a pediatric audiologist who also like myself has bilateral hearing loss and she uses cochlear implants.
[00:01:46] And I actually interviewed Dr. Hu and the episode 16 of empowerEAR Audiology. So please go back to that episode and you can hear more about her personal journey.
[00:02:00] Michelle: Today,
[00:02:01] Carrie: however, I have Michelle on this podcast because she has a new adventure and a new resource that I want to find out more about. And I think all of our listeners are going to want to know more about this amazing resource called “My child has hearing loss now what?”
[00:02:21] This is a great question. And I can't wait to hear more about this resource. So welcome back Michelle, to the empowEAR Audiology
[00:02:30] Michelle: podcast. Yeah. It's I love hanging out with you, Carrie. Thank you so much for having me here. Um, yeah. I have a new adventure for the past several months. I've been working on this program.
[00:02:42] Um, and how it came about is I started my Instagram and I said, you know, what, if I still have fun with this in a year, I'm going to do something, a big project, something that can really. Help others hope, you know, and maybe change the world of audiology. Um, I started getting so many questions from parents and I just wanted to step up to them and give them a hug.
[00:03:12] I wanted them to say, schedule an appointment with me, come and see me. But these parents are all over the US all over the world. In fact. So I started putting together. Basically a curriculum or a list of things that should be addressed or that I wanted these parents to have information and resources about it started.
[00:03:36] Oh, go ahead.
[00:03:37] Carrie: So how did you come up with this list? Like, what is it because of your personal experience, your professional experience, how did you come
[00:03:46] Michelle: up with the list? The questions I was getting from parents were very similar to what I would get in the clinic, but in the clinic, while we have protocols in place, we have got my phone.
[00:03:59] Um, we have we have a system, we have a path for them to follow and. I quickly realized, wow, like not everybody has access to pediatric audiology for one. Maybe they're going to an adult clinic. Um, maybe families in rural areas, you know, can drive three to four hours away. I have patients that, you know, I'm in California, some of them drive from Mexico over the border to come see us.
[00:04:33] Some of them drive from four to five hours away in Arizona to come see us. And I was just thinking my goodness, I want to be able to somehow package everything that I talk about and give it to parents. How am I going to do that? Well, a video of course might be a good idea, but I don't want to. I don't want to, I can't, I can't test, you know, their child through the internet, through the computer, but I can give them all of the knowledge that I give to parents at the end of appointments, as I'm walking them out of the hallway through the door
[00:05:12] All of those things come from my personal experience. So, yes, um, I've collected all this information while, while being a clinician, but I also have, you know, 38 years of personal experience that I can share and that I think can help a parent get a sense of calm, more confidence, and, um, try to. You know, settle down the anxiety or the doubt that they might feel.
[00:05:40] All of the information is out there. I'm just packaging it up and. A nice little package with a hug. Oh, I love
[00:05:48] Carrie: that idea. So I was just looking at some of the information that you have put together and the different topics that you do have, and they're all very important topics, but I thought we could just highlight maybe a couple of the topics that are going to be included in that, in your book.
[00:06:07] And maybe before we do that, can you just explain. Uh, the package that you're going to be offering for parents and possibly professionals
[00:06:16] Michelle: too. Absolutely. Yeah. I started off with the idea of, I want to create video modules for these parents to be able to watch. I am a mom of two little kids. I really don't make time to sit down and read books.
[00:06:33] Um, and maybe that's the way I learned to, I just want to see things and be a little bit more interactive. So I started writing down, you know, I have eight modules. The first is processing the diagnosis or when your child is identified with hearing loss. Uh, family, some families are devastated. My mom was, and some families actually feel a sense of relief.
[00:06:59] Maybe that parent has been suspecting something's going on with their child, but all the doctors are saying, no, no, no. They're just, you know, just give it time. They're lazy. Or whatever, um, that parent might feel a sense of relief when they finally find out what's going on. Um, I go over audiological testing, what kinds that we do for different ages or different cognitions.
[00:07:24] Um, and. I explained, I also told the parents, how can you prepare for this appointment? This one will be longer. This one will be shorter. Um, you want to be well rested or maybe for a sleep test. You actually want to bring your child super cranky. There and we're, we're SO we're very happy to see your child with cranky.
[00:07:46] So that means they'll sleep through our test. Um, and with, with that, I chose to interview several professionals that could help with that. It included an ENT. I included a marriage family therapist and SLP and auditory verbal therapist. I also included, um, Interviews with a mom of two teenagers with hearing loss, a deaf mom.
[00:08:13] Uh, so Emily Burke, is her name's, she grew up in a hearing family. She uses ASL as their primary mode uh, primary language. And she has a deaf daughter and a hearing son with incredible to see her journey as you know, a deaf parent from different. Different walks of life. I interview my own mom. I, that one made me cry because I got to see a part of her.
[00:08:42] And she shared different emotions about her journey that I had never known. Maybe she was afraid to share before. Cause she thought it would hurt my feelings, but I was just like, oh my gosh, mom, like you, you felt the way you felt. And it had nothing to do with me. Um, anyway, so back to the curriculum, I, I go.
[00:09:05] What are some options? If you want your child to be amplified, I go over different languages. You can use the auditory verbal spoken language. You can use sign language, whichever one it is. It's important that your family that is completely a hundred percent on board. Um, So it's not easy either way, you know?
[00:09:29] Um, but talking about those decisions, they included some exercises, um, in the handbook that are there other conversation starters, so conversations to have with your child conversations to have with yourself conversations to have with your co-parent, if you have one. So there's eight modules in the program.
[00:09:51] There's 13 bonus interviews in these video modules. And then I thought, oh, I want to create some supplemental material. I thought it would be a few PDFs. Well, it turned out to be like 130 pages, so it made it into a handbook. Um, and it was just, this project was just growing bigger and bigger. And I couldn't a lot of these things I couldn't say no to.
[00:10:14] So I was like, you know what, we're going to do a complete package. I'm offering just the handbook alone. You can get that on or without the video, you can get the handbook and the videos, if you'd like that, um, that's the complete package. And then for people who need some extra support or one-on-one sessions, I've offered the handbook, the program, and then a 75 minute, um, where at least to start a time to chat with me.
[00:10:43] Um, and see, you know, talk about what your specific situation is like, where your anxiety is, how can I help you and how can I support you?
[00:10:52] Carrie: Wow. That is an amazing package and 130 some pages that is a lot of resources for people for, I mean, as a parent and just what you commented about your mom and the emotions she was going to talking about it and a video now, how do you think this.
[00:11:12] Package or what age group for a parenting does it really target was the all age.
[00:11:21] Michelle: It can apply. It's mostly targeted to those parents of children who, um, from birth to that first year post identification or post-diagnosis I do include, um, how to take care of yourself as a parent of somebody who with special needs.
[00:11:40] I had to also talk about how to advocate for your child. And then we get into school age. So it's a wide range. The first part is really that first year post identification or diagnosis. And then the second part is more school age. What can I do? We talk, I interviewed Tina Childress who is an educational audiologists like yourself.
[00:12:00] And she talked all about IEP. Then what kind of services that schools can offer? Whether your child is going to use spoken language, or if they're going to use sign, assigned language. So it's giving the parents resources of how do I navigate school now, wait, there's an educational audiologist. And I have somebody in the clinic, what are their different jobs?
[00:12:23] And I really pose these questions to these professionals so that parents can. They can kind of meet an educational audiologist or a speech therapist, so they can find one in their area and also have a little bit more confidence going to meet them and knowing what they're there for. Instead of, I don't know, you're a professional.
[00:12:45] You tell me what to do. Okay. So if they can go into that appointment with two feet firmly planted on the ground, this is what I want. This is what I'd like to get out of this appointment. They can work that much closer and better with that professional and really reach the goals that they want for their family or for their child.
00:13:04] Carrie: Right. So empowering that parent is so critical and this whole process, and it's obviously a journey.
[00:13:12] Michelle: I remember like when we were young, we had Dr. Flexer and I think the parent support group with only just starting, they were stumbling their path and figuring out what to do. Um, and our parents didn't have Google back then.
[00:13:30] They didn't have internet. They didn't have Facebook support groups or Instagram,
[00:13:37] what they could, they did the best with what they could.
[00:13:41] Carrie: Yes. Yes. So there's so much out there, but I think sometimes it's overwhelming. So to be able to have a resource like this, where it's packaged. So parents have a go-to resource and they can get other information, but to have a kind of a, a baseline I guess, for where to get that information
[00:14:04] Michelle: and it's all out there.
[00:14:06] Um, my stance is I'm going to give you the resources. Point out to you where they are, where you might find them and you make the decision that's best fit for your child and your family. You know, um, a lot of resources or some, some groups feel like, oh, I don't have the freedom to make this, this choice for my child.
[00:14:28] Oh no, you're the parent. You do, you know, your child best. You know, these are the ingredients for whatever journey that you want to partake and go on and try this, try that, try whatever, find what, what is best fit for your family? Really?
[00:14:47] Carrie: This resource sounded very comprehensive, especially if I'm a pediatric audiology audiologist.
[00:14:53] And like you said, 38 years of personal experience and this journey, do you think this resource would also benefit other like professionals and who do you think it might be beneficial for?
[00:15:07] Michelle: Yeah, I created this thinking or with having the parents in mind, however, then I thought, you know, what? Audiology students might be able to benefit from this too.
[00:15:18] A speech language pathologist would benefit from this as well, early interventionists. We, it seems, it feels like. All of the different healthcare professionals, you know, where we specialize in something. Well, how much do we know about the other team members? Um, I think it would be a great resource for them to watch, to see me, somebody who's had hearing loss and, um, has navigated.
[00:15:46] You know her journey one in one way, for example. Um, so I think definitely a lot of different healthcare professionals related to hearing or spoken language or ASL could definitely benefit, uh, from either just the handbook or, or the videos as well.
[00:16:05] Carrie: Yeah. I was just thinking sometimes I have families in different areas may have like an early interventionist, but the early intervention.
[00:16:15] has a more global view of early intervention, which is great. You want that view too, but to be able to have a resource that they may be able to walk the family with the family and help them guide them through that too. Um, at the, you know, another person on the advocacy team that work with.
[00:16:36] Michelle: Or even therapists or counselors who work with children with hearing loss are families with hearing loss, um, can definitely benefit and say, oh, well, I watched this program.
[00:16:47] I know that there are these types of resources out there. Maybe he, or she has never met them, but this is where you would be able to find it includes so many different resources all over the world. Uh, since I do have some, um, followers that are like in the UK and in Australia now, the portions or other, the video that the, an interview with Tina Childress.
[00:17:12] She mostly talks about schools in the United States. So that part might not be able to offer as much resource or information to those families. But I mean, it's, it's all of like, it's so much, there's so many other parts to it too.
[00:17:29] Carrie: Wow. That's great. So is there anything else, I guess one other question would be if that had kind of a book format, how do you suggest.
[00:17:40] Um, parents or professionals end up getting the book going through it. Do you think of sequential or whatever's happening in their life at that moment?
[00:17:50] Michelle: I wrote an essay about this in the introduction of the book, take a look at all the different topics, see where you're at in your, in your child's journey, but also see where you're at in processing all of the emotions and thoughts and.
[00:18:05] You know, stories that are, might be swarming in your head around what's going on and take it at your own pace. Do what works for you. Don't try to learn everything all in one sitting. There's no way, you know, our moms took years to figure out what was gonna, um, what they wanted to do, or even figuring out what goal there's journal prompts in the book as well, too.
[00:18:29] Uh, identify the emotions and identify the stories that might the parent might be creating, or family member might be creating. Um, the videos go fairly, really good in terms of chronological order. Okay. Well, let's talk about the diagnosis and let's just only talk about that. Don't worry about, you know, testing or amplification just yet. The audiologists.
[00:18:54] We'll we'll get there. Um, so it's really. Take what works for you right now, leave it, process it and go back. When, whenever you have a little bit more information or when some of your thoughts and stories have settled,
[00:19:10] Carrie: I like your idea of having the journal prompts within the book. I think we all. For a couple of reasons.
[00:19:19] I think writing things down is helpful to kind of get that out and then to be able to reflect back on what you journaled too, and maybe kind of follow up with the journaling, how much you learned along the way or what you might do differently. And when you write it down, it just gives you something to go back to.
[00:19:38] Michelle: And no single no one's journey is the same as anyone else. I tell cochlear implant patients. They get, you know, frustrated how come I don't hear as well as that person. Well, it's not fair to compare you to them who might be five years out. You need to compare Carrie uh, three months post a cochlear implant activation to Carrie at day one.
[00:20:04] Look, wow. That's a huge difference. Did you notice that, you know, and everyone's journey is really unique and different.
[00:20:13] Carrie: Yes. So, is there anything else that you want to share about this launch that you just had in August and what? Um, I mean, I, I think obviously we want to know where to find this information, but is there anything part of this package that you want to share that I haven't asked you yet?
[00:20:34] Michelle: Hm. And it's available on my website, a mamahuhears.com. And it's literally me sending a hug out to those parents. I think I was, I think I created it for the little Michelle's out. I didn't necessarily have the language when I was in grade school to know how to advocate for myself. My mom was figuring out her own way too.
[00:21:04] And it's trial and error, of both of our lives, you know, 30, 30, 40 years of experience of figuring out what has worked for us, going forward with that, throwing away what hasn't worked for us. And we can only learn from other people's sharing is such a gift if we share. So yeah, I thought of this program, it started snowballing into an even bigger project.
[00:21:35] And at one point I was just like, I can't stop like this, this absolutely needs to happen. It needs to be out there. And I have three goals for it. One is that. Pediatric audiology, um, and clinicians, the standard is I think that we all, um, should really strive to be on the same page to strive, to be, uh, in an excellent level of care that we provide.
[00:22:02] I see parents becoming more confident in what to do, where to bring their child and where to go, or how to search for information to navigate this journey. And then I see those little kids being growing up in a supportive village. It really does take a village and a team and really just truly growing up knowing I can do whatever I want.
[00:22:28] I can do. I can achieve anything that I dream of. You know, hearing less doesn't have necessarily have to define the trajectory of my life or what I accomplished. I can, I can still do anything that I dream of, but those were my three goals for this
[00:22:42] Carrie: program. Yeah. Those are excellent goals. And I love the title.
[00:22:47] My child has hearing loss. Now what? it gives you that next steps of where to go next and how does. Take your journey to the next level. And I love the goals for this, but I am going to go ahead and put in the show notes, link to your website so that people can get on to the website. They can read more about it.
[00:23:08] They can find out how to order the book and if they want the book in the video, or if they want the book, the video, and some VIP support with you. I think parents really appreciate that at some points in time. And then for our professionals that there, they can take a look at it as well. And see if it's something that might be a benefit for them and early intervention or that clinic, or just to have as a resource, to, to learn more, um, about this journey, because you definitely have, um, both that professional and personal expertise with really.
[00:23:43] Like you said it speaks from the heart too, and that it gives everybody a big hug because you have so much empathy for what you do. And so much insight into what you do, that parents are going to really value this resource. So thank you for coming onto the empowEAR Audiology Podcast and sharing about this wonderful resource.
[00:24:06] And I hope that other parents and professionals will take a look at it and get ahold of you to find out more information.
[00:24:14] Michelle: Yes, absolutely. Thank you so much, Carrie, for your time and letting me be here.
[00:24:19] Carrie: All right. Thank you all listeners for listening to the empowerEAR Audiology Podcast, and, um, be sure to share this information with all of those that may benefit from it and have a great day.
[00:24:33] Announcer: This has been a production of the 3C Digital Media Network.

Episode 26: empowEAR Audiology - Drs. DeConde and Cannon

[00:00:00] Announcer: Welcome to Episode 26 of EmpowEAR Audiology with Dr. Carrie Spangler.
[00:00:17] Carrie: Welcome to the EmpowEAR Audiology Podcast. My name is Dr. Carrie Spangler, and I am your host, a passionate audiologist with a lifelong journey living with hearing challenges in this vibrant hearing world. I wanted to have an empowering audiology podcast for all of my listeners. Many of us learn and grow by being in communication and connecting with others.
[00:00:42] It is my hope that all of my listeners will learn something new and be empowered after each episode, whether you're a professional, a parent, an individual with hearing challenges, or just want to be inspired. I am glad you are here with us today, and I am extremely grateful that you're with us for today's episode, which is a recap of the live Facebook event that took place on August 24th, 2021.
[00:01:13] If you didn't catch us live. No worries. Today you're with us on this podcast and you will get the recap of everything that happened on the live event. This live event was , featured two incredible individuals, Dr. Cheryl DeConde-Johnson and Dr. Lisa Cannon. And the topic was back to school, hot topics and serving students who are deaf and hard of hearing in the school setting.
[00:01:45] You can find more information about the empowerEAR Audiology podcast on the three C digital media network based website. And you can also find the transcripts on the website as well. So without any further ado, let's get started with today's episode. Okay. Hey everyone. Welcome to the empowEAR Audiology live Facebook event.
[00:02:14] I'm really excited to have this event today. We are going to be talking about back to school, hot topics for students who are deaf and hard of hearing. And I think this is a great topic as we get into, um, the new school year. So for those of you who don't know who I am, my name is Dr. Carrie Spangler, and I am an educational audiologist.
[00:02:38] I also have a lifelong journey of living with hearing challenges. Um, vibrant hearing world. I have a cochlear implant and I also use a hearing aid and I am the host of the empower Audiology podcast. And one of the reasons we're going live tonight is because we are celebrating one year anniversary of empowEAR Audiology with 25 episodes over the last year.
[00:03:06] And we thought we would have another great event tonight. And so if you haven't listened to the empowEAR Audiology podcast, I encourage you to go to apple or Spotify or wherever you listen to your podcasts and you can find it there, or you can visit that three C digital media network web page, and you can get online and listen, and there are transcripts available online as well.
[00:03:36] So I just wanted to introduce, I had two amazing guests with me tonight, and we are going to have a conversation with all of you about back to school, hot topics. And I have Dr. Cheryl DeConde Johnson with me today, and she was brave enough to be my first guest on the empowEAR Audiology podcast. And brave enough to be the first guest on Facebook live tonight.
[00:04:01] And she. Has such a, uh, bring so much experience to the field of educational audiology. And I'm so excited to have her tonight too. And then we have Dr. Lisa Cannon, who is, um, the president of the educational audiology association. And she also has her boots on the ground running as an educational audiologist in the Denver public schools.
[00:04:28] So, um, she's going to have a lot to add to this conversation because she has been running about just like I have, I'm trying to get, uh, the year set up. So welcome Cheryl and Lisa, thank you for joining me.
[00:04:46] Lisa: Great to be here. Thanks for having us good.
[00:04:50] Carrie: And I just want to welcome everyone who is joining us live today or tonight or wherever you might happen to be you, but the time of the day it is.
[00:04:59] And, um, and could any of you to, um, give us a thumbs up emoji, write a comment, um, the, whatever you feel as we're having this conversation tonight, we're going to try to pay attention to the comments and, um, make sure that whatever you're thinking about you are engaged as well. And, um, so those of you who are listening or paying attention on the replay, um, we hope that you will engage with us on the empoweEAR Audiology, Facebook page, um, as we kind of keep this conversation going with this view beginning.
[00:05:36] And so, um, I think just start, um,
[00:05:44] That's okay. That's why won't lie, but we have technical difficulties sometimes it's kind of a good segue. Um, so last year was a crazy year. I think we can all admit that. And we had no idea going into last school year, what to expect. Um, so I think my first question would be going into this year, I think was still going to be in a very flexible mode.
[00:06:13] We don't really know exactly what to expect for the whole school year, but what can you guys think of that happened last year that we can bring positively into this year as we begin the new school year that we want to bring forward and keep doing.
[00:06:34] Either one,
[00:06:35] Lisa: I will start because I think there are quite a few positives that we can take forward. I actually, as I was thinking about it and talking to a lot of our colleagues and listening, I really think that we are going to, um, continue the amazing connections. That's what I kept hearing. Like the ability to connect with families.
[00:06:58] Um, during COVID even, even during the shutdown while challenging, it was also in a little bit improved than a traditional school year. You know, we were able to get more parents were able to join in their kids' IEP meetings. And more professionals were able to join in those meetings. And we were, we were just a little bit more connected and I don't know if that's because of like the efficiencies of virtual meetings then while we're all sick of zoom.
[00:07:28] I think that zoom and zoom and Google meet those kinds of virtual meetings are here to stay. Um, at least there are in my district, we're still having virtual IEP meetings this year. So, um, I think that's a positive. And even though I'm sick of looking at the screen,
[00:07:49] Cheryl: I cannot have some, yeah. Um, I think we learned so much in the last year and a half about technology and how to make technology work for our students and what kind of support that teachers needed. So I think our toolkit grew a lot over the last year and a half and hopefully. We don't have a lot more, we have to learn because we've kind of done it all.
[00:08:15] And so I think we're just better equipped for whatever brings, whatever technologies come our way. We've kind of done it all in the last year and a half. And so hopefully it's not as challenging this year as it has been in the
[00:08:28] Carrie: past. Yeah. We definitely have some tricks in our toolbox this year and moving forward as far as what we needed to do and flexibility and, and things like that as well.
[00:08:40] So I think one of the greatest things about technology too, is it makes you think outside of the box. And we've had so many, I think, advancements with, um, some of our technology, whether it's, uh, you know, some of the automated captioning and being more available on different platforms. And I think I was telling both of you, um, before this, one of the things that I, um, did was record, uh, like kind of front loaded overview inside of it.
[00:09:10] It's about hearing and, um, hearing challenges in the classroom that really applied to any of our kids, um, to be able to share with, with whole teams of teachers and just be able to send that out. So have you heard or talked to anybody who've been doing things like that?
[00:09:30] Lisa: Definitely. I think, I think teachers are a little bit more open to it.
[00:09:36] It's easier to get them a message or to get them the information electronically these days. Um, and then, you know, showing up in their classroom and doing an in-service. And so I think those resources, like you said, that we created are where they're sticking around, for sure. We're still we're using them.
[00:09:56] And I, what I do love is that I think, um, going forward throughout the year, rather than me running over to do some troubleshooting, um, for kids in person, which for me, it's only a 20 minute drive maybe to my furthest school, but some, some for some of our educational audiologist, it's like an hour and a half, so that they can get on a video.
[00:10:16] You can hold up the device, it can talk through it. And I'm, I'm loving that even in a, you know, even just having. Get not be in my car quite as much for small issues. And that's, I I'm excited about that for this year.
[00:10:32] Carrie: Yeah. I just had that happen to me yesterday when I had a teacher who, um, texted me and she's like, I, I can't get the boot on.
[00:10:42] And I was like let’s face time. And so she should just show me and I'm like, oh, so-and-so got new hearing aids. That's why you can't get the boot on. So it solved the problem really quickly. So we could move forward instead of me driving over there and realizing like I'm going to need some other pieces and parts in order to get this fixed.
[00:11:04] And, um, but it was a great way to quickly figure out the problem and go on with the next step.
[00:11:13] Lisa: Because everyone is so comfortable with the format that, you know, with the video format. Now you can do it on your phone, on the fly. If everyone's comfortable with that. So I think it's, it's, it's kind of a cool thing.
[00:11:27] Carrie: It is. Yeah. So kind of thinking about, I mean, I think they've learned so much. Am I going to take so much forward moving forward. I haven't, but I think we also have a lot of hot topics that we can talk about as we move forward into the end of the school year. And I know Lisa you've been on the ground running as we started at the school year.
[00:11:52] Is there any hot topics that really have stuck out? Um, so far.
[00:12:01] Lisa: I'm trying to think, you know, I can't pinpoint one particular hot topic, but I just want to like address kind of the, the mood, right? The mood that's out there. Like there's this, um, there's this kind of, I think kind of like, uh, it's, it's cautious, but it's so hopeful. Everyone is really happy too. The kids are so happy to be back in school.
[00:12:28] The teachers are so happy to be back in person, but yet there's so much unknown about where we're all going, like you mentioned. So I think that, um, That I noticed myself the first few days, I was just grinning ear to ear just from seeing my kids and starting a new school year. And their parents were so happy and nice.
[00:12:51] And it was just, um, that's, that's kind of been refreshing, you know, it, it reminded me of kind of what I love about my job and what's, so it's not necessarily hot topic, but COVID, and where we're going, that is where we're going this school year. I mean, that is the big unknown. And I guess we can chat about that here real quick.
[00:13:14] Cause we're S we're still in masks, at least in my part of the country. And that's, um, was a challenge last year and that is still a big challenge. Um, so that audibility in the classroom, that visibility of speech reading, that seems to be probably the one that's sticking around, you know, the most from last year,
[00:13:37] Carrie: Yeah, that's sticking around for us too.
[00:13:39] And I cover quite a few different districts and every district has their own policy right now. And so it, you know, figuring out what their policy is and, you know, the level of comfort with teachers and students and what they're coming in with. So it is kind of hard. There's no one right way to do things.
[00:14:03] Um, so I think we have to take a lot of what we learned last year, which is, I think it came down to at least what I think. Individual kid and evaluating each individual kid and determining what type of setup is the best for them, because some of our kids did really good with a clear mask and some didn't do so good with a clear mask.
[00:14:29] Um, some of them needed, we needed to really, um, reintroduce, maybe technology that they may not have wanted to utilize in the past. And now they're realizing that they really need that technology. Um, so I think those, those were some of the things that I've seen so far. Cheryl have you heard anything like nationally?
[00:14:55] I know you kind of sit more on national level, um, consulting.
[00:15:00] Cheryl: I think it really has so much to do with what the, uh,the infection rates are in the communities that you live in. You know, I, I know in some states there's so many kids that are being quarantined because if you do our tests a you're positive, and of course there's no shots for our younger kids, then they have to stay home and quarantine for 10 days.
[00:15:24] So I think it's going to, it's just challenging. Um, and you know, we just have to. Go with the flow, be flexible, have some grace, um, and just know that this is still a very challenging time. And while in Colorado, where Lisa and I are, things look pretty good. The elementary new elementary school, where I live is everybody's back on board.
[00:15:45] And, um, they're not even wearing masks, but yet at another location, other school districts in Colorado, it's very different. And as Lisa said, and then in other states, the thousands of kids that aren't in school because of exposure. So, you know, um, we'll talk about this more, but I just think our teachers are angels for what they do.
[00:16:07] And they, um, you know, they're responsible for so much and they have to deal with the various viewpoints and what parents want for their children. So kids may be flowing in and out of school. I don't know. I just think that our teachers are really needing lots of kudos and support for everything that they are challenged with.
[00:16:34] Carrie: Yeah, no, I agree too. Um, so I think this kind of goes along with the mask, but, uh, most, you know, all of our kids and all of us are having more difficulty understanding because the, the mask are going, gonna be around. Um, and it really decreases audibility to any kind of sound. So, uh, what have you guys seen as far as classrooms go and trying to improve that signal to noise ratio?
[00:17:09] Lisa: Well, I've seen a number of, of things, you know, since my services are directed at students who, um, who do have reduced hearing I'm going in and I'm, you know, I'm, uh, implementing our hearing assistance technology. Um, and oftentimes that is, um, so lately that has been so welcomed by teachers. When they see me bring, um, a classroom audio distribution system with speaker system in there, they are like, Ooh, please.
[00:17:40] Thank you. They're so happy. Um, I've, uh, I know that that has, um, at least in my last couple of years, while teachers are, um, excited to have that. Uh, have that assistive tech. So that's basically improving the signal for all the kids, typical and reduced hearing and, uh, saving their voices. Um, so I've heard a lot of teachers just talk about, I just pass the teacher in the hall yesterday.
[00:18:07] She's like, oh, I'm not going to be able to talk at the end of the day. You know, there's, there's so much that we can do as educational audiologists, to support teachers with, with that. I've also seen some. Um, creative, you know, when I, our, of course our budget is designated for kids, um, on our case loads that we're serving for either 504 plans or IEP, but I have, um, I have seen some schools where they've gotten creative and, um, Carrie, you and I were talking about this, but the little mini PA systems that hang around the neck with the little boom mic, that is one of the more popular things I've seen just off of, you know, I think a $40 lift off of Amazon and it gets the job done in some, in some ways for the average everyday kind of struggles that the masks bring because, um, it is a challenge.
[00:19:04] Yeah. Uh, and, you know, just speaking personally to Carrie, cause I have, I have a moderate hearing loss as well. Um, and I find myself walking into buildings and turning, you know, putting my hearing aids all the way on the speech and noise, highest program they'll go on and, and I'll be a little bit behind and hearing kids and teachers, and it's just, it's just, uh, it's a lot of effort to a lot.
[00:19:32] It's a lot harder and everyone's more tired than I think, um, you know, in a regular listening environment, you know, before masks. So what about you? What have you, have you seen some creative, like sound field solutions? I have,
[00:19:50] Carrie: and I think one of the things is, you know, um, Making sure that our teachers and educators and the teams that we work with realize that kids who are deaf and hard of hearing that, those specific technology, that it needs to be prescribed for them based on their hearing needs and that the, you know, creative solution from Amazon is really not going to be appropriate for those students.
[00:20:20] Um, so I think that's one thing, cause we've had some. Uh, you know, directors who have asked that question, can we use this? You know, because I get it. It's a it's affordable. Um, however, I think, you know, when, uh, when we're talking about our kids, that's probably not going to be a solution that they, um, would be appropriate for them.
[00:20:44] I, but I have seen that. I think one of the things too is, um, some of the, um, classroom, audio distribution companies, and, um, some of the, you know, for the personal technology, we're seeing a wait time there, not in stock. And so then what did we do? Because we have a student or a student who need this improved signal to noise ratio, but we're 90 to 120 days out before we can get it.
[00:21:15] We're like halfway through the year. So what did we do then?
[00:21:22] Lisa: Well, I was shocked to hear that and I don't know what I would do. I honestly, I'm not sure, you know, I'd be digging in the back of my closet for some old, old stuff. Maybe I think, you know, that brings up another point too is just that there's this, you know, we, at least in my, we were lucky enough in our district to use some of the CARES act funds last year to get some of those added to our department.
[00:21:47] So we kind of used last year to, um, and I feel really fortunate when I hear what's going on now, but we weren't able to, you know, kind of pad our inventory a little bit so that we would be ready to go this year, but I really feel for, yeah. Feel free. You guys that are it's on back order.
[00:22:06] Carrie: Yeah. So Cheryl, I know you mentioned like by more of a national perspective, you've seen some districts, so, um, stapes be able to use funding that way.
[00:22:16] Um, how, how has that come about.
[00:22:20] Cheryl: Well, I think it requires the audiologist and the district to understand what monies are available through the American rescue plan or the CARES act. But there is a portion of money in the, um, American rescue plan that is specifically for technology and districts are spending money on technology, but it's up to us to give input, um, on what kind of technology is needed.
[00:22:47] And hope that, um, you know, they'll get, get their place in, in, in the line of how that money's going to be spent. So much of that money is not, it's a one-time thing. So it's not ongoing money that they can hire a lot of staff with. They can do some short-term maybe catch up activities for kids who missed a lot of school during COVID.
[00:23:08] But, um, technology's a big part of that. So I think as audiologists, we need to make sure we're on the administrative agenda about that. And then I worry about the districts where there is no educational audiologist and, um, yet schools know they have technology money and they may be unaware of appropriate equipment.
[00:23:30] And just order some of these things, they just see online where maybe there's guys out there, guys, gals, whoever. Going to schools and selling equipment that perhaps doesn't meet the needs of all kids. It may be great for class, but then if you have a deaf and hard of hearing student in a classroom that also needs to be connected, or you've got remote students at the same time who need to be connected.
[00:23:53] I mean, I think our role as educational audiologist is more critical than ever. And I think we've been able to show the value. Um, but, but I think there's so many school districts that don't have that resource and where do they go to get that kind of support? So, um, you know, looking we're fortunate in Colorado, um, you know, with Lisa, we've got great coverage in our schools, but there's other states where having the educational audiology there might be one for the whole state, um, So maybe that's something EAA can do more for, is something more general for school districts about how to promote this equipment, but yet what you need to do to contract with audiology services to ensure that it's being used properly.
[00:24:39] Because I always say our technology is great, but it's only as good as how well it's implemented. And so, you know,
[00:24:46] we
[00:24:47] Cheryl: need to be right up there with in helping and supporting teachers that it's implemented correctly.
[00:24:55] Lisa: That's so true. And I just want to just shout out to our EAA advocacy committee, um, who was Cheryl was our previous chair of that committee for many years. And Kathy Riley, um, is now at the helm and Cheryl's still on the committee, but I know that that our, um, we have also a really active group of state reps, um, in the EAA.
[00:25:17] And you do hear the differences, um, around the country. Um, and. And really, I think a good focus, I think both for EAA. And I think Ash has tried to do so is really how can we get, get our voices heard in a school district level? It's, it's not easy to ask for money in already strapped public education. And I think that, um, that as you mentioned, the value has never been, you know, I, I, that was one of the things I wrote is what have we learned and what was positive, I think is that our value as educational audiologist has really sh shine.
[00:25:56] You know, it's been shining throughout this time, but I think there's so much more we can do. And so developing some resources and, um, outreach materials and especially getting the word out about how to advocate for audiology services. So,
[00:26:11] Carrie: yeah, no, I think that's, um, Important information to, to have to. And then, um, I just want to say anybody that's joining us live.
[00:26:22] Um, please comment if you guys have some more to hot topics and give us some thumbs up, but if you agree with us, but one of, um, live participants that just kind of, uh, also wanted to, um, try chime in to just say, Hey, when we're ordering like those, you know, equipment as an educational audiologist, um, to remember like, Hey, why aren't you using, you know, service?
[00:26:46] And, um, that customer service part is going to be important to think about too. So, um, Yeah. Some of the, the $40 equipment from Amazon is not going to have any kind of, uh, quality support or one to use and is probably not going to be compatible or will not be compatible with any type of, um, equipment for a deaf and hard of hearing learners either.
[00:27:10] So just kind of being aware of that. So thanks for that shout out there. So any other kind of think about it? I think we've talked about the role of, of educational audiologist and how important they are with, um, especially in this time. What about shortages though? What can we do about that? I know just that one of, uh, um, districts that are nearby us, um, they had a full-time opening for a long time.
[00:27:42] Um, so, you know, how do we, how do we get more audiologists and teachers of the deaf and hard of hearing to be part of that team? Because we know our students really need us at the table.
[00:27:58] Lisa: Well, I killed here's another plug for EAA. We have a fabulous effort going on right now to get a graduate student or get students, audiology students, undergrad, and graduate students involved.
[00:28:10] And, um, I think the more that we can do, and of course, Cheryl, Cheryl has been. Instrumental right in getting educational audiology course work in, you know, various, uh, programs, but not all pro not all audiology programs have, um, the awareness of what, what a, um, what a career in educational audiology might entail.
[00:28:34] So I want to shout out to our student rep Brandon and a task force that is working hard, like to constantly working, to get the message out, to graduate students, to say, Hey, this is a great place to come and work. And, um, and here's why you, um, if you want to be a pediatric audiologist, great. Consider, you know, going to the schools, they need you.
[00:28:56] And I, you know, as Carrie, I don't know about you, but I've spent my entire career in schools and I would never go back and you'll hear that you hear that often. So we're, we're definitely a good, like the best kept secret that needs to just keep, get shared a little widely, but don't get, I hear you. It's, it's, it's hard, um, to fill the positions and I, I do worry about that.
[00:29:20] So, and our teachers of the deaf too, so it's, it's both, um, both of our low incidence kind of fields here in school.
[00:29:29] Cheryl: Yeah. And I think, you know, w we here for those audiologists working in the schools, all of the rewards of working with children through the whole educational process and the relationships that, that we develop.
[00:29:42] Um, but there's so many perks and I, you also, as a school employee, you pay into a public retirement system. And I have, I just got my letter yesterday from the Colorado public employee retirement system. And it reminds you how much you put in, in your careers working and how much you have taken out. And I have.
[00:30:06] Retirement. That's like 10 times what I ever put in. So, you know, you have to look beyond just that sort of role of the audiology, but the comradery that you get with the congeniality reality, with the team that you work with and the families that you work with, um, it, the re the rewards are unmet unmeasurable in, in my mind.
[00:30:28] Um, Over time, especially. And then, you know, so many of our audiologists are seeing children of the children that they supported in school. So it just kind of goes on and on and on and on. And it's, it's great.
[00:30:43] Carrie: Yeah. So if there's any, um, students listening live on the replay, um, please reach out to the educational audiology association.
[00:30:54] We would love to connect with you and, um, give more benefits of being in the schools. And I think that's another thing too, uh, for, I mean, as a seasoned, I say professional that educational audiology association, what a network of people, I mean, talk about hot topics and things that are going on. As soon as we have a hot topic, there's somebody that has some kind of a solution for it.
[00:31:21] So again, another reason why I think, like you said, Lisa, what kind of the best Um, kept secret. And when we talk about audiology and being able to be connected, um, with each other,
[00:31:35] Lisa: while you're speaking of shortages, um, you know, Cheryl was wanting to really just pay attribute to teachers. I have been seeing.
[00:31:43] In Mo in a lot of my schools right now that school nurses are really going through a hard time right now, I think being a school nurse in the time of the pandemic is not obviously easy. So, um, I just want to like throw out there that school nurses are, you know, they're invaluable and hopefully we're, you know, we really, as audiologists work really closely with school nurses, um, for universal hearing screening and that sort of thing.
[00:32:13] So shout out to our school nurses and, um, gosh, I hope they, they are probably even experiencing greater crisis them, you know, than we are. So it's just a, it's, it's kind of a, it's a, it's a challenging year to, to go into, I think in a lot of educational fields and just the. The climate and education is it's a little bit of a downer sometimes I think, but the kids are what keep us going.
[00:32:44] And you get a, you, the kids are definitely like, keep it. I just, before the podcast opened my email and I had emailed one of my sixth grade students this morning just to check in and say, and he emailed me back and it was adorable. Um, and that's the kind of stuff I'm like, he's like, no, but I got new hearing aids and I don't need the microphone.
[00:33:07] And, you know, he's just talking me through his needs. And it was just, it's just kind of a reminds you of why you're in the field of educational audiology. It's it's about the kids and you get to see them from, you know, preschool to graduation in their kids sometimes. And it's, it's just pretty awesome.
[00:33:29] Carrie: I agree, 100% too.
[00:33:32] So kind of going back to the school nurses and like hearing screenings. And I think about last year when a lot of our schools were remote all year and maybe didn't get a hearing screening or the ones that are remote and have academic loss, just being online and virtual, what are your, I feel like that's going to be a hot topic or kind of bubble up as we get into this new school year of being possibly in person for most of the year.
[00:34:08] What have you, what do you guys think about that?
[00:34:13] Cheryl: I think there's been some districts that have been very, um, um, proactive in terms of doing summer programs this past summer that, um, not necessarily are focused on deficits, but are creating ways of enrichment to get kids caught up. And, uh, I think that's been great.
[00:34:36] I think kids were ready to come back to school, even though it was summertime. Cause they felt like they'd been isolated for so long and there's there's money to support all of those, um, different initiatives. You've got. Teachers that are available to do this, the training. But I think there's a lot of kids that are going to fall behind or have fallen behind.
[00:34:58] They also already have some data on test scores and the loss I've heard about our kids who are in that last year with their transition, um, situation. And basically they lost all of transition because there was no school. And so will their, will the government allowed districts to extend. 2 22 or whatever the states time is for that transition year to fill in some gaps.
[00:35:26] So I think, I think teachers are creative if they're supported by their administrators about different things that that money can be used for to help close gaps. The mental health needs, um, is huge. That's a huge umbrella over all of this. And I have always felt that a child's self esteem and wellbeing.
[00:35:50] Totally impacts how they do academically. And we have to look out for those social emotional needs in our kids. And I think school districts may be hiring short, short term or social workers or psychologists for a year or two. I forget how much, how many years they have to spend this money. It's like three years maybe.
[00:36:09] Um,
[00:36:10] Cheryl: so, you know, they can do some short-term, whether it's instruction, social, emotional support, counseling, whatever it might be. I just hope schools are looking. And I think they are, they understand what our kids have been through. So I'm hoping to see a lot more social, emotional support also for our kids.
[00:36:31] I don't know. I either be aware of programs in your districts that are expanding on the mental health.
[00:36:39] Lisa: Well, I was just reading an article today. That's what our district has definitely been putting. A lot of the resources have been going as far as, um, focusing on mental health and I have good friends in the field and it's, it's definitely, um, taken a forefront, you know, I kind of feel like it should, and it obviously should.
[00:36:59] It is, um, it's on everyone's mind and kids need kids, mental wellbeing and emotional health far supersedes. I mean sure. Yes. Access is critical to instruction, but they're not, you know, that, that emotional, um, wellbeing even supersedes access in some ways it's pretty critical. So I think we'll see the spending there continue, um, for a few years to come.
[00:37:30] Cheryl: So.
[00:37:33] Carrie: Yeah. I think sometimes our kids, uh, you know, before COVID were they're at risk versus some of the social emotional, just due to the communication, uh, difficulties at times and, and, um, language, you know, and all of that. So then you add in this whole year of COVID, um, on top of it, I think paying really close attention to our students who are deaf and hard of hearing and what their social emotional needs are, is going to be critical in this upcoming year.
[00:38:09] Cheryl: And I think it's an opportunity because certainly we've seen in a variety of areas of COVID how those who are having more struggles are falling further behind. So it's really brought forward the needs of kind of our underserved kids or the kids that fall through the cracks because maybe they got by or did well enough.
[00:38:29] But, but you add now that layer. Access COVID has caused and they have really fallen for the behind. So it'll be interesting to see if we have more kids moving off of 504 plans back into IEP, you know, what's, what's the relationship
[00:38:46] Lisa: there. Um, so we'll see. I think that totally will be interesting. Cause I hadn't thought about that.
[00:38:53] Exactly. Cheryl, you know, Carrie, you mentioned screenings, I heard you talk about screenings and the bubble up. I, um, that's a really scary topic, a little bit for me now because we've gone a long time without our universal, um, hearing screenings. And so I do worry about the kids that are out there that have not had the opportunity, especially our little ones that might be coming through, um, our, uh, child find process.
[00:39:28] So I am kind of gearing up, I guess. I'm not exactly sure how it's gonna go. Um, I think I've seen it kind of can go both ways. I've seen our school-aged hearing screenings, uh, go from, you know, just screening are mandated grades this year. They say they're going to scream. Every single school aged kid in the district will get a, a hearing and vision screening.
[00:39:50] So they're looking for, they're looking for volunteers and they're looking for grants or, um, students to come in and they're trying to figure out a way to make that happen. And we'll see if that happens, but then I'm kind of seeing in the ch in child's mind and early childhood, there's a lot of still. Um, stuff going on in our part C agencies here in Colorado.
[00:40:14] So there's, we haven't fully opened up our screenings at that level. So, um, you know, I see that maybe losing some ground there, actually in what we've built up in, um, and awareness for the need for a hearing screening at that age. So I'm not really sure how screenings are going to go. I think we're audiologists are going to be busy though with a lot of follow up, um, from what I've heard.
[00:40:40] Yeah.
[00:40:41] Carrie: Yeah. And then there's going to be a lot of, um, gap catch up too, because we're going to be back to before we were screening and catching them early, and now we're going to have this, you know, late identification.
[00:40:59] Yeah. So another deep breath, right for that,
[00:41:06] Lisa: my audiometers aren't calibrated yet, so we haven't had them calendared. Their calibration was coming up. So I
[00:41:14] Carrie: got
[00:41:21] whoops,
[00:41:22] Lisa: frozen. Did we lose Carrie? We blew the internet up talking about screenings,
[00:41:31] Cheryl: which is really a hot topic because those have been on hold in most school districts.
[00:41:38] Lisa: And I still, I'm still getting questions about being in like infection control around doing universal screenings. I've had a number of people reach out and say, what are you recommending for, you know, protocols?
[00:41:52] And I'm like, well, it's not quite like it was last year. We're not sanitizing every single surface or, you know, there's so it's, it's definitely a hot topic and a lot of ways, Hey, Carrie, you're
[00:42:05] Carrie: back. Oh, I don't know. My internet got unstable for a second, so I'm glad I got back.
[00:42:14] Lisa: Awesome.
[00:42:17] Carrie: Well, I think one of the questions I wanted to ask you guys as seasoned professionals is what kind of advice would you give, like either a starting teacher of the deaf or a educational audiologist who was going in, um, to a more mainstream type team, educating the team about a student that they have, who has these different things on their IEP or their 5 0 4plan and the team, um, or maybe a particular person on the team does that.
[00:42:55] Want to do some things, um, whether it's like wear the microphone or wear maybe a clear mask of that was something that was recommended. Um, but what kind of advice would you give someone that kind of just starting out, getting their feet wet, trying to establish rapport with, with the school?
[00:43:20] Cheryl: Go ahead, Lisa,
[00:43:23] Lisa: just going to let you go. Um, that's hard one I, um, a couple of things come to mind because like we, we do as audiologists. I think we're all, um, we, we give a lot of information, you know, we're very, there's a name for that. I'm not thinking of it, but we like to give out information. We like to give out, um, Talked about all of the, you know, the areas of our expertise.
[00:43:51] Right. So I think it really is about building that relationship and that rapport. So listening and hearing the concerns of the, of the teacher, because they're probably coming from a place, you know, probably just not understanding fully. So, um, I would probably just, I would suggest that, you know, providing an article or providing, you know, the law in front, that those things are, might not really work in this situation.
[00:44:22] That's going to push that teacher a little bit further away when you say, oh, it's in their IEP, you have to do it. Um, I would not recommend doing it that way. Uh, although I think we've had to say, you know, occasionally it has to come down to that, but. Um, but really listening, perhaps, um, putting them in touch with another teacher, who's tried it, um, when it comes to wearing the mic, for instance, that's a good one, uh, doing some sort of demonstration, like you could even demonstrate with a clear mask versus.
[00:44:55] A cloth mask and show them, I am, I think they probably need to feel heard and supported. And, um, and there's, like you said at the beginning, Carrie, there's totally not always one right way. And although, um, we think that we, we all went through that learning process last year, if you remember the clear masks, right.
[00:45:18] And the versus the cloth masks or the surgical or in N95 and there, and subsequently various researchers and studies, um, really showed that, you know, the clear masks don't, don't have this good of audibility. And so you really have to take it, you know, student by student. And so I think, you know, we, we have learned.
[00:45:43] That things aren't always better just because we think they're going to be better. So I don't know, working with the teachers working with, um, in a collaborative way, Cheryl, what would you do
[00:45:54] Cheryl: ditto to everything you've said? I think I'm trying it as let let's see what works for the child. So let's try this and if that doesn't work, let's try, um, a clear mask.
[00:46:06] If that's not going to give enough audibility, let's try a Mike look at the difference between a mic. If it's sitting on your waist versus a mic that's appropriately placed. Um, so I, again, I think many times it's fear. Um, because they aren't sure they're going to do it right. Or they don't want the student to look different because they're doing something.
[00:46:28] So giving them lots of different strategies for and support. It's all that is going back to I'm. Um, I'm right here by your side to help you do this. Tell me what your fears are telling me what your concerns are. Let's talk those through. So it's that, you know, the relationship, the knowledge, and then the evidence that it makes a difference for the kids.
[00:46:52] Carrie: Yeah. I think we have, you know, we want a new, um, Educational audiologist and teacher of the deaf they'd be successful. Um, but it also, you know, we know that teachers, I like just rockstars and they are the ones that are with our kids every single day. So we definitely want to appreciate them in whatever way we can.
[00:47:16] And like you said, show whatever we can do to support them, um, along the journey, but also that support our kids too, to make sure that they have the access that they need in the classrooms. Yeah. And I
[00:47:31] Cheryl: don't think we do a good job in our training program. I mean, I can speak for the university of Arizona where I teach the audiology course for our masters degree, teachers of the deaf, you know, I'm sitting here thinking my gosh, am I giving those teachers the strategies they need to problem solve this with.
[00:47:50] Another specialist or the general classroom teacher, whomever, and you know, maybe I'm not giving them enough strategies. Cause when you're the newbie, either you're over exhibit over producing what it is, because you've learned that you got to teach advocacy and you got to advocate on behalf of these kids and you sort of bypass the relationship part or you just don't want to step on anybody's toes.
[00:48:17] And so you think, oh, well, okay. I guess I won’t push that. Um, so I mean it's hard. So maybe, you know, we need to think more about that in our training programs,
[00:48:29] Lisa: I would call those the soft skills, right. That we all need for a lot of working relationships. Right. I definitely see the value of, and I'm much better at it now that I'm old.
[00:48:41] I walk in, I walk into a classroom and I don't just say, Hey I'm and then start I'm like, how are you? You know, just starting with what the personal exchange I'm always sets and a smile, right. Always sets you off, um, on a really good, um, because you're, you're walking into a classroom and I walked into a lot of them the last few days and you get a variety of kind of, um, responses from teachers.
[00:49:08] And if you go in with that smile and that like just personal level, they're, um, much, much more receptive. So. That it's hard. It's hard to do, to do our job. Right. Cause that's one of the most challenging things walking into the classroom cold and you know, maybe unannounced. And, but if you're the person there to help, you know, I'm, I'm just, I'm here to support you then.
[00:49:35] How can they, I noted that really.
[00:49:38] Cheryl: So, you know, you have to be a little bit persistent, but with grace.
[00:49:45] Carrie: Yeah. I know. And it's that balancing act. And I think like what you said, Lisa, like over time, you just learn these different ways of, of balancing that and being supportive and. Um, inclusive by teachers too, which I think I wanted to bring this up too.
[00:50:04] Cause I know Cheryl, we had talked that ahead of this, the, um, program, the live event too, is how can we show more appreciation for teachers who are those rock stars who are, you know, learning this new equipment and, um, accommodations. And if they have an interpreter in the classroom, I mean, they learning all these new strategies that they have to incorporate into their everyday teaching.
[00:50:31] So what I know you had a great idea.
[00:50:35] Cheryl: Well, I'd love to see us have a teacher appreciation day. And, you know, even if it's a card that just acknowledges, we understand you're under a lot of pressure and that you're meeting the needs of so many different children. Um, and we're here to help, you know, maybe one day you bring a little box of cookies, you know, it can be anything.
[00:50:55] I think just the act in itself that reminds that teacher, somebody does appreciate who I am and what I do is huge. I don't think it has to be a big thing, you know, with as educational audiologist and we support so many teachers. So, you know, how would we spread that out over time? But, you know, we can, um, given my, trying to remember, I have the cutest, I love you stickers and.
[00:51:23] Somewhere on my desk, know even a little sticker like that, that
[00:51:27] Lisa: says Cheryl, building on your idea there. I think that EAA I've talked to our, um, our VP of public relations and she is going to check with our advocacy committee and EAA is going to consider a fall event called thank a teacher day. And maybe we can, I, for one, can think of like going into a classroom, taking a selfie and post with some of the teachers that I work with, who I just adore and think the world of and doing and all getting together as an organization and doing something like, like writing a card or, or taking a photo and posting it on Instagram or a sticker or.
[00:52:14] You know, a box of candy or something like that. There kids there's so many, just little things and I think they would, um, it would, it would be a great way for us to stay positive and really show appreciation for the teachers because they are the ones carrying the weight, a lot of the weight most of the time.
[00:52:32] And it's not an easy shining job that they have
[00:52:38] Cheryl: and they're doing our work for us.
[00:52:42] Lisa: That's true. We, we go in as the designated consultant, the expert, but they're carrying out the, the, the they're meeting the needs. They're the ones implementing. And I think we do, we do need to show them our appreciation.
[00:53:02] Thank a teacher Day
[00:53:04] Carrie: I love it. Stay tuned. I hear a lot of ideas coming out of this whole conversation too, if I have maybe some little marketing, we could have little stickers is something that EAA people could print them out and put them on a card. And like you said, just something simple like that, to know that you're appreciated.
[00:53:24] I know, even if I just get an email from someone that says, Hey, listen, you know, this really helped me. I'm like, oh good. Somebody appreciated something that I did. And then just that little, it wasn't anything monitored. I mean, I, it was just something as simple as getting a refreshing email from someone or a text.
[00:53:45] So, yeah. Great.
[00:53:48] Lisa: And I, I, I love the focus on positivity, Carrie, cause I think we're. You know, we, we feel, I heard it described kind of in a way that made sense to me what this school year is like, it's kind of a little bit like, not that you guys have know anything about this, but, or me, but it's kind of like a hangover, you know, you've had too much fun the night before, but the year sort of feels like a little bit of that, right?
[00:54:20] It's just a little, you're, you're a little bit weary. It's dry. It's dragging on because of the situation with the pandemic and not going away because we thought, you know, we might be in a different place now and we're just not, so we're not quite. But yet we're still pushing on through our, through our day, through our school year.
[00:54:41] And so I think that by staying positive and doing some positive things that we can really just, um, get through this, uh, get through whatever it is we're going through and, um, and keep ourselves going. Cause we need to do that.
[00:54:57] Carrie: All about the mindset.
[00:55:02] Well, as we kind of wrap up tonight, I just, we're kind of getting up to an hour and I thought I would give you guys an opportunity, um, because you guys have been so involved on so many different levels with educational audiology association, which I just think is an amazing organization. Um, and everybody should join the association, but there are lots of great resources, um, for advocacy and just resources in general, that even if you are not a member, if you're a teacher or a speech pathologist or a teacher of the deaf or a parent, you could get on.
[00:55:41] Um, do you guys want to highlight just a couple of those with in conjunction with all of my hot topics today?
[00:55:49] Lisa: Sure. And I want to just give a shout out to membership because with membership comes one of our greatest, um, benefits, which is our listserv, which has just our email, uh, Q and A and support group.
[00:56:06] It's so, um, active. And so many of our members say that was one of the best things about, um, EAA membership. So shout out to our lists listserv. I also, um, we also have great and I'm going to let, I'm going to save Cheryl, you, you point out the advocacy resources. I'm going to point out the fact that we also have some great, um, we have a discount code for if you're a member for the educational audiology handbook and some other great books from our summer conference, we have some, uh, we have great professional development by and for.
[00:56:46] Uh, just for educational audiologists. So I think that's, um, one major perk in those that's of course it's open to members and non-members so, um, the, the last thing I'll say too, I think. I want to get, we have great scholarships for students, and that is something I think is a little bit of a kept secret.
[00:57:10] We are in the process of trying to fund an endowed scholarships. So we're in the middle of a scholarship drive, but we're trying, we have a donor who's matching all dollars up until the end of this year, up to $20,000 for our student scholarships. So they're just, we are here to support the educational audiology community, the community of professionals who work with deaf and hard of hearing students.
[00:57:35] And, um, and so, and, and I think our advocacy resources are fabulous. So I'll let Cheryl talk about that.
[00:57:44] Cheryl: Well, and in addition to those, we had a great summer conference. And if you're looking to either get some new information or want to get some continuing education credit, you can still register and have access to all of those talks.
[00:57:58] It was all, um,
[00:57:59] Lisa: that might be over actually. Yeah, but we are looking at possibly re. Well, we may reshow a couple, one or two of the sessions, but they were amazing. And, um, and we were going to continue virtual a virtual event. I think even when we go back in person and I forgot to mention the summer conference too, which is amazing.
[00:58:24] Yes.
[00:58:25] Cheryl: So, um, we have position statements and we have advocacy statements, position statements, go into a little more, uh, depth. And they're really for the professional, for the audiologist or teacher of the deaf, the advocacy statements are short, maybe two pages and they are developed for a more novice, um, listener.
[00:58:46] Great to give your administrator or a general ed teacher about a certain practice. And we just finished one on hearing screening. That includes what we need to do for children who are difficult to assess. And so as we get back into hearing screening, remembering that we have children that may have difficulty participating in their regular school screening program, but the audiologists may be able to screen those children in their own way.
[00:59:16] So that one, we just finished up last night because so many of the disorders that are out there in special education have a concomitant hearing component. And so remembering that, so there's a whole variety of we're in the process of reorganization of the website. So that's going to change the accessibility to some of these, but anyway, there's a lot of just short advocacy statements that you can use with parents, teachers, administrator.
[00:59:47] Carrie: Uh, so definitely check out. EAA, or we have a Madam president here with us tonight, Lisa Cannon. So thank you for being with us too. And if you're
[00:59:59] Lisa: interested in getting involved on a committee or our board of directors, please just reach out.
[01:00:07] Carrie: Yes. Well, I think we're kind of up on an hour and I just want to thank both of you guys.
[01:00:13] Cheryl, and Lisa for joining and the hot topics as we get back to school. Cause I know we're going to have a lot of those, um, that just continued to evolve. So I think having the conversation now and, um, I thank you, but everybody that's joined us live tonight and who are on the replay. I hope you got a lot from that.
[01:00:34] Um, I encourage you to like the empowEAR Audiology Facebook page and we will continue to post some information on the Facebook page, um, including some of these amazing resources that we talked about. Today and the, so that you will have that link. Um, and there's, um, some videos and Cheryl was just involved in a video that is promoting, um, classroom amplification.
[01:01:00] So we can definitely highlight that. So that, uh, individuals who are in the schools who want to take advantage of some of this funding that's available, um, maybe able to watch that and get some great ideas, um, in order to go to their administration and advocate on behalf of, um, improved acoustics mask type classrooms and even moving forward, we know that the benefit of all of that.
[01:01:26] So is there anything that you guys want to add before we like log off with the night?
[01:01:34] Lisa: I just wanted to just say, I love your podcast. I like go on my morning walk and I'm like, wait, I'm just going to listen to my friend, Carrie, on her podcast. It's so cool. So I love it. That you're doing that. Keep it up and can't wait to hear what you've got coming out.
[01:01:54] Carrie: Thank you for that shout out
[01:01:58] Cheryl: It's nice to have podcasts that are in our own profession.
[01:02:02] Carrie: Yeah. It's not a lot of fun of doing it and getting to know a lot of people
[01:02:07] Lisa: people have happy one year anniversary.
[01:02:12] Carrie: We have a celebration as well. Thank you guys, both for being part of the conversation. And we look forward to more hot topics throughout the year, and we will definitely, um, I'll be in touch so that we can, uh, be positive and motivated and creative with all of our problem solving.
[01:02:32] So thank you guys.
[01:02:35] Lisa: Thanks Carrie.
Announcer: This has been a production of the 3C Digital Media Network.

Episode 25: empowEAR Audiology - 25th Episode Celebration

Announcer: Welcome to episode 25 of empowEar audiology with Dr. Carrie Spangler.
[00:00:16] Carrie: Welcome to the empowerEAR Audiology Podcast, which is part of the 3C Digital Media Network. My name is Dr. Carrie Spangler, and I am your host. I am a passionate audiologist with a lifelong journey of living with hearing challenges in this vibrant hearing world. This podcast is for professionals, parents, individuals, with your own challenges and those who want to be inspired.
[00:00:45] Thank you for listening, and I hope you will subscribe, invite others to listen and leave me a positive review. I also wanted to invite all of you to visit and engage in the conversation and the empowerEAR Audiology Facebook group transcripts for each episode can be found. Www three, the number three C digital media network.com under the empowerEar podcast tab.
[00:01:18] Now let's get started with today's episode. Welcome to empower you Audiology podcast. It is a time to celebrate. Exactly one year ago today, the empowerEAR Audiology podcast was released today is not only a celebration of one year, but also a celebration of the 25th episode, 25 is such a great number to celebrate.
[00:01:43] It's a birthday and anniversary or the 25th episode of empowEAR Audiology. What are you waiting to celebrate today? I encourage you to believe in yourself and make the most of what gifts and talents you were made for and celebration of one year and 25 episodes. I wanted to dedicate this episode to reflecting, refreshing and restarting.
[00:02:07] Today I will reflect on my own personal journey. Refresh on how three C digital media network made, empowerEAr audiology come alive as well as the multiple guests and listeners, and then restart for goals and year two. The first episode of empowerEAR, audiology was titled what is my purpose? And we reflecting on this question over the past year, I have been reminded that we truly do not know another person journey.
[00:02:36] We all have our own experiences that make us who we are, and I am truly grateful. That I took the leap of faith with the empowerEar Audiology podcast, to develop a unique platform for storytelling as it relates to personal and professional hearing journey. In episode number 20, I have the opportunity to interview Karen Weiser.
[00:02:59] She's an international career coach connector and storyteller. She also has a journey with a cochlear implant and this episode count goes deeper into why sharing your story is important, we open up emotion by telling stories. We make lessons stick by telling stories. What story do you have to tell?
[00:03:23] Reflecting on my own story, as it relates to being hard of hearing, as well as an audiologist, I hope empowEAR Audiology is helping to break down the stigma that continue to surround hearing loss and other, and that others gain a deeper understanding of the unique spectrum of deaf and hard of hearing individuals.
[00:03:43] I started thinking about stigma again, because it has been a topic of conversation at a recent conference that I attended. My reflection actually took me back to my childhood years. I thought to myself, this little girl me was born with hearing loss, not identified and fit with amplification until the age of four.
[00:04:05] Had significant articulation difficulties, wore analog hearing aids that really did not have the capacity to give me access to the full speech spectrum. I spent 12 years in speech language and auditory therapy. I attended my public school and was on an IEP receiving special ed services. I then went onto college and was told that because of my hearing loss that pursuing the field of audiology may not be a good choice.
[00:04:38] I persisted through. I achieved the doctorate in audiology. I became a successful. And, um, found a rewarding career path in educational audiology. I went on to the cochlear implant journey later in life. And now I'm hosting a podcast. Who would have ever thought that a little girl who was so difficult to understand with a significant bilateral, severe to profound hearing loss would be celebrating the joy of 25 podcast episodes.
[00:05:13] Life has a way of making your own challenges, your greatest purpose. And if you dare to think differently, you will emerge stronger. In my own spiritual, personal journey. I am absolutely grateful to have this lifelong human challenge. Yes, there are times that I'm frustrated, mad, isolated, feeling isolated in this vibrant hearing world, but I have learned how to be resilient and determined.
[00:05:43] From this hearing journey emerged, many positive relationships and a purpose for your career. If you have not already heard my story, take a listen to episode one. I hope you feel empowered after this little reflection to overcome your own obstacles with resilience and determination. And today's 25th episode.
[00:06:05] I also wanted to hit the refresh button and talk about 3C Digital Media Network, empowEAR guest, and you as a listener. I wanted to share a quick story about how I got connected to the 3C Digital Media Network. A good friend and colleague Dr. Todd Houston actually interviewed me about a year and a half ago for his own podcast.
[00:06:30] Titled the listening brain. You can visit his podcast and look for episode number 10, to hear this conversation or go to today's show notes and you can find it there as well. After that particular episode, Todd ask if I have ever considered hosting my own podcast and I've actually thought about it, but with a full-time job and family, I did not have an abundance of extra time to figure out all of the behind the scenes action that go into launching and sustaining a podcast.
[00:07:03] Todd went on to share about he, and two other colleagues that I also know and admire ,Scott Palasik and Tammy Bradham, teamed up and had created three C digital media network. They were looking for content creators. It was the exact platform support and expertise that I needed to be involved with to make empowerEar Audiology
[00:07:28] Come alive. Thank you Todd, for asking me and to the whole three C digital media network team, but yeah, for your ongoing guidance and support. Listeners if you have ever considered a podcast, webinar blog, or any other content creations, reach out to digital media network would be a fit for you. Thank you. Let's hit the refresh button again and talk about the amazing guests that I have had over the past year.
[00:08:01] This podcast would not be possible without each of you willing to give up your time and share your talent. I truly get excited each and every time I have an interview set up, you can visit the website to listen on Apple Spotify and Google play, and you can catch each episode. I am going to give you a brief rundown of each of the guests, because I am grateful for each of you giving up your time and your talents to be on the empowerEAR Audiology Podcast.
[00:08:34] And again, you can visit the website and find out more. Dr. Cheryl DeConde-Johnson. Thank you for being my first interview. And you can hear about her personal story as a parent, as a professional, as well as the conversation about return to score during the pandemic
Dr. Tina Chilress, she shares her personal journey and we discuss AKA shoes, um, and masks and accommodation that may be needed returning during the pandemic
[00:09:06] Camille Warren, she is a mom, extra ordinary mom who shares her story and advice to other parents and professionals about re-entry back into school during the pandemic.
Dr. Carol Flexer, my childhood audiologist. We have a conversation about lifelong learning, mentoring, the brain and passion for audiology.
[00:09:28] Dr. Gail Whitelaw. We have a conversation about teens, teen advocacy and the campUS experience, which is an overnight camp for teens.
I had Dr. Katie Colburn and Audrey Susz who, uh, counselors for the campus program share about teen mentoring and the importance of that.
I loved interviewing Dr. Oliver Adunka, who was my cochlear implant surgery.
[00:09:58] And we talk about the cochlear implant process and where it is headed.
Dr. Beth Walker, we talk about the significance of mild hearing loss in children.
Janet DeGeorge's discusses her parent journey as well as her new book, not a leader. Now, a leader,
Dr. Erin Schafer. We talk about the importance of wearing the mic,
Deanna Magna and her role as a teacher of the deaf or hearing impaired.
[00:10:27] And she shows her resources that she has developed.
Dr. Karen McGiver-Lux personal story, as well as my personal hero,
Dr. Ryan McCreary and the importance of research and audiology,
Dr. Michelle Hu and happiness with peer to peer connections by deaf and hard to hearing.
I also had the opportunity to interview four moms, Nancy, Maggie, Stephanie, and Tina, and they should get it moments about raising a child or children who are deaf and hard of hearing
[00:11:01] Dr Mark Brennan and his personal story research and framing the hearing loss advantage,
Dr. Angela Alexander and her personal passion and dedication to the work of auditory processing and auditory processing disorder.
Karen Weiser career coach, cochlear implant user, and the importance of sharing your story,
[00:11:23] Dr. Sam Atcherson and his personal journey and finding the right solutions and supports
Juliana and Andrew Hebert from HearStrong foundation and being a HearStrong. Champion Dr. Renee Gifford shares about bi-modal hearing and
Jaime Vernon shares her mom journey and her 01C3 organization songs for sound. I know that was a lot.
[00:11:49] And thank you. But listening. All of the highlights of these gaps over the past year. I don't have a favorite episode because I truly loved them all. And I am grateful for your storytelling, whether it was a personal, a professional journey. I loved the learning from each of you and digging deeper into topics to empower others and cannot wait to meet more guests.
[00:12:14] As we kick off year two. Let's hit the refresh button one more time and talk about our listeners. Thank you to all of you for tuning in twice a month to catch the latest episode I've heard from many of you over the past year and continue to receive positive feedback. It brings me great joy to hear when a college professor shares this podcast with students to listen.
[00:12:41] It warms my heart to find out A parent was inspired by another parent sharing their story. I am encouraged when an adult who is deaf or hard of hearing realizes that there are others who are in their shoes. Listeners. I hope you keep on listening. I hope you share with others. I hope you engage with me.
[00:13:02] on the empowerEAR Audiology, Facebook page. Please give a five star review, consider writing a positive favorable comment. All of these actions help empowerEAR Audiology growth so others can benefit listener. There's someone that you want me to interview. Please reach out and let me know. Lastly restart.
[00:13:27] I am looking forward to year 2 and 25 more episodes. I strive to bring more empowering stories, cutting edge researchers and professionals, and additional practical knowledge and tips to all of you. I will be trying out some new ways to engage in the upcoming year, including some Facebook live events and learning opportunities.
[00:13:51] As I close today for empowEAR Audiology, 25 episodes, one year celebration. I just want to give a huge thanks again to everyone for believing in me and cheers to year two and 25 more. Thank you.
This has been a production of the 3C Digital Media Network.

Episode 24: empowEAR Audiology - Jaime Vernon

Announcer: Welcome to Episode 24 of empowEAR Audiology with Dr. Carrie Spangler.
[00:00:15] Carrie: Welcome to the empowEAR Audiology Podcast, which is part of the 3C Digital Media Network. My name is Dr. Carrie Spangler and I am your host. I am a passionate audiologist with a lifelong journey of living with hearing challenges in this vibrant hearing world. This podcast is for professionals, parents, individuals, with your own challenges and those who want to be inspired.
[00:00:44] Thank you for listening, and I hope you will subscribe, invite others to listen and leave me a positive review. I also wanted to invite all of you to visit and engage in the conversation on the empowEAR Audiology Facebook group. Transcripts for each episode can be found at www. 3, the number three, C digital media network dot com under the empowEAR Podcast tab.
[00:01:18] Now let's get started with today's episode. Hi everyone. Welcome to the empowEAR Audiology Podcast and thanks for being here today. I am really excited to have my guest today, Jaime Vernon. She is the founder and executive director of a nonprofit Songs as Sounds and just a little backstory about Jaime.
[00:01:40] Jaime turned basically something that might've been a devastating discovery. That, that her young daughter, Lexie was deaf into something very beneficial. And she has used the music as inspiration and a source of outreach through her nonprofit Songs as Sounds and strives to protect and restore hearing, and improve the lives of those suffering from very varying degrees of deafness.
[00:02:09] And Jaime is the executive director of this organization. And I'm going to just let her share a little bit about her role with Songs as Sounds as we get started today. So, Jaime, thank you for joining me and welcome to the podcast.
[00:02:24] Jaime: Oh, thank you. I'm so excited. And I really wanted to say thanks for having me and letting us tell our story and, um, help hopefully so many people.
[00:02:35] Carrie: Yeah. So do you want to start with just, what is your role with Songs as Sounds.
[00:02:39] Jaime: Yes, of course. So I'm the founder of the charity as well as I'm the executive director and probably 50 other titles as most charity directors. Um, the hats that we wear, but, um, you know, most importantly, I'm a mom of two amazing kids.
[00:02:57] Um, my son, Jacob, who is, uh, 16, and I always liked to include the siblings because of siblings of children with cochlear implants or hearing aids are very important. And I think we, I don't think we talk enough about that. And it's something we're going to talk more about that at our charity, but, um, also, uh, obviously Lexi who the charity was, uh, formed at her whole story, you know, is really what we tell almost every single day in the work that we do.
[00:03:22] Um, and so she is now 13 going on 30 and she is a bilateral cochlear implant recipient. So.
[00:03:32] Carrie: Well, do you want to share with the audience just a little bit about your story as a mom and Lexi and how you got to Song for Sounds
[00:03:41] Jaime: a hundred percent. So, um, so let's see was born, uh, seemingly typical with, um, you know, no delays, et cetera.
[00:03:51] However, at 10 weeks we were told by the pediatrician that she had never been given a hearing test, her newborn hearing screening. So, um, at the time the hospital here in Nashville routinely did them. It was before Claire's law passed, um, the, for your family who, who had helped pass that legislation. Uh, and however, it was just six months before the law passed.
[00:04:11] So they were routinely doing them. And they just skipped her, the deaf kid basically that day. Um, if I'm just saying it bluntly and plainly. Um, and so at 10 weeks when they, uh, they identified that that didn't happen, the pediatrician's office, we were scheduled to go get a test. Well, um, at that test, we were advised that she didn't pass because she was fussy was likely the, the, uh, that was the information we were given.
[00:04:37] So we didn't know she didn't pass. And then we were told to come back in six to nine months, and now I know the standard of care should have been two to four weeks. Um, so we left the point is, is we left feeling great little hearing loss in our family. Uh noise-induced you know, my, my papa, all my grandfather had you worked in a coal mine.
[00:04:55] And so he had noise induced hearing loss, but there were, there was no genetic hearing loss that we knew of. So fast forward, uh, around 10 months of age, Um, of course babies fool you because they still look and they're very aware visually. And, um, you know, they're playing in there, you know, it's just very difficult to diagnose.
[00:05:12] Uh, and at 10 months, her father. Uh, had, had brought it to my attention that he thought something was definitely going on and he clapped very, he's a farmer and he clapped behind her head and she never flinched, she was looking out a window sitting on the floor and she didn't flinch. So mom, internet straight to the internet, you know, there's this, oh my gosh, 12 years ago, um, straight to the internet.
[00:05:36] And I told myself that it was going to be fluid or possibly amount of hearing loss, where she needs hearing aids, um, back to pediatrician, by the time we got through all of that and doing the research and getting the appointment set, which takes a minute for you to process and do all of this. And then we get you in.
[00:05:55] I walked in and the pediatrician that the office was in Green Hills here in Nashville, which is a very wealthy zip code. That's where their office is. So I say that because we should get good service there. They, the doctor said, some kids don't talk until 18 months of age because I said, she's not saying first words.
[00:06:17] And I'm like, well, that doesn't seem right. She has a sibling. Um, and I said, well, what about our hearing? And he said, she heard the noise in the hallway. And I said, okay. So I know that this isn't an inexpensive test for my insurance company. So what's the reluctance, what are we doing? Cause I'm not leaving without you sending me back to, um, to get that follow-up hearing test, which they said, even though the timeline was off, they did say we needed to do.
[00:06:41] And I said, this makes no sense to me. So fast forward, I finally get the referral. It was a lot of like tug of war, which is ridiculous. Um, and so we go to Vanderbilt and we get a full evaluation with, um, our favorite person, Dr. Cathy Hayes, who is like my hearing angel, if you don't know her, everyone should.
[00:07:01] And she, so I sat there and I watched the test and I knew obviously something was going on, no idea what they were about to tell me. And she comes out and she does tell us that they, that Lexie is profoundly deaf. They're going to do the ABR the next day. And I'm just like, I mean, my world went, you couldn't have received the news from anyone more, more kind or more soft-spoken than her.
[00:07:25] I would never pick anyone, but her and my world went to, honestly, this place where I saw these, this school often it was a sketch of black and white sketch. And there were these trees with no leaves on the, on the trees. And I remember later thinking about that image I had, and it was isolation for her. So I immediately say, sign language, special schools.
[00:07:50] What do we, you know, what, what do we do? Just give me my list because I had her, her dad walked out. He didn't, he had a hard time with it, which I can understand. Um, just their relationship now. It's, it's a different connection and a deeper protection for me though. I, um, it was, it was just moms have to, we gotta go.
[00:08:09] It's go time. Okay. So I had like five seconds to get myself together and, you know, tears rolling down my eyes and I'm like, okay, now we got this, I got this. So, um, then she tells me that there's some miracle device called a cochlear implant that I never heard of. And again, it was 12 years ago and I'd like to think our charity has helped with a big, a big portion of the awareness, but there's so many great groups getting the word out, but I'm like, uh, what, so then I'm assuming like you can do what you can, you can restore sound in deaf and I've never heard about this is like a biblical proportion.
[00:08:41] It's like miraculous. And so there's hope, right. She gives us hope. And so Lexi goes through the ABR, confirmed what we already knew. Um, immediate, fast track into, um, mama you're hearing school, even though she still was in hearing aids and it was giving her maybe no access, but it was amazing. And four months later in that time, obviously we met Dr.
[00:09:03] Dr. David Haynes. Who's the director of the program and his team. And, um, you know, he's like family to us, probably one of the coolest people I know. Um, and we're immediately reassured that this is good for her. Fast forward. Um, she's implanted, you know, three weeks later she's activated and she heard a bird chirping the first day and pointed to it and it was just like, boom.
[00:09:26] It was, we were on, we were on the track for speech. So the, the songs in songs for sound now I want to make this very clear is, um, my mother, um, actually passed away one month or I'm sorry. One year before Lexi was born, she died of breast cancer. She was a single mom, incredible woman, like the pillar of the church.
[00:09:49] She was just amazing. Her heart was pure. I, I hope to be as good as she was. And she is every good part in me is because of her and her faith and she died of breast cancer. And so I'm, I'm rocking Lexi her whole first year of her life. And I'm singing her lullabies. My mom saying. Everything in our house was oldies music and gospel music and just the, the love and appreciation of what music can be in our lives and how up these, all these memories with her.
[00:10:21] Um, and so I'm singing to Lexi. And even when, like, I mean, just every, like I'm healing from losing this person, because it was so close to her passing. And I was told she was fine at this time. So I had no idea. She couldn't hear and I'm rocking her and rocking her every night. And every night she would squirm and cry while I'm trying to sing her lullaby.
[00:10:43] And I would hand her to her dad and I'd say, why? Like, what am I doing wrong? I cannot connect with my little girl and I would go and I would cry. And so the moment they said that it didn't hit me right away, but, um, that night I was processing it the day she was diagnosed. And I remember I still get choked up and I remember thinking.
[00:11:03] Oh, my word. She never heard me and how I, like, I wasn't upset with her when she didn't hear me, but I didn't understand it. And so I'm sure I projected that onto her, just with what she felt. And so to think of, of life without a lullaby, without a wedding song, without a breakup song, which like sweet Lexi would probably be the yeah.
[00:11:28] Um, and, uh, you know, without a fun song, without a friend song without music, which really is such a huge, huge part of how we heal and enjoy life. Um, as she navigated through all of her next year of hearing where she literally made up two years of speech in one year, thanks to I alternated Mama Lere Hearing School and a preschool for both worlds.
[00:11:53] And thank you to the wonderful people at Mama Lere Hearing school at Vanderbilt. We, I mean, she made up two years in one year of speech. And so, and she never stopped talking since then, because he's still, um, way advanced for, uh, with her speech. But so I watched this little girl this whole, like, and she loves music like to this day, you know, she's not a singer or anything like that, but she's a tic talk like diehard.
[00:12:17] She, um, you know, she's very social. And so everything that we did that we'll talk about today at some point with about the charity, our tagline is so everyone can hear the music. So people might get confused by our name, but that is the story. And it opens up really good dialogue for us to help people all over the world.
[00:12:37] And, um, I can't imagine not doing this for the rest of my life because of the most profound miracle that happened in our family when she could hear.
[00:12:51] Carrie: Wow. You're bringing tears to my eyes. Just hearing your story. And I love it, but I love how you can take something that seemingly was so difficult and devastating and turn it into a ripple effect that impacts so many people around the U S and your own community and internationally too.
[00:13:11] So I'm really excited to hear more about songs the sounds and really how the different programs that are impacting, uh, lots of different people about the world. So you got to this point where you were in the mom zone, and you're like, okay, we were going to do something. Think about this, we got this. And how, at what point did you decide that I need to do something like a 501 C3 charity kind of.
[00:13:44] Jaime: That's such a great question. So ironically, I wouldn't say ironically by God's design, I was already work, so I, I have a marketing and sales background. And then when she was born, um, I soon took a position at Vanderbilt university because Vanderbilt has incredible benefits. And, um, it just seemed like the right next move while I was in the university eventually was hired in the development office, um, on the university side.
[00:14:13] So I was already starting to learn, like for when Lexi was diagnosed, I was working in fundraising. At Vanderbilt, thank God because it allowed me to go over and they were so great. Um, Laurie McPeak was my boss, um, then, and she was, they were just fantastic about letting me make sure that I, I took my lunches creatively to go and observe her speech when I needed to, you know, to have the two way mirrors.
[00:14:36] Um, and so that was really helpful because we, we, you know, if you told us if I'm, uh, you know, we're both athletes, Lexi's a big time athlete. We'll talk about that. Um, I was an athlete. So if you tell me, and I also coach for many, many years, so if you tell me to do something, we're going to do it like three times.
[00:14:51] If you're saying, if you do this and you get these results, I'm like, well, we must be able to get like triple the results we, so I could go observe all that speech therapy and then go home and we could basically train and, you know, and do the training at home every single night. And, and, um, So I am, I'm just, I look back at that and I'm like, not only was I learning how to fundraise.
[00:15:12] I mean, what, how amazing that this was the precursor and how this all played out, but I could be with my kid, you know, when she needed me there, I could be at the graduation ceremonies at Mama Lere, which are the most precious thing. Um, and so through that though, I was watching this child that was just taking off and I was so troubled.
[00:15:36] I was very, very troubled by. The lack of information that I had for her through her first year. Like why didn't we know that it was two to four weeks should have been the followup. Why didn't I know that, um, she needed a hearing test at birth. Why didn't that happen at the hospital? Why did the doctor, why was, was he reluctant to give me just a simple referral back?
[00:16:01] Like, what is wrong? Like, this seems very simple, um, in the grand scheme of things and something that should be done in all kids. So originally my focus, what were pediatrics was pediatrics and helping parents be informed. And I was, I mean, I was like on a mission. Like every mom needs to know that, you know, I was really passionate and it met the phase of life we were in.
[00:16:21] I was with, you know, a young child. Um, and so I looked around and I started doing some research also on, at the time there wasn't a ton, there were a couple, um, nonprofits out there, but I thought, okay, I was having these conversations with their surgeons and audiologists such as you. And they were like, we just don't have the support to get the word out.
[00:16:45] So originally songs for sound was a huge focus on an outreach tour that supported, um, hearing programs across the country. So I did, I think over 25, hear the music concerts at four and fundraisers for hearing programs like Vanderbilt, like at NYU Lurie children's hospital, all these big programs. And then we cut them a check that they could then do some Goodwill in their communities, right?
[00:17:13] So we would package Nashville and these awesome songwriters that we have, and we would take them to new cities and then we would raise money and give them a bit of Nashville. We would do this in the round fundraiser night and they were great. However, I was a one man team and. Every time I was at events, I kept being nudged by these families or people that would say, can you help my dad?
[00:17:37] Who's a veteran. Can you help my brother who just returned from overseas? Can you get my dad who worked in a factory or my mom or whomever? And I kept saying, well, no, this is pediatric. And it really bothered me. So I started looking into how can we, and let me say this, that tour, the music portion of fundraising.
[00:18:00] Um, plan. We do plan to launch that very soon. We've actually had meetings about it because it was very successful. And, and now that we're coming out of the COVID era, um, people are hungry for events again, and we want to support those programs again, but I really felt called and led to do something on a broader scale.
[00:18:20] And most people, if they know me, they'll laugh because they're like, yeah, you're global. Like that's how my mind thinks. Yeah. Like you're global. And so, um, and, and some people don't think that way, but for whatever reason, that's what was put inside of me. And I, I love new things. I love new challenges and.
[00:18:38] I started evaluating the larger problem of hearing health and hearing loss awareness. And I realized it was a much bigger problem than, than what this look, you know, just the pediatric sector, um, the public, which still exists. So I thought, why can your kids, and I can still do so why don't we just start going around and testing people?
[00:18:56] And like, what would that look like? So I started doing research, um, and in the field of experiential marketing and I realized that's where you deploy mobile experiences, um, Pepsi Gatorade, um, you know, um, Nike, all these big companies, they'll go out to big events, big existing community events, and they'll put on this big experience.
[00:19:21] Well, I'm like, well, that has to be extensive. So I've got to find a way to do it on a dime and it needs to, we need to test people which opens up the opportunity to have a conversation about hearing health. So I, so I started diving into the health experiential marketing sector. I picked up the phone, I did all this research on the best experiential marketing companies in the country.
[00:19:43] And one of the first phone calls I made was to a man named Kevin Joyce at a company. And they were the best. And he said, you know, we've been looking at the hearing health sector. And how it, how it's completely underserved and a huge opportunity from a business perspective. So fast forward, we start working together.
[00:20:01] He becomes more of a consultant. I find ways to do it in house cause that's really expensive when you go through companies like that. Um, and so I found ways to do it far less expensive, like a fraction of the cost. And basically we deployed, I'd put in 2015, my first outreach tour, which is a mobile clinic that, um, sets up this beautiful experience at large events
[00:20:27] On weekends and we test, I mean, tons of people every weekend we give out free hearing protection. We have conversations, we have videos, we have all this fun stuff going on. We do giveaways. Um, cochlear was our first sponsor and is sponsored every year. Phonak was a huge sponsor. Eargo has been a huge sponsor.
[00:20:46] Um, Sertoma has supported, like we've had amazing support through the years. Um, and. Then during the weekday, we do these smaller, more high risk locations when there aren't big community events. So like a YMCA with seniors or everyone, senior centers, veterans organizations, um, boys and girls clubs where the kids aren't getting the right healthcare, um, or access to healthcare.
[00:21:11] And so to date, um, just that particular tour, we've served over 27,000 people and we're just getting started. So that's, that's the gist of, you know, how we do our outreach and how, how we reach our people. That's just one part of the, the charity
[00:21:29] Carrie: So, but that too, uh, how many stops do you typically have on your
[00:21:35] Jaime: tour?
[00:21:36] Such a good question. So I like to give a comparison. So honestly, when we hire a tour manager, because it's a unicorn of a person to hire, because he asked to be able to drive and operate equipment, take care of it, follow all the laws that exist for drivers, um, and be very customer service oriented and be passionate about hearing health and, uh, like, and, and look the part, you know?
[00:21:58] And so it is a, a needle in a haystack when we look for that person. And so, and then we ask them to do like triple the work. Um, so typically these tours, I mean, honestly, they're like, whoa. And I'm like, but, but you get to do good in the world. You know, they, they typically do like 70 events a year while we do anywhere from 225 to 240 in a year.
[00:22:22] That's how many stops. We make. And so, um, we follow all the rules and we, you know, we, we do pay, that's a big part of our budget because you have to take care of them and there's per diems involved in everything. But, um, we do 225 to 240 a year. And to date, we've done over 850 events and we have over 650 unique partners.
[00:22:47] Some of those we've served on repetitively. So yeah. So 650 partners, community partners across the country now that we have is, um, I'm very proud of that because it's, it's a lot of time away from my family and, um, you know, for my kids, me and my kids and, um, and it's, every minute has been so worth it because of the people that we've helped.
[00:23:09] Carrie: That's awesome. So, one other question about the community events. So the experiential events. In that community, that then those are you. Like you have partners within that community. So if someone would say, i have difficulty or, or need some help within the you have connections within that community, then to link them up to
[00:23:29] Jaime: yes.
[00:23:29] So I will segue then into a couple of things. So originally we provide everyone with an electronic, so our software let, oh, I can, this can not go without being said, auto hub is the parent company, um, of auto kiosk, which is the software we use. And I say that because Antonio Cocci is he, he developed the software.
[00:23:52] He's the genius behind it. He has donated, um, since 2017 when we met. So for the past three years, he's donated all the software licenses. Before that we had a company called Ultimate kiosk. They did the same super awesome people. And Tony are the AutoKiosk. Is insane. Like the, the, the, the, um, customization that we can do for the brands that support us, but even like the test itself is super, super easy.
[00:24:19] Um, it is, it has all of, um, I'm not as versed well versed on these things, but all the, all the compliances that audiologists look for from the NOAH to, you know, I could name a bunch of them and I'd say, yes, it is that, um, it, it detects background noises. Um, and then factors that into the test as well.
[00:24:38] There's a hearing aid simulator that you can activate. We have not done that yet, just because we're at public events. Plan on doing that. And, um, we, so, so when they said the point of all that is, is when they finish that test, they have several options of how they want to be contacted, how we can get in touch with them.
[00:24:56] Can they make an appointment, et cetera, up until now up until this year, they've either said I want to be emailed. I don't want to be contacted or, um, just, uh, yes, please give me a call, et cetera. And then immediately though, when the test is done, they get some follow-up material on what to do next, if they just want to navigate it on their own.
[00:25:16] Uh, and then we also print that stuff. And what that looks like is a checklist that I created. Um, obviously females are often responsible for the care, the health care of the family. And so with a female mind, um, I know we like checklists. I know we like, okay, we've got 50 million things to do in the day.
[00:25:35] And I just need to know, tell me what to do. So it basically says call your insurance company and make sure that, you know, go to our website, check out the clinic finder, um, make sure that your then call your insurance company, make sure that they're approved under, under your plan. Um, if not find one that is give us a call, if you need help.
[00:25:53] Um, here's some things that we also recommend. So it's a really good guide of, um, what, what steps to take to get to that audiology appointment. However, What I've found through the past five, five years, past five years is what keeps me up at night is I'm leaving them with instructions. And, and they're probably still a little confused.
[00:26:16] We only have 10, 10 minutes or so with them sometimes longer. And I started looking at the data and, um, really doing a deep dive into some of the things that they tell us. Uh, and I realized that people, um, need more and, and just still the data that's out there about how much, how many people are still not being reached or still not making decisions for their hearing.
[00:26:41] So we started developing over the past year. Well, two years ago, I realized I actually found it in a business book that I study that two years ago, I wrote what's happening now, what we're working on now, which is kind of cool to see that it's happening. I wrote what if there was able what if I was able to build a team that could take every single one of those people that do not pass and walk them through for the rest of their life of their hearing journey and hold their hand and answer questions and prep them for appointments and match them to the right personality, audiologists that have their title.
[00:27:14] A vet friend and me might want two very different types of firsts of personalities and audiology. So that's what we've been working on. Um, for the past six months hard, it's called the care team and it will be a group of individuals who are passionate about helping others. Some people like me who have a hearing loss story, um, and we get to call every person that wants to be contacted and we are going to equip them for that appointment.
[00:27:40] Here's why about two years ago, I started doing, what's called a hearing health profile on people, which means when they take the hearing test, that's just one portion of what we, what information we gather. We actually also gather information on their affordability. How do they rate their hearing? Because we might tell them they have severe to severe, but they might still think there are two that tells me we're going to have a very different conversation than someone that says, no, I'm a five one out of five.
[00:28:08] I'm a five and I have severe hearing loss, like they're ready. And we ask them, do you believe in hearing devices that helps us build a better conversation? If they're a yes. And they also say I'm a five and they're severe to severe. I think we can move that along a little bit more quickly than someone who's like, no, I can hear I'm a one.
[00:28:28] And you know, no, I don't believe in hearing aids. And you know, we have to have a very different nurturing conversation. So, um, and then how, how much can you afford? I, I do struggle with when I hear story after story, after story on the tour where they've walked into an appointment and they've said, I, I can't afford that.
[00:28:49] And they feel like they paid for something. And they made it happen. And either they didn't report back to the audiologist, like they should with how to hear best with the hearing aids and get those adjustments made, whatever the case is, they didn't get the full benefit of that hearing aid and they put them in the drawer.
[00:29:08] So the care team is designed to empower the consumer to make good decisions about their hearing loss and be in the driver's seat. However, to be very, very supportive and very, very. Um, what's the word, um, be prepared to be in partnership with the audiology and be respectful for what their role is in their life.
[00:29:30] Moving forward to understand how much that audiologist means to them and what, how much they need them. And to help bridge that relationship by making good personality matches, and then equipping the audiologist with that information prior to the appointment. So that everybody is we're skipping past a lot of steps and they can say, okay, I've got this in front of me from songs for sound and their team.
[00:29:52] Um, I totally understand where you're at. Let's review this. Am I correct? Yes. Okay. Well, let's get to work and help you here. And so now we're not losing people and you know, on the business side and audiologist has a better chance of retention with that, with that patient. Um, and it may not be the premium that they wanted originally, but you're going to get it over a lifetime and, and keep that patient.
[00:30:15] So, um, this is coming from a professional perspective, as well as a parent, as well as honestly, the best friend to thousands of people across the country that I've personally spoken with. And the things that we hear over and over and over is there's not enough trust in this industry. So the care team is ready to build the trust again and create those matches.
[00:30:38] Wow,
[00:30:38] Carrie: that's amazing. Because then you, do you want patients to be empowered with their own information, as well as you know, what those next steps are. And sometimes you need to have somebody walking down that path with you or you won't like take that next step. So it sounds like that care team would definitely help with that.
[00:30:56] Jaime: Yes, I it's, it's, I'm very proud of this, this one. Uh, it's it's hard work. We're, we're trying, we're scraping together all the change and the funding to get it together. And we're really excited about some things happening, but, um, you know, it's so important. This is the part where I can sleep. It's funny.
[00:31:11] Like we are putting a lot of resources into this, so, you know, in charity world, sometimes you're just like, okay, okay. You know, I have to pay my people out. The, you know, it's gonna, it's gonna work out, but I actually sleep more at night now than I have in a long time, because I honestly like this is, I know this is a game changer, especially let's be real.
[00:31:31] Um, let's talk. I mean, we know OTC is it's going to happen, whatever it looks like it's going to happen and we need to have a consumer focused land. And I feel like, thank God. We've been well ahead of that for a while now. And so a lot of the hearing aid companies and, and device manufacturers are calling us saying, okay, how can we w what's next with songs for sound, because you have been talking to the consumers for so long, and it's less about us kind of being in this power position and more about the information that we have.
[00:32:01] Just this fear, like, uh, a bank of marketing information, um, to have better conversations with, with those consumers. We just know what we know, what they.
[00:32:12] Carrie: Yeah. So what are your, do you have like a launch date or you already have pilot program in place for all this
[00:32:18] Jaime: of this pilot program is in place and we're hiring right now, a couple of individuals.
[00:32:25] So if you, we actually need one more, if you know of anyone interested have them email me. Um, but pilot is in place and it'll go four weeks. And then, um, I have no doubts that it's, um, yeah, I mean, even the software that we, we landed on, like it like even worked in our little tiny budget and, um, it's just, it's so exciting.
[00:32:46] Cause it's fantastic software that we can incorporate a lot of those love pieces, you know, my heart for people like the, the, the hearing health profile and how we talk to them. And, um, I'm so excited. It's yeah, I'm so excited. So yes. So hopefully we go hard launch in two weeks. Um, You know, fingers crossed, whatever.
[00:33:07] So, um, yeah. Thank you for asking that we're really excited. And then after a four week trial, we plan to go like go full, full go. So right now we're focusing on everyone that we've served, obviously, um, over the past five years with a heavy focus on the most recent and then working our way back. Um, really excited.
[00:33:25] Yeah. Thank you for asking.
[00:33:27] Carrie: I can hear the enthusiasm and excitement in your voice as you talk. So that's
[00:33:31] Jaime: awesome. Very much. I mean, I'm sleeping when I do sleep, but hours are longer and you know, it's just the long days, but it's good stuff. It's going to be fun to see this. Yeah, it's going to be fun.
[00:33:42] Carrie: So with all of that going on, are you still doing like you're here with the music kids camp or, and some of your other programs that you have going on for the songs The sounds?
[00:33:54] Jaime: so everything, as you know, was on hold for events. So hopefully the kids can launch. We have tossed around potentially the fall.
[00:34:05] We have to talk with our partner. I don't think that they're fully open quite yet. Um, and, but the latest would be next spring or next fall. So it would be hopefully this fall, if not next year. Um, and that's also depending on a sponsor to cover the year, the music kids camp. So that is by the way they hear the music kids.
[00:34:22] And amazing, amazing program that we offer. So we've served over 300 total people and, um, families to date, um, that we partner with the center for courageous kids who really host the camp. And they kind of look at us as like a sponsor, but it's heavily focused. It's a hearing loss camp and, um, they just take the heavy lifting off of us.
[00:34:43] So it's oh my gosh, I can't is it 400 acres that they have. There. And it's just amazing. They have horses and they have canoeing and they have fishing and they have bowling and they have all these amazing activities for the kids. Their living quarters are fascinating because you can, they design it because in the summer they have teens and kids, camps, no families.
[00:35:08] Um, but they have these big rooms where you could have anywhere from four beds to eight beds, if not more to 10 beds. So they put a whole family in one big room and it's super comfortable. These rooms are like these. They're like, it's kind of like college, but just bigger rooms with more beds, you have your bathroom and everything.
[00:35:27] So it's not like per se, like you're not roughing it per you know, but it is, um, an activity camp. And what happens is. As they hear the music. Um, you know, obviously we keep music at the center of all we all that we do and hearing it. And so there's a lot of programming of families just being able to be together and share.
[00:35:47] Um, but we also build in like this past camp, we did a teen panel where we had four teens with cochlear implants. Um, and here they were all CIs. No, no bilateral hearing aids. So CIs and hearing aids and do spoke. Phonak actually sponsored that as well. He's a Phonak kid. Um, he's a football player at Brentwood academy and he spoke and told his story of overcoming all of the obstacles and the parents were just blown away.
[00:36:16] The kids weren't even there at that point in time. Um, and so we do things like that, but it's a really great opportunity to just share and care and be together and have fun. And then at the last night that we're there, there's a big dance party. And for me to get to sit back and watch all these little, little ones just it's, uh, the age is five.
[00:36:39] to 14 is the average age, um, to watch them dance and have fun and see each other every year. Um, it's amazing. My favorite thing that happened there was the first and second year we brought in songwriters and we actually started to write our theme song. And it's pretty amazing. It's called Hear the Music.. It's gotta hear the music and like a country song.
[00:37:02] I mean, it's just very, I can, I promise you what we on the radio at one day, um, with all, all proceeds going back songs for sound, of course. But, um, anyway, it is, um, it's amazing and the kids helped write it. And so we did the, these sessions where the songwriters taught them, you know, all about songwriting and.
[00:37:19] music and words. And we would have them yell at words for, for, um, different verses in the songs. And so everybody participated in it over a couple years. It's amazing. So that's that. And so hopefully this year next, and then we do our mission work in Jamaica, which is our one model right now where we've been serving and we'll basically recreate the stuff we do here over there.
[00:37:44] Um, we did the whole bandaid approach where we did hearing tests for our partner. It's a deaf school. We started serving, um, and years ago, I'm sure everyone knows Dr. Fred Bess. Okay. So quick story years ago, Dr. Fred Bess and I were meeting about just when I was at Vanderbilt, you know, I just knew of him and I actually had already started songs for sound on the side.
[00:38:11] I wanted to gain more, um, Like, I just want him to be more immersed into the culture. So I went over and I worked for an otolaryngology department, um, actually in the voice center, but I was closer to all of that and just understanding that world and Dr. Bess and I met and I was like, I like loved him.
[00:38:29] Like, I'm like, I need to be I as any time I can just go chat. So I'm just go chat with him. And I said to him, one day, I said, Hey. So I feel like I'm supposed to, I feel like God's putting on my heart that I'm supposed to go somewhere internationally. Like, I don't know where it is. So he starts telling me, we start having these meetings about all of his work and overseas and Russia and everywhere.
[00:38:50] And he's amazing before, you know it, a woman named Kim who is incredible. She worked there, she came to me and she said, my church serves this deaf school in Jamaica. And no one's ever someone came and did hearing tests on a couple kids, but not everyone. And then they never came back. And she said, would you go?
[00:39:13] And I'm like, it's funny, you mentioned that. I feel like I'm supposed to. So Dr. Bess and Kim and myself went down for kind of a proof of concept mission. And six years later, we've been back, um, year over year, except for last year. And we've given two sets of hearing aids because they lose them and they don't know how to take care of which has led to, um, you know, us doing a deeper dive into hearing health as a whole for Jamaica.
[00:39:39] Um, the school is, the kids are amazing. I watched many, we actually, the identified that two kids had normal hearing. They had cognitive delays. Um, but we took, we've taken amazing, amazing, um, audiologists and, and, and parents and, um, nurses and all kinds of grad students. And we've done some incredible work.
[00:40:00] Um, basically though, right now we're trying to raise $5,000 for a demography report. I added an amazing board member. Who's from Jamaica. And she is also an audiologist for Cochlear. And so she's helping us be a liaison with, uh, she's, she's obviously a perfect champion for us. So we're working to work with the government on more awareness and then go in and do what we do here.
[00:40:23] So that's where we're at now. Um, but we can't go yet and hopefully soon we'll be back. I think in the fall, I'll go do another, I have another go at it and meet some of the, um, the, the, the, hopefully we'll be at the place where we have the demography report and we can have meetings with the government and start some, some thoughts on awareness and how we start with awareness.
[00:40:47] Carrie: Wow. The amazing big picture ideas. So that's awesome.
[00:40:52] Jaime: Yeah. Well, and really quickly, there's only one audiologist in the entire country of Jamaica. Wow. Well, a lot of your texts, you know, hearing texts, et cetera, but, and she Dr. Beavers and we're working with her, but she's about to retire. So, yeah, so like, it's like similar to like early intervention has to be, uh, uh, and we have to do that first, um, also outreach, like we do here.
[00:41:12] We have to find a way to recreate that outreach there and get testing there, but we have to have their support. Um, you know, we need to, we need to create incentives and, and understanding of how these people can actually function in society. If they can have help, um, as can be minimal for them, for what it probably costs them to, to take care of them if they're not treated.
[00:41:33] So, um, yeah, so that's it. And then we plan to re you know, hopefully eventually my son wants to one day, you know, um, he wants to run our international missions. And so whoever, if it's him, um, Jacob would be great at it. And he's great. Um, after he, you know, goes to college and all that fun stuff, but we do want to recreate that in other countries.
[00:41:52] Once we have that.
[00:41:53] Carrie: Wow. That's awesome. So obviously like all of these projects and visions and continued vision, take money as well, and fundraising.. So can you share a little bit about how you follow and what your top fundraiser?
[00:42:12] Jaime: Well, so there's that part that does keep me up at night, to be honest, when I wake up now, I'm like, oh, we need money.
[00:42:22] Um, and we do, you know, it's just been so hard on nonprofit. It's been hard on everyone. I'm not going to for-profit non-profit people who are out of work. Um, you know, first of all, shout out to all our first responders and all of our, our nurses and doctors who have been working so hard in the pandemic and, um, But I want to give a big shout out to the people who've been barely, you know, trying to figure this out in the charity sector, because it, it hurts our fundraising style.
[00:42:48] It was a, it was a stop. There was no, it was a cliff. If it wasn't for the government, you know, um, creating opportunities for us to continue to get support through the PPP. Um, I don't know. I can't even imagine. So, um, we were still able to pay the staff. We kept working, you know, we started looking forward to, we had time to plan.
[00:43:07] So, um, all these great programs, um, So we have several events throughout the year, um, that we do fundraising. And now I finally have some team members where I can actually start to make those really successful before it was like me and a part-time person. And I mean, I can put on a great event, like you've met me in person, so I'm going to put on an amazing event.
[00:43:32] And then, you know, like, we'll forget to ask people for money. So I'm, I'm glad I have a team now that, um, is, is going to help me make this more successful, all these events more successful. Um, and having said that we have our hear the music gala, which is what I explained earlier. And so we've done that here in Nashville almost every year, except for last year.
[00:43:53] Um, and that's our big annual fundraiser. We just had that as you know and attended it..
[00:43:57] Carrie: Yes. And I, that was my first time attending and I got to meet you and it was such an amazing event. I was, I loved hearing your daughter speak at the event. Yes. And that was just amazing to hear her side of the story. And then also to hear your side of the story and also, you know, Derrick Coleman and the other, um, gentlemen.
[00:44:22] Yes. Who interviewed, interviewed him. What kind of had that conversation with him was so inspiring. And of course the music was good, wonderful as
[00:44:31] Jaime: well. And it was a little different because it was outside. So I. I love you have to go back next year. So I love that event, my team. So I have to give my team a shout out Miranda Weidle
[00:44:41] Do you all know she's was, is an audiologist. And she, um, came on as co-director recently and she manages our partnerships and just amazing. And she oversaw all of that. And, um, you know, my, my team Joy and Gina, they're like, Gina's our master coordinator. I've been with for three years coming up. And she's my niece.
[00:45:01] And, um, actually my, my niece in law, um, she's married to my nephew who is a Sergeant in the army. So there's that veteran passion that she has for the vets with hearing loss. Um, and then Joy, who just came on Joy, Scarborough. She's amazing. She's like a little go get her. And she knows a lot of people and she's really helping us to expand our vision for what we could do with these events.
[00:45:20] So, um, all of that, they did such a fantastic job. So I want them to know that, but I can't wait for you to come next time indoors only because I've got that down to like, uh, like, uh it's uh, it was beautiful outside. I have it down to like a science, like it is. I know exactly like how did you four hours of constant entertainment.
[00:45:41] So, um, I'm excited to get back indoors, but I did love, it was so beautiful. Like it was whether
[00:45:47] Carrie: it was beautiful that the venue was perfect and
[00:45:52] Jaime: cool, really neat. And our musicians, I mean, they were amazing. Um, they were awesome. So, um, so we do that and then we actually just, this launched this year and it was so successful.
[00:46:02] It's just for veterans, we do Skeet shoot. Um, so shoot with, you know, I don't know, sorry, people, if you're on, like, if you're not passionate about guns, but this is really nothing like that. It is for our veterans. So it's a good tie to like, you know, it's obviously a lot of men that want to come out and support vets and we had some women as well, but we did a skeet shoot.
[00:46:23] So you basically have a team that you bring in, whether you sponsor it or. Just put together for, you know, three, three in yourself. And, um, there are four somes that come and it's very fun and it's a competition and it's at a place called Nashville gun club, which is amazing. And, um, they did a great job and then we had a reception with some music.
[00:46:42] It was awesome. A lot of fun for all our work with veterans. So that was great. This year. The second thing or that, I'm sorry, the third standing fundraiser, which we haven't talked about today, and I'll, I can wrap up with this Hardaways Hope is our third pillar. So we talked about the things that we do, um, outreach, the first one, which is all the big touring and testing and, and helping people learn more about hearing loss and giving them a benchmark test in a conversation.
[00:47:09] Then we move them into the Care team, which we've talked about today, where it's my team for life. They're your friend for a lifetime. And then the third part is Hardaway’s Hope. So now what I have my hearing device, I have my cochlear implant, my hearing aid. Um, I'm a child, I'm the mother of a child, or I'm an adult.
[00:47:25] Now, what Hardaways Hope is now what? Um, John Hardaway was on our board. He was a lifetime board member. He lost his hearing to cancer treatments. Um, the first time he had cancer and, um, it was his wife would tell you that. And he would tell you that, uh, cancer took his life, but the cochlear implant gave him his life back.
[00:47:45] He was, as you can relate to, he was in sales. He was the general sales manager for Brown-Forman Jack Daniels, all those big brown, like he was like salesman of the decade or something crazy. I don't know. He was very, very, very popular within their company. And he had, he had to communicate every single day for his job.
[00:48:02] We all do his livelihood, his communication board meetings, uh, phone calls face-to-face meetings in the car traveling, going out and seeing all of his clients. And suddenly he couldn't after meeting cancer the first time it was like another, just, just shot in below and. He was, I was introduced to him my first year for my first event.
[00:48:25] He actually brought, this is how great he was. So I'll tell you what happened and I'll go back this. He passed away two years ago, ultimately of cancer. Again, had a cochlear implant. I met him through Dr. David Haynes, CI surgeon who was his, um, he's been the breadth of this charity. He was my right hand, man.
[00:48:43] He was more than a board member. He was like a father to me. He was a friend. He was a confidant. He was my mentor. He was my peer. Um, we laughed, we cried. He was my, my bud. And I love his wife, his family. Well, um, the first event that he supported was our first hear the music, fundraiser in Nashville for Vanderbilt. And he actually brought.
[00:49:09] The man who had just shot some of inland that's how cool he was. He was at our first,
[00:49:19] um, oh, what is his name? It's it's skipping my mind Robin. Um, goodness. And so I found that out like way after, obviously we didn't know at the time nobody knew this, but he was there. He was home seeing someone and who came with John, like that's how cool John was. John would just do something like that.
[00:49:37] And I didn't even know it till years later. I'm like, you've gotta be kidding me. So was the Titans former head coach, um, um, who, uh, oh, Fisher coach Jeff Fisher was there like all kinds of people in the room because of John, like that's who he was. And, um, anyway, he left a legacy behind. He always said he picked up the tab when we ate and he always said it's for the kids.
[00:49:59] Number one. And number two, all you wanted was for people to hear. He just like me. He just wanted people to have the life back that he was given. And so Haraday’s hope is everything after. So we'll, we'll hopefully build our building. Hopefully have a place where we can call home where we will have virtual services, in-person services, meetings, parties, fun, trainings, everything, corporate training, helping companies be equipped for people with hearing loss, going out and do an education at like what we experienced on Sunday at an airport where the security guard was not going to let Lexi go through the metal detector versus the scanner.
[00:50:35] And she called a supervisor and it was very embarrassing for her. Like just better awareness, um, things like that, like all sorts of programming, all sorts of training, academic support. That's a whole other thing, girl. Um, but, um, we need to do better by our kids and understanding them better and their unique needs.
[00:50:53] So Hardaways Hope is all the after. And it's just a seed right now. So we need a lot of funding so that we do the golf tournament. And the fall, and that's the Hardaway’s Hope. And that's an October this year. So, um, all of this will be up on our website soon, but just so you know, like those are our three main fundraisers.
[00:51:12] Um, and we hope to launch the, here, the music concert, national tour, again for fundraising, um, and go across the country. But, um, mostly we get sponsorships for our tour. That's a huge part of our funding, some grants, um, and then annual dinners. So we're always needing cash.
[00:51:32] Carrie: I try. That's a huge part of what you guys do is the fundraising.
[00:51:37] So you can do all these amazing programs that you have. Um, I already launched and, and about to launch. So it just. Totally blown away and amazed by everything that you guys do. And, um, I, I'm glad to have been a small part of that with your last fundraiser, but what people, our listeners today, um, are hearing this and they're thinking to themselves, how do I get in touch with you?
[00:52:04] How do I donate? How do I serve? What would you say?
[00:52:08] Jaime: Oh my goodness. So we love donations. We would take any. And I really do like, I don't, I don't think people understand that. We're truly, honestly, I see my background at Vanderbilt in fundraising was annual giving and we would always say every dollar counts and it really it's true all these little dollars.
[00:52:24] If we have, you know, a thousand people give up $50 or a hundred dollars that adds up. Um, and so. Anytime that you can give, we have opportunities to even do a monthly gift. If that's easier on you. Um, I cannot stress the importance of supporting something that is meaningful to you and that you connect with.
[00:52:44] And then the second part to your point is once we launched this tour, come out when we come into your city or we're near you and come serve with us, we believe it or not. We have a hard time finding people to come out on a Saturday and just talk to people about hearing health. Um, it's, it's Cochlear has been a great partner there.
[00:53:01] Um, and Phonak where they would have a Cochlear has a whole volunteer. Like, I mean, their network is insane. Um, and so they did a great, they've done a great job about helping us have some folks on site at the big events. Um, and I know people are busy, but I promise you every time these volunteers leave.
[00:53:18] They're like, oh my gosh, this has been so awesome. Like this has been so healing for me, you know, I just got to, I'm not just at work. We're telling my story, the same person again. Um, I'm, I'm literally helping change someone's perspective because believe it or not, if you knew how many times we had the wife twisting her husband's arm, like, okay, it's here now.
[00:53:40] You're taking the test. We're good. We're doing this. We're doing this. Um, or, or in honesty. The mom who says my, my child really they've diagnosed him with ADHD, um, all these things, and we haven't been given a hearing test yet. You think that could be something that could be an and there you go, they've got a moderate and one ear and a mild in the other.
[00:54:04] And they're being given, you know, ADHD medications when it could potentially literally be the child needs hearing aids. Um, and so I, I do have to say this because Christine Church, who used to work at Cochlear, um, remembers this story in, um, Chicago, our first event ever. And this woman brought this little boy on who I think the family had little means and he had no speech.
[00:54:31] He was three and a half years old. He failed. He ended up, um, I believe in the Luri hospital system, um, for further services, but he, and, and he was with, uh, his, his parents were deaf. And nobody like, even, even with deaf parents, they truly, honestly didn't understand that this child had hearing loss. It was, it was the craziest thing.
[00:54:54] I was satisfied. I have his picture with me and him. Like, I know I can still see this child. And, um, the grandma was like, I'm here, we're getting this figured out. They're not with me today. So they can't say anything about it, you know? And it was in this child was as happy as can be, but had no communication whatsoever.
[00:55:11] None, no sign language, no nothing. So because no one would simply diagnose. So I get all the time we get that dramatic versus mild hearing loss or unilateral hearing loss and kids, um, which is very, um, underdiagnosed. And so, um, and the adults, I can't even imagine. I can't even tell you, we do the American Legion national convention with veterans who have access to VA benefits and they don't even know.
[00:55:37] And they fail their hearing tests and we walk them literally to the VA and we help walk them through and they come back the next year and they're like, look at me. I got my hearing aids. So anyway, so just getting involved money is super important. We need support financially. If you're a sponsor out there, if you're hearing company in any kind of audio, anything, and you want to get involved, reach me.
[00:55:57] Um, but being onsite with us and watching our events and watching our event page and come in and be with us, it'd be a lot of fun.
[00:56:05] Carrie: Oh, good. Well, I will definitely link your website to the show notes today. So people can just link on to that after they hear the podcast. And I guess just to wrap up, is there anything that I didn't ask you that you want to share?
[00:56:21] Huh?
[00:56:21] Jaime: Well, um, if you don't mind from a mother, I would like, I actually would like to give a shout out to Dr. Emily Lund, who is a PhD from Vanderbilt. They let her keep Lexi as our only, only patient when she was doing her PhD. Thank, thank goodness. Um, oh my gosh. Um, because she was she's amazing and Ginger Jones was actually
[00:56:43] Ginger Jones. She's an audiologist as well, or no, I'm sorry. Speech pathologist. And she was at Vanderbilt too. And she started in practice and it was doing great things with tons of clinics, but we were then handed to Dr. London. Um, she is now at Texas Christian university leading the department and we still go see her and Dr.
[00:57:01] Berger out there. And he's the audiologist. And here's the thing. I learned a lot with this process, and this is something that I want, whether you're in speech or audiology, because they worked together on Lexi's case per se. And this is a part of the Hardaway’s hope that I'm super passionate about when it comes to academic support.
[00:57:18] So we, uh, in about third grade, we started seeing that that's when you go from learning to read, to reading, to learn, obviously, and we started seeing the teachers were coming to us saying, um, we think she has maybe focus issues or ADHD or whatever long story short, I call Emily. And I'm like, I mean, I mean, I don't know what's going on there.
[00:57:43] Should I have this evaluation? And she's like, no, come out and see me and let's start doing, I want to do some, some different things to flag. So she started with a non-verbal IQ test to see where would Lexi be if she was just, um, if she'd been born hearing, like what's her natural intelligence, which was, I was like, I was just, like devastated is a good word.
[00:58:06] I was fascinated. By this thought process, because this is brilliant. Like we want our kids to, like, I think every kid should have this, first of all, because it's like my, like if I know that my child has a natural intelligence within reason, like I want to push them and help them and nurture them, but I need to know where they need support.
[00:58:24] And also I need to know where it's okay, where they don't have to be like everyone else. My son is he's like, he wants to, he loves cars and he can tell you every single part on a car. He can. I mean, he's just, and he's emotionally intelligent. He understands people he's he feels for people, but he works really hard at academics.
[00:58:42] So he's still gets good grades, pretty good grades. But, you know, I don't have me telling him he has to be a 4.2 GPA student at a, at a private school may not be the best thing using my time. Right. So, anyway, so with Lex, so she did this thing and she did say, Lex is naturally pretty, you know, she is an academic.
[00:58:59] And, um, so if we see she naturally, she probably get all A's. She was on the high side of a higher set of average on her, her IQ tests. So then we looked at, so where are the dips? So she started, she didn't just do, like, we're going to do this test, this test, this test, this test, like four tests. And that's what, that's it.
[00:59:17] She started here and if she didn't see any moved on to this next, it was kind of like an if then scenario everything. And then if we've saw a little gap here, she'd say she, she went deeper and she went a lot deeper with that issue. Everything went back to the gap of language and mental fatigue. So I don't the, the Hardaway’s hope is super important to me because our kids, like, I know for a fact what I'm doing with her, with her school grant, when academy and her, she went to a different school for K through five at CPA.
[00:59:47] It's totally different than what's happening and especially public school systems and the attention these kids are getting. And it's frustrating to me because I know that they could be performing much at a much higher rate than I think that because of the support just isn't there. Um, what we identified was basically a personalized plan for her, um, with a set of guidelines for what she needs.
[01:00:10] And again, it went back to language. So we know if she gets an, a grade, she gets a, B, we need to take a little look like, is it her? Cause like Lexi and she likes to take, talk and study, um, and she's has a busy schedule. Um, and then, or is it. You know, is it something more? And then usually, almost always, if it gets to that B to C range, it goes back to language.
[01:00:34] And let me tell you where we've noticed it, the most test taking questions. So with that language gap, number one, my point is, is please. When you guys see these families, there's never a stopping point. Learning language has to be like, you have to pound. I felt like it fifth, it's it? Kindergarten. We graduated, you know, like we're off now, we're off to school and she mainstreamed all this stuff.
[01:00:58] No, please just tell your families, this is a lifelong journey because you'll never, she'll never get those two years back. She don't, you know, by the time she was really processing language and really like going, it was almost two years, let's be honest. And so she'll never get that back. So. Number two, putting on a cochlear implant.
[01:01:17] Isn't like putting on glasses. It's not at schools need to know this. And number three, we need a better individualized plan for these kids based on what their natural intelligence is. And we've noticed Lexi needs most support on the test questions and preparing for tests and things like that. Um, decoding those questions cause she usually knows the answer, but she can't get to it because it's a difficult question.
[01:01:37] So just, um, just continue. Like the kids, I think is still, you know, such a big passion of mine. And I don't know if everyone knows this, but you know, Lexi is, I'm so proud of her. She is the, you know, she was just recently. Number seven in the country, um, in her grad class for pitching and she's on this major travel team.
[01:01:55] And I just received her first questionnaire from a D one school. And she's 13 today. Um, it's super cool. Um, a couple came out a couple of big D1 coaches came out to see her play this weekend she's hurt. So sadly she couldn't perform, but, um, but anyway, these kids should not have a limit. They should have a limit list.
[01:02:17] And, um, I think that if you want to, if you're an audiologist or speech pathologist and you want to get more involved in this Hardaway’s Hope thing, um, contact me. Uh, I hopefully Dr. Len will. Um, I know she, she's so busy and amazing, and I'm going to try to hopefully help this, you know, her roll this out one day across the country, this whole approach.
[01:02:37] Um, she's very busy doing great work there. Um, but I want to say thank you to her and thank you to all our team and you for having us today. Um, if anybody needs me, I love, I love helping people one on one too.
[01:02:51] Carrie: Well, thank you Jaime so much for everything. I love your personal story and your passion and purpose that you have because it really shines through.
[01:03:02] And it's a ripple effect for so many different people, whether they just need to hear more about hearing and hearing challenges or they're a family or a veteran or another individual who does have hearing loss. So thank you for everything that you do. And boy, yeahe 501C3 songs. The sounds. And when you come to Ohio, I'm going to jump on board and be one of your volunteers.
[01:03:29] Jaime: Yeah. We have to give them a shot at, so the Ohio state university, you didn't remind, like we haven't talked about that. My, my I'm a Buckeye and raised 31 years before I moved to south to Nashville, which is where I'm at now. Um, yeah. Shout out to their department. So Dr. Gail whitelaws, we both, oh my gosh.
[01:03:46] Love her. And we just, um, helped a woman. Um, we, we purchased her hearing aids and moved her through. She actually screened on clinic at Easton town center, went on her own, trying to, you know, this again, the care team. If we had made that call, you know, we would have kept her, you know, with us for a while, but she tried some things on her own did not pan out, left frustrated, came back to me.
[01:04:09] She is absolutely loving. She's got the Phonak. Um, oh, the paradise, the latest, like, uh, Cadillacs appear. Anyway, Dr. Gail Whitelaw and her team. Um, they, I asked them to help because I wanted her to be like, I want an eyes on this. She does her hearing loss is a little like. It needed some extra attention.
[01:04:30] And so I called them and Jodi Baxter is very familiar with Phonak system. And so she took care of it and she had a sub like a sublime experience. They were amazing. We actually set our clinic up, um, at a football game each year in the fanfare area and do your hearing screenings and the student audiology department, um, or the audiology, the students in audiology are there and they support it.
[01:04:52] So we love go bucks.
[01:04:56] Carrie: Yeah. And I loved the Gail Whitelaw too. We had colleagues and we actually have a camp tonight that we're doing virtually through Ohio state university, for teens with, um,
[01:05:12] has the parents and I have the kids. So it's going to be a good evening.
[01:05:16] Jaime: Well, next time I want to kind of
[01:05:18] Carrie: camp. Yeah. Well, next year we have to be in person and then you can come to the Ohio state university and we live experience.
[01:05:28] Jaime: So that's Lexi’sdream school actually. So one of, one of her top five, so she's
[01:05:34] Carrie: come to the camp.
[01:05:35] Jaime: Oh my gosh. She has,
[01:05:36] Carrie: she would, we're just going to sign her right now. And 2022, she'd come to Ohio, state by camp and that'd be a great experience.
[01:05:47] Jaime: It's actually, the softball camp is next week, but she can't go because she's still on. She's going to be out on the injured, but they have to do that. So the coaches can see them, you know?
[01:05:57] Um, so yeah, so anyway, so, um, but if it's around the same time, that would be amazing. We'll just stay. There you go anywhere now, the world is our oyster.
[01:06:10] Carrie: Well, thanks again for being on the podcast. And I just want to thank all of our listeners for listening. And if you, um, share this podcast with others, then the others will be able to learn as well.
[01:06:20] So thank you again,
[01:06:22] Announcer: This has been a production of the 3C Digital Media Network. .

Episode 23: empowEAR Audiology - Dr. Rene Gifford

Announcer: Welcome to Episode 23 of empowEAR Audiology with Dr. Carrie Spangler.
[00:00:16] Carrie: Welcome to the empowEAR Audiology Podcast, which is part of the 3C Digital Media Network. My name is Dr. Carrie Spangler, and I am your host. I am a passionate audiologist with a lifelong journey of living with hearing challenges in this vibrant hearing world. This podcast is for professionals, parents, individuals, with hearing challenges and those who want to be inspired.
[00:00:45] Thank you for listening, and I hope you will subscribe and invite others to listen and leave me a positive review. I also wanted to invite all of you to visit and engage in the conversation on the empowEAR Audiology Facebook group. Transcripts for each episode can be found at www. 3, the number three, C digital media network .com under the empowEAR Audiology podcast tab.
[00:01:18] Now let's get started with today's episode. Hi everyone. Welcome to the empowEAR Audiology Podcast. I am really excited for this conversation today. And I'm gonna welcome our guest today, Dr. Rene Gifford. She is a professor in the department of hearing and speech sciences with a joint appointment in the department of otolaryngology.
[00:01:42] She is currently the director of the cochlear implant program at the Vanderbilt Bill Wilkenson center and the division of audiology, as well as the director of the cochlear implant research laboratory. Her current research interests include combined electric and acoustic stimulation with cochlear implants, speech and auditory perception for adults and children with hearing loss and spatial hearing abilities of individuals combining hearing aids and cochlear implants.
[00:02:13] Dr. Gifford's research has been NIH funded for nearly 20 years. She has published over 125 peer reviewed articles, multiple book chapters, and she authored a book now in its second edition and tied on cochlear implant, patient assessment, evaluation of candidacy, performance, and outcome. She was the 2015 recipient of the Louis DeCarlo award, but recent clinical achievements based on her work with hearing preservation.
[00:02:45] Implant recipient. And finally, Dr. Gifford received the 2017 Vanderbilt chancellor's award for research, which recognizes excellence on the part of faculty for published research, scholarship, or creative expression. And she is the 2021 with that being the Jerger, Research career award. [00:03:07] From the American academy of audiology. So Dr. Gifford welcome today to the podcast. I'm so excited to have you.
[00:03:15] Rene: Thanks for having me. This is going to be a lot of fun.
[00:03:18] Carrie: Yeah. So I am really excited. I know we've never met until today in person actually virtually today, but I heard your conversation or your, um, your.
[00:03:31] Presentation at the sound foundation conference, which was just in March. And I was very intrigued both personally and professionally about your research in bi-modal patients. So I'm really excited to learn more about that today. But before we go into that, I always like to ask my guests, how did you get into the field of audiology?
[00:03:55] Rene: Yes. Great question. That is, I love to hear that as well. So mine is a little bit roundabout, as I think many of ours are. I started out as a pre-med, um, GRA know undergraduate student at Arizona state university. Um, I didn't really necessarily know why I wanted to do medicine. I just knew I loved the sciences and I particularly loved physics, um, as a high school student.
[00:04:16] So I knew I wanted to go down that path. And, uh, about two years into the program, I was really struggling to identify major, to go along with all those pre-med curricula and just, I felt like I was floundering. Um, didn't really love chemistry. Didn't do super well in it. And that's such a strong component of, you know, with the medical field.
[00:04:38] So I happened to just take a course in the department. Speech and hearing science at Arizona state, because I grew up next to a speech language pathologist, and I thought, well, let's try that out. You know, it's, it's, it's science, it's interesting. It's helping patients and my intro to communication sciences and disorders class.
[00:04:56] As soon as we got to the section on hearing. I mean, I was done. I just knew immediately. That's what I wanted to do. And it's so funny that it took me that long to figure it out because now here I am. Um, I'm nearly a junior undergrad. I did not have a major. And, um, the weird thing is I was raised by my grandparents.
[00:05:15] So my grandparents, um, from the time I was one year of age and my grandfather was a world war II veteran. He was in the 82nd airborne division a paratrooper and he received a purple heart. He had actually been shot down over the battle of Sicily and due to that, he had lost nearly all of his hearing in one ear.
[00:05:35] And he had a very steeply sloping, a precipitous hearing loss in the. So, as you can imagine, um, he struggled a lot. He was told for years by, you know, ENT audiologists, that there was nothing medical or surgical that they could do to help his hearing. And they were absolutely right at the time. Um, and then, you know, you tried number, hearing aids.
[00:05:55] Doesn't work so well for that type of hearing loss. And I just remember spending my entire life from the time I was maybe two or three. I remember having to grab a chin and kind of like moving it like, oh no, listen to me. I, you know, we're, we're talking now and having to, you know, really help facilitate effective communication.
[00:06:12] And so as soon as. Found this field, which I just absolutely love. Of course I was meant to do this. And, you know, and of course when my grandfather passed away in 1993, um, actually just before I switched to this major interestingly, and so I really felt like the timing was just absolutely perfect. And, um, while I wasn't able to necessarily help him and he wasn't able to get the, you know, the benefits that he needed during his life, I really sort of feel like this is me kind of giving back to, um, to them and, uh, for everything they did for me,
[00:06:43] Carrie: Wow.
[00:06:43] That's an incredible story of how like the little seeds in your life get planted over time and then it comes to fruition. So, wow. That's so heartwarming. And then, so then you ended up switching your major about your junior year and undergrad and decided audiology is your route and where you need to end up.
[00:07:05] So what was the next step then?
[00:07:08] Rene: Yeah, so what I knew I needed to, to pack my schedule, right. Because now when you're a junior and you're switching majors, I had to take a lot of prerequisites. Um, and so I took like the full 21 credit hours every single semester to make sure I graduated in four years. And one of the things I knew of course, we'd have to go to graduate school at the time.
[00:07:26] That was the master's degree. And so I knew I needed to start doing some volunteer work. Um, which I did anyways, but I hadn't done any in this specific field. So I, um, I did some volunteering work in Michael Dorman’s lab at Arizona state university. Who many of you know is, um, someone who has a long standing career in cochlear implant research.
[00:07:46] He's a speech scientist by training. Um, and I also did some volunteering in Bacon's lab who, um, the late physician, who is a psycho auditory condition who mostly focused on individuals with mild to moderate hearing losses, but very applicable, you know, hearing scientist, um, in the field. And so the interesting thing is, you know, I spent.
[00:08:06] Two semesters working alongside Michael Dorman as an undergrad. And it still didn't occur to me that I want to work in cochlear implant research until after my PhD. So I knew from there, I want to do research. I loved, you know, getting in there and playing around with like, When you form generators and looking at a scopes and checking on stimulate, and it just, I just loved it.
[00:08:27] Um, and so I, uh, did my master's degree audiology at Vanderbilt here in Nashville. Uh, went back to Arizona state, got my PhD, um, in the laboratory of David Bacon. So basic psychoacoustics normal hearing, mild hearing impaired, you know, like I, it was very, um, basic experimental psychology essentially. And then, um, The end of my PhD studies, I was having a conversation with Michael Dorman in the hallway.
[00:08:54] And he mentioned at the time he said, you know, there's this new surgical technique and there's this new implant where they're putting cochlear implants in patients who have. Good, low frequency hearing and they're able to preserve it. And now these people are listening with hearing aids and cochlear implants.
[00:09:11] And it was, again, one of those, like your moments where I knew, of course that's what I want to do. And, um, so I had about six months left in my PhD program. So I was finishing my dissertation, wrote a proposal to, um, look, you know, study these individuals and look at how they integrate electric and acoustic hearing coming from the same year and across ears.
[00:09:32] And, you know, I've never looked. So that was 18 years ago and I am still hooked on this, this topic and, um, just dedicate it to helping people hear better. Combining hearing aids and implants.
[00:09:46] Carrie: Wow. All of your undergrad and a master's experience and the people that you got to study under it really kind of drove you to this research and still involved in.
[00:09:59] And that's why I'm so excited to ask you these questions today, because from a very personal perspective and just getting a cochlear implant in 2019 and being a bi-modal recipient. And I think it's interesting to hear. Yeah. Search and then, uh, kind of reflect on my own personal experiences too, of what you find in your own research.
[00:10:20] And I'm like, yes, that's right. That's what, that's how I feel. So could you just share a little bit for our listeners today? Who might not know? Or can you just defined What a bi-modal, what bi-modal means.
[00:10:35] Rene: Yeah. So, um, by modal, I mean, it's sort of just a made up term, just means two modalities. And so in that particular concept, it typically is referring to individuals who have a hearing aid on one side, a cochlear implant on the other, but because it's just two modalities, technically it could also apply to individuals who have acoustic hearing preservation in the implanted ear and are combining electric and acoustic hearing that way.
[00:10:58] But that's not typically, usually when you see the term bi-modal it's meaning, you know, electric only on one side. Acoustic only on the other.
[00:11:06] Carrie: And so you've said you've been doing this research for about 18 years. And so what have you seen over time from that beginning of the 18 years till now?
[00:11:19] Rene: Oh, it was just so much fun.
[00:11:20] Yeah. So, um, in the beginning, I agree, this predates me a little bit, but I remember when I was a master student at Vanderbilt and we would talk to people who were getting, you know, interested potentially in cochlear implants, which was a very small proportion of our patients at that time. Um, but the advice that was given by most centers at the time was, you know, if you have a hearing aid that you're still wearing on the other side, It's recommended that you stop wearing that because you know, the brain's not going to know what to do with these two very distinctly different signals.
[00:11:51] And we need to really strike them that auditory pathway on the newly implanted side. But people started to learn pretty. Well, I wouldn't say quickly, but you know, over a course of about a decade that there weren't any data that were really driving that clinical recommendation. And so, and a lot of people started to notice, you know, when I wear my hearing aid, I'm actually feeling like I'm hearing better.
[00:12:13] I'm utilizing that more natural sound, quality, the acoustics of, you know, the lower frequency speech that I can't necessarily get from my cochlear implant and, um, the research and bi-modal hearing. And, uh, you know, bi-modal auditory perception really started to explode in the early two thousands. And it was quite clear from that point forward that, of course, this is what we should be recommending, you know, we should absolutely be ensuring our patients are using all of the hearing technology that potentially can improve their outcomes.
[00:12:42] And of course, most of this in the early days was pre bilateral. Um, in fact, I remember in my postdoc, there was talk amongst the lab that, Hey, there's a new bilateral cochlear implant recipient in California. We should try to get them to come into the lab. Like it was, you know, like one in the world kind of thing.
[00:13:01] And, um, and then you'd hear of another and then another, and then, um, It was exciting, but, um, so I got to sort of witness the, you know, the evolution of hearing preservation, cochlear implantation, widespread adoption of bi-modal hearing, as well as the, um, the adoption of bilateral cochlear implants and the transition to that being sort of considered the standard of care.
[00:13:26] Carrie: Yeah, so that I have so many questions, but I guess my first question would be about bi-modal and bilateral. And that what point from a research perspective, a clinic perspective, are you recommending or starting to plant that seed with patients? Okay. Didn't, you know, bi-modal might be your way to go or bilateral might be a better way to go.
[00:13:51] Rene: Yeah. So are we focusing primarily on adults right now? I
[00:13:55] Carrie: would like to start with, let's start with adults.
[00:13:58] Rene: So with adults, obviously, um, it's our goal to always talk about really what's the appropriate or the recommended intervention for each individual ear, right. Because we want to make sure that we're optimizing that hearing for that individual.
[00:14:11] So, um, we typically. From the minute I see them in the cochlear implant clinic, I'm going to assess each year individually, uh, with, you know, air audiometry speech. Audiometry. And then of course, with fitting, you know, the appropriately fitting hearing aids and looking at eight at speech recognition on both sides, as well as in the bilaterally aided condition and right from there, if someone technically meets the criteria for a cochlear implant in each year, we're going to discuss that.
[00:14:37] I'm going to say, you know, to that individual, you know, look, it looks like you really do meet the criteria for both ears. However, we do often recommend unless someone has, you know, profound hearing loss across all frequencies. Um, it has an, or had a very sudden onset. We definitely in the adult population are recommending that people start with a single implant and utilize the bi-modal hearing configuration because there's tremendous amount of benefit.
[00:15:04] Um, as you know, You know, that hearing configuration, having the ability to, uh, combine what you can't get from the implant, with what the implant really does a great job, which is audibility across the entire frequency spectrum. And, you know, the brain is just a remarkable, um, it's just remarkable organ and it has it's, you know, we see this neuroplasticity that happens very rapidly following activation of the device and having.
[00:15:30] Low frequency, more natural sound quality from the hearing aid ear really helps sort of drive their ability to use that new found signal. So that's kind of what we recommend, but we also sort of make sure that they know really from day one, that technically both of your ears are considered candidates for an implant, but we're going to start with this hearing configuration and then we'll readjust, or, you know, kind of reassess in, you know, 3, 6, 12 months.
[00:15:58] Um, and then of course, many of our adult patients retain that bi-modal hearing in fact about 80% of our adult population, at least at Vanderbilt, um, does retain bi-modal hearing. They, they just do so well with that combined configuration. Um, but it's the flip side on the pediatrics, our pediatric population.
[00:16:16] It's more like 80, 85% are bilateral and then the rest are bi-modal.
[00:16:21] Carrie: Okay. So though, a point maybe going back to adults where. Maybe an adult, like after 3, 6, 12 months, do they say, you know, the hearing aid, I take it off and I don't really use it that much. Is that kind of a tipping point where you're like, maybe you might want to consider bilateral cochlear implants.
[00:16:44] Rene: Yeah. So it definitely, I would say that a lot of the times it's patient driven, which isn't necessarily a bad thing, which I'll get to in a moment. But a lot of times I can sort of almost tell what, which path someone's going to go from that one month appointment. So I'll have some people who come in and they immediately go, okay, let's start talking about when we're going to get the second implant.
[00:17:03] You know, they just, they just know like, and these are often people who were very adamantly against it in the preoperative time point. Um, whereas some people will show up, you know, for that one month appointment. And they'll say, you know, I'm just shocked at how well I'm able to, you know, use the information from these two signals.
[00:17:19] You know, on the first day it sort of felt like I was hearing these. It's almost like two different. Uh, you know, completely different sounds and now it sorta sounds more natural. And so those are the people I started to say, okay, they're really adopting this technology. They're doing really well with it.
[00:17:34] We'll continue to assess. And of course, if hearing is lost in the non implanted ear, or if that ear, you know, is the speech perception drops dramatically, we might have a different discussion, but, um, we do tend to find that our patients are. Very, um, they're very good at identifying what they need. Um, in fact, uh, Michael Dorman and I have a paper that we published in 2019.
[00:17:58] Well, we looked at, I mean, close to a hundred people, um, that were broken down into bi-modal adults and bilaterally implanted adults. And we looked at the bi-modal adults and we basically did all of these tests on them. Laboratory-based tests, spatial release from masking speech perception, all these different things, um, in an attempt to try to figure out when would it be best to recommend that someone definitely, you know, pursue that second implant.
[00:18:25] Well, we didn't really find that there was anything dramatically, um, useful, at least not on the clinical measures. We found some, you know, more laboratory-based measures that you use multiple loudspeakers. Um, however, the one thing that was very, very sensitive and, um, was really highly correlated with the laboratory measures was asking him a simple question, which was, do you think you need a second implant?
[00:18:49] Okay. If the patient said yes, I think I do. It was more likely that yeah, they were actually not showing great benefit from that bi-modal configuration. Whereas those that said, no, I think I'm doing well with my current technology. They were absolutely right. So I think that that just kind of really reinforced my, um, what I kind of thought all along.
[00:19:10] But, you know, patients really do know what's best for them, for the most part, and really want to listen to them and take their guidance.
[00:19:18] Carrie: So on the flip side, that thinking about it. Good. And kind of, you said, you know, about 80, 85% bilateral cochlear implants and only about 20% who stay bi- modal. Is there a different, I guess criteria?
[00:19:33] Yeah, a thought process when you're looking at bi-modal versus bilateral for kids. Oh, I
[00:19:39] Rene: love this. Yes, there is. So, as you mentioned with pediatrics, the indications for cochlear implantation are actually quite different than they are for adults. And so on the pediatric side, at least the FDA labeling specifies profound, bilateral sensorineural, hearing loss, um, or severe to profound for children who are two years or older
[00:20:00] So that's in contrast to the labeled indications for adults where both cochlear and Medicare specify, moderate sloping to profound for adult, um, you know, bilateral sensorineural hearing loss. So we're already dealing with a population that has much more severe hearing loss for the most part. Um, on the pediatric side.
[00:20:20] Um, now granted we do get some children that are referred in that are more kind of, non-traditional maybe a little off label, better hearing in the low frequencies. And we're certainly trying to expand that referral base because we know a lot of children in that particular category would do better with a cochlear implant.
[00:20:37] But the reality is it's. Pretty, uh, you know, small proportion of our patient population on for our children receiving implants. So that's one of the reasons that we typically the children that we see are presenting with bilateral severe to profound sensorineural hearing loss, for which we know that bilateral cochlear implants is absolutely going to be, you know, standard of care, giving them the best option for maximizing their auditory potential.
[00:21:01] Carrie: Yeah, that makes, that makes a lot of sense. It'll just be interesting with your research moving forward. And I know we kind of always start with adults and see how they do, and then it kind of trickles down to the pediatric population, but what would this conversation be? Five or 10 years from now when absolutely about pediatrics.
[00:21:20] Yeah, I, I,
[00:21:21] Rene: I really, I, I, one of the big goals of my career is to expand criteria for pediatrics, because again, we, there are, there's a growing literature base of children who are, you know, better than severe to profound in, um, in the implanted ear and who are just, you know, they're deriving tremendous benefit from this cochlear implant.
[00:21:40] And so my goal hopefully is to really, if we can't get the labeled indications changed, if we can get more and more providers, you know, ENT audiology, To refer those children in for an evaluation, because that's the thing. I think a lot of providers are really more reluctant on the pediatric side to recommend someone because they might be getting some benefit from their hearing aids, but maybe it's not going to be the amount of benefit they could get when paired with a cochlear implant
[00:22:07] Carrie: Yeah. So do you see any disadvantages that you found with bi-modal patients or here.
[00:22:17] Rene: Yeah. So there are, there are a few, um, some disadvantages for bi-modal hearing and it's primarily related to more spatial hearing in general. So, you know, I'm, I'm kind of a binaural person. That's the thing I'm really interested in, in my research and the cues of course, that we use to orient, to sounds in our environment, to, you know, for spatial abilities.
[00:22:38] Interaural level difference cues as well as interaural time difference cues. So of course, sounds are hitting our head at various different times from where they were oriented in space and we are primarily using interaural time difference cues for lower frequency sounds and interaural level difference cues for higher frequency sounds.
[00:22:59] Now, the here's the thing though, is that. interaural time differences. We need access to bilateral acoustic hearing to be able to take advantage of those because our nervous system, our neurons have this ability to sort of fire on about the same phase of an incoming stimulus and it's called neural phase locking.
[00:23:17] And that allows our system to basically, um, identify immediately what's the, uh, where the sound originated from. What's the frequency of that sound and our it's just it's like instantaneous. Okay. The sound originated from the right and it was someone. Yelling my name. So immediately when you have bilateral cochlear implants or bi-modal hearing, you don't really have access to the interaural time difference cues because the cochlear implants don't preserve that fine timing information in their envelope based signal process.
[00:23:47] Um, so what they can use is interaural difference cues, which are most robust in the higher frequency region. Now they're present in the lows, but it's, you know, a few DB in magnitude, whereas at four and eight kHz, we're talking like 20 or more DB of a difference across the ears. And so bilateral cochlear implant recipients have access to ILD because they have high frequency audibility in both.
[00:24:13] Yeah. Whereas if you're bi-modal the typical bi-modal patient has, you know, good audibility across all of the frequencies in the implanted ear, but the non implanted ear tends to have a sloping hearing loss for the most part. You know, some people have flat losses, but with those sloping losses, we're just kind of getting audibility in the non implanted ear.
[00:24:34] And so that leaves that individual without, you know, a good ILD, um, sensitivity. And so what we found is that individuals like that do tend to struggle a little bit more in us, you know, localization where a sound's coming from spatial release from masking. Um, as well as in conversations where, you know, this has been a while since we're coming out of a pandemic, but think about being like at a, you know, a holiday party or at a, you know, group dinner.
[00:25:01] This person talks and then someone across the table and the other side interjects, and then this person over here, and you'd have to sort of follow that conversation. Um, that's going to be a little bit more difficult to do in a bi-modal hearing configuration where we don't have access to those high frequencies.
[00:25:17] Um, but you know, the nice thing is we, we know, um, that where we need to kind of sit and orient ourselves in conversations to optimize the hearing abilities that we have. It's just that. It's less of a need to do that when you have bilateral cochlear implants or bilateral acoustic hearing. So, you know, for example, in cases of cochlear implantation with acoustic hearing preservation, which of course is another great love of mine.
[00:25:45] Carrie: Yeah. Well, those are some of the things that you said. I feel like I'm experiencing now as a bi-modal user. And just for example, of like being in a more noisy kind of place. Kind of situation. I noticed that I really have to focus more on, you know, okay. You need to be on my good side. Do I need to really follow the conversation in that respect too?
[00:26:11] And I think what I've noticed. The most is, I feel like I have become more of a unilateral, um, user, because my implant side, like you said, gives great audibility across all of the frequencies. So that seems to be my more, that my stronger ear. But then I love my hearing aid side, but the acoustic aspects that you were talking about, so that natural aspect of speech.
[00:26:37] Um, but yeah, I never before would like tell my husband, like, you need to walk on this side of me, not on this side. And now it's like, he's like, oh wait, like, which side is which side should I be on now? So kind of this whole other evolution, you shouldn't have a conversation that we have to go through.
[00:26:56] Rene: Yeah, that's a great, I love how you brought that in.
[00:26:58] And that's, that's the one thing, you know, we found in this paper from 2018 that, um, we looked at a group of bi-modal adults and a bilaterally implanted adults. Um, they both performed very similarly. It's just that when speech was roped randomly, you know, from like zero or plus, or minus 90, when it was over to the poor ear, which for the most part was the hearing aid ear.
[00:27:19] Right. Our bi-modal participants were at a significant disadvantage, whereas bilaterally implanted adults, it's almost like they didn't have a better ear, you know, so, you know, preferential seating and sort of organizing where I'm going to stand relative to others just is not as much of a concern when you have bilateral.
[00:27:37] Carrie: Yeah. It's like, do you give up something to gain something to trade. Which I thought I would ask? Uh, just another question that has to go along with bi-modal users. Do you feel like programming? Um, the cochlear implant and the hearing aid are the different. Techniques that you utilize, or you have found that help.
[00:28:01] I don't want to say even it out, but kind of, uh, make sure that they compliment each other.
[00:28:07] Rene: Oh, great question. Yeah. For the most part. No. So there's a lot of, um, there's been a few studies that have come out in the last few years that kind of looked at, you know, what's the best way to program the hearing aid for someone who's listening by readily.
[00:28:19] And the reality is there's no real evidence that, you know, for example, NAL and a one versus versus DSL for adults, or it's sort of like, if you can just make sure that you have audibility in the frequency region over which they have the capacity to have audibility. That's going to give them the benefits.
[00:28:38] So that's, you know, I, I sort of, don't worry too much about picking one particular, you know, target. However, one thing we have found and it's in a relative minority of individuals, but we, um, in the lab, we routinely check for cochlear dead regions and then anytime there's acoustic hearing. And so if people are not necessarily familiar with that, it's just, of course, as you know, a region of the cochlea where there's little or no surviving inner hair cells So, um, so basically if you try to provide, you know, acoustic transmission, that range, it's just not gonna make it to, uh, those primary auditory neuron, because there's no inner hair cells, which are the primary afferents, um, in the auditory system.
[00:29:17] So, um, what we have found is that when patients have a region of cochlear dead regions, but yet we still have, you know, aided or we still have unaided audiometric detection there, which is of course, for the most part due to off frequency listening. Because we're just providing a we're driving that basilar membrane, and providing a lot of a high sound level that they can hear on the tip of the tail of that traveling wave.
[00:29:42] Um, but when we, when I see someone who has a very, you know, distinct cochlear dead region, we do start to play around a little bit with maybe restricting the frequency region of the hearing aid ear. Um, and we do have a paper that came out. I don't know about five or six years ago where we looked at a group of people.
[00:29:58] And when there were a cochlear, dead regions, and we restricted the frequency region, we did see a significant improvement in their ability to combine across those two ears. Whereas if the patient didn't have a dead region, And where you restricted the frequency region. They didn't show a benefit.
[00:30:16] And in some cases they showed a detriment in their performance. So I don't recommend this as kind of a blanket thing that we do for everybody. You know, like for example, all right. Anybody who has a threshold of 80 dBHL. Don't even try to amplify it. We don't do that. So we look and see really, is there a region where there's little or no surviving inner hair cells?
[00:30:36] And if so, we do experiment with restricting that range. And I've seen in some cases where you see acute benefits, you know, so we'll restrict the hearing aid, um, frequency response, and then put them back in the sound booth and their performance goes up dramatically. We typically, you know, we don't see that all the time.
[00:30:55] Um, but often in those cases we also see dramatic reports of improved sound quality. So that's something that I think could really be value added in our clinical audiology practices.
[00:31:07] Carrie: Yeah. I was just always curious. Cause we were playing around with my different hearing aid settings too. Just to see if there is one that kind of complemented or I felt like it complimented better than the other and it was just, just trial and error.
[00:31:24] Okay.
[00:31:25] Rene: Cause I really love to hear if there was anything specific that you felt really worked well in that configuration.
[00:31:31] Carrie: Yeah. No, and I. My, I don't want to say problem, but the, you know, technology and, and growing up with hearing loss, I mean, I was initially with analog power hearing aids, so I've always been a very much of a, more of a.
[00:31:48] peak Clipping, um, analog music. So like my switch to digital hearing games was very hard. So I don't know. I think I make sense of a lot of distortion of information in order to have more clear signal that if somebody was getting hearing aids today for the first time you would program it a lot differently.
[00:32:10] Sure. Right. Yes. So, so kind of going, um, back just a little bit. I would love to hear. More about your research and your experience with hearing preservation. Yeah. So
[00:32:26] Rene: I, this is something I just feel so strongly about and love so much. And, um, so I, thankfully, you know, I'm at a center where all of our surgeons really approach every surgery as if it were hearing preservation surgery.
[00:32:40] So, I mean, the goal of that of course is minimally traumatic, you know, surgical approach. Um, for example, limited drilling and. So using the round window, if at all possible for electrode, insertion, um, and, uh, you know, really kind of picking and choosing the, the cochlear implant electro array that you would use based on the patient's own anatomy and approach.
[00:33:01] So, um, so thankfully, so I remember back when I first started my post-doc in December of 2003, you know, the, the men or people. In the world, but here in preservation, I mean, you could probably count it on, you know, your hands. Um, and at that, at that time, most of them were in Europe where, you know, they weren't sort of regulated by, um, FDA.
[00:33:23] They had their own guidelines, they could do their own thing. Um, and we have a handful in the U S particularly those coming out of the university of Iowa because they had the hybrid clinical trial there. And, um, So I went from seeing, you know, hearing preservation patients who were, you know, very, very few and far between and hearing preservation rates being pretty low, you know, because this was a new technique and this was a new way to think about, um, cochlear implantation and, and, you know, audiologic, and otologic management of our patients to the point that now we've looked and we're getting, like, seeing that, you know, up to 90 to 95% of people who have hearing going into surgery, Do you have some degree of preservation postoperatively now not everybody's going to have usable or functional acoustic hearing preservation, but it is just so exciting to see that, you know, the, the electrode arrays are less traumatic.
[00:34:15] The surgeon, you know, the surgical techniques are improving. Um, we're learning more about the use of steroids for anti-inflammatory anti-inflammatory responses and, and potentially helping. You know, that preservation and the benefits that we see from just combining that acoustic hearing in the implanted ears.
[00:34:34] And I say yours because we know about, you know, more and more people are getting two implants and have acoustic hearing preservation in both ears, but it is just such an exciting thing. And to see that all three of the FDA approved systems have integrated EAS technology. Yeah, yes. Technology, you know, which allows like a hearing aid and an implant processor in one, it's just something I would have never, ever, you know, even dreamed of when I first started working in this field, um, you know, we used to split them with its along with the behind the ear, sound processors and talk about cumbersome.
[00:35:08] Um, and, and now it's just, you know, a Ric system or an ear mold on the middle system. There you go off you go. It's it's just, I just love it.
[00:35:19] Carrie: Yeah, it's amazing. And then your point about, from a patient perspective, I love the fact that. Even though it's not per se usable speech hearing, but to have awareness of sound when I don't have a device on is really powerful, like at night and you know, I wouldn't, I can still hear the dog bark, so it's different low-frequency information.
[00:35:45] And I know that's going to be different depending on the amount of hearing that is preserved, but to have that awareness is kind of. I guess, I don't know. It just. More like a safety net for
[00:35:58] Rene: me oh, absolutely. That's I mean, that's a big deal and I can understand, especially when you go for example, to bilateral, right.
[00:36:06] Because one of the things, you know, I did mention we're up to 99 to 95% of people being able to have hearing preservation, but that's not necessarily for the longterm and it's not something that we can guarantee, you know, everyone's body and physiology has a different sort of. Uh, an inflammation, response to surgical trauma and, and, um, and that, and so we just can't, you know, reliably predict who's going to have hearing preservation.
[00:36:31] And like you said, I mean, there's definitely a safety component and, and just sort of peace of mind in general, right? Like you said, you take your processor off, you can put earbuds in, you can hear your dog barking, you can. It's just, you know, you don't have to necessarily rely on just one side and make sure you hear one.
[00:36:47] Cause you got hearing in both years. So I think that's, you know, it's something that we. Um, I definitely appreciate when we're making these, you know, clinical recommendations to our patients and something that I know myself I would want to have as well.
[00:36:59] Carrie: Yeah. I mean, that was certainly something that when I was making the decision was a plus, um, knowing that, Hey, there's a possibility that you can still have hearing in that ear.
[00:37:11] And it helped a lot with that decision too. And yeah. Yeah. So, um, one other question that I kind of had, we were talking at the beginning about how your brain is so amazing and it can integrate that acoustic signal on that electric signal. Is there anything that you, or at Vanderbilt that you are recommending and for your patients to help drive that integration a little bit quicker, uh, so that your brain adapts to those bi-modal signals?
[00:37:44] Ah,
[00:37:45] Rene: great question. Yeah. So there is actually, and it's nothing that's particularly exciting or fancy it's, um, it's just wearing the devices. And so, um, one of my colleagues, uh, Dr. Jordan Holder, who's now, um, on faculty at Vanderbilt, um, for her dissertation, she was looking at. Basically the, the causal, the potential of a causal relationship between cochlear implant, wear time, which we get from data logging with our, with our cochlear implant systems and how much benefit one would get on measures of speech understanding.
[00:38:17] And for years, you know, we, you know, as audiologists, we've told people for years, you know, you have to wear your, your devices. That's the only way you're going to get better. Eyes open ears on that sort of thing. Um, but we didn't, you know, it made sense at face value, but we didn't necessarily have evidence to support that.
[00:38:33] And then about 20 years ago, uh, hearing aids came out with data logging capabilities, and we realized that people weren't wearing the hearing aids as much as they had, you know, suggested they had been. Um, and then later on, we got data logging in, in cochlear implants and then a number of studies have come out as you know, that have shown this correlation between.
[00:38:52] You know, average daily wear time and auditory performance, but we never really knew, is this a, is this a chicken or an egg thing? You know, is it something like someone who gets their implant and does well, of course they're going to wear their implant longer or is it really, they wore their implant longer and they're doing well.
[00:39:08] So, um, as part of Jordan's dissertation, she, um, brought in a group of adults who had all been using their device for a minimum of. 12 months. So these are people, you know, experienced cochlear implant users, and they all had to be wearing their devices less than 10 hours a day, so that there was room to sort of improve, right?
[00:39:26] Because if they came in wearing the device 16 hours a day, we wouldn't want them to sacrifice sleep time, you know, just to improve their, or increase the wear time. So they were all instructed to wear their cochlear im;ant as much as possible. But the goal was for them to increase their daily wear time by a minimum of one hour.
[00:39:45] Minimum. So, um, with these 20 people, uh, she did find a significant correlation. And in fact, she saw that for every one hour you can improve or increase your daily wear time that translates it to a seven percentage point improvement for sentence recognition in noise. Which is the most difficult situation that we have.
[00:40:06] Right. So to put that into a little bit more clarity, so let's assume that someone came in wearing their implant 10 hours a day, and they were able to increase to 15 hours a day, which would be close to, you know, kind of all, all day, um, that person would be expected to improve. 35 percentage points for speech recognition in noise, which is quite dramatic.
[00:40:29] And it was also shown that it, we believe anyways that the, you know, the, the driving mechanistic factor might be their ability to, um, parse out the individual frequency components of that signal and something that's happening from like a neuroplastic, you know, compensatory, neuroplastic perspective. So, um, so Jordan Holder's going a little bit more down that road.
[00:40:52] Kind of, you know, investigating a little bit more of the causal link and I'm going in a slightly different direction and really trying to describe those neuroplastic changes that are happening from a audio and visual perspective, following cochlear implants, uh, and we're using, um, a relatively newer tool functional near infrared spectroscopy or , uh, to look at this and, um, pediatric and adult cochlear implant patient.
[00:41:17] So you have to stay tuned, but yeah. Um, where it gets your, get your hearing aids, get your cochlear implants and wear them as much as possible.
[00:41:26] Carrie: And do you ever recommend, like, even just for a therapy kind of perspective, just listening with the cochlear implant, just so that your brain is like, okay, this is what that signal is.
[00:41:37] Rene: Absolutely. Yeah. So this is one of the things another where we recommend, you know, auditory training or rehab at could, because at face value, it makes sense. Um, but similarly, we don't have a lot of, um, evidence in the peer reviewed literature anyways, that is really, you know, rigorously investigated the effectiveness.
[00:41:57] A specific or type of auditory training, at least in the adult population. Now, of course, that doesn't mean it's not a good thing to do, but I definitely think we as audiologists and hearing scientists and otologist, we really could stand to benefit from, you know, rigorous prospective studies that are looking at the effectiveness of various different types of auditory training, uh, dosage.
[00:42:20] So is once a day for an hour. Good enough. Do you need more maybe? Just a few hours a week is enough. Um, and really to identify because, um, you know, in many other areas of the world, our auditory training is just considered a given when, you know, even when adults get cochlear implants and in the US we don't really necessarily do that.
[00:42:40] For better or worse, but, um, you know, I would love to see the outcomes of, of some studies that have looked at that because it's, you know, I can say that anecdotally, at least the patients of mine who commit to doing this do tend to be my better performing patients. But again, is it a chicken or egg thing they're doing better?
[00:42:58] So they're motivated to do these exercises versus those who are struggling and they say, yeah, forget it. So,
[00:43:05] Carrie: yeah. Yeah. From my personal perspective, I think we, we definitely need more work in that area. And I think for me, at least, I was just blessed that I had a therapist who was one of my professors when I was in grad school.
[00:43:22] And I have kept in touch with her, but she was an auditory verbal therapist. So she said I would love to work with you. And so her name was Dr. Denise Wray. And so we, we have just been meeting like on kind of a weekly or biweekly every other week basis. But I think from a patient perspective, especially at the beginning, it was.
[00:43:46] Almost that coaching perspective of being like, okay, she's documenting this and she's seeing the little small changes. Again, motivated me to be like, okay, I'm going to continue this on my own. So that next time I see you, I might perform better. So it was almost for me that coaching auditory therapy was a huge component of me kind of mixing, you know, getting the signals together.
[00:44:15] That's the other thing. Yeah. The other thing that I love to do. And I just coined it, my, my own name and I call it bi-modal switching. So I like to sit outside and just kind of be mindful of what's going on in the environment and just flipping my magnet off my head and listening and just kind of taking them.
[00:44:38] You know, what's happening in the environment and I'm putting the magnet back on and seeing what sounds end up coming in. And so I don't know, it just, for example, like sitting on the porch and hearing the wind chime when I take the magnet off, the wind chime was gone when I put it back on, it comes back.
[00:44:57] So it just kind of brings in. Well, it makes you aware of what you're listening to with your hearing aid only, then what you gain with your cochlear implant in that situation. So,
[00:45:11] Rene: yeah, I mean, that's like, you're, you've sort of inventing your own like perceptual training, um, types of paradigm, right.
[00:45:17] Where you're sort of. Okay. I'm going to teach my brain that this is what I gain when I add the implant to my acoustic hearing. I love that. Is that something that you would recommend to, to patients who are, um, pursuing cochlear implantation?
[00:45:32] Carrie: I would. I call it bi-modal switching and I think it just lets you.
[00:45:38] Experience everything that you haven't heard and jotting down those different sounds that you hear and, and, um, experience on a, on a daily basis. So another motivation tool, I think
[00:45:52] Rene: too. That's great. Yeah, I might, I will, of course cite you on that, but then encourage my patients to also journal, you know, to say like, what is the additional added benefit that you get?
[00:46:02] Because you know, it really makes them more mindful of the process.
[00:46:06] Carrie: Exactly. So this was an amazing conversation. I'm so glad that we're able to have this today. Is there anything that I didn't ask you that you're like, I want to make sure that listeners hear about this.
[00:46:20] Rene: Yeah. So the only thing I think I would want to just say is that, um, we are still at, you know, on the adult side, we're still only getting about 5% of people who actually could benefit from a cochlear implant are getting them.
[00:46:33] And, um, you know, we just, as we have to do better at getting more people in and taking advantage of this really life-changing technology that could really benefit another thing. When we tend to see at least on the adult side, when someone actually initially presents for a cochlear implant evaluation, for the most part on average, that patient has been a candidate for 10 to 12 years.
[00:46:55] So again, you know, we get this one shot to do this, and I really want this. Take advantage of this and in getting these referrals in much, much more earlier than they're doing right now. Um, the second thing of course is that I want to see more and more referrals of people who have, you know, residual hearing in the lower frequency region, because as you said, you know, we can.
[00:47:16] We are actually able to preserve acoustic hearing, um, in most cases, most cases. And even if we don't, which of course is not our goal, but you can still combine that electric and acoustic hearing across ears in a bi-modal configuration. And I can tell you that I have not met a single person who has said, well, I really regret getting this.
[00:47:35] You know, it's almost like as soon as they get it, they say, why didn't I. Five 10 years earlier. So that would be my recommendation. Um, and, and then third, let's get more and more children in the door who have maybe these non-traditional, you know, hearing losses, non-traditional cochlear implant candidates. If a child is struggling to, um, for, you know, with socialization in, in school and, and understanding and various different, um, listening environments dependent on their FM or their, you know, remote microphone system, uh, and really struggling.
[00:48:05] Um, it has speech production, um, delay. I say that it's at least worth a referral. We might not necessarily recommend a cochlear implant to start, but it's, it's getting that conversation started with that family so that we can really be helping more and more people than we are.
[00:48:21] Carrie: Yeah, no, those are all great ending points.
[00:48:23] And I agree 100% that the referral process shouldn't be thought of as a last resort. And I think that's where a lot of our, especially in the adult population, if they're seeing an audiologist who is fitting for their hearing aids, maybe that audiologists doesn’t realize that the cochlear implant process continues to, uh, I guess candidacy continues to change and.
[00:48:48] It takes, I mean, I know it takes a while to make that decision. So if we don't start planting the seeds a lot earlier and having that conversation a lot earlier than that, that delays the process too, because from a patient perspective, you still need to go through all of the emotional journey that it takes to get to that decision-making process.
[00:49:08] Rene: Absolutely. I, you know, I was encouraged from the moment hearing loss is diagnosed. Start having the conversation. This is the hearing healthcare continuum. We start with hearing aids. We have additional, you know, um, FM remote microphone systems. We might transition to various different types of auditory implants.
[00:49:24] Like you said, it's not a failure. It's not a last resort. It's just one of the options on that continuum.
[00:49:31] Carrie: Well, thank you Rene for coming onto the empowEAR Audiology Podcast today. It was a great conversation and I really appreciate your time today. Thank you.
[00:49:42] Announcer: This has been a production of the 3C Digital Media Network. .

Episode 22: empowEAR Audiology - HearStrong: Juliana and Andrew Herbert

Announcer: Welcome to Episode 22 of empowEAR Audiology with Dr. Carrie Spangler.
[00:00:16] Carrie: Welcome to the empowEAR Audiology Podcast which is part of the 3C Digital Media Network. My name is Dr. Carrie Spangler, and I am your host. I am a passionate audiologist with a lifelong journey of living with hearing challenges and this vibrant hearing world. This podcast is for professionals, parents, individuals with hearing challenges and those who want to be inspired.
[00:00:45] Thank you for listening, and I hope you will subscribe and invite others to listen and leave me a positive review. I also wanted to invite all of you to visit and engage in the conversation on the empowEAR Audiology Facebook group. Transcripts for each episode can be found at www.3digital media network that come under the empowEAR Audiology Podcast tab.
[00:01:18] Now let's get started with today's episode. All right. Um, I am excited today to welcome two guests to the empowEAR Audiology Podcast. Today I have Juliana Hebert and Andrew Hebert from HearStrong foundation. And I'm just going to share a little bit about the HearSTrong foundation, and then I'm going to let them share a little bit about themselves.
[00:01:44] So HearStrong was founded in 2013 with a goal of inspiring. Hearing healthcare awareness movement, an estimated 48 million Americans experience, you know, in last and 80% of these individuals, let it go unaddressed. This could be due to barriers such as social stigmas, financial difficulties, lack of awareness and resources and monies and response to this need.
[00:02:12] HearStrong recognizing and sharing the stories that we might talk about. People. With hearing loss and an effort to empower and inspire others to take control of their hearing, help. These individuals are known as Hearstrong champion. And today I'm really excited to have Juliana who is the program director.
[00:02:34] for Hearstrong and Andrew, the chair of the board of directors with me today to share a little bit about themselves and the HearSTrong foundation. So welcome both of
[00:02:45] Andrew: you. Yes.
[00:02:50] Carrie: I don't know who wants to start. Can you just share a little bit about yourself and how you got invested in the HearStrong foundation?
[00:03:05] Julianna: So, um, let's see. So my background was, I went to undergrad for speech therapy and audiology. Um, and then later on. I went to get my master's in teaching and special ed. Um, and the speech therapy audiology component of my, uh, educational background was due to my father who had hearing loss. So growing up, my dad always tried to wear hearing aids.
[00:03:32] He lost his hearing at a young age from chickenpox, and he was born in 1945. So at that point, It wasn't very, uh, well welcomed, I guess, having a hearing loss. Um, and he was treated, you know, in, in bad ways, I guess, through the educational system. And he always thought that his hearing loss kind of put him down and he wasn't always open to wearing hearing aids.
[00:03:59] Um, But nevertheless, you've kind of persisted. He got, he went through school education, he did great things. He was an educator himself. Um, and it wasn't until recently, um, getting involved with Hearstrong, that I got to hear a little bit more about his story about when talking to him and talking to my mom and just hearing about kind of all the struggles that he went through, but he never led it.
[00:04:24] Kind of keep him back or anything like that. Um, and now he wears hearing aids. He loves them. He loves them. He can stream all of his show. It was through that. I can talk on the phone through them, so he loves them. Um, but he was one of the main reasons why I went into speech therapy and audiology. Um, and then later on, in special education, I was able to see within the schools, um, some children with hearing loss with the FM systems and all that.
[00:04:50] So it really opened my eyes. So in that there, I dunno, components of what else I could do. Um, Andrew was working with EarQ, um, and your cute, the founder of EarQ decided to found Hearstrong. And I decided to get involved and asked Andrew, you know, do they need any help or anything? And, um, I signed on in 2019.
[00:05:16] Um, and I've been with HearStrong. Um, now I'm helping with all the different programs and working on our fundraising campaigns. Just trying to get the word out there and helping as many individuals get fit with now through some of our programs as possible.
[00:05:33] Carrie: Wow. That's great that you brought your undergraduate speech and hearing and your family experiences and then your special ed experience all into one place.
[00:05:42] So what a great background to bring the, to here, Andrew? How did you get involved?
[00:05:48] Andrew: Yeah, so, um, I was less intentional with getting into the door into the audiology industry. Um, you know, I was looking after I graduated with my undergrad, I went to school for food and nutrition. So I was really into like, you know, healthy lifestyles and, um, it, I wasn't sure what I wanted to do.
[00:06:11] Um, but I was looking at different jobs in the market at the time. Uh, this was back in 2008. Um, and it was looking into a lot of pharmaceutical medical device sales, uh, Juliana. And I worked together back then as well. Uh, so she definitely had an influence and, uh, along my career search, I started interviewing at various companies, you know, the, the companies that I've just mentioned as well as this small company called EarQ
[00:06:38] Um, and you know, I got several job offers, uh, and I ultimately decided to go with EarZ. Um, one Juliana said, Hey, it's a great industry. She told me a lot about it. And it was really important to me that whatever I was going to do was going to have a positive impact on individual's lives. And, you know, based off of what she was telling me, it sounded if I got into that field, there would be something there.
[00:07:05] Um, and to, you know, it just really loved the company culture and the mission of the organization to help audiology practices and hearing practices in general succeed, uh, and educate more people about hearing healthcare and ultimately get more patients connected to practices. Um, so I started with the company right at the beginning of the national expansion.
[00:07:28] It was really fortunate timing, uh, ended up growing as the company grew, uh, was fortunate enough to grow into be the organization's president, um, and, uh, and had a lot of fun with that. We were working with independent practices, just helping them to run a more efficient practice overall and really take a look at their marketing efforts, uh, in, you know, more of a light of patient education.
[00:07:56] And how do we adjust, um, you know, educate more people on the importance of hearing healthcare and then motivate them to come into the practices. So, um, we learned a lot while we were doing that and, and had a lot of fun. Um, and ultimately in that is along the way, the journey of creating EarQ, which grew to this 1500, you know, practice location, distribution network, um, here's Hearstrong was created because you know, the, the focus on, you know, we, we saw the needs.
[00:08:28] Um, for more education out there and also just changing the dynamic around the conversation of hearing loss, um, you know, hearing just saying that it's like, you know, it comes across as a negative and in some ways, but it's really not. Uh, it's just, you know, it's just like somebody that has to wear glasses, but somebody wearing hearing aids to help them hear altogether.
[00:08:49] Uh, and we really wanted to redefine what it meant to do something about hearing loss. So we. We got this idea that, Hey, why don't we start telling people stories? Let's, let's talk about, you know, the folks that are doing something about their hearing healthcare and talk about the amazing things that they've done and accomplished with their lives.
[00:09:08] Uh, and that's where, you know where Hearstrong. Started to start it from a, it's just this idea of, Hey, why don't we tell more people's stories and start to change the conversation around, uh, hearing healthcare in general? Um, you know, it morphed into like really big thing. All of a sudden, uh, Ed was extremely passionate about it.
[00:09:29] Um, you know, linked up with, uh, one of our other board members, Brian McCaskey, uh, of the McCaskey family that owns the Chicago Bears. Um, and, you know, we started to find other individuals that were passionate about the same cause. And I started to really just snowball. So we ended up, you know, we've, we've grown over 200 champions that we've recognized.
[00:09:54] Uh, the programs are expanding to more directly help, uh, individuals with hearing loss. And Juliana is way better at talking about some of that stuff than I am. So I'll let her do that later on. Um, but it's just been a really cool experience.
[00:10:10] Carrie: Yeah, no, I think your, the idea of storytelling is so powerful and there's so much research about how storytelling can be so positive and it really sticks with you.
[00:10:22] Like we can talk about what 48 million Americans experience hearing loss, but when you share a story, it really that's where that emotion really sticks with people. And we can really have that positive spin on it that you were talking about. So you shared a little bit about how HearStrong got started. Is there anything else you want to add to how that started?
[00:10:46] So it was really what it was like the nonprofit arm or a 501c3 of EarQ. Is that correct?
[00:10:55] Andrew: Uh, it was always a separate organization, but EarQ is definitely driving it. So the staff members of your key, we're putting together a lot of the materials that we were creating and helped us create, you know, websites and they still do today.
[00:11:09] We're really thankful for everything that EarQ provides. Um, but, uh, yeah, so it was, uh, there were, there were technically separate, but a lot of the same people were working on the materials and everything like that. Um, so it was a. It was, uh, it was a great effort and I like it. One of the things I really loved about it is it helped reconnect the staff to like what we're doing and like the people that we're impacting.
[00:11:36] You know, we obviously had a for-profit business that had great intentions, but it's a traditional business. So, um, you know, you have the for-profit side of it, but the non-profit non-for-profit allowed us to really focus on, you know, what it is that we were ultimately doing, which was helping people, you know, improve people's lives.
[00:11:56] Carrie: So you guys have both been with HearStrong for a few years now. So what are your exact roles, Juliana, what's your exact role, if you would have to define
[00:12:08] Julianna: it? So there's only really only 2 employees for HearStrong it's myself and my, um, and my other employee, which is Scarlett. Um, and she does like all the social media and she does a lot of the stuff behind the scenes, which we both do.
[00:12:24] Um, We kind of run the day-to-day operations. I communicate a lot with the champions as she, as the shape. Um, but I reached out to a lot of providers. Um, I work with other nonprofits, um, to match up people who are in need of hearing healthcare and don't know how to access it. Um, we try to match them up and help in any way we can.
[00:12:44] Um, it's just the day to day operations and just trying to work on fundraising, trying to, um, Get applications in for either HearStrong champions or through our pay it forward program, or people just reaching out in general, um, which we've seen an uptick recently of, you know, I need hearing aids. I have a hearing loss.
[00:13:06] I can't afford them. I don't know where to go. Where do I start? So it's kind of connecting those dots and seeing in all of our power, how we can possibly help them. Um, just cause when you hit someone that reaches out to, you know, like what you're saying with storytelling. They put it all out there for you and you know, all of their troubles and everything that's going on and why they're in this position.
[00:13:30] And it's hard to just not say like, yes, let's help you. So that's what we've been doing a lot lately is just trying to help those individuals were really a need. Um, and we're, so it's been a lot of children lately. Um, families reaching out to us for that help. So. That's what I do most of the time each day is just the daily day to day, like emails, communication with providers, families, and other nonprofits.
[00:14:01] Um, and just trying to help people. Yeah. So I love it. It's. The
[00:14:07] Carrie: sounds very rewarding
[00:14:10] Julianna: Yeah.
[00:14:12] Carrie: So Andrew, what's your main role?
[00:14:16] Andrew: So I, I get the fancier title than Juliana as the chairman of the board. But, uh, I have to say she's the one that just drives the organization forward. I mean like, and she inspires me to continue working as the chair.
[00:14:31] Um, you know, I see her. 10 o'clock at night emailing patients or emailing providers and trying to connect people and it put all this together and it's just truly inspiring. I mean, it's amazing what she did. Um, but you know, as, as the chair of the board, I help organize the, the, uh, board meetings as well as, uh, we're looking to expand the board, uh, as we're looking to grow as an organization and get prepared for that next level.
[00:15:03] Uh, so it's starting to bring in some expertise from different areas. Uh, and you know, ultimately, you know, do some networking and helping out with some of the fundraising side of things. So, uh, it's, it's really rewarding when I get to hear the stories. Um, but it's, it's, it's been a lot of fun.
[00:15:20] Carrie: Oh, that sounds exciting about the growth too.
[00:15:24] It seems like. Yeah. I think HearStrong is built around your champions. So could you share a little bit more about how champions become champions? Like how are they nominated and selected and celebrated?
[00:15:42] Julianna: Um, yeah. Do you want it to start into that ? Had the process all began.
[00:15:47] Andrew: Yeah. I mean, like, uh, the process began at first.
[00:15:50] I mean, when we didn't have, uh, you know, a lot of recognition and people didn't know who you were, we were doing a lot of outreach. So it was about, you know, just, we would scan the web. We would look at, uh, you know, Google alerts and hopefully get some good stories and then we'd contact people and tell them about what we were doing and talk about amplifying their message and, and all of that.
[00:16:13] So there was a ton of work that got put into. Um, it's evolved now where, you know, we start to have some inbound, um, uh, re uh, people being, um, nominated to be HearStrong champions. Um, but, uh, you know, honestly going through some of those, the stories are, you know, that's the, one of the favorite parts of being with the organization is just being able to see them for the first time.
[00:16:38] Um, but Juliana can talk more about what we're up to.
[00:16:42] Julianna: Um, so yeah, like Andrew was saying, now we have a lot of people that are reaching out to us, you know, on our web page, we have forms where, you know, anybody can nominate someone that they know who has a hearing loss and share their story with us. Um, and you know, for the most part, you know, in terms of selecting champions, it's we really select everybody because all of the stories are so, um, Interesting different, um, empowering in their own way.
[00:17:10] Um, just to kind of see all the different backstories of individuals and they range in ages from young children to older adults. Um, so I think in that sense, it kind of gives a different highlight too. I think the stigma is only affects people who, old age, like hearing when you're older. Our organization highlights.
[00:17:35] No, it affects everybody from birth to 99 years. You know, it, it affects everybody. We share all those stories. Um, and yeah, the stories are great. And the people that nominate the individuals, um, they don't always tell the person that they're nominating them. So then we kind of get to surprise that person like, oh, you know, so-and-so nominated you.
[00:17:57] And this is what they said about you. Some of the times when people are like, oh my gosh, okay. I wouldn't think of myself as being nominated for something and they're, you know, they're honored and they're just so happy. Um, so it is wonderful. And, you know, from those stories, we gather all the information and we send out a questionnaire to the champion and then we write up like a little bio to kind of encapsulate their whole story and who they are and what they're doing.
[00:18:24] Um, what their plans are. Um, so we put that on our website and we put it on our social media platforms as well. Um, and then, you know, in honoring them prior to COVID, we would have in-person events. So we would, you know, do events and we would partner sometimes with EarQ, um, and have attendees time.
[00:18:46] And we would have them come up to the stage and we would, you know, tell them everybody about them and what their story was, and then honor them. Giving them a metal, plaque and making them like a HearStrong champion. Um, obviously that is changed. So being married to Andrew, he and I were kind of stuck in the house together, uh, with COVID and we were trying to.
[00:19:08] Put our brains together, you know, saying like, what do we do now? You know, we can't have in-person events and then zoom, that was like all the rage, everything. So we decided, you know what? We have these kits that we were trying to get people to do their own ceremonies at home if we couldn't have an event.
[00:19:28] So we wanted everybody to have a ceremony and we thought, you know what? We have all of these kits that we just had made. You know, what, why don't we do virtual ceremonies and we'll send out a zoom link and we'll just see how it goes. And Andrew and I will kind of moderate and we're both in the same house, so it's easy to do.
[00:19:46] And it kind of took off and it's been a lot of fun, just Andrew and I teaming up and getting to talk with champions as well as the people or the individuals who nominated them. So it's been a great experience. Um, so that's how we're kind of. Highlighting and celebrating individuals now. Um, and I don't know if we're actually going to move away from it because it's been so nice.
[00:20:08] Um, because there, in some sense, you know, everybody gets their own ceremony, um, that we get to then push out on our social media platforms and share. And, um, yeah, it's been really nice.
[00:20:20] Carrie: That's awesome. I know just from personal experience of being nominated, um, said Derek Houston, who is a colleague of mine that is at Ohio state University.
[00:20:33] He nominated me and I was so surprised too. When I found out I was like, wow, it was just nice. As I think, as an individual with hearing loss or hearing challenges, I don't really know. I don't always think about my story and then have the opportunity to share it and know that maybe someone else will be inspired by just everyday life.
[00:20:59] And this is what my journey is like. And hopefully. Uh, what you all said, you know, breaking down that stigma of having a hearing loss and wearing devices and it's okay. Um, but we need, I think the nomination process is a great surprise for the champion too. Yeah. And you said you have now was that over 200 champions?
[00:21:26] Julianna: Yeah. So as of today, I, I double check. We have 233 champions. So
[00:21:34] Carrie: you asked who they US or all over. Um,
[00:21:39] Julianna: I have a couple in other countries, primarily United States, but we have a couple international, there's
[00:21:46] Andrew: a couple of international ones. I think we got a rugby player, uh, that was international. Um, maybe. Yeah.
[00:21:53] Maybe a singer too. Um, but the majority are here in the US yeah.
[00:21:58] Carrie: Do you, either of, you have like a favorite champion story that sticks out, I mean, there's 233, but is there anyone that, or a couple that stick out to you?
[00:22:12] Andrew: That's a really tough question just because so many of them do, but I guess I can talk about one that like personally impacted me.
[00:22:20] Um, So this was early on in Hearstrong. When we were doing a lot of our events, I was with EarQ a, we were having a lot of events where we would get. Uh, like 90, a hundred, uh, audiologists together, hearing instrument specialists talk about, you know, you know, programs that EarQ was offering or the manufacturers would also, you know, do some manufacturer product training.
[00:22:48] Uh, and we started doing Hearstrong ceremonies at these events. Uh, this one happened to be at the Oticon headquarters. Um, and I, it was. It was earlier on in my career. So like I was, I would just started getting really into public speaking, like in front of like an, a group of like 90 or a hundred people.
[00:23:09] And I remember I had to give some presentations for that event and that was like a nerve wracking for me. I had to prepare a lot of practice in my room and hope that everything was going to go. Uh, cause I don't think it came as natural to me as I would have hoped. Um, but I, so I remember being nervous about all those presentations that I had to give.
[00:23:31] And then the event was almost done. We had our HearStrong ceremony to go. And this young man, Elliot Gross, who he must've been 13 or 14 years old, I showed up to because he was going to be recognized as a Hearstrong. Uh, and he showed up with his electric guitar, which was just really cool. Um, so I didn't host that ceremony.
[00:23:56] I got to sit on the sidelines and watch it. Um, but why it impressed me so much is like I was kind of this business executive that was nervous to talk in front of this group of people. And Elliott shows up this 14 year old kid walking in an auditorium full of strangers with all the confidence in the world, brings his guitar that nobody was even expecting to happen, plugs in, into an amp and just starts, you know, rocking out in front of this group.
[00:24:26] And has everybody just like in awe at his talent? And then we got to hear his story. And I just remember saying like, oh my gosh, that's so cool. If he can have that level of confidence, I can too, uh, so like, you know, he, like, he was inspiring to me and like, I definitely carried that with me when, you know, I've had to do so many presentations and public speaking events over the years and everything like that, I think.
[00:24:53] But he really had a significant impact on me at that event. And it was just really cool to see him. He was a great guitar player, too. Super talented guy. I wonder what he's doing today. It's just, you're asking that question. I want to look him up cause he's probably doing some really cool stuff.
[00:25:13] Carrie: Yeah. He's probably some famous musician somewhere, but think about how that impacted you and then all of the professionals who were in that room with you and the impact that it had on them and probably, yeah.
[00:25:30] As a professional thinking, this is why I do what I do. When you see that who HearStrong story and that here, Hearchampion. Juliana. Do you have, uh, anything that impacted you? It doesn't have to be a favorite, but maybe something that impacted you
[00:25:48] Julianna: there's been so many. Um, I mean, there was one audiologist that we did our first virtual, Hearstrong champion ceremony for, um, and she was in, she became an audiologist only after finding out that she had hearing loss.
[00:26:04] So she went through. Until she was in college with hearing loss and it totally went undetected because I get stuck with me is because she did well in school that she kind of fell through the cracks because she was told like, oh, well, if you weren't doing well in school, maybe you would need hearing aids or maybe we would have done something more, but you were doing well in school.
[00:26:26] You were fine. And the fact that she made it all the way through, and I think she was going to major, um, in, I think like opera singing or theater, I think she was saying, um, and she had a severe hearing loss and then she was in a class and I think one of her friends, um, did a hearing tests? And she was like, oh my God, And so she decided to take the path of being an audiologist.
[00:26:50] And I loved talking to her to hear that she, um, is a true advocate for patients because she tries out all the hearing aids prior to fitting her patients with her so she can figure it out. And, um, and she gets back. So she stood out to me, just the fact that, you know, here's. I don't know, this is a girl that went through school this entire time had hearing loss and no one did anything about it.
[00:27:19] And then she's now taken upon herself as her profession to help people. Um, and then the other one that stands out is when I first started, um, it was this young girl. And I just started HearStrong, or we're looking at stories of, you know, nominating through HearStrong champions and these two little girls, um, we're hearing loss, but their older sister decided to start their own nonprofit called lemonades.
[00:27:44] Um, and the older sister. She decided to sell stuff, design these lemons and sell them for money. She would ship them out. And the money that she made, she would help other children get hearing aids because she realized when her sisters were diagnosed, how expensive they were, our insurance didn't always cover it.
[00:28:05] So she made it her mission with her sisters. They would try to get any child that who needs to fit with your needs. Um, so we did that story with them and that stood out to me because she was only eight years old when she decided to do this. And we actually ended up teaming up with them, um, and doing a fundraiser.
[00:28:24] Um, and that was when I started in 2019. We're still partnering together and I've become very close with their mom and our two organizations together. Um, I think we've helped almost 10 children. Get fit with hearing aids through, um, her programming of getting applicants that apply, we read through their story, and then we try to find a provider that's close to them and get them evaluated and get devices for them, um, all at no charge.
[00:28:56] So those stories really stick with you. Um, and then doing the follow-up and actually getting to talk to the child or the parents afterwards. And just seeing the impact that you have. So it's been, that was one of those things where, you know, were looking for a champion found a champion and then it kind of just, I don't know, it took like a natural course of events where now we're close with them and we work together.
[00:29:20] Now both of our foundations are nonprofits, um, to help more people, which is ultimately. You know, that's, that's really all that we really want to do. So yeah, those, those two stand out to me.
[00:29:31] Carrie: Yeah. That is a great story. I remember when that first came out too, and I think you guys were featured on Good Morning America to that story.
[00:29:42] So the girls, everybody was on stage and they had the lemon and. Yeah, we talked about the story. So what did great outreach and awareness that really started with, with a HearStrong champion and being able to partner with them further, which you brought up the point about. Finding providers who are willing to partner with you, obviously you're a nonprofit and organization and depend on people, also kind of doing this share of volunteering, whatever they can, whether it's a services or, um, you know, time and all of that.
[00:30:23] So how can professionals or providers get involved and what is the criteria for that?
[00:30:32] Julianna: Um, well, we have on our website, we have a form that, you know, providers can fill out a form just with their contact information, you know, their name, their practice. Um, if they're interested in partnering with us. So in the case that we have somebody, um, through our Pay it Forward program, where is a program that we allow champions to nominate somebody who's in need, um, said they nominate somebody who needs to be evaluated and fit with hearing aids.
[00:31:00] We find a provider near them. So if we do get a provider who is interested and we put them in our little database and hopefully, you know, we'll, we'll have somebody who's in need and that provider would be able to help us out, um, by seeing the patient, um, which, which is ultimately what we want to do. We want to kind of try to build like a network of providers that we can always depend on.
[00:31:22] I guess have our same, um, um, mission and they want to help individuals. Um, and they'd be willing to do that with us and partner with.
[00:31:34] Carrie: Yeah. So can you share a little bit more about the Pay it Forward program and the, how that, that works? So it's part of your Hearchampions. If you're nominated and you're a champion, you have the opportunity to Pay it Forward.
[00:31:50] Can you share it?
[00:31:50] Julianna: Yeah. So this is a, it's the most reward. It's the best part because, um, you know, champions who have hearing loss, they have here needs, um, they've done something about it, but we share their stories. We kind of surprise them by telling them like, you know what, now you have an opportunity to pay it forward.
[00:32:08] You get to nominate somebody, give us their information, we'll contact them. Um, you know, somebody who might just not know how to go about getting hearing aids or who do I see to get tested or, you know, I don't have the financial means necessary to access this year in healthcare. So we partner, we find providers near them who will then test that individual.
[00:32:32] Um, we get devices donated from hearing aid manufacturers. We reach out to various manufacturers, and they donate devices that providers them fit on the patient. Um, and then we get to. We follow up and find out their story afterwards. Um, as you can imagine, usually it's a shock because this is the first time they've ever had hearing devices.
[00:32:58] So it's, their whole world has changed. Um, and it's been so interesting to do because you know, our champions range in age from child to adults. Um, and so do our pay it forward recipients. So it's so incredibly rewarding. The family members are so grateful individuals grateful, and you see how it impacts them down the line and how it changes their life.
[00:33:27] I mean, it's, it's a wonderful, wonderful program. Um, but the only way we do it is through donations and having providers to help us. So it's an important program and a rewarding program.
[00:33:41] Carrie: Yeah. So hopefully more providers will jump on board because I think it's such an important aspect of audiology that we participate in things like this, because it does benefit so many different people.
[00:33:58] And I think we just have a. Just part of who we are that we need to be doing this. It's like paying it forward that way. So I'm thankful that you guys also have that program too, because it does really impact. And I know from my experience to be able to pay it forward was such a blessing. It was a mom who I've known.
[00:34:21] since her children who two out of a three kids had hearing loss and hearing aids. And I had known the mom since her kids were preschool and now they are like teenagers. And so she always put her kids first, which I would too. I always put my kids first. And so their technology in hearing aids were always, you know, came out first.
[00:34:46] And so she was like, I'm just gonna wear it. My old devices. And, and so to be able to pay it forward to someone who like this mom who is always put her kids first, I am, she was the excited and emotional about the whole process. And it really did change her life. So thank you guys. But, but that program
[00:35:08] Julianna: too, that was such a touching story to, to hear from you about that mom, and then to get her.
[00:35:15] Reaction like when she was notified, what she was receiving and what the program was that, I mean, I started crying, reading the testimonial and then started crying. And then I was like to Andrew was, and he was like, no, this is very touching. We shared them with our board members and I was like, this is why we do what.
[00:35:38] Because this mom always put herself first, like you said, that's what parents do. Um, and she wouldn't have done this for herself. If you hadn't stepped up and give it your. Like just so surprised and shocked and just so grateful and yeah, I mean, that's you get, I get shows now thinking about just because now I see that you're kind of tearing up, so yeah, everything.
[00:36:05] It was wonderful
[00:36:06] Carrie: though, you know, so it was, it was a great process to be involved in and I'm so thankful for that program as well. So you talked a little bit about sponsors and getting donations. How do you guys, how can people get involved with being a sponsor or donating to Hearstrong?
[00:36:29] Andrew: So, uh, they can reach out to us through our website, which is Hearstrong.org
[00:36:35] Um, we have a fundraiser going on right now. Um, so we're looking for some sponsorships for that our, our next fiscal year fundraise, uh, that we're doing where we want to help 50 individuals, uh, and get them fit with hearing aids. Um, you know, that's, uh, I do want to just mention this because it's kind of a really, uh, touching thing that just happened.
[00:37:02] It's a new milestone. Someone who recently passed away, had it in her will, uh, that they wanted to have, uh, donations instead of flowers and the donations we're going to HearStrong. So that was, uh, that was kind of an incredible thing. If you think about like somebody's last wishes, uh, and what they're asking folks to do, uh, and for them to say.
[00:37:25] Uh, we'd rather have, you know, money to go to this great cause then, you know, flowers or whatever it is. That was, that was just a really, really cool thing that happened recently. And we're, we're so grateful for that. Um, but there's all different types of ways that people can get involved. Um, and we have a sheet of different, uh, fundraising ideas for our, our, um, our helpers out there and our volunteers.
[00:37:50] Uh, so if you're interested in getting involved, uh, let's say. Maybe you can't make a direct donation yourself, uh, but you want to get involved and you want to help out with stuff. Just reach out to us through Hearstrong.org. Uh, and we can help get you set up and ready to, to help us out with that effort.
[00:38:09] Uh, Juliana, you want to give some more detail on, um,
[00:38:12] Julianna: the current one there's boxes, so we've kind of changed our route. Um, so when we were tied with EarQ, um, you know, we're completely separate now. We worked a lot with hearing aid manufacturers who would help us sponsor in the past, um, and presently, um, and now we're kind of trying to branch out more just to, again, raise that awareness of hearing loss, what we do, what can be done, how you can help.
[00:38:42] Um, so we are trying to kind of branch out and reach out to, you know, more businesses, other different types of companies, um, even individuals. Um, and you know, when they sponsor or donate money to Hearstrong, all of that money goes towards, um, you know, fitting people and giving them that gift of hearing, where we pair them up with a licensed professional who will test them, take care of them, guide them in the right direction.
[00:39:09] And then, um, with brand new devices, um, that will hopefully enrich their lives for the better a great changes. So that's, you know, when people are interested in donating or sponsoring, like that's where the money goes, that's what it goes towards. Yeah. So yeah, if anybody's interested in donating or sponsoring, you can always find all the information on our webpage.
[00:39:32] Um, like Andrew said, um, or, and can always reach out to us too. It's Scarlett and I, so we're, we're behind the scenes, so it'll just be talking to me or her. So, yeah.
[00:39:46] Carrie: Oh good. That's a great. And I show notes after the podcast. I'll definitely link that Hearstrong website, people can click on it and they can get involved that way as well.
[00:39:58] But before we wrap up, I know just from exploring your website and seeing your social media posts, you also have a couple other things that people can participate in such as you have a sports scholarship. Could you share a little bit.
[00:40:15] Julianna: Yeah, we partner with, um, the NFL players association. So we grant, um, scholarships two scholarships.
[00:40:23] Um, I mean, out of $2,500 each to a student athlete with hearing loss. So they have to be. We have all of the, uh, the criteria on our website, but, you know, they have to have a 2.0 grade point average. They have to be at least playing on a varsity level for a year. Um, and they have to be either a high school, senior to college, sophomore to apply.
[00:40:45] Um, you know, they have to get a letter of recommendation from a coach, um, or faculty member and they write in and apply. Um, so we have that. Um, and then we also pair up with walk for hearing. So they now have turned because they can have virtual events, um, hopefully there'll be transitioning to in-person events, but they do virtual walks now.
[00:41:07] And so we're an Alliance. So being an Alliance. If you want to do one of the virtual walks, you can choose HearStrong as your Alliance. So the money we get, just a small portion of any money that's raised and it goes to her strong. Um, and yeah, again, like any small amount, any little bit helps, um, cause it just helps us to continue to do what we're doing, um, and helping more people, which is really what we strive to do.
[00:41:32] Carrie: Yeah, that's great. Is there anything that I didn't ask you that you want to share?
[00:41:42] Julianna: What do you think Andrew? Anything?
[00:41:45] Andrew: No, I mean, we covered a lot. I, it's not, it's just such an important thing. I definitely want to thank your listeners for tuning into our story. Just, um, learning more about Hearstrong, um, that's, uh, uh, it's really cool that you're doing this podcast.
[00:42:02] I mean, we just can't have enough positivity focused on, um, you know, our space right now. Uh, and I hope we can continue to, to grow the industry and just really grow the amount of people that are stepping up and doing something about their hearing loss.
[00:42:20] Carrie: Well, I want to thank, do you want to say anything else?
[00:42:22] Juliana, let me cut you off. I just want to thank both of you guys for your time and just as a HearStrong champion, I think your mission is so important and to be able to have different people's stories that there is so. Critical and empowering and positive for others to see whether you're a professional.
[00:42:48] Like you said, Andrew, listening to that, Elliot, I think you said his name was playing the guitar and having that impact. Or A parent who might be starting the journey and to be able to go to the HearStrong champions and be like, wow, look at all these different people. And they all have something unique and talented about themselves that they are sharing with the world or a teenager or a young adult or an older adult
[00:43:16] I mean all anybody to be able to read somebody else's story and get that inspiration. Yeah. So important and really thank you guys for everything that you do with HearStrong.
[00:43:33] I thank you, listeners for tuning in, and I will put information right here, starting on the show notes, and please tune in again to empowEAR Audiology and share this information with all of your friends. Have a great day.
[00:43:48] Announcer: This has been a production of the 3C Digital Media Network.

Episode 21: empowEAR Audiology - Dr. Sam Atcherson

Announcer: Welcome to Episode 21 of empowEAR Audiology with Dr. Carrie Spangler.
[00:00:16] Carrie Spangler: Welcome to the empowEAR Audiology Podcast, which is part of the 3C Digital Media Network. My name is Dr. Carrie Spangler, and I am your host. I am a passionate audiologist with a lifelong journey of living with hearing challenges in this vibrant hearing world. This podcast is for professionals, parents, individuals, with your own challenges and those who want to be inspired.
[00:00:44] Thank you for listening, and I hope you will subscribe, invite others to listen and leave me a positive review. I also wanted to invite all of you to visit and engage in the conversation on the empowEAR Audiology Facebook group. Transcripts for each episode can be found at www. 3, the number three, C digital media network.com under the empowEAR podcast tab.
[00:01:18] Now let's get started with today's episode. Let's get started with today's episode of empowEAR Audiology. Today I am looking forward to interviewing a colleague, friend and a cochlear implant mentor. Let me tell you about today's guest. Dr. Sam Atcherson. Dr. Atchersonis a bilateral cochlear implant user, and a long time user of hearing aids.
[00:01:46] He received his bachelor's and master's degree in communication, sciences, and disorders from the university of Georgia and his doctorate in audiology and speech pathology at the university of Memphis. He is currently professor of audiology at the University of Arkansas for medical sciences. He has given over 200 presentations at local, regional and international levels.
[00:02:13] And he is an author. or a coauthor, of over 50 peer reviewed articles, 22 books, chapters, and three books, his research and clinical areas of interest include face mask related to speech perception and acoustics, auditory electrophysiology, audiologic rehab, and health literacy. He serves on the board of directors for the accreditation commission, but audiology education.
[00:02:45] And then the board of trustees as vice president for the Arkansas School for the Deaf and Blind and Visually Impaired. He is the co-founder of the Association of Audiologists with Hearing Loss, a former president of the Association of Medical Professionals with Hearing Loss and one of the original founding board members of the Arkansas Hands and Voices Chapter.
[00:03:12] Today, I'm not only excited to learn more about Dr. Atcherson’s research and study, but I'm also looking forward to hearing his journey, um, from hearing aids, the cochlear implant. And I'm so excited because by storytelling, we really can share it and empower others who may be on that hearing journey.
[00:03:34] So welcome. Dr. Atcherson. Thank you for being on this podcast.
[00:03:40] Sam Atcherson: Thank you, Carrie. Please call me Sam. We are friends. We are colleagues. Um, and it's weird to hear my bio, but, um, I'm proud of it. Um, I wouldn't be where I am without, um, audiologists and speech pathologists and my, uh, childhood and upbringing. So anyway, I'm so glad to be here.
[00:04:03] Yes.
[00:04:03] Carrie Spangler: Well, thank you, Sam. I'm so excited for you to be here too. And I was just trying to think, we've known each other for a while.
[00:04:10] Sam Atcherson: We have. And I was racking my brain, trying to figure out when we actually first met. And I still don't even know that cause really cross paths so many times. Um, but since you had mentioned in my bio, um, the association of audiologist with hearing loss, um, I do remember.
[00:04:36] Treading a round table request for audiologists hearing loss. I think there's sort of back in 2001 and you probably came to one of those very early on, and that was probably my first introduction to you. Um, but you, you ended up being one of those rising stars too. And so we've been able to do this.
[00:05:01] Follow each other's trajectory. Um, and we've gone on to do some great things.
[00:05:07] Carrie Spangler: Yeah. I know I was thinking about that too. And I have specific memories of, um, I think Clarke means steam. We were both there and you were the, I think the keynote at that point in time and I was helping with the teen program.
[00:05:26] And you ended up coming over and spending time with us and the teenagers, which was a really great experience too.
[00:05:35] Sam Atcherson: That was so fun. And, uh, I think there were a couple of other colleagues of ours. Um, wasn't there a physician with hearing loss too, and he was helping out. That was a great time. That was a great time.
[00:05:47] That was a
[00:05:47] Carrie Spangler: great time. It was so, yeah, I'm sure. Although moments will come, come through, um, as we have this conversation today, but, um, Sam, I would love for you to share with our listeners a little bit about your hearing journey growing up.
[00:06:05] Sam Atcherson: Oh, my, um, it is the question when people want to really get to know me.
[00:06:11] And I've tried to tell that story to my students. Um, it gives me a little bit of credibility if you will. Um, well, the story kind of goes, I was probably born with normal hearing. Um, as far as we know in my family, I am the only person, um, in our family tree going all the way back to my great, great grandparents on either side to have any kind of hearing loss like I have.
[00:06:44] Um, so the way my parents tell me I had a babysitter, her. Thought that I really wasn't responding to sounds in my environment. And so my parents recall just kind of blowing the babysitter off. They're like out now, he's a boy. He's hard headed. Listen anyway, but I don't know. One thing led to another and I think they started noticing it themselves.
[00:07:13] Um, my father was in the air force, so we went to an air force hospital. Has had an ENT look in my ears, didn't see any signs of infection or anything. So, yeah. That was the first referral to an audiologist. Um, and of course at my age, at the time, I think it was three and a half or four. I can't remember exactly from their story.
[00:07:38] Um, but they put me in a booth had headphones on yet. And they'd got minimum response levels that was skirting on a mild to moderate hearing loss. But again, I was just the better ear. Right. So. Um, as a typical audiologist would do, let's see you back in three months or six months or whatever. And they started seeing a pretty rapid progression.
[00:08:07] Um, I think it had dropped to about a moderate to severe hearing loss. By the time I was five or six, and then it just stabilized for a little while, but because of that time period, They very quickly enrolled me in a pre-K program with other deaf and hard of hearing kids. And that was the first time I had ever seen other kids with hearing aids and, uh, I noticed some of the other kids were wearing colorful ear molds.
[00:08:38] So I was like, I've got to get some too. And I think I had red, um, And what I was said also about that time period was I was in Denver, Colorado, and rehab relapse, some colleagues in Colorado and they led the country. In leading efforts in early intervention. Um, and so everything was taken care of in Denver, Colorado.
[00:09:04] I mean, I, I had itinerant teachers. I was in a special classroom and first and second grade with peers and also we're hearing aids and we were all oral. I don't think I was exposed to sign language until middle school. Um, But I'll tell you more about that in a little bit. Um, but anyway, so my time in Denver was great and then my father had to be stationed somewhere else.
[00:09:31] So we went to New Mexico and not trying to throw anybody under the bus or any state, but. The services in New Mexico, where I lived was not the same at all. And so we started seeing some, some difficulties in the classroom, anyway, so as I moved in various places, um, the thing that really changed my life and taught me self advocacy skills was when I ended up in Portsmouth, New Hampshire.
[00:10:07] I was there in um, eighth grade and ninth grade, sorry. From the time I left Denver to the time I was in New Hampshire and high school, I was in public school with very little services at all. I might've had a speech pathologist. I certainly went to audiologists for regular checkups, but no one was really keeping an eye on me.
[00:10:34] And it wasn't until I was in New Hampshire, that I was again, placed in a classroom for one hour at the end of the day. With other students with hearing loss, some signed, some were oral, and it was there that I learned how to read an audiogram for the first time there was there that I learned how to sign.
[00:10:58] And I discovered there was another way to get information. Um, and I joined a boy scout troop there that also had deaf. Children. Um, and so, oh, and I, I learned how to use a TTY. I was just exposed to things that I have never been exposed to up until that point. And that really helped to set the stage for my future.
[00:11:28] I'll just share one more thing about my childhood. Living in New Hampshire really helped me to identify who I was and who I could be, but I have to give credit to my grandparents. I lived with them in sixth grade and seventh grade in Maryland. And during that time, my grandparents taught me the value of hard work.
[00:11:55] They taught me to pay attention to school and academics. Um, they fought with the board of education to make sure that I was placed, um, and, and an appropriate classroom setting. Um, I got my own personal FM system at that time. So, um, that. That period of my life is what helped me do better in school and pay more attention and take pride in my work.
[00:12:26] And then I got the self-advocacy skills in high school and that's just carried me through.
[00:12:34] Carrie Spangler: Wow. That's great. Like, and just some of the things you said, I just like making my wheels turn right now. I mean, you know, you start out in Denver with like basically the great, you know, spread of all kinds of services.
[00:12:50] And then to know that. From one place to another. It's so vastly different. And, um, and unless parent, so empowered with information. And thankfully you started in Denver, so that at least you had an idea or your family had an idea of what they could ask for what you should be getting, because if you would've started in New Mexico, your parents may have never known that.
[00:13:20] You should have had any of these types of support.
[00:13:24] Sam Atcherson: Absolutely. Absolutely.
[00:13:26] Carrie Spangler: So, yes, we have a lot of work to do in education, but I love the fact about the self advocacy, because I think that's a skill that we can start with kids when they're preschool. And it takes if the lifelong skill that kids and adults who are deaf and hard of hearing need to have.
[00:13:46] Um, and, but you did mention that you were in a class at the end of the day, for an hour with other peers who were deaf or hard of hearing. And how did that help you? How did the having other peers, any of the mentors for you,
[00:14:03] Sam Atcherson: or did that impact you in any way? Oh, my, uh, I spent a long time since I've thought about that, but this is what I was say.
[00:14:12] Um, we probably inspired each other for different reasons. For me though, personally, I felt. Alone and isolated, you know, in all these years of school, without other peers with hearing loss, I really felt like no one understood what life was like for me. And then suddenly I'm with peers that are the same age, we're all teenagers.
[00:14:43] We're kind of going through this, you know, personality development, trying to figure out who we are. And it was really cool for me to see. Otherwise, well adjusted deaf and hard of hearing kids. Um, Being good at what they do. I think it gave me some self-esteem that I didn't have. It gave me a little bit of courage, um, uh, learning sign language at the time.
[00:15:15] I don't use sign language as, as my primary means of communication, but I've used it socially. I use it to work with patients if I have to, but learning sign language opened my world. Socially, at least at that point in my life. Um, um, I'm grateful for it. I'm absolutely grateful for it. Um, part of the isolation and feeling lonely was I didn't get the side conversations that other kids were having.
[00:15:51] That was no longer an issue. Um, when I was around my deaf and hard of hearing peers. Um, so that was great. They were just really great.
[00:16:00] Carrie Spangler: Yeah. I know. I w most of our kids are in the mainstream and they don't have those opportunities to meet others. And I know from my own experience, you know, Karen MacGiver-Lux, uh, she was like the first person I haven't met with.
[00:16:18] You know, who was wearing hearing aids at the time. And I went to, and she was going to college and I was starting college. And I thought that was such a pivot point in my life where I was like, oh, there's someone else like me out there. It was like, like what you said, that kind of self-esteem. And, you know, having someone that.
[00:16:40] Was relatable to you in the same situation, so that it's important to have those peers. And we still do. We have a
[00:16:49] Sam Atcherson: whole network. I keep collecting them. It's like Pokemons. I'm just like, oh, this person, this person. And. Yeah. I no longer feel alone. Yeah. Yes.
[00:17:01] Carrie Spangler: So, and I just have to say, and it kind of gets to my next question about your cochlear implant, but you were like one of my, um, messenger audiologist with cochlear implants and my group texts when I was pursuing that path just a short time ago.
[00:17:21] But what, at what point did you pursue that cochlear implant?
[00:17:27] Sam Atcherson: Oh, my, um, So let me backtrack a little bit. So when I was in my master's program, I was wearing hearing aids very successfully. Um, this formal instruction was getting a little more difficult because at that point I think I had a severe to profound hearing loss, but I was doing well.
[00:17:57] By anyone's standards. And so no one ever pushed, no one ever pushed me or encouraged me to get a cochlear implant. Um, and then somewhere close to the end of my master's program. My great aunt who, who passed away a few years ago, she lived in San Pedro, California. Um, right outside of Los Angeles, she attended.
[00:18:26] Some kind of a workshop and they were talking about cochlear implant technology, and they were talking about the research that was coming out of House Ear Institute. And she was so inspired by this technology that she have never heard of before that she called my grandfather, told him my grandfather called my dad, told him, then my dad called me.
[00:18:55] And says, Hey, Sam, your aunt called your granddad, your granddad called man, I'm calling you, have you ever heard of a cochlear implant? And I'm like, yes, dad, I'm in graduate school. I've learned about cochlear implants, but we're still talking 20 years ago or more. And I said, you know, dad, I'm just kind of at this point where if my hearing goes.
[00:19:23] It goes, I know, sign language, I belong to a deaf and hard of hearing community. I might still be able to function as an audiologist, just in a different capacity hours, like ready to go deaf if I'd had to. And I could just hear figuratively my dad's heart break. What I didn't consider in that moment was so what.
[00:19:52] I can communicate with people in the deaf community. What I was effectively doing was cutting off my family. It just did not register in my brain at that moment. And so there was probably weeks or months after that, that I finally started thinking, well, I don't need a cochlear implant right now, but I'll cross that bridge if something changes.
[00:20:24] So fast forward to my first year in my PhD program, I went straight from the master's program, right into the PhD program. My hearing started to change. The content. Uh, uh, of my PhD courses was getting harder. I was having difficulty understanding some of my professors. So I started mentioning about the cochlear implant again, and with that hours, like what the heck?
[00:21:00] Why not just go and do a cochlear implant evaluation. See what they say? And we'll make some decisions as a family. What I didn't know at the time was that my aunt was willing to write the check for the entire surgery. Hmm. Wow. And I saw her, right. It. Hmm. Um, she really, truly gave me the gift of hearing back in 2001.
[00:21:33] And. To honor her. I went all the way to Los Angeles, California to do the surgery. So she got to watch the whole thing. She was there when I woke up after surgery, she was there along with my dad when they activated the device for the first time. Um, I know I wouldn't be where I am right now, as far as I've gone without the implant.
[00:22:01] And I'm not saying that. Everyone needs an implant I'm saying for me, it opened doors that I don't think I otherwise would have had. If I was just wearing hearing aids, I would have found a way to succeed no matter what, but this was life-changing for me. Wow.
[00:22:23] Carrie Spangler: That's so amazing about, you know, you get to.
[00:22:27] It was the, um, the coconut implants went covered at that point in time through insurance
[00:22:34] Sam Atcherson: while I was still in school. So I didn't have the kind of insurance that would have covered it. Right. Um,
[00:22:40] Carrie Spangler: basic level insurance
[00:22:42] Sam Atcherson: at that time. Um, before we move on, I want to share one other interesting story related to all of this.
[00:22:50] When I went and had my cochlear implant evaluation. It was there. They discovered that I had large vestibular aqueduct, but it saw my CT scan and course up until then we had no idea why I'd have hearing loss because no one else in my family had hearing loss. So it was kind of an interesting feeling and moment to go, oh, I now know what caused my hearing loss.
[00:23:22] I now know why there was progressive. I now know why. And he kind of rough sport that I did probably contributed to those changes in my hearing. I do remember getting hit in the back of the head when I was working, um, at big glass. Um, it's a, um, That's a big store, like a Walmart or something. So anyway
[00:23:46] Anyway, I was hanging up hammers and the, the wall buckled and all these hammers started dropping on my, I wasn't injured, but it did change my hearing. So when I got that news, I sent an email to my entire family and I said, I now know why I have hearing loss and guess what happens? My grandfather sent me an email back.
[00:24:18] This is hard.
[00:24:23] Wrote me an email saying that he was so relieved to know that that was the cause because when I was around three or four years of age, he came to visit me and my family. My parents went to work. My granddad was at home with me. I put on my Superman costume and I wanted to show my grandfather some tricks.
[00:24:53] So I'm jumping back and forth between two beds. My last step I misstepped and I hit my head really hard on the side post of the other bed. And it was right around that time that my hearing loss was diagnosed. My grandfather held for over 20 years, guilt that he had caused my hearing loss. He never told anyone else about it.
[00:25:23] Carrie Spangler: Wow. That's a lot hold on right?
[00:25:26] Sam Atcherson:
[00:25:33] Carrie Spangler: But I always feel like. I experiences as audiologists to, you know, have hearing life, like just your story right there, finding out during a cochlear implant process about EVA, I'm sure you have a patient that you would want. It'd be like, okay, we're getting an MRI. You need to get an MRI or, you know, like, not that you would prescribe that, but you would recommend that.
[00:26:00] Because just the things that our experienced that we went through, I think make us stronger. However, we also have this insight and intuition in us that says, Hey, maybe you should look further into this or that because of our own experiences.
[00:26:19] Sam Atcherson: I hope it makes me a better investigator, a better diagnostician, um, But most importantly, I think living with hearing loss has given me a sense of, uh, empathy, um, how I want to share about the whole person and not just what's on the audiogram, what I got from them in the booth.
[00:26:47] And I think that's something that good audiologists do anyway, whether you have hearing loss or not, we just need to be able to see the whole person. Yeah.
[00:26:58] Carrie Spangler: So kind of backing up a little bit. I know you said in grad school, and when you started your PhD is kind of when your hearing had dropped a little bit more for the, um, and you pursued that cochlear implant path, but how did you pursue the field of audiology?
[00:27:13] What got you started?
[00:27:18] Sam Atcherson: I'm laughing because. Right. So when I, when I was in high school, I got called into what I thought was going to be the principal's office. Well, actually it was a guidance counselor who wanted to talk to me. And so the guidance counselor noticed that I had a really high GPA and wondered if I had thought about college.
[00:27:43] I hadn't even thought about college. I was just so focused on graduating from high school and getting a job somewhere. So I bring that up because it was this guidance counselor that really got me thinking about higher ed to begin with, which meant. What do you want to major in? I don't know. Well, what are you good at?
[00:28:09] I'm good at art. I work in a restaurant with my mom. I'm good at cooking. I have good customer service stills. I'm like, I don’t know. So I ended up taking, uh, Uh, I don't know what they're called now, uh, of jobs. Oh, like a career inventory, their inventory. Right. And it says something about, um, health care. And so I chose.
[00:28:42] A field that I thought would allow me to be in healthcare, but not have to work with patients directly, or this is the extent of my knowledge. Okay. So it has nothing to do with any of the disciplines out there. They're all wonderful. But I was like, well, I don't want to be on the front lines working with patients.
[00:29:02] So I'm going to do pre medical technology. But I'm going to completely embarrass myself here because at the time I had no idea what that was. I just thought I'd be working with computers or doing something in the healthcare field. So I'm in college and that's my major. I'm taking all the biology, the chemistry, the human anatomy, I'm doing great and all of those things.
[00:29:30] And then I needed new hearing aids. So at that point, I was living with my mom to spend the last two years of high school with her. My parents divorced when I was seven. So I wanted to spend time with my mom before I became an adult. Um, so I go to an audiologist I had never seen before. Um, and his name is Richard Wright.
[00:29:58] He passed away to cancer probably about 10 years ago. So I miss him. But when I came in, my mom has sent him some of my old audiograms and he thought I was completely deaf and probably signed and he's freaking out thinking he needed to get an interpreter somewhere. And here I am, I show up and I'm talking.
[00:30:24] So he does the evaluation? My hearing hadn't changed much, but yes, I needed new hearing aids. Well, during the counseling session, he asked me, um, what I was majoring in, in college. So I said pre medical technology and gosh, oh, health care. That's cool. What do you think about audiology well I blew him off
[00:30:51] Because I was like, How am I going to be able to do the speech test? You know, that thing like he's like, well, we have speech materials on CDs. Now you don't even have to say those words yourself. And clearly you're a good lip reader. I still blew him off. Well, as year later, I go back for my annual checkup.
[00:31:16] See how my hearing aids are hearing. See if my, my hearing has changed and he had just hired a new audiologist and her name is Kim Carr, and I'm going to embarrass myself again. I thought she was the most gorgeous woman I had ever seen in my life. She asked me the same question. What do you think about audiology?
[00:31:41] Well, I didn't say yes right away. I said, well, that's what the other guy asked me last year. Why should I go into audiology? And so she was sneaky about this. What she did was she asked me if I would come and speak to parents of children with hearing loss. So I said, sure, what am I supposed to talk about?
[00:32:06] She said, just talk about your life and answer the questions that they have. And that was the pivotal point for me. I saw the difference that I could make in the lives of parents who have children with hearing loss. And so after that, My audiologist. Kim asked me if I get an application from the university of Georgia, would do you at least fill it out and send it in?
[00:32:37] I said, yes. Um, that's how the story begins. Wow.
[00:32:44] Carrie Spangler: That's awesome. It's always interesting to hear how I, you know, peeps, who I audiologists who have have grown up with hearing loss, how they kind of got navigated. Into the field. And my story is very similar. It was my audiologist who I was going for annual hearing test.
[00:33:06] So I'd, have you ever thought about audiology and I was undecided health. Major.
[00:33:16] Sam Atcherson: We have parallels too. I
[00:33:18] Carrie Spangler: know. Right? So it was, I had no idea. I don't think many people know what they want to do at age 17 or 18. And I did the same thing career inventory and and said, I might be good working with people. And so I chose.
[00:33:35] Health care as a, you know, more broad and a couple of years later, okay.
[00:33:42] Sam Atcherson: I'm going into audiology,
[00:33:48] Carrie Spangler: but kind of goes back to grad school. And once you got accepted, did you have any road blocks going, you know, getting through your graduate program or your Ph program or PhD program because of your hearing challenges?
[00:34:07] Sam Atcherson: Um, I did not. Other than what I was saying earlier. Um, the year prior to getting my cochlear implant, I did have struggles, but I also knew that the rehab period would probably be difficult.
[00:34:25] And so I spoke with my major advisor and, um, The advisory committee and they allowed me to go part time, not really part time, but I lowered the number of credits for a couple of semesters to let my brain catch up and do a lot of intensive rehab. And that was actually great. I still spent a lot of time in the lab, but I didn't have the demand of the coursework.
[00:34:54] Um, and once that was over that the thing that changed was. I went into a PhD program thinking I would never be able to practice clinical audiology again, after getting the cochlear implant, I ended up getting my license in audiology and started practicing. So that doors swung wide open for me. Um, I would say the only real road block I had was.
[00:35:26] Learning how to do audiology as a person with hearing loss. That's what got me thinking about our group. My next
[00:35:41] Carrie Spangler: question, into that. So, because of your own experiences, you started thinking about this group that you needed to get together. So can you share
[00:35:53] Sam Atcherson: a little bit more about that? Yes.
[00:35:55] Um, and if you're looking for anybody else to bring onto your podcast, um, you have to bring Suzanne Yoder into the mix and it's because, um, Around that time. ASHA someone had asked her and I wish I knew who it was. Um, but someone at ASHA had, um, contacted me about a student at the university of Pittsburgh with hearing loss and wondered if I would be willing to talk to her about what’s like and I'm sitting there going, I'm still in school, you know, but.
[00:36:34] Fascia already knew. I had just gotten a cochlear implant. It was in the ASHA leader. Um, you know, I had finished my master's degree and was now working on a research doctorate. And so I just thought that maybe I might be a good person for her to just bounce ideas off of, and Suzanne and I started emailing quite a bit and we realized that we had many of the same questions.
[00:36:59] How are we going to do speech audiometry. Um, how are we going to check hearing aids? Um, what, what happens if we don't understand what a patient says, what are some strategies that we can use to compensate for our own hearing loss and still be able to provide high quality services. And then we went to.
[00:37:25] One of the, uh, American academy of audiology meetings. And after that meeting, we realized how difficult it was for both of us just to attend the meeting. There was noise. There were people who were giving presentations and not repeating the question. So we had no idea what question was being asked by a member of the audience.
[00:37:50] We went to sessions. where the speakers would turn the lights off so we no longer could see face. I mean, it was just, so what did we do? We wrote article for audiology today called the Irony of Audiology. And I think AAA paid attention to some of that, that instead of us, um, Uh, sending a proposal every year for a round table.
[00:38:19] Yeah. They just said, Hey, did you need space this year? And so they've always created a space for us. Um, but they've provided, um, um, captioning, interpreters, uh, for that meeting specifically. And that's been great. And so from there, The group just grew, but we weren't just the association of audiologists with hearing loss from the get go.
[00:38:45] It was really more of a support group. Um, and what I was said has changed over the years is the people who came the first couple of years were really angry people. They came because they felt, I mean, we're talking 20 years ago, right? We had people come angry that they didn't get the support that they needed when they were in graduate school.
[00:39:13] Now talking about today, you don't hear that as much. Of course, every student is different. Every individual needs different things to be successful, but you don't hear that level of anger anymore. What you now see is all right. I'm having this problem. What solutions do you guys have? And we've just all jumped on that.
[00:39:38] We have a Facebook group page now for you to have a webpage. It probably needs some updating, but I, again, for the second time in my life, I don't feel alone, not as a person receiving loss and certainly not as an audiologist with hearing loss, there is no excuse anymore. I
[00:40:00] Carrie Spangler: know, and I, how many people right in that Face book group
[00:40:04] Sam Atcherson: group, um, This might've been a couple of years ago when I checked, I think they were like a hundred over a hundred people subscribed to it, and that could be unilateral, unilateral hearing losses.
[00:40:21] Bilateral hearing is. Um, cochlear implants. We might even have some people in there with auditory neuropathy spectrum disorders, um, some have private practices. Some are in universities, some are in hospitals. I mean, it's a very diverse script.
[00:40:40] Carrie Spangler: is, but I agree too, to have that support and to be able to mentor the younger, um, rising professionals, I think is important to you.
[00:40:53] And I think you, like you said, you've been contacted by other. Uh, professors at other universities who are kind of trying to help someone navigate. So how, how has that changed you? Can you share some experiences of being able to mentor those students?
[00:41:12] Sam Atcherson: Yeah, absolutely. And I won't, I won't name specific schools or students, but, um, you know, some schools for whatever reason might have more students with hearing loss than others.
[00:41:26] And it's typically the schools that don't get students as often when they start searching around for, for help. Um, they'll often find me. Or maybe Suzanne or the association of audiologists with hearing loss. But if they're, if they're already in an academic setting and they know that I'm in an academic setting that’swhen they're like, okay, I'm just going to go straight to the horse's mouth.
[00:41:52] Um, and so we started having conversations about how can I help my student in the classroom? What has worked, what hasn't worked. Um, how do you guys You know, provide funding for captioning or an interpreter? And I may not have all the answers for that, but I certainly can point them in the right direction.
[00:42:14] Um, but probably the single biggest question is how can I ensure the students will be successful when they go off campus? Yes. And I think probably the number one answer is you've got to teach that student how to advocate for themselves. And you're not in your head because you and I wrote an article on this very thing.
[00:42:41] Um, they've got to learn their skills in graduate school, or they're just going to flounder when they're. When they graduate and, and they're having to do this independently, so why not learn it now in graduate school and what I would consider a safe space? Um, yeah. Also during that time, you really should look closely at the technology that they're using and do they need to be making some changes like now that will set them up for success in the future.
[00:43:18] So those conversations can go. And a number of different directions, but ultimately, ultimately that comes down to how can I help my student be successful in the classroom and in the clinic? Yeah.
[00:43:35] Carrie Spangler: I agree with you a hundred percent, because I think a lot of students who decide to go into audiology, they grew up.
[00:43:44] Kind of like we did in a more mainstream setting. And I mean, you were lucky to have that advocacy support, but I wasn't. So I didn't know what to ask for. I mean, other than knowing I have a hearing loss, like you're learning along with you, classmates about audiology, except that you have, you know, personal experience, but.
[00:44:05] I agree that advocacy and being okay with sharing your story and what you need and how someone else can help you is really important. And the technology piece, a lot of those students haven't used a DM system or captioning or anything before. In fact, these are things that are going to really open up
[00:44:30] Sam Atcherson: doors for you.
[00:44:30] Yeah, absolutely. Absolutely. So tell me
[00:44:36] Carrie Spangler: a little bit before we kind of wrap up today, I would love to hear a little bit about some of your PhD research and what your favorite part of research is right now.
[00:44:49] Sam Atcherson: Um, I'm laughing again because I spent five and a half years of my life learning everything about electrophysiology, you know?
[00:45:03] Um, I don't regret any of that training at all, because I think that training helped me understand the importance of plasticity in the brain. Okay. And. I knew that if I could at least learn that I could apply it to other areas of audiology. My mentor told me that part of going through PhD training is to prepare you to be an independent researcher, no matter what your topic area is.
[00:45:39] But certainly if you want to be an expert at a particular area, you have to do the time. Okay. So just because I switch from one thing to another, doesn't make me an expert at the next thing. You have to really get into the literature, learn what the problems are and try to be part of the solution.
[00:45:59] So I still dabble in electrophysiology a little bit. I'm fascinated by it, particularly with technology that works well and you see evidence of that change in the brain, but there. Other people that are far better suited to do that kind of research. But I certainly like to share that research with my patients, with my students.
[00:46:26] What I've been doing lately is I think I'm uniquely suited. As a scientist that can help people with hearing loss in a different way. Vocationally. Um, so you had mentioned in my bio that I've been part of the association of medical professionals with hearing loss, and these are. What I would consider very high caliber people with hearing loss who have gone above and beyond, and they are truly helping other people and their only obstacle hearing loss.
[00:47:08] So when I joined that organization, I was. Maybe one of two or three audiologists there, everyone else was like either a physician or a nurse or a dentist. Um, you name it. I very quickly learned one. Stethoscopes was a problem and two face masks were a problem. So very early on, I tried to see how I could.
[00:47:43] Assess study the use of stethoscopes. So, um, I started doing some recordings with conventional and amplified stethoscopes, and one of the most important things I've learned in my research is that hearing aids and cochlear implants because of the design and the size and shape of the loudspeaker and the microphone, they don't.
[00:48:12] Amplify low frequency signals very well, fast, problematic when you're trying to listen to some very low frequency heartbeats. Okay. So when I started sharing that information with my colleagues, they're like, well, that explains everything, you know, because no one else had explained that before. Um, and. And now we're starting to see some newer, um, amplified stethoscopes.
[00:48:45] They're certainly amplifying things better. They're saying, just take the implants off, take the hearing is off use headphones, which will boost the low frequencies. And you'll be able to hear everything was this. You hear everything including all the noise in the room too, because it's so sensitive. So, so I'm still trying to help.
[00:49:07] Um, solve some of barriers, um, uh, problems and answer questions about that. But because hearing is, and cochlear implant technology seems to be. Changing all the time and everyone wears different devices. It's really hard to tell any one person exactly what to do. So I have to deal with this on a case by case basis, and I've been able to help some people in that regard, the face mask stuff.
[00:49:41] I was doing this before. COVID 19. Okay. I simply wanted to find out, well, one. Does the use of face mask alone, distort speech to the point that we should be paying more attention to this? The very first study I did was, uh, uh, using dental office noise. Um, and we used the connected speech test as the material that our participants would have to repeat and the presence of dental office noise.
[00:50:19] We did normal hearing and we did moderate hearing loss and. And yes, noise was a problem for both of them, but to a greater degree for the individual with moderate hearing loss. And this was the, the non transparent or opaque mask. But what we didn't know was how it affected people with severe to profound hearing loss.
[00:50:42] So I did another study later and that study also incorporated the transparent mask too. And we saw that. Um, just to summarize it really quickly, um, the severe to profound listeners benefited from the transparent mask, um, and they were affected by the noise in a different way. But what I wasn't prepared for is that we had some participants who didn't wear hearing aids at all.
[00:51:13] And they weren't affected by the noise. So they were completely dependent on what they could see on the mouth. So they had 0% with the opaque mask, but with the transparent mask, they were getting like 20%. Correct. I was like, wow, that's really cool. So that led me to working with one of the inventors of a transparent mask, um, Genie Han.
[00:51:41] She invented the face view mask. And so we were able to get some NIH funding. So I did another study and I'm working on the results of that for publication. Um, but during COVID, since everyone was wearing the mask and. An article came out very early on. I think it was February saying that surgical mask and N 95 mask were lowering and distorting speech.
[00:52:13] I jumped on that because my question was, if that's what's happening to surgical mask and 95 mask, what's happening with the transparent mask. Matt, you have this other barrier in front of your lips. And so I was starting to see levels drop like 12, 20, 28 dB, if you will. And so one of the best ways that I've heard this being described as that, if you have normal hearing.
[00:52:49] And you're around people waving masks. It like, you have a mild hearing loss, but what if you have a moderate hearing loss, man, you just made that hearing loss even worse because of the presence of a mask. So that's what I've been working on these days. Um, and now that people are getting vaccinated and the restrictions are being relaxed in health care.
[00:53:18] Masks are not going away. So I'm going to continue this, this line of work. Um, and, and hopefully that helps because it all started with how can I help my colleagues and medicine and nursing and dentistry when they have to wear a mask and they'd have to communicate with their colleagues who were also wearing masks.
[00:53:42] Carrie Spangler: Right. No, it's such timely research obviously with our whole pandemic, but at the same time, like you said, there's always going to be situations where masks are going to be needed and to be able to have solutions for accommodations and support is really important as well. Not just, you know, your research is critical because it's going to give the facts and the bottom line of why we need to have certain accommodations in order to support our patients or our medical.
[00:54:15] You know, faculty and professionals as well, so
[00:54:20] Sam Atcherson: important similarly. So that's, that was the conclusion of the most recent paper that we had published. So what mask obscure muffle reduced the intensity of speech? We now have to think about solutions. So if you wearing them, what can we do to overcome that?
[00:54:40] So, absolutely. I agree with you.
[00:54:43] Carrie Spangler: So just to wrap up, this has been such a powerful great content conversation. Is there anything that I didn't ask you that you were like, oh, I hope Carrie asked me this on the podcast today.
[00:54:56] Sam Atcherson: Um, you know, as I was doing this podcast with you, I talked about my aunt and I've talked about my grandparents, but I also want to give a lot of credit to my mom and dad.
[00:55:08] Um, my mom and dad treated me as if I were any other kid. And I think that is so powerful. You know, I can say that my grandparents did this, my great aunt, the desk, but what my mom and dad did for me was because they didn't treat me any different than anyone else. It made me believe that I could survive in this world.
[00:55:39] And they provided the things that I needed. They provided the opportunities. Um, they continued to support me in any way that they can. But because they are not treating me any different, that just builds me up. And, and I hope that parents do that for their kids. Um, whether they have a hearing loss or not a disability or not a difference or not, but the role of parents is so important.
[00:56:11] And I, I really appreciate my mom and dad for that too. Um, other than that, Sometimes, I feel like my story, isn't all that unique. Um, because I I'm inspired by others, um, including your story too. Um, but we are living in a day and age where it doesn't have to be about I can't anymore. Sometimes it's just a matter of finding the right solutions and having the right support team behind you.
[00:56:44] Carrie Spangler: Yes. I agree. A hundred percent. Well, Sam, I am so glad that you were able to come on to the empowEAR audiology podcast. And I know that your story is going to inspire families, going to inspire adults who are on this journey and the professionals who are out there who need to hear. The story as well. So thanks again.
[00:57:08] And I'm going to have you, is there any way that people can get a hold of you if they have any questions and I can definitely link your information to the show notes of the podcast as well.
[00:57:20] Sam Atcherson: Absolutely. Feel free to give them my, um, you AMS email address. Okay. I will. I love people all around the world.
[00:57:30] Carrie Spangler: Well, good.
[00:57:31] Well, I just want to thank you again, and I want to thank all of our listeners for listening and tuning in to empowEAR Audiology. And if you like this, please, um, give a favorable rating and share this podcast with your friends and family and colleagues. So thanks again.
Thank you Carrie
[00:57:52] Announcer: This has been a production of the 3C Digital Media Network. .

Episode 20: empowEAR Audiology - Karin Weiser

Announcer: Welcome to episode 20 of empowEAR Audiology with Dr. Carrie Spangler.
[00:00:15] Carrie Spangler: Welcome to the empowEAR Audiology Podcast, which is part of the 3C digital media network. My name is Dr. Carrie Spangler, and I am your host. I am a passionate audiologist with a lifelong journey of living with hearing challenges in this vibrant hearing world. This podcast is for professionals, parents, individuals, with your own challenges and those who want to be inspired.
[00:00:44] Thank you for listening, and I hope you will subscribe, invite others to listen and leave me a positive review. I also wanted to invite all of you to visit and engage in the conversation on the empowerEAR Audiology Facebook group transcripts for each episode can be found at www. 3, the number three, C digital media network.com under the empowerEAR podcast tab.
[00:01:17] Now let's get started with today's episode. All right. Let's get started with today's episode of empowerEAR Audiology. I want to share that one of the joys of doing a podcast is you never know what kind of connection you might make. So today I am really excited to have a guest who resided on the other side of the world and because of networking stories, I paths I'm connected in a personal way.
[00:01:43] Let me share an introduction about Karen. She is British by birth. Global by choice Karin has lived and worked in nine countries across four continents, extensive travel, European roots and cultural savviness. Give her a license to operate globally. 20 years of business experience spanning the pharmaceutical industry, executive search and market research in London, her passion for people and words has been uniquely combined during her career.
[00:02:16] She has taught English as a foreign language around the world and has more than a decade of experience in learning and development communications and people in change. Her own story has been rewritten many times, which has led her to work with storytelling. Her fascination with the human mind and resilience shown in the face of adversity means she always has an inspiring story to share.
[00:02:43] She started her journey as a coach and a mentor in 2008 after immersing, herself, and the world of neuro linguistic programming. She became ICF certified with coaching in 2017 and has not looked back. After hearing this internet introduction, you might think, what does Karen have to do with empowerEARed Audiology?
[00:03:07] Let me introduce Karen and we will find out so welcome to the podcast and thank you for being here.
[00:03:15] Karin Weiser: Well, thank you for inviting me, Carrie.
[00:03:18] Carrie Spangler: So do you want to share with all of my listeners a little bit of how we got connected?
[00:03:24] Karin Weiser: Yes. I'm happy to do so, so well. Let's just put it on the table. I'm also hearing impaired and I had quite a journey to get to where I am today as a successful cochlear implant user.
[00:03:41] Three years ago, I got my, my cochlear and I was activated and it's changed my life. And about a year ago, I started blogging for the IDA Institute, and I think I've done four blogs in total and the latest blog. Was published last month and you commented on it. And it was about my journey leading up to getting a cochlear implant, which I know that the Ida Institute has told me is, um, I don't think they've got many stories to share about it.
[00:04:16] I think it's still relatively new, even though they've been doing cochlear implants since the early nineties, I believe you might know more than more about that than me and I reached out to you and we got connected. We had a dialogue and I offered my story to share via this podcast. And we jumped on the opportunity and here we are.
[00:04:40] Carrie Spangler: I'm so excited that you're here. And then just for our listeners, if anybody's interested in the Ida Institute, it is located in Denmark and they are an independent nonprofit organization that works on building a community that embraces person centered care. So with clinicians and academics and people with hearing loss around the world, um, they help to develop knowledge.
[00:05:03] Skills and confidence to better manage hearing loss. So you can always get onto the website and find the many tools that they have to offer, um, for professionals and for families and individuals who do have hearing loss. So just a little plug in there, but for them. And I had told Karen that I actually.
[00:05:23] Was over in Denmark, um, several years ago, working on a project with the Ida Institute. So our paths have crossed, a different time because of a common connection. Um, but I was exploring your website and I love your motto of helping professionals and organizations to rewrite this stories and walk their talk.
[00:05:45] So can you tell me more about why you believe storytelling is so important?
[00:05:52] Karin Weiser: Well, basically the human brain is wired for stories. We tell stories all the time in our casual conversations without actually realizing it. And I've used storytelling in my corporate days and learning and development, or as in encouraging my subject matter experts to start their training with a story.
[00:06:13] And why, because that's how we learn stories, open up for emotions and make facts and figures colorful and make it stick. Then there's the stories we tell about ourselves and we're unaware of them less. Sometimes other people will point them out to you. And that's my, I'm going to say expertise as a coach, sometimes holding up the mirror to let the other person know.
[00:06:42] Do you hear what you're saying about yourself? Um, do you know, storytelling is an effective tool that's used in communication to influence and change behavior? But, you know, the stories that we tell about ourselves can really influence our beliefs and whether we think something's possible for us as well as affect the outcomes.
[00:07:07] So we need different stories for different situations. And, you know, we also need to be aware that we always have a choice about what story do we want to tell this? Let's give a global example. What story are we all going to be telling about the pandemic? I'll leave that one with a question, mark, but going back to hearing loss, what story do you want to tell about your hearing loss?
[00:07:32] Are you a victim or a survivor? And you know, just to highlight again, you can change your outcomes by changing the story.
[00:07:44] Carrie Spangler: I love that. I think storytelling is so powerful and you just put it, those words in such a way that makes us realize the importance of storytelling from many different angles. And I think after reading your blog that you did, um, I.
[00:08:05] Um, it seemed that you had to rewrite your own story as it comes to your hearing journey. So can you share a little bit more about that? How you read about your own story, about your hearing journey?
[00:08:17] Karin Weiser: I, um, yes, so I found out about my own hearing loss when I was 15 and, uh, that's going back more than 30 years and I was basically told to go away and get on with it because there's nothing we can do.
[00:08:34] Um, neither my parents, or I challenged that now, given that what I know today and when it was not that I'm that old, but it was in the late eighties. And I have an unusual hearing loss where half of it is pretty normal and the other half is pretty bad. And I actually believed that there was probably nothing around at that time technology wise that could help me.
[00:09:02] So I did just go away and get on with it and spent the next decade, living my life, studying languages, traveling, living abroad, teaching English around the world and getting a degree in, in languages, Danish and German, and I have had in France. So I, I speak three European languages. And when I started my first.
[00:09:28] Permanent full-time job, mid, mid twenties. It was in London and that was in the late nineties. And I experienced discrimination in the workplace. I had never been introduced to any information about what hearing loss meant. I had no tools. So my initial reaction just brought up all the feelings of.
[00:09:56] Embarrassment, not feeling whole, I didn't know what to do. Although I knew some of the things I couldn't do. And this was related to the particular job I couldn't transcribe from recorded conversations because I would not get it all. And I struggled with a role as a kind of switchboard taking telephones and passing them on to the consultants.
[00:10:19] In an attic, what was working in an attic? Five people, fax machines, you name it. Background noise is a killer. As you know, Carrie and I was demoted to shredding paper. I was deeply unhappy. I found another job and again, shied away from. Dealing with it. Although I did see a consultant in Harley street, but again, in those days, hearing aids were super expensive.
[00:10:50] I didn't have the money for it. And I considered myself living in a really noisy city and I just thought, but you know, there were many hours in my life where it was okay. I wasn't struggling. And. Cutting long story Short time when worked abroad again a bit more. And I ended up moving to Denmark in my late twenties and I was told, Hey, hearing aids are free here.
[00:11:14] I did explore getting two. And within a couple of years, they ended up in a drawer. I did not use them. I later understood more. What had happened. I had not received the emotional support that I needed. I have not received the patient centered care that I know that Ida Institute. Is promoting. And a few years later.
[00:11:40] Another story short, I decided I kind of pulled myself together and went back, go, right. I need to get some help. By then there was such a long waiting list in the public sector that I went private. I was in my late thirties at this point and I got my first hearing aid and this audiologist became my guardian angel in disguise.
[00:12:04] And that was my first experience of patient-centered care. And she dealt with the emotional side of getting a hearing aid and supported me almost for the next decade before I had got. Bad or that bad that I needed a cochlear implant and had to go back into the public sector. I know it was different from country to country by that because a cochlear implant belongs to the hospital sector, here in Denmark.
[00:12:32] And, um, yeah, so I struggled for many years, but a lot of it, I, I did innately, I developed my own, know how of what to do, but from. Just for example, in meeting rooms, making sure I sat with the window behind me so that I didn't have bright light coming into someone's face and asking people not to chew and speak at the same time.
[00:13:04] I mean, or to face me, but people forget, even though they know you have to keep repeating it, that becomes tiring and itself. Um, yes, it's been quite a journey. Do you have anything else to sort of add here before I go off on a tangent,
[00:13:23] Carrie Spangler: I kind of wanted to think back what you said, that the one doctor told you when you were 15 and your family, that there's nothing we can do and go home and get on with it.
[00:13:36] Did those words impact you at all?
[00:13:40] Karin Weiser: To be honest, not really. Only to the extent that that was what I used as my guiding star on that point though is not until we can do. I just have to go in and get on with it. And honestly, in the next decade, there was nothing that stopped me doing what I did. Yes. I had some situations when I struggled.
[00:13:59] Yes, I was no good. I couldn't have a proper conversation with me when I was at a disco, but most of my friends would remind me, nobody came, you know, you ended up sometimes building up little things of all the things you can't do, but people remind you, this is difficult for us as well. So it's even more difficult for you.
[00:14:16] And I have the kind of personality that's pretty determined and I persevere. And I kind of rolled my sleeves up and decided I decide what I can do, but obviously wind forward 20 years. Some of the things that I, or the list of things that I couldn't do was getting longer. And that's when I realized. My hearing was getting down and because I had moved around and lived in so many different places and switched from different or a couple of different audiologists, I didn't have somebody who had my hearing curves for the whole time.
[00:14:56] I didn't have that evidence but. You don't really need that to make that decision at the end. When you, when you know that you are a cochlear implant candidate.
[00:15:07] Carrie Spangler: Yeah, which I think kind of gets to my next question. Could you just share more about that journey to the cochlear implant?
[00:15:16] Karin Weiser: So it's something I didn't really know much about and you just, you just see the device on people's heads.
[00:15:22] Um, but I had, it was during the autumn of 2016, I had experienced that. Sometimes some of my colleagues were actually quite near, but I was saying, come closer. I can't hear you. And usually I wouldn't have an issue with their voice because there were some, as, you know, two pitches that are more challenging than others.
[00:15:46] Um, so I went to see my audiologist and, um, we did a hearing test and she said, I think it might be time for you to explore a cochlear implant. And I had to push myself back into The public sector and it took a few months to get an appointment. And then I went through various tests and that was a bit of a slow journey to get to those appointments, those initial appointments.
[00:16:09] But I remember the doctor sitting there and saying to me, we think you'd be a candidate and it would have a high. How can I put it? There's a really good reason, um, risk or opportunity for this to work for you. And he gave me the reasons is that you're, you're a linguist. You do something the rest of us don't do.
[00:16:39] And. Everything just, I mean, I was tested in Danish and English is my mother tongue. So I was obviously probably a scoring a lot less than in another foreign language, which is a bit of a mumbly language. Um, I don't know. I think it was like he held up a mirror to me and I didn't see that. I, I didn't want to wear the label that he gave me.
[00:17:00] You gave me a label as you're severely hearing impaired, and I'd always just sort of worn a label. That was, oh, I don't hear so well, you know, um, if you look at the meaning of those words, there's quite a bit different. So that was a shock in itself to actually acknowledge that I'm severely hearing impaired.
[00:17:20] But that is this sort of label. You have to have to be a candidate for the process. And I went through the various tests, brain scan balance you name it. And I think when the, the letter came through in the post and I saw it in black and white, that I was officially cause his estimate. It was only an estimate that 4bmonths later, I'd done various tests.
[00:17:48] Then that made me realize I've got to do this.
[00:17:54] Carrie Spangler: Yeah. I think one of the things that you said in your blog, um, you have a quote by Tony Robbins that states it is in the moments of decision that your destiny is shaped. Can you share, it sounds like that was kind of one of those moments. Can you share more about how your mind shifted and that impacted you?
[00:18:16] Karin Weiser: And, you know, it was seeing it in black and white. And I had obviously read that quote about the same time I realized I've come to the end of a road where I had nothing to lose. Of course, I didn't know what was waiting for me, but I had reached out to the international cochlear implant Facebook group a few months earlier, just as I had started these tests.
[00:18:40] And I remember two Comments really stick with me today. And I have written about them in the blog. One of them was somebody had said,
[00:18:54] expect nothing hope for everything. And I thought, great. And another lady had written make sure you're 100% ready. Don't don't. Do anything you don't want to do, make sure you, and I know she was talking emotionally, make sure it works a hundred percent ready. And that's the one thing I'm going to say about the diagnosis to not once.
[00:19:18] Did I feel any pressure I was told I could complete all these tests and then once you get the letter in black and white, if I didn't want to do it, I could put it on hold and these tests would still be valid. And it could be six months or two years before I have to, I could make the decision. And, and that was it really.
[00:19:40] I know there's another thing that I had told you. I told myself during the, the journey of studying my hearing loss and coming to terms with it, I had often said to myself, what doesn't kill you, makes you stronger. And yes, there is a risk and any operation that you might not wake up. I mean, that's just like, well, you know that one, but it's minimal.
[00:20:01] If you're a healthy person and you're going in for something that's not life-threatening. So I've kind of just decided to do it. And that was at the end of September. By the end of October, I had a date with a surgeon and I made the operation date with him for after Christmas. And I chosen the color of my device and which device we could choose between four different products.
[00:20:27] And I just sort of did it
[00:20:30] Carrie Spangler: . So once the ball got rolling and you made that decision, but I think your point. Yes, we have to be a candidate just from, you know, the hearing test itself. But that emotional part and being ready is important too. And I don't know if whatever, a hundred percent, but we have to be at least more ready than less ready in that kind of a situation.
[00:20:56] I know for me, it took me a while and I'm an audiologist to get to the point where I was mentally ready to make the decision too. So more
[00:21:06] Karin Weiser: than I did, you know, you probably have more information about hearing loss tools, you name it. So, so that, that, like you say, I think when you are emotionally ready, it increases your outcomes.
[00:21:19] Or gives you a higher chance of being open to all the different things. So I knew some facts and figures of what I would experience with the Mickey mouse noise to start with, because I still had some natural hearing and a hearing aid in the other ear. It was just funny to start with. And I must admit that phase when disappeared quite quickly for me, I still have to go back and think of some funny situations.
[00:21:47] They're actually five days after coming back to work after my activation. So I'd had five days of double up Mickey mouse noise. I did a presentation in front of 150 people, but I chose to take my. Device off because it was too confusing and I had. Um, my boss has already questions. You're going to repeat it.
[00:22:10] Cause she was sitting right in front of me because I was really worried about not hearing the questions from a big auditorium, but those are the kinds of things. And I just thought I've got to do this because it was holding on to who I was and what I could do, but I took it up. I didn't wear it because I didn't want that noise to, it was confusing.
[00:22:29] Carrie Spangler: Yeah. So I'm five days out. You're still, your brain is. Trying to figure out a lot of different information at that point in time. So there's not enough experience at that point. So is there anything that you've learned through this whole process
[00:22:47] Karin Weiser: to share with others who the going through it, but tell you what, going back to the stories, you know, when I think back to my journey, I did not have access to success stories. I did. This was three years ago. Podcasts only just starting then they were not the norm. They're becoming more and more readily available.
[00:23:10] I lacked information. I lacked, I lacked information with people who are living in a foreign country and dealing with two or more languages other than the mother tongue. And I think what's nice is to share a success story, to give people hope. Why can't my story or my journey happen to other people. I know it's very different depending on your starting point.
[00:23:39] And you know, more about that one than may with the types of hearing loss there are, and there are even people who are profoundly deaf, who are getting cochlear implants and hearing things for the first time in their lives for you. And I it's, it's recognizing sounds that we've lost from our past because.
[00:23:58] I've always been part of the hearing world. Um, as I suppose, just like getting hope, but hope also in the way the work you have to do on yourself to be emotionally ready. And for some people that might be researching technicalities and for other people that might be recruiting people to be part of your support group, whether that's both in the workplace, as well as in your private life.
[00:24:26] And, and for others, it might just be building up that trust and you,
[00:24:34] Carrie Spangler: no, those are all good. And I think you have a point of view. Finding that support network is so important. Um, and your point of sharing your story is so important too, so that others can learn and, um, started their journey wherever they might be. Um, everybody has a different starting point, but those stories that we're able to share.
[00:24:58] It impacts people in different ways. And I think your whole point of storytelling is so critical, but other people, um, to understand as well. So going back to your, um, profession of coaching, um, and coaching others professionally, you talk about own it, walk it and talk it. Do you have an own it, walk, talk it story that you want to share about, um, recent and bad events and your cochlear implant journey either personally or professionally.
[00:25:31] Karin Weiser: You know what I'm going to say? Uh, everyone talks about owning your own story and that everybody we've got, everyone's got flaws. And some people are really afraid of sharing them, go through life, feeling embarrassed by them. I've been there with my hearing loss and I've got to the point where. I'm using it.
[00:25:52] I've turned it around as a strength and the opportunity to blog for the Ida Institute has been out there to share. Hey it's okay. Yes. I've got a bit of a silver lining story in terms of that, the cochlear gave me some hearing back that I never thought would be possible, but it's as wish I'd known. I know you've got your own one.
[00:26:14] It's not been an easy one to get there, but everybody's got something, whether it's a. And, uh, handicap that you can see or perhaps a health issue that makes them operate under par. Um, but it's part of your story. So I don't hide hide anymore. And even though I can hear some amazing things, I still have some limitations and I'm now armed with tools and better at communicating what I need to make me function in society.
[00:26:50] I'm putting up my boundaries for saying no. Um, I'm actually really super grateful to technology. I mean, I just think about the pandemic and the amount of online communication I've had to do in the virtual space with videos. And I've been able to hear without the video where, before it was always a needed the video and the podcasts and audio books and TEDx talks that I've been able to.
[00:27:17] Listen to and, and grow from. Um, you know, I just wanted to say, coming to terms with a disability is a bit like eat, eating a big cake and not every bite tastes nice. And sometimes, you know, you can't eat it all at once, so we need to digest and then move on to the next phase. And I know for many years leading up to getting the cochlear, but not realizing that that was part of my journey at the time, but just living with hearing loss.
[00:27:54] I was fed up of going to the, you know, another bit of technology that I needed to try out and another appointment. And I just wanted to get on with my life, but I realized it's because I couldn't do won't anymore. And I didn't want the attention. I just wanted to do what I wanted to do, you know, enjoy my life.
[00:28:12] So it's about that one bite at a time. And not everybody is tasty, but. Once you accept yourself. And I suppose a little bit of self compassion and self love coming through here because when you embrace your imperfections, life becomes a bit easier and I'll have to say. I don't really think about my hearing loss on a daily basis.
[00:28:37] I do in terms of just basic care for my device. And, um, I have moments that I really enjoy my quiet time, so I don't put my device on too early in the morning. And there are some advantages, but it's just a, it's not the elephant in the room anymore. And I'm so grateful for that. I put it in perspective, put it that way.
[00:29:01] Carrie Spangler: Yes. I like that. The cake analogy it's it does put things in perspective. So, and it isn't, you know, it isn't always tasty and other times it, it tastes really good. Right. And it just kind of, um, accepting all of those points along that journey. And I love your point about sharing. Sharing the silver lining, but also sharing like some of the struggles and challenges along the way so that other people realize, Hey, this not every person has a walk in the park, right.
[00:29:36] I'm experienced with it. So I think knowing that other people have these challenges along the way makes your journey a little more, you're able to self accept it a little bit more when you hear those stories from other people.
[00:29:52] Karin Weiser: As well as remembering not to have that victim story, but the survivor and, you know, I'm reading Glennon Doyle Untamed book at the moment. And I just, the other evening I dip in and out, and there was a quote that she went past on her lunch break to want to reread on her fellow teachers wall or something that said we can do hard things. And I've been saying that to myself too. And it's actually helped me when I think of what we've gone through on the pandemic.
[00:30:23] I thought, Hey, I've actually gone through something. That's a bit harder on a different level of personal level. And just before we opened up for the podcast, we talked about another quote that I love to share about Steve jobs. And this I think is really relevant for anyone on a journey, a hearing loss journey.
[00:30:44] No, you, you can only connect the dots Looking back, but you have to trust forward and yeah, you don't know what the future is going to bring, but we are so lucky to be living in such a society that is full of technology and things are changing all the time. New gadgets new everything. So it's all to our advantage.
[00:31:09] Carrie Spangler: It really is. I love that quote too. So is there anything else that you want to share that I didn't ask you?
[00:31:20] Karin Weiser: Um, so I work with international professionals who are ready to write the next chapter of their career story, but I also have a dream of actually working with other hearing impaired people. Who needs support to get to grips with their hearing loss journey or to prepare for the cochlear implant, or just actually deal with a hearing loss while they discover what their next career chapter is going to be.
[00:31:53] And perhaps they are fully, you know, there's no issues there, but they're sort of still exploring. I'd really love to work with people like that who might needs support from someone like me, where they can see, Hey, anything is possible because that's what coaching does for you. It removes your barriers and your obstacles and helped you see possibilities that you didn't think were open to you.
[00:32:16] And I think as a hearing loss individual, we we've had to change that perception of ourselves because there was a point when there were many things we couldn't do.
[00:32:27] Carrie Spangler: I love that. And then you have that vision from a personal perspective of going through that process and taking your professional expertise of coaching and just kind of putting that into perspective, but other people too, helping them put that into perspective for themselves.
[00:32:46] Karin Weiser: Definitely. And you know, I will be the biggest cheerleader. And accountability buddy, because I do have this belief that anything is possible. And I know that can be used to be put into the perspective. You know, we're not all going to fly to the moon, but do you know what I mean? And, and we are the ones that are getting in our own way.
[00:33:08] Carrie Spangler: Right. We are unique and that's what makes us our individual. And we all have different dreams that we want to achieve. So I love that you want to kind of put both your personal journey with your coaching perspective. I think that could be very helpful for people. So if people are interested, individuals who are deaf and hard of hearing or other individuals who want to, um, have some coaching experience, how can they connect with you?
[00:33:37] Karin Weiser: So you can look at my contact details and more about me and, um, on blogs and everything on my webpage, which was my name which is Karin Wiese.com. And you'll put that in the podcast notes and I'm also very active on LinkedIn and, um, yes, so email contacts from my website, and I'll be happy to, to have an initial chat with people and see if there's some chemistry there, but also if they just need to.
[00:34:05] Share that perspective and need some support.
[00:34:10] Carrie Spangler: Thank you. I really enjoyed this opportunity to connect with you and I think your. Ideas or your passion for storytelling is so important for other individuals and listeners to recognize that their story holds a lot of meaning and what we choose to tell is so important for others to hear.
[00:34:33] And it does carry a lot of passion and weight and influence when we are willing to share. I share stories with others. So thank you for sharing that. And thank you for sharing about your cochlear implant journey, because I know that is so important for others to hear who might be thinking about it or in the middle of the journey and want to have that support with others.
[00:34:57] Um, but again, I want to thank you so much for coming on the empowEAR Audiology Podcast. Is there anything else you want to share before we wrap up today?
[00:35:08] Karin Weiser: Yes. Just one last thing. That's come to my mind now about our own stories and what we choose to tell about ourselves. You know, life's a journey and we are constantly changing.
[00:35:18] So your story needs to change as well. So don't think that you've ever going to have a story and that's going to be static and that's it. You know, it needs to be changed as you go along and as you evolve, because we are different people from what we were 10 years ago.
[00:35:36] Carrie Spangler: Right. So there's different chapters that can make you keep adding on to your story.
[00:35:46] So that's a good thing. Change is a good thing. Uh, well, thank you so much for being a part of the podcast. And, um, I will put all of your information in the show notes so that our listeners will be able to reach out to you. Uh, if they want to connect.
[00:36:04] Karin Weiser: Thank you so much, Carrie. And I look forward to keeping in touch and, um, wish you all the best as well.
[00:36:09] And thank you again for this opportunity.
[00:36:12] Carrie Spangler: Thank you.
What did you think of that interview with Karen today? For me, this conversation validates why storytelling is a critical piece of the cochlear implant journey, the hearing loss journey. Whatever journey you might be on whether you are a parent, a patient or a professional. Own it Walk it talk it that's what Karen quotes parents own it. Walk it, talk it story about getting her hearing back through the cochlear implant journey is a powerful example of how to look at the silver lining and be grateful for the possibilities that open up. When we realized the power of taking small steps along the way to embrace imperfections.
[00:37:03] Karen, in this interview, she quotes Steve jobs, his quote, saying you can't connect the dots looking forward. You can only connect them looking backwards. So you have to trust that the dots will somehow connect in the future. She compares this powerful quote to her own cochlear implant journey. After this episode.
[00:37:28] Karin offered me a one hour personal coaching session. And it was just an amazing experience for me. Karin's personal experience of having a cochlear implant and her professional experience shines through and in a unique way that provided a positive coaching session. During this session, Karin asked just the right question and allowed me to have.
[00:37:56] Some aha moments about refining my own vision and how courageous storytelling with the words create a positive ripple effect for others who are willing to listen. She also challenged me to start a gratitude journal, which I challenge all of you to do as well to refocus my vision and achieve small and long term goals.
[00:38:19] I just wanted to say a huge shout out to Karin, but her storytelling and coaching experience. If you want to learn more about Karin, look it up in the show notes and you can click on a website and get in touch. Thanks again for listening to the empowerEAR Podcast, and I hope all of you will leave me a positive review, write a positive comment, and please share this podcast with all of your friends.
[00:38:50] Thank you. And enjoy.
This has been a production of the 3C Digital Media Network.

Episode 19: empowEAR Audiology - Dr. Angela Alexander

Announcer: [00:00:00] Welcome to episode 19 of empowEAR Audiology with Dr. Carrie Spangler.
Carrie Spangler: [00:00:16] Hi, everyone. Welcome to the empowerEAR Audiology Podcast. I am really excited to introduce this podcast with Dr. Angela, and I hope you enjoy this conversation as much as I did about auditory processing and auditory processing deficit. Dr. Angela has so much personal and professional knowledge to bring to this topic.
And I think you're just gonna feel her passion and purpose come through. When you listen to this podcast conversation, Since we have had this conversation a couple of weeks ago, I wanted to let all of you know that Dr. Angela has just released her own podcast called Between Two Ears. And she's also active on clubhouse, the social media app.
And you can join her moderated conversation on Monday nights in the room, talk nerdy to me. So again, I hope you enjoy this conversation with Dr. Angela about auditory processing. All right. Welcome everyone. Let's get started with today's episode of empowEAR Audiology.
I am really excited to introduce our guest today. Dr. Angela Alexander. She is a doctor of audiology and she graduated from the university of Kansas in 2010 with a doctor of audiology. She has a passion for the treatment of auditory processing disorders. Angela was privileged to have been mentored by Dr. Jack Katz, who is a world leading expert on auditory processing disorders.
She worked with Dr. Katz for seven years, between 2004 and 2012 in her knowledge and expertise. Now Angela works as an audiologist in Australia. She has what is called the auditory processing institute. And she's looking to train her peers in the skills needed to provide effective APD diagnostic and therapeutic options.
She aims to double the number of SLPs and AUD professionals providing effective auditory processing services through the app online APD masters course by 2022. Welcome Angela to the podcast. And thank you for being here.
Angela Alexander: [00:02:44] It is my pleasure.
 Carrie Spangler: [00:02:47] I'm really excited to have you today that you won't be the first person that I have on the podcast of what you're talking about, auditory processing, so I'm really excited to have you!
Angela Alexander: [00:02:58] Well, congratulations on finally talking about the most interesting stuff.
Carrie Spangler: [00:03:03] Well, it was bound to happen sometime. So I'm so glad that you are here. And I just wanted to say I'm so excited that we got connected on an online platform.
Angela Alexander: [00:03:15] Yeah. Who saw that coming?
Carrie Spangler: [00:03:18] It's so amazing how I could meet someone on the other side of the world and through a closed Facebook group and then clubhouse as well.
Angela Alexander: [00:03:27] That's exactly right. Yeah. It's amazing. I love it when social media does good things and meeting you is one of those good things.
Carrie Spangler: [00:03:39] Yes. So I just knew when I heard you talking on clubhouse talk nerdy to me a group, and you had so much passion for APD. And so I knew I needed to immediately reach out to you to see if you would be a guest.
And here you are. So thank you for being here all the way from Australia. Early in the morning where you are, late in the evening for me here in the United States. But I thought before we kind of take a deeper dive into APD, I would love to ask you, how did you get involved in Audiology?
Angela Alexander: [00:04:17] Oh, wow. So when I was born, my mom was a home healthcare worker. She would go, she's a nurse and she would go to different homes to make sure that the children were like developing appropriately. And she noticed that I wasn't responding to sound. So she she took me, she had an audiologist come check me out and you know, this is back in the 1980s. And they noticed that I wasn't startling and I just wasn't responding in ways that she thought were typical.
Fast forward and I had audiograms constantly done when I was a kid. There were some complaints that I wasn't paying attention or I wasn't following instructions. And so they gave me a diagnosis of ADHD. So now looking back on things, I wonder if I may have had a bit of auditory processing disorder. I had been specializing in APD for about four years before I really realized that it probably applied to me as well.
So I'm wondering if I had, yeah, some processing difficulties growing up. I've been able to achieve, you know, fairly well, but I wonder if that could have been easier sometimes.
Carrie Spangler: [00:05:40] Yeah. I'm sure. So you kind of have this personal connection to your professional drive and passion.
Angela Alexander: [00:05:46] Yeah. One of the regrets that I have is not having an APD evaluation prior to getting started with this work.
With the courses that I run online, the very first thing I do for an audiologist is I put them through the central test battery. That's Jack Katz's battery of tests for auditory processing disorder. So, I run a test over zoom, and we check what an audiologist’s processing looks like. And you'd be surprised how many audiologists actually have difficulties with auditory processing disorder.
It's amazing.
Carrie Spangler: [00:06:24] Yeah. Well, it's definitely an important topic to explore and I'm excited to explore it today with you. So before we go a little bit deeper, I just want to ask, how did you end up in Australia too?
Angela Alexander: [00:06:37] My husband and I moved New Zealand 10 years ago, and we love New Zealand. In fact, a majority of my close friends live there.
But New Zealand is colder than Australia. Like it's cold at night and you know, we love the ocean. Right now being in Australia is a really nice blend of the USA and New Zealand. You get kind of like the New Zealand culture, some cultural components of New Zealand, and then commercial aspects of the U.S. It's a really cool a place to live. We live on the sunshine coast, which is, I mean, if you look at Australia in comparison to the us, it's like, New Jersey area.
Carrie Spangler: [00:07:24] I got ya. I have a picture in my head now.
Angela Alexander: [00:07:28] Yeah.
Carrie Spangler: [00:07:30] Oh, wow. So that's exciting. Maybe someday I'll get to visit you all the way in Australia.
Angela Alexander: [00:07:36] Hey, the spare bedroom has the bed made and ready to go.
Carrie Spangler: [00:07:43] How did you really, I know you kind of touched on it, but what kind of drove you into really diving into APD?
Angela Alexander: [00:07:51] Oh, so it was 2004, April of 2004. And I was in my last semester of undergrad, and I had bowling class. Right after bowling class was my speech perception class with Dr. Sarah Ferguson.
And I wanted to bowl one more game that day. And so I was really late to my speech perception class. When I got in there, I looked up and there was a man teaching and I thought, oh no, I didn't realize we had a guest lecture. There was only one seat left and it was front and center of the room. So I went and sat down and I tried to figure out what this guy was talking about.
And he was talking about auditory processing disorder, and it blew my mind like. I, my eyes must have been huge, because it felt like I was learning about something I had always known. And I didn't, like I said at the time, I didn't realize the relevance to my own life, but I just couldn't believe it.
And at the end of the lecture, I went up to him and I said, I have got to see how you test for this, how you treat it, because I cannot imagine it. And he said, come to my clinic any time. I work in Kansas City, and I said, sweet, okay, let me email you. And he was like, okay, it's my [email protected]. And I said, what's your name?
And he said, my name is Jack Katz. And here I'm like holding his book and I'm like this guy. Right. But if anyone knows Jack Katz, you know, he's humble, he's kind, he's hardworking. I mean, he just turned 87 last month, and he's still working clinically. All right. So I think a lot of people don't realize the level of ingenuity he has built into his evaluation and treatment methods.
Like you see a client you're able to categorize the difficulties. They're having you do a test, and then you can categorize the problems on the test. And then you treat based on those different categories. It's like, I cannot believe what an ingenious set up he's made. And he just, I think that, I think that the profession of audiology is about to realize that we have to be so much more than dispensers.
And one way to do that is to look at the specific difficulties a person is having and have us treat it. Why not?
Carrie Spangler: [00:10:35] Right. Essentially you had this amazing teacher, Dr. Katz. Can you just give us like a 360 degree definition of APD, but people that might not have all of the knowledge that you have.
Angela Alexander: [00:10:51] Absolutely. So, first of all, I like to put it on the same continuum as hearing loss, because I think when we do that, it helps people who work with dispensing feel a little bit more comfortable with this. So the way I like to put it on the same continuum, is looking at Erber’s model of auditory skill development.
So think about it as a staircase with four steps on it. The very first step is awareness. If a person isn't aware of sound, they may have hearing loss or auditory neuropathy or hidden hearing loss. We deal with issues of awareness with amplification, with devices. With cochlear implants, things like that.
So what we want to do with awareness is we want to boost that signal. The second level, after we get past awareness is called discrimination. Can you hear the difference between two sounds? Can you hear the difference between mm/ng. And now you've gone through the cochlear implant process, and you know that you had to learn how to do that.
You had to teach yourself how to hear the difference between these two things. Once you get past discrimination, which is step two, you have to get to identification, which is step three. Not only do you know the difference that there's two sounds that are different. Do you know that that is M and that is N you need all three steps to get to comprehension, to understand what is said.
And I think a lot of audiologists think we can go from awareness and jump to comprehension and. We miss out the important part, which is the brain. And so I think a lot of us as audiologists and dispensing have had a client come in and based on their kids' case history, we're like, wow, this person has like a moderate hearing loss.
They've never had hearing aids. I'm going to change their lives. That's right. We do. We put them in the booth and, and behold, their audio gram is within normal limits. Then it's confusing. Wait, it looked like this person had a problem with awareness, but it was actually potentially with discrimination.
It's because it's at such a low level that it looks to us. Like it's actually hearing loss. We've also had clients who come in who have hearing loss. We put hearing aids on them and they still don't go from awareness to comprehension. So I'm going to say something really crazy. It is possible to struggle with auditory processing.
Even if you have a hearing loss. In fact, it's amazing that more people with hearing losses don't have auditory processing problems. So auditory processing is what the brain does with what your ears hear. People will say, does my child have auditory processing? And I hope they do because auditory processing is the function.
Auditory processing disorder is the dysfunction. So, so if to me, and this is a different definition than most people would use to me, auditory processing is where auditory skills effect Well-being. all right. Is your ability to understand what understand and remember what you're hearing, affecting your ability to have a great life.
Carrie Spangler: [00:14:41] I like that, but it puts everything into real life perspective, right? It's about the whole person. And if something, if you're not processing information and you know, As human being that's communication is key. So if we can't communicate with others, then your wellbeing is going to be impacted.
Angela Alexander: [00:15:00] Absolutely. And so for me, like, I like to use the HHIA, which is the hearing handicap inventory for adults in particular. I don't like to use that second age cause it's just lame. So I like to call it the hearing inventory for adults, but just in case anyone's looking that up, it's a free tool and it's 25 questions and you answer yes sometimes or no, and at the end of it, you get a score. And so if you see a person who has a normal audiogram, but their HHIA score is really high.
This is a red flag that there's something else going on. Or if you have a client with a hearing loss and their AHI score is really high and you put hearing aids on them and the score stays high yet again, another red flag.
Carrie Spangler: [00:15:54] Yes, that hearing aids and cochlear implants, aren't just going to fix it. There's gotta be some steps in between, right?
Angela Alexander: [00:16:00] Absolutely. And we need to partner with those clients to help make that a faster, more efficient process. Yes,
Carrie Spangler: [00:16:10] I like that. So I'm going to like put a little twist in the conversation just to hear what you have to say. So I work in the schools and, and then talking to other people too.
But I think within my profession at some different universities and even a lot of outside of our profession, there is belief that maybe APD does not exist. So can you, what is your take on that? If someone says, you know, that doesn't, that's not a
Angela Alexander: [00:16:43] real thing as healthcare professionals. We need to do no harm.
And you know what, I'm going to honestly say anyone who pushes the idea that auditory processing disorder, isn't a legitimate issue is doing harm. So just because it's funny, I, I actually had a professor once who said auditory processing doesn't exist. Cause that stuff happens to me all the time. So it it's it's comments like that, where you see a lack of empathy in a profession that's supposed to be the one who advocates for people with hearing disorders.
I don't understand where we fell off the bus with this one, but I think that there is we actually have C ABR complex ABR that can pick up difficulties with auditory processing with, with this equipment. And that is going to change the conversation from, is this a thing too? Oh my God, this is a thing we need to treat it.
I can't tell you how upset. The clients that I work with feel after they've been to hearing test after hearing test and have been told that there is no problem when these people have an HHIA score, 88 out of a hundred and a hundred is the worst you can be. And they're at 88 with a normal audiogram and people have told them.
There is no problem. And my, my university was very skeptical about auditory processing disorder. And I'm going to actually say something here that I have not said publicly. But my. I applied to get my master's in speech, language pathology from a really highly
Angela Alexander: [00:18:36] respected university after my AUD to become dually certified.
And I was rejected because of my interest in APD.
Carrie Spangler: [00:18:45] Wow. Yeah, that's it that's alarming. But I think your point of patients coming in and saying, I have difficulty. Processing with auditory information and you give them a questionnaire and they have a normal audiogram. We, we can't just ethically and morally be like, see ya, because there's obviously something that they are experiencing.
Angela Alexander: [00:19:13] Exactly exactly. It breaks my heart. It's so funny because you know, if we look at hearing loss, we say, Oh, the client has so much denial, you know? And so we have to prove to the client, they have a problem. A lot of these people who have an auditory processing disorder come in and they have no denial.
They're like, I am really struggling. And for some reason, the clinician has more denial. But then if we look at other things like with tinnitus, the clinician has no denial. The clinician agrees and believes that the client has a problem with Misophonia. The clinician understands and believes that the client has a problem.
But with auditory processing disorder, a majority of clinicians do not believe that there is a problem.
Carrie Spangler: [00:20:04] Yeah. That's so hard. So what do you think audiologists can do to help people who come into the clinic or into the school? Start and say, they're struggling with auditory processing. What could they do and what would you do as an
Angela Alexander: [00:20:20] audiologist?
There are two things that you should do depending on the population. If you're working with adults, bring that HHIA form into your clinic. And I start utilizing it immediately. If I don't have it, I feel like I'm flying blind, honestly. So you need to see what that score looks like. And if it's below. 14, maybe things are about within normal limits, but if it's higher than that, that person may need an extra referral.
The second thing that I was going to mention is knowing who in your area does this work? So if you don't, so if you don't know who's doing this work, you can go to an online searchable map that I've created, where you can put in your address and find out the closest specialist in APD. And if you can't find one become that specialist, we've just added the very first APD clinician in Las Vegas and Nebraska in the last three months.
Wow. Unbelievable. Yeah.
Carrie Spangler: [00:21:29] And is that because of your course and everything, or they found another
Angela Alexander: [00:21:34] way? So, so when I, when I started this map in 2008, I added everybody who said they were specializing in it. And there were 250 people on the map. You know, if 5% of the population have APD, that's 300 million people worldwide who speak English and 250 of us doing the testing, then I.
I didn't update in 2018, still 250 people. That's all that we're doing. The testing or treatment. I did another update. I'm trying to do two different things to increase the number of professionals I'm running those online courses. And then I'm trying to search out people who are doing the work, who aren't on the map yet.
So our current numbers are 376. So we've gone from 250 to 376 feeling really good about that. But I've got my eyes on 500.
Carrie Spangler: [00:22:30] Well, that seems like you've had a good jump so far. So that's a good, positive thing too. We're trying to think some of it has to do with the undergraduate graduate AUD programs as well, where, you know, people aren't either they're not learning enough about it or they don’t spark nterest.
Angela Alexander: [00:22:53] 40% of graduate programs do not have a course in auditory processing disorder. And if we think about the fact that out of a thousand children, right, we may have one to five with permanent hearing loss, whereas. Out of a thousand children, we have 50 to a hundred children who may have auditory processing disorder.
So it is much more prevalent even in the, you know, early childhood education then than hearing loss. Yet we have very few clinicians doing it. The latest ASHA Survey said that 1.4% of audiologists routinely test auditory processing disorder. That is just insane. And I mean, there's a lot of, there's a lot of things that we have to undo from our profession.
Like there was this old school belief we couldn't test before seven years of age. Because the system wasn’t fully mature, what system do we wait until it's fully mature to help it develop. That is just crazy. Early intervention is the wave of the future. How is that different with auditory skills?
Carrie Spangler: [00:24:13] So what kind of testing with screenings do you do with some of the below seven kids?
Angela Alexander: [00:24:21] That's a really good question. Okay. So for screening, like you want to have a really good conversation with the parents because it is fairly obvious when it's child should have a referral for an auditory processing test because these parents come in, they, they say, Oh, I really feel like my child has a hearing loss.
You do a hearing test. And it's like, okay, actually that doesn't seem to match up with what the parent was saying. That should be an immediate referral. Also you can use acoustic pioneer, feather squadron. So Matt Barker created this wonderful software and it's an app that helps to assess some auditory processing abilities.
You know I would say that I really liked the app. It doesn't necessarily always catch all of the children who are having processing difficulties. And I've talked to him because. I think his idea was let's, let's kind of take the speech language portion out of it, but the speech language portion is the most important reason why we should do an auditory processing evaluation.
Matt and I are really good friends. I have no conflict of interest saying that I absolutely use his products constantly for me. It's great because I can do an evaluation with his testing. And then in addition to my battery, and then I can do post-testing using that iPad as well. And I can get an unbiased behavioral data from that as well, some pre and post testing.
So it's brilliant for me, as far as screening is concerned. One of my main concerns that I've got with almost all of the screenings Software and. Materials that we've got, is that not all of them are very sensitive. They're more specific. And I think with auditory processing, we need to go more sensitive because we need to make sure that we are absolutely not rejecting someone for a further evaluation, if they need our help.
Did that answer your no, it does.
Carrie Spangler: [00:26:28] Yeah.
Angela Alexander: [00:26:30] Yeah, we're also trying to create this HHIC like so that the parent can answer these questions, but it's just being created, but I can share that for me.
Carrie Spangler: [00:26:39] No. So that would be like the children version that the HHIA then, so yeah, I was going to ask you if there was some kind of a checklist or, you know, screening instrument that you could.
Have parents fill out that would give indicators, like you said, that, you know, above 14 or 20 and this form, then this is a red flag to say, Hey, we need to look a little further into it.
Angela Alexander: [00:27:06] Yeah. And, and like this, there are a lot of different APD screening forms. I want people to have access to something that's free.
Okay. All right. That will help identify things. And what I think the HHIA does really well in adults is it picks up on psychosocial issues. It picks up on issues of wellbeing due to hearing problems. Now. One thing that I should say is that there's also the Buffalo model questionnaire. Jack Katz created that Buffalo model questionnaire.
And that is a really good functional questionnaire to get an idea of, okay. Are there potential red flags here that for auditory processing as well, but just looking at it. What can a majority of clinicians do something like the HHIA, maybe the HHIC, the problem with the AJC that I've got so far as parents are sometimes, sometimes have a hard time understanding how much difficulty their children are having.
Yeah,
Carrie Spangler: [00:28:08] especially the younger ones. When they get a little bit older, they can, you know, to the questions and they can,
Angela Alexander: [00:28:15] but then, then when let's say the child is a teenager, it's really easy for parents to be like, Oh yeah, my kid doesn't care about anything. Oh my kid's not as intelligent. You know, like they can apply different labels to what they're seeing.
They may think it's a behavior issue or an intelligence issue or something like that, which is really sad.
Carrie Spangler: [00:28:36] Yeah, which kind of actually brings me to another question. So. Do you see APD coexisting with other conditions a lot. And what, what do you see it mostly co-existing with
Angela Alexander: [00:28:52] any kind of neurodivergence can have a higher potential for auditory processing difficulties.
So ADHD, autism dyslexia. I mean, I think. Jack Katz said that if you look in any specific population, you're going to see a high incidence. He said, for example, people with large noses have a high percnetage, people, auditory processing disorder. So basically what we're saying is it is highly prevalent, prevalent.
If you've got any kind of neurodiversity going on, there is the potential that a, person's going to have a hard time understanding what they hear, but in a lot of these cases, Where a person is multi-factorial and has a lot of different issues. We can work with auditory processing and make that better, and we can see improvements in other areas.
So for example, I've had a couple of clients recently that I've been working with who have. Anatomical anomalies in the brain. One has no Corpus callosum. And we're like halfway through her therapy her round of therapy. There's also a child that I'm working with whose mum could not get testing done for auditory processing.
Cause she had low IQ. Why shouldn't we be helping that? Like, would we, would we say we wouldn't do a hearing test or put hearing aids on a person with low IQ? That's absolutely ridiculous. Becoming a parent has made me realize that here's this child. We want them to have the best chance in life to be the best person that they can be.
What can we do to help that child get there?
Carrie Spangler: [00:30:37] So, Kind of playing a devil's advocate for that part of it. If you have a student who may not be able to participate fully in the testing, how do you do that? Do kind of quantify that a little differently or do you kind of have a, I don't want to say a disclaimer, but just kind of some wording that says, you know, that they weren't able to fully participate.
Angela Alexander: [00:31:04] Yeah, we get as much baseline as humanly possible. All right. So we go in there, we gather as much data. We see what that data is telling us, and then we do therapy and then we do a retest. So for example w there was a child that was only able to do there's 40 items, 40 items on the SSW test. I was only able to do 10 on them.
Last October. And, and now we're just at the retest. We're about to retest him. And and I actually expect that we'll be able to do the full test. Now, Jack Katz likes to use this wording. He'll say we're going to use auditory processing disorder as a working hypothesis. You know, ASHA and AAA had these position statements that came out that said a person had to fail two tests by two standard deviations or a single test by three standard deviations and even national acoustic lab national acoustics laboratory came out and said, those numbers are arbitrary.
We cannot say that a person does not have an effect on their lives based on these arbitrary numbers. Because if a person fails a test by one standard deviation, it means that 85% of the population, it could mean that up to 85% of the population, their same age does better than they do. On a particular task.
If 85% of the population is doing better than me at something, I'm probably going to feel like this is affecting my day-to-day life. So watch this space because it's a, it's an argument that's just kind of slowly started and now it's working itself into a fever
Carrie Spangler: [00:32:53] and I you're a part of that fever.
Angela Alexander: [00:32:56] You better believe it.
See, I don't, I, you know, I don't actually care about. Auditory for, I don't think auditory processing disorders, one thing. And I don't think that people need to like lock onto that disorder. Parents need that name to know what to call it, but it's more important to find out is this person a good candidate for therapy?
Can we treat this? Yeah.
Carrie Spangler: [00:33:19] And I think in the schools, I love. That we can work with the school psychologist and work with the speech language pathologist and kind of see what testing have, you know, have and, and see. And when you do your testing and you're able to put some of these pieces together, it makes so much sense of like, what are the, what the next step needs to be and what accommodations need to be put in place as
Angela Alexander: [00:33:45] well.
Yeah, absolutely. Completely agree. I completely agree.
Carrie Spangler: [00:33:51] So what do you wish more audiologists would realize then? You kind of said it, but I just want you to highlight it again.
Angela Alexander: [00:34:01] Yeah. Yeah. Oh my God. So many things. All right. I'm going to pick five things.
I
Carrie Spangler: [00:34:09] love it.
Angela Alexander: [00:34:11] Five things. Number one, we can test for auditory processing down to three and a half years of age.
There's also neurological testing that can identify children at birth. Number two. Middle ear disorders potentially have greater impacts on life than what we had anticipated. So take those abnormal tympanograms seriously. Number three, we can test for auditory processing when there are other things going on in a person.
Sure. They can have auditory processing secondary to Other things that they have problems with, but if we can treat this and make their lives better, let's do it. Number four. We need to make sure that we are actually listening to what our clients are saying. If they say that we have, they have a problem, we need to believe them in the famous words of Gail Whitelaw Audiograms don't talk patients do.
And number five, auditory processing disorder is treatable. We can do auditory training and we can make this better hearing AIDS are not the only solution to every problem. And the moment that audiologists can realize this, we will have better job satisfaction, lower cost of goods, and we are going to change a lot more lives.
Carrie Spangler: [00:35:37] That's a good
Angela Alexander: [00:35:37] top five. I just made those up. I believe them.
Carrie Spangler: [00:35:43] Yes. And that's important. I can tell. So why not the question about like what you said, you know, that we can definitely improve out auditory processing. So can you share just a little bit more about what your training looks like and also maybe more the accommodation piece of how you can help someone in their day-to-day
Angela Alexander: [00:36:05] lives.
Oh, where to start. Okay. So, so first of all, with Jack Katz's Buffalo model, we do therapy. We do rounds of therapy, the very first round of therapy, which is about 12 to 14 weeks. We do. Four different exercises in each therapy session. The very first part is something called phonemic training and it's actually training people to quickly and accurately like recognized.
Speech sounds. So, for example, I might hold up a hoop visual filter without being an auditory filter. And I would say a sound like D D D and every time a person hears that sound. They have to tap a card on my table. Okay, then I bring in another sound in that same session, like the eh. Now you can hear that there's a big difference between D and F right?
So then we have the D and the air next to each other on a table, the short E and the D. And I have them distinguish between discriminate between the two. Then we bring in a third sound like that. We put that one in and they discriminate between those three. The next week we have them come back in. We refresh them on the D the short E the M.
And then we bring in another three sounds. Let's say B, ah M. We don't ha we don't mix those with the D the short ENM, because there are some sounds in there that could fight with each other. We don't want that. So we, what we do is we slowly try to layer a person's understanding of these individual speech sounds.
And while it seems like it is not rocket surgery, it is absolutely necessary to start at this very basic level. I even do this work with adults and adults with cochlear implants. To help them go from discrimination to identification. So that's that goal. We want to pull them up. Erbers model of auditory skill development.
The next thing we do is something called words in noise training. They listen to words. Noise starts with no noise and slowly increases until the noise is even with the words and it's multi talker, babble noise. So it does have a bit of relevance there. The third thing we do is short-term auditory memory work.
Just rote memory work. We want to increase a person's digit span by one. And then the last thing we do is a speech sound blending game. So if I said Sh E you would put them together and say, she, right? Yeah. So that's, that's what one of therapy looks like, and it starts off really basic and it gets more complicated.
But the fundamental changes that I see in a person's auditory skill abilities after it is. Incredible.
Carrie Spangler: [00:39:18] And eventually with some of your patients, if they go through a therapy and they have different supports, do you find them when you retest that they, I was scoring within normal and then that their inventory improved.
Angela Alexander: [00:39:34] Oh my God. Yes, you, you get it. You get it. So. So, yeah, quite it's quite common to watch a person go from having some severe, having severe scores to scores that are within normal limits. But remember what I said earlier, normal limits could still mean that 85% of the population are doing better on a task than you are.
So, so that is something to keep in mind. Isn't it. But. But what we do see is that AAHI , I want to see how low that score can go. And there's one client. Jackie who's offered to be a case study for me. And she started off with a normal audiogram and a score of 88. After one round of therapy, her score was 30. Hmm at retest a couple months later, she was at 24 and I called her as a six-month followup and her scores at 14.
So we can see someone go from feeling quite depressed about their hearing abilities to having hearing wellbeing that's within normal limits. And that's just from auditory training. That's no devices whatsoever.
Carrie Spangler: [00:40:43] Wow. And do you find like, Maybe two years down the line that they still feel that they're at that 14 level or the,
Angela Alexander: [00:40:54] yeah.
Good question. So I've just been using, I've just recently started using that HHIA to help guide what we should do for intervention. And now my thought is. Oh, wouldn't it be cool for, I, for me to have an automated email process that would automatically send them that survey to have them fill those in, you know, quite regularly
And really to get some more long-term data. Yeah, I would anticipate because I think some research has shown that there can be further improvements in auditory skill abilities, up to six months, post therapy. Jack Katz has a belief that if we're working with short-term auditory memory at the same time, as we're doing this other auditory training, it's going to stick for longer.
But it's a little bit like working out. Like I play roller Derby and, and I roller skate a lot right now. I've done a lot of that work. And so I'll never go back to how I was pre roller Derby. You know, like if I put skates on, even if it's been six months, I still have abilities that are higher than the average person.
And I can also fall down more often, like I did last night, but that's fine. So, so, you know, my baseline has changed quite considerably and it's the same thing. Like you can work out by listening to audio books and things like that. Audio books. Are a great way to maintain things, but it's not necessarily the best place to start off.
As therapy
Carrie Spangler: [00:42:30] does that makes sense? Oh, it does a hundred percent. Like I agree with you from a more the cochlear implant journey perspective where I'm kind of in the maintenance phase, but I needed to start what you said with the more fine tuning discrimination and just telling the difference between.
The ling sound and things like that. And then doting up to more minimal pairs and then listening and noise and that kind of thing, but it didn't happen overnight. And it definitely took a lot of coaching and determination to get to that point. But I agree with you, like there's times where I'm like, okay, I just need to sit down and refresh my brain with.
I'm listening because you get lazy, like you said, it's like wiping out. Like you, you know, you're not going to go run a marathon when you haven't done any training previous, so it just doesn't work. So Before we wrap up. Is there anything that you would like to share that I didn't
Angela Alexander: [00:43:38] ask you? No, I don't think so.
I think, I mean, just to kind of talk about the cochlear implant stuff for just a moment, you know, I, I just recently started doing some auditory training with adults who have cochlear implants. And one woman said to me, she goes, I don't feel like I'm really struggling. Her HHIA score is really low. It's like.
So it's really low. She has bilateral cochlear implants, but she said her first implant took her over a year to learn how to process with it. And she said, you know, it was really interesting. It was interesting for me. To talk with her because when I talk with an auditory process, a client with auditory processing disorder, who is an adult, they may have a hard time believing that it can, that auditory processing can change.
But if I talk to a person who has had a cochlear implant and who has successfully trained themselves, how to process. Over a long period of time. They know that auditory processing can change and they're interested in finding out how we can make that happen in a more efficient way so that their life doesn't have to be impacted so much.
So it's really interesting to talk to a person with a cochlear implant. I had one. One man that I talked to and he said, wait, I can actually hear everything now are you're saying I have an auditory processing disorder. Now we don't actually have to give a person a diagnosis of an auditory processing disorder.
Hearing loss is enough of a diagnosis. Let's just see if we can treat things and make it easier. So, yeah. I've yeah, it's, it's I'm, I'm currently wanting to expand how we see auditory processing. And I hope that others come along for the ride.
Carrie Spangler: [00:45:24] Yeah. Well, I just want to say thank you for being here today, Angela, because this is such a engaging conversation conversation, and I'm so glad that we were able to have it today.
And then for our listeners, I will make sure that in the show notes out, put a link to your website. I'm sure you have one and you can share that with me and any other resources that you want to share with anyone too. But again, I just want to thank you for taking your time and being a part of the empowerEAR Audiology Podcast.
Angela Alexander: [00:45:58] It is my pleasure. You asked amazing questions and I enjoyed the conversation too. I thank you. You're welcome.
This has been a production of the 3C Digital Media Network.

Episode 18: empowEAR Audiology - Dr. Marc Brennan

[00:00:00] Welcome to episode 18 of the empowEAR Audiology Podcast with Dr. Carrie Spangler.
[00:00:17] Carrie Spangler: Welcome to the empowEAR Audiology Podcast, which is part of the three C digital media network. My name is Dr. Carrie Spangler, and I am your host. I am a passionate audiologist with a lifelong journey of living with hearing challenges in this vibrant hearing world. This podcast is for professionals, parents, individuals, with your own challenges and those who want to be inspired.
[00:00:46] Thank you for listening, and I hope you will subscribe and invite others to listen and leave me a positive review. I also wanted to invite all of you to visit and engage in the conversation on the empowerEAR audiology Facebook group transcripts for each episode can be found at. www.3Cdigitalmedianetwork.com under the empowerEAR Audiology podcast tab.
[00:01:19] Now let's get started with today's episode. All right. Let's get started with today's episode of empowerEAR Audiology. I'm really looking forward to interviewing a guest that was actually recommended by a mutual friend, Dr. Ryan McCreary. And I'm going to tell you a little bit about my guest today.
[00:01:41] Dr. Marc Brennan, Dr. Brennan graduated from the university of Wisconsin, Madison with his bachelor's and master's in communication disorders. Followed by his PhD at the University of Washington, he completed both his clinical fellow and post-doctoral fellowships at Boys town. National research hospital research interest involve examining the relationship between high-frequency amplification and the perception of speech and between compression amplification and the perception of temporal and spectral cues.
[00:02:17] Today, I'm not only excited to learn more about his areas of research and study, but I'm also looking forward to Dr. Brennan's journey, living with hearing loss. So by storytelling and sharing hearing journeys, I hope we can empower all of our listeners who may also be on this hearing journey. So Marc, welcome to the podcast.
[00:02:39] Marc Brennan: Well, thank you. I'm excited to be on here.
[00:02:43] Carrie Spangler: Well, thanks for joining. And I want to just thank Ryan, but how can I stop saying you guys need to meet? So it's always fun to have just kind of a first meeting on a podcast and just kind of learn more about each other. But Ryan had shared that a little bit, that you actually have a hearing journey growing up.
[00:03:08] Do you want to share a little bit about that?
[00:03:10] Marc Brennan: Yeah, I'd love to. So I was diagnosed with a hearing loss about the time that I was four. This was, you know, before we had national hearing screenings. And so they didn't find that out till I was about four. It's kind of an interesting story because I.
[00:03:29] Once in producing as much speech, you know, as, as they expected me to. And I was actually in like, Oh, like a preschool for kids with children with disabilities. My mom really thought that I had a hearing loss and you know, you hear those kinds of stories where parents attach to that hearing loss idea when their kid doesn't really have that.
[00:03:52] But in this case, she was right. And the nurse actually said you know, He didn't respond to all the beeps, but he's just been really difficult. And I can be difficult, but you know, in this case, I, I really did have a hearing loss and luckily she took me to an audiologist and I got diagnosed and then fit with hearing aids shortly after that.
[00:04:20] And I don't really remember any of this. It's all, you know, stories. Told to me, but I guess like, My mom said when I first got them, I just kept talking about all this stuff. I could hear, like, you know, the car. And so for me, it's, I've always loved being able to hear. And I I cannot stand to go without, you know, having my hearing aids except at night, you know, but yeah, I, I, I just really liked them.
[00:04:52] Yeah. The other thing I'll add is my. Younger brother. He has the exact same hearing loss. It's we probably, I think it's, we've never been tested, you know, like genetically or anything, but I would guess that it's a recessive gene just because of sort of the lack of a family history there, and none of my kids have it.
[00:05:13]But he has Asperger's and he has. the exact opposite reaction. Like he does not like to wear them. He takes them out all the time he fiddles with and I am not his audiologist He is a non-family member.
[00:05:36] Carrie Spangler: Yeah. You are just his big brother that yells at him Right.
[00:05:40] Marc Brennan: Well, yeah, I mean, I've tried everything I've tried at all. I've tried to be nice. I've tried, I mean, not really yelling at them, but being from it's adjusted the gain, you know, everything a lot of it's. Actually I think just a physical, like it just doesn't physically want it there.
[00:06:06] Carrie Spangler: You said you were diagnosed at four. And actually that was when I was diagnosed too, with my hearing loss and similar kind of thing. My mom kept asking doctors, like, I think there's something wrong with her hearing and they would clap their hands or do something. And I turned and they would say, she's fine.
[00:06:27] So, and again, before newborn hearing screening, so we didn't have all those safety nets in place. Right. You mentioned that you were in like a preschool program for children with different challenges. So what was your elementary school? Like?
[00:06:48] Marc Brennan: I was mainstreamed. I grew up Manassah Wisconsin, and then Neenah, Wisconsin, and not to smaller towns, but they're smaller towns and I, I didn't know anyone else.
[00:07:02] You know, with the hearing loss. And yeah, I was in regular classrooms. I did well I could hear, okay. I always sat at the front of the classroom up until like high school, you know, maybe junior high, and then you want to be cool and, you know, sit in the back. I can remember my audiologists every time I go in, he'd talk to me about, you know, using an FM system and I never wanted it a which I know is not ideal at all and not what I recommend, but but but at the same time, I mean, I think I've turned out okay.
[00:07:46] Carrie Spangler: Well, you got your PhD, so you must've been educated somewhere along the line. So you said that you don't recommend that now not using an FM or DM or whatever you want to call it. What do you utilize any assistive technology system
[00:08:04] Marc Brennan: Now?
[00:08:05] I really don't. I mean, there was interesting to listen to some of your podcasts and I want to be really clear, like my experience doesn't, you know, translate into everyone else's experience. Although I do think. For a lot of adults with hearing loss, they really don't. They don't want to deal with these assistive devices.
[00:08:27] And I kind of fall into that same camp, like I've tried them. I wear Oticon hearing aids right now. I've tried other ones, but For me, it was just the, like, for example, these ones I can, you know, set them with the telephone. They're not Bluetooth. So I, you know, I have to wear that connect device and.
[00:08:51]I'm just not gonna wear that all day. Like for the few times that I talk on the phone, you know, and nowadays it's like, never because everyone just, you know, text. I've, I've tried out hearing aids you know, with Bluetooth and it's nice. Like to connect the phone, although sometimes that's annoying.
[00:09:12] Cause like you get, you know, the text messages come through, like you're talking to someone and all of the sudden it, you can't hear, you know, so I don't, I don't know if I owned a pair how much I would use the Bluetooth. I mean, I think I would use it. I just I don't. No for sure how much I would
[00:09:32] Carrie Spangler: [00:09:32] stream my podcast if he had
[00:09:35] Marc Brennan: [00:09:35] Bluetooth. I was, yes, I absolutely was.
[00:09:42] Carrie Spangler: [00:09:42] So growing up or even now with living with hearing loss or hearing challenges, do you feel like you have a challenge? Like what would be your greatest challenge?
[00:09:55]Marc Brennan: [00:09:55] Socially distance. Although we tended the, you know, people always like to sit in the back of the classroom and audiologist, audiology students are no different.
[00:10:06]You know, so I find myself constantly, I feel like frequently asking them to, you know, speak louder and stuff and which I hope. Maybe that's a good experience for them cause right. If someone has a hearing loss. I've got to learn to speak up. So that, that's actually one of my bigger bigger challenges that I haven't quite, I usually turn up the volume on my hearing is when I teach and that helps I don't know, maybe I need to do a little more.
[00:10:37] Letting them know, ahead like I had a time and stuff, but they need to do
[00:10:42] Carrie Spangler: [00:10:42] right. Be an advocate for
[00:10:45] Marc Brennan: [00:10:45] audiology students.
[00:10:49] Carrie Spangler: [00:10:49] They can better serve their patients
[00:10:51] later
[00:10:51] Marc Brennan: [00:10:51] on. Right. I know I'm just, I'm on.
[00:11:00] Carrie Spangler: [00:11:00] So I, it sounds like you got through school pretty well and, you know, kind of overcame a lot of those different communication challenges, but do you feel like your hearing loss gave you any additional strengths?
[00:11:18]Marc Brennan: [00:11:18] I don't know. Yeah. I think, I mean, you, you deal with these challenges. Right. And some of the strengths that it's given me is I think.
[00:11:28] I've tended to rely a bit more on myself than like the teacher. I think, I think sometimes even though I think I'm hearing, okay. I think I, I probably tend to zone out and stuff because maybe I'm not hearing as well as I think I am. And so I've always relied more on like the book material and stuff like that.
[00:11:51] And that might just be. You know, it's hard to know, right? Like if I didn't have a hearing loss, would I have done that anyway? Or, you know, is it because of the hearing loss, but I think that's helped me because I think self-learning is, you know, it's a good thing. So in that sense, Relating to patients, I'm sure you've experienced this cause you can.
[00:12:15] So to give your own stories, I think it lets you be empathetic to some of the challenges, you know, that, that your patients are facing. Obviously I got into this field and part. You know, because of my next
[00:12:30] Carrie Spangler: [00:12:30] question, actually, did this have anything to do with your chosen field?
[00:12:38] Marc Brennan: [00:12:38] What's interesting though, is actually, I started in engineering and I hated calculus.
[00:12:44] I love math. And then I took calculus and I was just like, Oh, I hate this, which. It doesn't mean that I would have hated engineering, but nonetheless, then I went into business school and I was like, I don't want to sit in front of a computer all day. So, so then I, I mean, I honestly, I didn't really think of that.
[00:13:05]Until then, and then I ran with it. I, you know, I started taking the classes and I loved it when, as far as to get my PH D with it know but yeah, I, you know, I actually went through a similar journey that a lot of students who. Don't have any experience with the field go through sort of, you know, stumble upon it, I guess.
[00:13:28] Carrie Spangler: [00:13:28] Did you have anybody like an audiogist growing up or that kind of planted a seed for you?
[00:13:36]Marc Brennan: [00:13:36] I can't, I don't know that they ever talked to me. I don't recall that. I mean, I loved. You know, I went, I saw like Jack Kyle at the University of Wisconsin Oshkosh. Yeah, I can't, I can't recall them doing that well,
[00:13:55] Carrie Spangler: [00:13:55] that's good.
[00:13:58] I mean, yeah, that, [00:14:00] I, I guess I might, in my experience, I honestly didn't. Initially, I kinda thought could a person with hearing loss go into audiology. And then thankfully I had some wonderful mentors along the way that encouraged me to keep it going in that, that, way,
[00:14:20] Marc Brennan: [00:14:20] I mean, I did talk to the audiologists that I had worked with growing up.
[00:14:26] Before going into the field. And then and then while I was in it a and they definitely, you know, encouraged me and they didn't think I wouldn't be able to do it or anything like that. But I don't think the idea came from them, which, which is probably normal. Right? Like you don't. Talk to every one of your patients that has a hearing loss and be like, you should go on audiology.
[00:14:52] Carrie Spangler: [00:14:52] No, there's a couple of them that I would be like you wouldn't make a really good audiologist, but not every single one. And some of them are like, there's no way I want to do that. I think that's something to think about to you. But kind of going into audiology and getting your PhD. Did you ever have any roadblocks along the way, as far as hearing or classes or anything like that?
[00:15:24] Marc Brennan: [00:15:24] I mean, I've definitely, you know, had roadblocks, but I don't think they were like hearing related. I mean, I think writing's hard doing research as hard, you know, those kinds of roadblocks like that come with the field. But I, I wouldn't Personally, I don't think the hearing loss was, I don't want to say that it wasn’t a factor.
[00:15:48]Like sometimes I wonder, well, would I be a better writer if I, you know, didn't have the hearing loss? I I don't always know when to use like the plural, like the “s:. I honestly, I think I kind of grew up, you know, Thinking it was sort of optional or something. And I've become more aware of that as I've got, like, even though I know what the rule is that I, it doesn't, I still add “s” where I'm not supposed to.
[00:16:20] And I think I do the same thing in speech. You know, like have you run into that? I mean, I, well, I
[00:16:28] Carrie Spangler: [00:16:28] know that. Growing up and with my hearing aids, I never heard the “s”. So the “sh” was kind of there sometimes depending on the environment. So yes, I would say the same thing. I think I learned it more, what you just said about reading and I was an avid reader growing up and I think that helped a lot of.
[00:16:55] When I did hear, I was like, I could fill in the gaps that way. So that was helpful for me. But then the other problem I had was how things are spelled in English. Aren't always the way they're said. So then I'm saying things the wrong way, because I didn't hear them, but I read them.
[00:17:19] Marc Brennan: [00:17:19] Yeah. It's interesting.
[00:17:20]My spelling is atrocious like it is. And then with now that everything's spelled checked, so I've started turning spellcheck off to force myself to like spell words correctly because. My spelling was not good to begin with. And then when you don't have to spell, you know, like I, I think my skill has gotten even worse.
[00:17:47]Yeah, so I I've turned it off, which. Which means that I have to be really careful on make sure that I run the
[00:17:55] Carrie Spangler: [00:17:55] spellcheck, edit multiple reads through your papers. Well,
[00:18:00] [00:17:59] Marc Brennan: [00:17:59] I still run the spell check. I just, I don't like have it automatically changes the words and stuff like that.
[00:18:07] Carrie Spangler: [00:18:07] So on your final draft, you're going to run the spellcheck and all that good stuff.
[00:18:13] Yeah. So something else that you mentioned in your bio was that you've served on several different boards. Can you talk a little bit about the boards that you served on and how you think your personal experience contributed to being on those Boards?
[00:18:30] Marc Brennan: [00:18:30] Yeah, so I I've served on a couple of boards, two that come to me.
[00:18:36] Well, Hands and Voices. is one of them. And then I was on the Nebraska commission for the deaf and hard of hearing. There's a couple of things. I mean, obviously having a hearing loss and then having grown up with one helped and contributed to those experiences, one of the things. You, I became more connected, I guess, with individuals of the deaf and hard of hearing community.
[00:19:03] And especially those that had like a different experience than me. Especially individuals that were a part of life, the Deaf community. And so I started to hear more stories about some of the challenges that they had faced, especially when like hearing aids didn't work for them. You know, difficulty finding jobs stuff like that.
[00:19:27] So I think it was, I mean, obviously you learn about these things, but through some of this experience, I had more, you know, personal connections with that. And, and I also came like, I don't sign at all. I know very few signs. My wife signs way better than I do. And I don't think, you know, sometimes I wonder if the hearing loss has hindered my ability to learn languages.
[00:19:55] I don't know, but like it's not like sign language is any more natural for me than learning Spanish, for example. But anyway, you know, so there were those communication barriers because. You had, you had to have someone available to sign. And often there were people there that were signing, but there's a barrier there that, that still happens.
[00:20:19]So I, I think that there is actually like a good educational experience, I guess, for me.
[00:20:28] Carrie Spangler: [00:20:28] Yeah. So you said, I know you said growing up, you were kind of the one and only you didn't know anybody else in your community that was like you, did you meet anyone later on that you could connect with? That was kind of a mentor or someone else that had hearing loss?
[00:20:49] Marc Brennan: [00:20:49] I, you know, most of my peers. You know, it's interesting. I feel like there's a lot more students nowadays that have a hearing loss, or at least we're running into that, having that at UNL, which is great. I, I did, I remember at Madison, I. You know, talk to a couple of people about hearing loss and like gave some, they did a little, I had people get together for students that were new to the university to, you know, trying to learn how to navigate that.
[00:21:29] And so I came and talked and about my experience and stuff like that. But. No, I didn't have, like, you know, I know a lot of people I've had like sort of, you know, personal mentors and I've certainly met people along the way that had like shaped my experience and stuff like that. Yeah, no,
[00:21:50] Carrie Spangler: [00:21:50] it's just interesting how different people connect, but I'm sure, I mean, working.
[00:21:57] I don't work at a university anymore, but I still take students and we 've seen a growth of AUD students who have wanted to go into the field because of their own personal journeys. So it's been kind of I love being able to be a mentor to those students and just different questions that they have about getting into the field.
[00:22:24] Marc Brennan: [00:22:24] Yeah, I think it's great. And yeah, I don't know if historically people were. Scared to go in because they didn't think they would be able to do it or something. I'm not sure.
[00:22:37] Carrie Spangler: [00:22:37] Yeah. I mean, I think a lot has changed over the last few years is which is kind of gets into my next question about I wanted to know a little bit more about your interest in research with hearing aids and frequency Whatever transposition.
[00:22:56] Marc Brennan: [00:22:56] Yeah. That you know, I love research. I'm a huge proponent of research. I always, even in talking with my patients, I always talk about research. I mean, I always do it and I don't, I don't get into the nuts and bolts with them obviously. But but I'm a big fan of trying to model the practice on, you know, what's been shown out there.
[00:23:22] I remember listening to my friend to Ryan McCreary and he was talking about, you know, technology level. And I actually just had a talk with my students today about that and went through all the literature and basically showed them how we don't have good evidence, that the more expensive hearing aids result in better outcomes.
[00:23:43]But yeah, in terms of my own stuff, frequency lowering pretty interesting because, you know, with that, you're taking these high frequency sounds and lowering them to a lower frequency where presumably there's, hopefully there's better audibility. There might be less damage to the auditory system in that region.
[00:24:03] And, and we've used a fitting procedure that. Josh Alexander at Purdue university developed. And we've found that it, that it can help, like, you know, it definitely can lead to improve speed recognition. And so, so that's something that I think is really cool and. I recommend it for my patients.
[00:24:26]What's interesting is I don't wear it myself. I'm not, and the only reason it's not because I don't like it. So at that time, That I was, you know, trying to figure out what hearing is to get the particular company that had, you know, the frequency lowering. I didn't like their hearing aids.
[00:24:50]So that was the only reason
[00:24:54] Carrie Spangler: [00:24:54] I think they always. Well, I do have frequency lowering in mine, but this was like years and years and years ago that I tried something and I cannot remember what the name of the company was, but it. Was very aggressive frequency lowering. was, it was a lot, and I tried it for a bit of short amount of time.
[00:25:21] And but I think it was just too much, I think, 1000 all the way down to 250 and 500, like from 1000 to 8,000 and kind of put it on top of the lows. And I, I don't remember what it was.
[00:25:38] Marc Brennan: [00:25:38] I wonder if there's a AVR song.
[00:25:40] Carrie Spangler: [00:25:40] That's what it was. Yes.
[00:25:42] Marc Brennan: [00:25:42] Yeah. I have a colleague that, I mean, that was what she wore.
[00:25:48] She loved it. She wouldn't wear anything else. I don't know what she's doing now. Cause I think they're out of business, but Yeah, but yeah, it was very aggressive. So
[00:26:00] Carrie Spangler: [00:26:00] I definitely, like you said, I had audibility to different sounds that I never had before, but it was, it was too much. So I think it's come a long way and frequency lowering to be more patient friendly.
[00:26:17] Marc Brennan: [00:26:17] Well, yeah, and I think you've hit on a key point, which is that it has to. It has to improve audibility, but it can't cause too much additional, you know, distortion, it needs to be usable. And I think if it's set correctly, it's not noticeable by most people. Like they don't. Even though it can improve speed recognition, that it doesn't have a huge effect on the sound quality.
[00:26:44] Carrie Spangler: [00:26:44] So. Do your research, do you find that you recommend that over across the board or are there certain hearing losses or frequency ranges that you've recommended for it?
[00:26:59] Marc Brennan: [00:26:59] So I think I, I kind of recommended across the board, actually. I know that's. At all contrary to, you know, what's generally recommended out there.
[00:27:11]You know, my take on the research literature is that very strong settings are bad. So if, if you're applying a lot of frequency lowering to someone who doesn't really need it, then that's going to. Degrades speech recognition and sound quality, but if you applied just enough to make it audible, but, but not too much Then my take is that either it's better or it doesn't really make a difference.
[00:27:41]And so I'm okay with that. Like if let's turn it on and hopefully it makes it better, but as, as long as we're not, you know, making things worse, I know there's some data out there that. People with a more severe hearing loss, might benefit more, we actually have one study where we found the opposite. Although I would say that most studies tend to find that the more severe, the more you benefit.
[00:28:06]So I would guess that in general, the more severe, you know, the more you get benefit, but I don't know that there's conclusive evidence on that. And so that's why I tended. Recommend it for everyone.
[00:28:21] Carrie Spangler: [00:28:21] So based on your research, do you have anything that you wish or that you can see in the future? That would be helpful?
[00:28:33] Marc Brennan: [00:28:33] Oh, man. I mean, I wish.
[00:28:41] You know, I struggle like actually in quiet situations, I feel like if I go to a restaurant or a bar. I personally hear. Okay. Because everyone's talking loudly and I don't struggle that much in those environments. Plus we tend to be closer, you know, because of the environment. And so I feel like I, I do pretty well.
[00:29:10] It's those quiet environments. Like, you know, like when I'm teaching, the students are far away, they don't raise their voice. I'm with a group of friends, you know, we're in a living room and, and people aren't talking very loud, that's for a struggle. So honestly, I, something that would like deal with that, whether it's the ability to get more gain out of my devices without feedback Everyone walks around with a microphone that automatically connects to my hearing aid and you know, and I don't have to.
[00:29:49] Like deal with it. Like it just knows maybe a hearing aid that can read my mind, you know, I know possibilities are endless, right?
[00:30:02] Carrie Spangler: [00:30:02] Yeah. Now I think technology gets smarter and smarter every day, but sometimes it's not smart enough to read your brain yet.
[00:30:13] Marc Brennan: [00:30:13] Not there yet
[00:30:16] Carrie Spangler: [00:30:16] think it is too. Is there anything that I didn't ask you about, you know, about your personal journey that you want to share?
[00:30:29] Marc Brennan: [00:30:29] Sure. You know, one thing that I thought of before we got on this podcast was. When, when I was a kid, like I used to tell people, things like that, I had super hearing, like an, all I had to do was turn up my hearing aid and then I could hear better than normal, which was not true at all. But as a kid, I believed it and you know, and my friends believed that and the other thing I would do is whenever the fire alarms went off, I'd take my hearing aid out and there'd be like, ha ha, you gotta listen to this.
[00:31:08] And I don't. So I do think there's some truth to like how we frame hearing loss and how you choose to look at it. And I think yeah, I've, I've had my struggles and I think sometimes I overlook those, you know, struggles, or I sometimes you don't know it because what you're missing you don't right. You don't know necessarily.
[00:31:32] But I think having that sort of positive outlook to, and thinking about those. Like advantages that having a hearing loss has like are a good thing. Like, like when I was counsel, when I counsel my adult patients on sometimes like, you know, sometimes not hearing, it's kinda nice.
[00:31:51] Carrie Spangler: [00:31:51] It's okay.
[00:31:57] No I think that's a really great point. Is it really does. There's definitely going to be struggles, but those struggles with anything, but however you look at those struggles and make it positive is important way to look at it. Yeah. Yeah. Well, I want to thank you today, but coming on and sharing a little bit about your story and about your research and what you have been through.
[00:32:28] And again, thanks to Ryan for introducing us.
[00:32:33] Marc Brennan: [00:32:33] Yeah, thank you. And it was fun and I've enjoyed listening to your podcasts. And as soon as I get Bluetooth, I'll listen to them too
[00:32:44] Carrie Spangler: [00:32:44] the technology advantages are endless, and they will continue to be. Yeah. All right. Well, thank you again. And thank you listeners for listening and tuning in to the empowerEAR Audiology Podcast.
This has been a production of the 3C Digital Media Network.

Episode 17: empowEAR Audiology - Parent Panel

[00:00:00] Welcome to episode 17 of empowEar Audiology with Dr. Carrie Spangler.
[00:00:16] Welcome to the empowEAR Audiology Podcast, which is part of the 3C Digital Media Network. My name is Dr. Carrie Spangler, and I am your host. I am a passionate audiologist with a lifelong journey of living with human challenges in this vibrant hearing world. This podcast is for professionals, parents, individuals, with your own challenges and those who want to be inspired.
[00:00:45] Thank you for listening, and I hope you will subscribe, invite others to listen and leave me a positive review. I also wanted to invite all of you to visit and engage in the conversation on the empowEAR Audiology Facebook group. transcripts for each episode can be found at www.3Cdigitalmedianetwork.com, the number three, C digital media network.com under the empowEAR Audiology podcast tab.
[00:01:18] Now let's get started with today's episode. Welcome to the empowEAR Audiology podcast. I am really excited today to have four parents join me and they have become quite a tribe when it comes to raising their children who are deaf and hard of hearing. There are international and national articles and organization that recognize that for parents, with children who are deaf and hard of hearing parent to parent support is a vital service organizations such as the AG Bell Association for the Association for Deaf and Hard of Hearing, Hands and Voices and others provide service models of parent to parent support that could denies in the importance of family wellbeing and servicing a child who is deaf or hard of hearing.
[00:02:08] The reason that I am so overjoyed about this podcast is because these moms bring this research to life. I am hopeful that our listeners will be empowered to foster this framework in whatever capacity that you serve. If you're a parent, I hope you're inspired to get connected. If you are a professional, be motivated to make important connections.
[00:02:30] If you are a part of an early intervention system, ensure your families get connected. And if you have a hearing challenge considering mentoring a family or connecting with a peer mentor, So today let's get started and I wanted to welcome all of these fabulous moms to the empowEAR audiology podcast. And thank you for being brave and coming on today and sharing your stories.
[00:02:55] So I was just going to have each of you introduce yourselves and just to share a little bit about you and your family and your child on and just a little bit. So everybody got to know who you are and then we'll have some great questions afterwards. So I am going to start with Nancy since I reached out to her first and have her share a little bit.
[00:03:17] I like that is a lot of pressure. But my name is Nancy Larker and I don't know, gosh, like, I guess if you Google me, I'm probably not very interesting, but it would probably tell you like, You know, I I own a business with my husband, a local technology company in Akron. And I dunno, like what it wouldn't tell you, however, is that like, I love the beach and good food and wine, but most importantly, I love my three kids, so I have three kids and my oldest is my son and he's 11.
[00:03:51]And he is hearing, and then I have two daughters a 10 year old and a seven year old. I had to think about that. Cause they both recently had birthdays, a 10 year old and seven year old. And both of them were diagnosed with mild to moderate hearing loss at birth. So and they are the reason that I'm here talking to you and with these amazing women.
[00:04:11] So I'm so grateful, grateful to have all of these women in my life. And yeah, so that's me. Hi, thank you, Nancy. Maggie, do you want to go next? Hi, my name is Maggie. I have a husband and two children. My oldest is 11 and she was diagnosed at birth with a mild unilateral hearing loss. And currently is a moderate to severe hearing loss bilaterally, and I have a nine-year-old who is typical hearing child.
[00:04:47]Professionally I work in the early I'm an early childhood intervention specialist for families that are aged at birth to three with autism. So that's the shortest bit of my professional and personal life. All right. Thank you, Stephanie. Hi, I'm Stephanie. I have a husband and three kiddos. My oldest was born with a bilateral, mild to moderate hearing loss.
[00:05:17] And we went through some trials with her. They didn't think at first that it was actual loss. They thought she would recover from it from fluid. And thankfully we did our follow-up visits and found that it was a permanent loss for her. Then I have two younger ones who are I didn't, I don't know if I said Austin's 10.
[00:05:37]The two younger ones are seven and five and they're both hearing.
[00:05:45] Hi, I'm Tina Pudelski . I am, I have a husband as a says, I love how we just turn them as husbands with no names. Let's just keep it that way. So I have a husband and I have two kids. My oldest of which was born with bilateral profound hearing loss. She was implanted and that was at birth. I was diagnosed with a newborn here and screening.
[00:06:08]She was implanted five days before her first birthday, and she is going to be she's 10 and a half right now. And I also have a nine-year-old hearing, typical hearing child. I am currently the Ohio and voices board president, which is a parent support group and, and also an advocate for other parents with the hands and voices community.
[00:06:35] So thank you for having us. Yes, thank you for being here. And I just wanted to, for all of our listeners, just to talk a little bit about that, there's several different articles out there and the audiology world that talk about a conceptual framework for a parent to parent support for parents of children who have children who are deaf or hard of hearing.
[00:06:58] And within that conceptual framework they really recommend that parent to parent support is critical. So I that's why I want this conversation to go with all of you, because I think you bring. How this parent to parent family to family support really direct, directly impacts all of you guys from a more personal level.
[00:07:22] So I'm going to just ask some questions. I'm going to have you guys determine who might want to take the lead on a question cause you guys know each other the best and we'll just kind of go from there. So I guess my first question to all of you guys is how did you all get connected initially?
[00:07:46] Oh, no, I'll go. So we all met through the regional infant hearing program, which was a local at the time. There was a group that was put together by the regional infant hearing program for. Parents and families of children with hearing loss. And so we not only got to meet each other there, but we got to meet with other professionals and audiologists, speech pathologists, people who were working with our kiddos intervention specialists.
[00:08:17] And then we also got to meet other families, which was really, I think, helpful. I know it was helpful for us and really impactful. And that's just, that's where we met and we connected. And while that group is no longer what it was when we were, when we were there, we have continued our friendship and you know, continue talking with each other and some other people that we've met through those channels as well.
[00:08:43] So it was. It was, it was a really good experience for us. It, it brought everyone to a personal level and gave us a chance to relate to one another where, and meet each other where we were at the time and go through kind of use each other as a sounding board and a brain dump at times. So, so one thing I would add is as somebody that came into that group a little bit later kudos for the group, for the professionals who brought that brought parents to parent support as an opportunity.
[00:09:15] First of all. So that's the big goal there, but coming into that group my first day there, what I find is really important that I tell other families is the first support group I went to. I left and I cried. It was not this like magical, wonderful moment where I was. Excited. So, you know what we are today doesn't necessarily represent all the emotions that can happen being around other parents.
[00:09:50] So having other parents, as a support have hearing other stories can be supportive and helpful, but also hearing other people's stories can make you sad. And that my very first support group was sad for me. And I got in the car and cried, like, didn't wanna go back. I did want to go back. But you know, you, it's really easy to compare your child to other people.
[00:10:12] Yeah. And I think that's just what people do. I think moms do it really well, and that was hard for me to, to be at my first group. So don't let that stop you. I think it just kind of shows the trials of being a parent when you don't know what the road is before you A little sad. Sometimes it's little happy.
[00:10:36] So the end result of this group is definitely, I think we remember all the positive things. I don't think we're we're at the end result. So now we are on a continuous journey, not the end, but it's funny. You said that because maybe you did come in. I actually met Maggie before. I think I met Stephanie and Nancy at my house because Maggie did Caelen's nine month or nine month evaluation as a professional.
[00:11:05] And then I remember her at one of the, and they weren't support groups. They were playgroups. We had a great early intervention team, with RIHP three awesome ladies who put parent support ahead of everything else and brought us together as playgroups. And then it turned into a parent support. I don't remember, Maggie probably Caelen was like 18 months old.
[00:11:26] Maggie grabbed my hand on the way out and said, do you remember me? And I said, I think so. And she said, I was at your house. And then she's like, my daughter here's my daughter. And she was diagnosed as well. So, and I remember Stephanie first day holding Austin, who was a tiny, she looked like a newborn and she was probably a year.
[00:11:46] And she was just, we're all going through the initial stages together, all babies, all trying to be to get through it and figure out what was going on. And so we had a platform, we had a place that was safe. So it was, it was good. It was going to be a part of, but not the end result. Definitely not the end result.
[00:12:08] No, we're, we're still midway through it, I think. Do you want to add anything else, Stephanie? I, I mean, that's how we met all through the playgroups and everything, and I think it was kind of. Neat that we all are. We all have girls that are diagnosed with hearing loss and they're all right in the same age group.
[00:12:30] So not only are we support for each other, but they can be support for each other as they get older. So, you know, we obviously this past year, we really haven't been able to get anybody together, but we do still try to get together with them once in a while and do some activities and things. And so they can at least see each other a little bit, know that they're not the only ones out there.
[00:12:54] Yeah. Which is really important too. And I love what Maggie said about taking that first step, even if you don't want to, because after 10 years look where you guys are right now and you still continue, the journey will never end. So even when the adults you're still going to be that support for them no matter where they are, but I wanted this kind of goes into another question because I know you all met.
[00:13:21] Around the same time and your kids are about the same ages, but they talk about in this revised conceptual framework about the learning parents who is characterized as having a child that was recently diagnosed as being deaf or hard of hearing. And then they talk about a supporting parent who is identified as having kind of lived through it and have having a child with hearing loss.
[00:13:44] And I know all of your kids at about the same age and you've been in this journey together, but do you feel like you have supported, identified these different roles at different parts in this journey together? I think I want you to cop. I want you to talk, Oh, sorry. No, it stayed. I'm going to jump.
[00:14:03] I'm going to jump in on that one, basically, because for a long time up until two months ago I was on a different path still on the hearing loss path, but Caelen had cochlear implants, which yes, it's hearing loss. It was a different different Avenue up until two months ago when Molly joined on that path as well.
[00:14:26]So I think that we have flipped over the past 10 years, whether it was with Nancy's two girls getting diagnosed, and one day it'll be going an IEP meeting, or I'm going into a booth test. What do you think, you know, what do you think? And then the next day that somebody else could be doing the same thing.
[00:14:45] And I think all of us, and I know every can speak, we'll speak up as well. I think all of us played both parts, hands down. Like it could flip within an hour of I'm going into my IEP meeting. I need the support I'm going into this, but no matter what everybody has done the supporting parent role. I met some of my best friends right here, they've sat with me through chemo.
[00:15:11] They came a surprise, surprise me when I was getting an infusion and showed up at the hospital. And they're not just for our kids, they were for ourselves and our marriages and our lives. And so, yeah, I would say a similar thing. I think that even though our kids are, that was interesting when I read that part.
[00:15:30] Carrie, when you, when you sent us this draft ahead of time, was, Oh, am I a supporting parent or am I a learning parent? And I think that I absolutely agree. We have all intertwined and been the other one at some period in time. And it's not just about your kiddos. It does become more. So, but through every transition.
[00:15:54] Yes. And I don't necessarily think that learning parent has to be the one with the younger kid and vice versa. It's just, I mean, cause our kids aren't even all the same. What I love is that our kids aren't even all of the same type of hearing loss. So we began, I began as a mild unilateral. I thought I didn't even belong.
[00:16:15] I was like, Oh my God, my kid barely has any kind of hearing loss. I shouldn't be here. So I didn't go back for a long time. But we all like span the different hearing continuum and I don't think you need to be a learning versus a supporting it's all changes at any given moment. Yeah. Anybody else want to jump in?
[00:16:40] I agree though. I think it's almost like a continuum that you just continue depending on what situation you might have to be going through or what comes up. And it's always going to change. And I know, you know, from a personal perspective too, like I am an audiologist, but just went through a cochlear implant journey.
[00:17:01] And I reached out to my audiology friends who have cochlear implants, and I learned so much from them going through that journey and where another situation I might've already had a different experience and was able to be more in that supporting role instead of the learning role. So I think it changes and continues to change throughout life.
[00:17:22] Yeah. I'm sure there's a lot of research on just that if you look at transitions with people but one of the things you said, you're a professional and you're. You have personal. And I think so those are the things that have just personally happened to us. I was a professional in a different way that may this highlighted this.
[00:17:41] So some days I did talk to the ladies as maybe more of a teacher or an early intervention specialist, then I put my professional hat on. But yes, hands down. I can absolutely attest to the fact that, you know, as my own child, Molly has went from a unilateral hearing glass to now being a bi-modal hearing user.
[00:18:06] I have experienced the child at all different levels, and I don't necessarily think I had to go to a new support group to get that parent having open hearts and wanting to listen and be heard at the same time, kind of would help you get through that continuum. Maybe it's like an infinity continue. It just changes all the time.
[00:18:30] Yes. No, that's great. So kind of going into that, cause this is getting emotional, but what are the emotional benefits of being connected and, you know, encouraging the other parents to be connected if they're not connected. Yeah. I think Tina nailed it on the head. With that last one when she said, you know, it's not just about our kids.
[00:18:53] Yes. Our kids brought us together. That is how we met it's because of them that we are friends, but our friendship has just gone so much further. And I think we could all agree that we just get it. And, you know, as Maggie was just saying, sometimes we have to know when to change hats, you know, that professional hat, that friend hat, the mom hat, the, whatever that support or learning hat might be in, it's just, it's just knowing like, okay, you get it.
[00:19:22] And sometimes it's, sometimes it's validating the other person's feelings and sometimes it's offering to help research with them. Sometimes it's, Hey, I'm having a really crappy day. And it's like, can you just cry with me? Cause I just need somebody to cry with me. Like we we've seriously experienced all of that together as, as friends in one way or another.
[00:19:45] And. I think the other thing that we really connect well with on an emotional level is just celebrating victories. So we have, like, I think any parent who has a child with different needs can, can relate to the fact that there are various victories that need to be celebrated and whatever that milestone is, it could be very different.
[00:20:08]And so no matter what it is, we celebrate in those together. I, I remember the day that Tina came in and said that Caelen said the word cookie, and it was like, we, we knew like she can hear like, you know, it's, it's just, it all came together because she heard the word cookie and she said the word cookie and.
[00:20:29] I mean, that was huge. It was huge. And maybe not every parent would feel that way, but we felt that way because we knew how, how important and big of a milestone that was at the time and still to this day, things like that. You know, whether it's our kids, you know, accomplishing goals on IEP or whatever, it might be like, we know how to celebrate those because we understand how big those are for one another.
[00:20:57] And it's, it's helpful to have each other in those types of situations. So I think that, you know, we're able to just connect on that level. Can I piggyback on your, get it moment? I think the, get it moment too. And I like how you did expand it beyond just, you know, this category of kids. I think that when you put it a group of us together that get it.
[00:21:21] So. It is nice to look across the table or whatever, and be able to know that she gets it or he gets, you know, that the parent across from you gets it. I've run a lot of parents support groups for kids, with parents, with autism. And it's even though every kid with autism is different. Every single kid with hearing loss or deafness is different, we're all different.
[00:21:47] But as a parenting experience, if you hear another parent and you just get it. So it's just so nice to be heard. And sometimes you feel like an outsider as a parent. If your child is different from the norm and you don't know where to place that quite yet. So I do think that parents, the parents' support kind of helps us.
[00:22:11] It's nice for professionals to hear us, but another parent that gets it, the get it factor is huge. Huge. Not another example of that I wanted to share was the day that my daughter had to take her hearing aids out and walk by herself, down to the swimming pool without me, like really far away. She couldn't hear she's at a moderate to severe loss at this point.
[00:22:38] And I wasn't allowed to be near her. And I'm sitting on the phone texting like, Oh my God, my like I'm watching her. And so I'm texting a blow by blow of I've. There's nobody there to talk into her ear or help her. So that's, so it was like in real time support, so it can be IEP victories, but it can also be the, I don't, my husband might get upset with me if I text him one more time.
[00:23:10] So. I'm going to go to you guys. I remember that day you were at the swimming pool. So clearly too. I really do. Like, I remember getting those texts and I remember the parent, like, it was sort of a mixed thing for you. Like there was some panic, but at the same time, like there was that, okay, this is like, she's starting to feel a little independent and this is good for her, and this is healthy.
[00:23:31] And, and I think that's another way that we can kind of balance each other out too, because we can say, Hey, Maggie, we know this you're freaked out about this, but guess what it's going to be okay. Like, and we can kind of talk her through it and keep her calm enough to let the experience happen and, and sorta just soak it in and take it in.
[00:23:50] And that real time, I agree with that a hundred percent. So then I was able to share the victory of the picture of the swim teacher laying on the side of the pool with her legs, doing scissor chops, to try to show my daughter what she wanted her to do. And I was like, it's at that picture, I was like, it's going to be okay.
[00:24:14] It's going to be okay. I don't like you guys are released. You're fine. But that's, it, it gets emotional. It gets like sad too. I mean, and I think I just hit on another thing when maybe your spouse or your mom or your dad can't handle one more, more conversation with you. It's nice to talk to another person even before we were really, really emotionally close.
[00:24:38] It's still nice to talk and reach out to another person to hear what their experience was, what their thought process was. I don't want to give the impression that you have to be besties to have this situation either. It's just. It was from listening and sharing and the, get it factor that I think this can happen for people.
[00:25:00] No. I, I think that is so critical, critical that get it at moments and the blow by blows and the celebratory victorious moments I really important to have. And like you said, nobody else gets it the same way as like the example of, you know, your child says cookie for the post time and someone that does not have a child that's deaf or hard of hearing would be like, Oh, okay.
[00:25:25] But you are like, woohoo we're getting the balloons out. We are celebrating, right. I mean, this is a huge moment. And by having that support, you can celebrate those victories too. So kind of going from that emotional part to more than knowledge part, how do you feel like being connected to each other has helped you with like getting knowledge or advocating or even, you know, your daughters being more advocates for themselves.
[00:25:54] Okay. I'll start this. So. Austin as you're familiar, Carrie, I took a very long time to get her to the point of recognizing when her hearing aids died. She's finally doing it on her own this year. And yay. That's a lot of that is the school and the team that was working with her regularly every day.
[00:26:16] But I think also some of it was seeing these other girls who are her own age, knowing when their hearing aids are that and talking about talking care of their own devices. And so she now she pretty much does it all on her own. I do help her clean them. So cause you know, she's not perfect, but it it's a big step for her too.
[00:26:40] Become more independent. And she's telling people when the FM system is not working anymore, she's advocating a lot more. And I think part of that is she's seen these girls do it when we've been out. Molly was advocating for herself and also saw it and she was like, Oh, I can do that too. So I think that was a big step for her.
[00:27:02]And so, you know, just having that for her also as far as the knowledge goes, I have a coworker whose daughter has been having a lot of problems with her ears. She's not diagnosed with hearing loss or anything, but she's had multiple tubes and surgeries and things going on. And she's been in a lot of ear pain recently.
[00:27:24] And one doctor told her mother that is just psychological and the mom was very upset. She was like, no, that's not, that's not what's going on with my kid. So I was able to reach out to these guys like, Hey, You know, this is what's going on with Vanessa's kid and you guys got any ideas who, who can, who else can I send her to?
[00:27:43]So they were able to give me some, some ideas of other things that it could be, or some testing that she could have done in other doctors for her to go see. So it's, you know, when you have questions we ask and if we don't know, we can help find the answers. Anyone else want to add onto it? That's okay.
[00:28:06] This is all good information, but other parents and professionals to hear all over the United States and beyond, I mean, I think that's, you know, the original question, what was the original question? So I make sure I zero back in, sorry, you don't have to more like increasing your knowledge with each other.
[00:28:24] So how does that help you as a parent? How does that help you a daughters to be more confident or advocates and who they are. I think that seems to me to be the stem to the ongoing cycle of who's a supporter and who is a, a learner at any given moment and age doesn't make that difference. Exactly what kind of hearing loss or deafness doesn't make that difference.
[00:28:50] But it's the ability to reach out and touch someone, you know, know that you can call a parent to ask for, have you guys heard about camps? And then I hear about one of you that knows about a camp and I'm like, tell me about that camp. I want to know. So you just reach out and you ask questions and you just get more information.
[00:29:10] And quite honestly, you know, it makes it better for the professionals sometimes too. It may make professionals a little crazy because they have parents that are talking to other parents that it makes them super advocates, but it also helps professionals not have to work so hard cause professionals.
[00:29:30] Don't really have time for beyond Saturday afternoon or Tuesday evening when my kids in swim class, it's really not their role for us to text at five o'clock at night and be like, my friend is going through this issue. What do you think? You know, it just helps dispense that information amongst people just so much easier.
[00:29:52] So I think that, I think I just sort of went into the answer to another question, which is what is the benefit? So parents and professionals, and it's just, it helps, I think it helps professionals have a less harder jobs to do. Some of that we are so needy parents are so needy it's from their professionals that they work with.
[00:30:17] And the parent to parent's support kind of just helps you have. More support. So your professional can be the professional a little bit, even though they're empathetic and wonderful and supportive some of this emotional stuff or just networking is really helpful for parents. So we can, we can do that a little bit on our own.
[00:30:42] I learn so much more than one professionals experience and Maggie, what you said is so true because there's been other research about other support organizations and professionals kind of being involved, but more a fly on the wall. And what they found is that professionals learn more about their own practice from being around individuals who are actually going through the process than they do from a textbook.
[00:31:10] So kudos to you guys as parents for being able to share your own experiences, because otherwise you wouldn't know that like the, you know, swimming like, okay, well, how hard is it for the coach to get out on the side of the pool and just demonstrate really quickly? Because obviously you can't see your, your legs underwater, but it's a simple tool, a trick that I can make somebody else's life easier.
[00:31:41] And so what kind of parent though, and what kind of talk it? What did I have to do to prep that teacher, that my daughter is even coming down there. Right. So then you ask your other parents, people, would you guys call, would you email? What would you do is that normal for us call should be called, you know, you're gonna go through a little bit of all that beforehand.
[00:32:06] And I love what you just said about professional as a professional in the field, myself running parent support groups has probably been a huge factor. And what kind of professional I am back in only to being the parents of my own child. Definitely. And practice kind of professional. I am, but professionals gain so much from hearing, hearing parents too, that we all need each other.
[00:32:38] We do. At parents, a parent can be really good. So I hope lots of professionals listened to this cause they're going to learn so much from all of you guys being connected. So have you found, and I think Stephanie talked a little bit bit on this, but having your kids being connected to each other, what kind of benefits have you seen in your own kids' growth or acceptance of their own hearing challenges?
[00:33:04] Anything? I was going to share yours. Oh, go ahead. Do it. I, so Tina and I had to have a very special moment right now, which is that my daughter transitioned from bilateral hearing aid to wearing a cochlear. And so, you know, before even family members, the first people I told were these three and then Tina's like gone on like speed dial.
[00:33:33] If we still had that for everything. But what was the most profound to me? So Tina and her family did everything and these whole group of girls, but Tina got more of it a little later. You would think that all the support was from Tina to me. And then I teared up when I realized that you had sent me a text, or I don't even remember what it was, where, where she said that Caelen doesn't have another friend with a cochlear or no, my daughter, Caelen said that to my daughter on a message.
[00:34:08] And I was so emotional about that. Like I was the one like receiving so much from Tina in this process, but I never, I never thought about what my daughter was like giving Caelen I'll jump in at that point. Well, yeah. The it was, it goes back to as well, even Brian Maggie's husband was sending my husband, Jeff, an email during the surgery.
[00:34:36] And I didn't know until a couple of days later and Jeffrey said something about it. So it's across the board, I family member to family member. And then Caelen had Molly and they would write each other. And I said, she would tell me that she would check in on her just to see how it was doing, how activation was giving her tips and tricks.
[00:34:55]I have, I signed Caelen up earlier with a magazine for a pen pal and that lasted for a little bit. And then they just got busy and stuff like that. So they tried to match her up with somebody to cochlear around the same age. And those connections are so imperative to them. And I could tell even recently, you know, Because of the pandemic and everything else like that.
[00:35:19] And they, she, we, haven't gone to the groups that we've gone to, right. The camps that we've gone to, or she hasn't seen her for friends to just be around them and be yourself. Yeah. Recently we went to dinner a couple of weeks ago. It was just my husband, Caitlin and I, and at the end of the night, it was a smaller restaurant.
[00:35:40] A gentleman walked by, we were talking about Molly and we were celebrating the fact that she was at 35 decibels in the booth. And we were talking about at that dinner and it was just these two tables up in this restaurant and counts like how that's awesome and we're going through it and everything else like that.
[00:35:53] And. This woman turned and said to us, she's like, are you, do you happen to be talking about cochlear implants and nobody that who didn't know a booth test decimals? You know, it sounding like a duck or whatever. Nobody would know that unless, you know the thing. And she goes, do you happen to be talking about them?
[00:36:10] And Caelen's like, well, yes we are. While her husband had gone to the bathroom and I'd been looking at the one side the whole time with nothing. And as he came back to the table, while there was a cochlear implant, turns out implanted, or they have the same surgeon now, at university, and they just started talking and joking and he, they were comparing their cochlear’s coming off on he's a machine.
[00:36:34] He works on machines and his coming off and kills like, Oh, mine does that as well. But she needed that connection, whether it's through ages or whatever, all of a sudden her soul, her little soul seemed filled just from seeing somebody like her. And being with and she left and she felt she was a hundred times better and at a hundred, like a better mood than she had been in weeks because she saw somebody that was just like her randomly out in public.
[00:37:05] So that, that connection, that kid connection is so important. And it's not just for us, but it's it's for the siblings as well. I mean, we could go on and on about the, the bond across the boards and everything else like that because the sibling connection is also special with a lot of, you know, the hearing kids.
[00:37:26] So talk about a negative. This is like super wonderful that I will say sending my daughter to camp, to see other kids. That's cool to see other kids that were on the spectrum from ASL signing deaf to mild. By bilateral hearing loss. You know, Molly came home from that first time and wasn't quite sure, you know, it, it can seem a negative.
[00:37:57] She wasn't quite sure she was liked them. And I think that, that, although that seems a negative and it, it gave me pause that time I had, but now kind of if I were to share with another parent, seeing those differences, which kind of does show that everybody is still different, that the hearing loss doesn't make you kind of like a friend or a not friend are similar or not similar, but it really can be just the connection you make or the longevity like with Austin and Stephanie's with.
[00:38:36] Stephanie’s daughter, Austin. I feel like Austin's had to watch the girls for a longer period of time to feed that happened over time. And without that longevity D to C, it can start different. It can, it's not over yet. We don't know what that's going to look like, but we're really just embracing everybody is nobody's really the same.
[00:39:00] And yet there's this beautiful thing that I think Tina's explaining, which is, but yet there's still a beautiful thing that will happen when you feel the same. That's just life. So I think it's the nuance that can make parents, parents support positive and sometimes momentarily feel negative. I think that's my theme.
[00:39:23] Right? The first time I went to group, I cried. It didn't feel super positive, but the longevity of living this out, knowing that I could pick up the phone if I had to. And then I stopped going to parents support groups. So my kid was two and a half and she progressed, I knew these women were here and it was the professionals that reminded me.
[00:39:47] We have another quarterly group and we'd love for you to come. When I was like, ah, I don't know, I'm not ready. I don't think I have enough in common. And I put it off from very young to, we were almost three and I only came back because my kid progressed and I was like, I need these people, but knowing they were there.
[00:40:09] So as a professional, I just went a really far away. But as a, I would say to professionals to please just keep reminding your parents that there's other parents out there, because what may seem negative might not be negative. What seems positive? You know, you don't know what any parent's going to get out of it, but you do know there's these parents out here and they're willing to share their phone number.
[00:40:33] And so don't give up on them one time because it's a process that changes what was okay. Tomorrow, yesterday might not be good for me tomorrow. So professionals need to not push it, but absolutely continuously. I would think, make it available, know that parent who might say, would you mind if I shared your phone number with somebody?
[00:40:55] Because now all four of us I know have had random coffee chats with people because a professional asked us to and shared our phone number. That's okay. I love it because, well, I guess a couple of things kind of come to mind. One thing, if you go back to that learner supportive role, I can see like, you know, Caelen and Molly
[00:41:21] I mean, that's just that learner supportive role right there. And I'd be like kid way. So Caelen reaching out and saying, Hey, you know, I went through this and I have this. And I'm feeling validated that though, someone else her in that role. But you should, Tina about the restaurant I wanted to kind of go off of that one, like meeting someone, an adult who was a little bit older from your kids.
[00:41:47] Do you feel that it's helpful for your own kid to meet other adults or like teenagers or someone who's older than them? Who is deaf or hard of hearing. I'm going to jump in on that first, the only cause we do, we do go to several camps. We travel out of state and we go to a camp with a group Songs for Sound.
[00:42:10] And it is for families with deaf or hard of hearing. And they have the panels. And the last time we went, it was right before lockdown. About a week before lockdown. The last time we left the state, I think, and Jamie was her main focus was to bring in teenagers for this panel. And we sat there and Caelen and her friend, Lily did not want to move.
[00:42:35] Now I will say this other family, this goes back to parent parents support. We met and she would be in the fifth week. She would be the fifth part of our group if she was in Ohio. And we've met wonderful families from all over the country, these events, but this family specifically as well, she is just like us.
[00:42:52] And they are some of our best friends. And her and Lily sat there and didn't move for three hours while these teenagers answered the questions and everything else like that. And she kept raising your hand. I was where I was trying to hold her hand down because let other people talk. But when we left.
[00:43:11] You know, she came home from that weekend and they were only in school for two weeks, I think, before they got kicked out. But in the two weeks she learned something that she didn't know to advocate on or something to ask for. And she felt comfortable. She came home and I remember her saying, she's like, mom, I listened to what Lexi had to say.
[00:43:29] And I went to school and I asked him to repeat, repeat it this way. And she goes it worked. So those panels, those kids, whether it be a parent panel, which all of us have sat on together. And I, as we're sitting here talking, I forget all the times we've sat on whether it Kent state office at Kent state together next to each other and told our stories and cry or sat at, you know, the family center, you know, telling our stories next to each other.
[00:43:54] And it's funny how 10 years later, you forget all of these situations where we've done this and all the people we've met, the professionals, the interns, the, you know, the kids coming up with it. But. We've sat next to each other, telling her stories over and over again to people doing this. And I don't know if it ever will ever, ever stop learning, like you said, Carrie likes Nancy said
[00:44:22] Like whether it be college age or high school or we're going, or junior high level. Now most of us just having that connection and having them listen, having us listen, it's a never ending cycle being grandparents going forward. I mean, I could see that going on for years and the continuum it's extremely important that kids have access to.
[00:44:47] The old to the older generation or somebody that is like them, but they've walked the path before and they don't see something that, or they tell you something that maybe you just don't see right now, if that makes sense. I know I'm feeling it. I think you also have to follow your kid's lead and Molly wasn't as into kind of getting to know people.
[00:45:11]But now she is, and I can feel it. And I do find for me, I'm ready. Like I think she does need more older kids. Cause they, they hit the point to where I think your kids just like older kids, they think they're cool, you know, and I would love, so I look forward to more opportunities actually for her to either be around physically adults or teenagers.
[00:45:42] Because zoom is not super great for them. So yeah, but I, I feel then as somebody who might not have had as many experiences with my daughter in that regard, I do I feel a missing element at this point that I would like there to be, be more exposure to older kids or adults for sure. Yeah, no, those are all great.
[00:46:08] And I just know that a lot of the kids and middle school and teenagers that I get to work with their exposure to just say, college students and realizing, Oh, they can go to college or they, you know, have a job at wherever. And then I, I can do that too. So it just elevates their self-confidence and whatever they want to do, because they'll see someone else in that role.
[00:46:33] So as we kind of wrap up today, I wanted to ask a couple of kind of ending questions and I know we've talked a lot but kind of circling back around to that parent or parent support. So what kind of last advice would you give parents who may not be connected? And I know you've said it, but I just want to kind of emphasize again, or maybe you've thought of something else along the way about parents getting connected with others.
[00:47:03] And then I'm going to ask the professional question next, but parents first. Okay. So Tina, where are you going to go? No, I was going to tell Stephanie to take this cause she hasn't led yet to you, but Nancy, I want you to leave too. Yes. I was thinking the same thing. I was like, his stuff's going to speed up and she's staying on mute, but also we're calling her out because totally, totally called you out steps.
[00:47:26] I think you should take it, Stephanie, do it. Okay. Pressure's on. Thanks. Well, you guys were doing such a good job of talking that I just felt like I should just be quiet and let you go, you know, I'll add, I'll add to what Stephanie just said. I felt like I had to be quiet there for a few minutes. Cause I, I couldn't like compose myself to talk without crying.
[00:47:49] Like I was like getting a little too emotional and felt like I needed to step back for a minute and like, Neither myself before I took time back in. So I'm back now, but Steph take this one. So yeah, for other parents, I mean, I know a lot of it kind of depends on the area that you live in. You maybe there is not any support groups nearby.
[00:48:14] I mean, if you live out in Montana, You know, where's the closest city to you, you know, what, where are you going to get support from? So I think there, you need to keep in mind that there's a lot of different varieties of support. You don't necessarily have to have somebody that you can go and sit down at a coffee shop with and have a whole face-to-face conversation.
[00:48:35] You can have a zoom call or, you know, just text messages. I mean, we have a group text message that we just keep, you know, back and forth with. And it's not even just about the kids, it's about everything that's going on in our lives. So just having somebody that, you know, you can call or text, you know, like send them a message.
[00:48:56] Hey, can we get on a quick zoom chat? I need some advice. I need somebody to talk to who knows what they're going through, knows what we're doing. And I think just keeping in mind that there are a lot of different. Ways to get support from other parents, you don't necessarily have to meet face to face.
[00:49:12] And like Maggie said earlier, you don't necessarily have to be best friends to support each other and to understand what each other's going through. So maybe you meet one time at some convention for, you know, deaf and hard of hearing kiddos and you just trade numbers and you know, that you can reach out to that person.
[00:49:35]If you need something or just need somebody to talk to. So yeah, to piggyback on what Stephanie said, I kind of feel like technology has almost removed the. Excuse for being, for not being able to reach out for someone to anybody. Really. I think that, you know, there are so many avenues, so between social media and just the, the internet and being able to communicate like that, I mean, like we're doing right now, like we are having a conversation using technology.
[00:50:11]We're not, you know, sitting in the same space, but we are still very much a part of the same conversation. And I think that being able to connect with people is always important. And like Maggie said, it can feel really scary to take that first step, especially if you don't feel ready. But I think that the one thing that I would encourage all parents to remember is no matter where you feel you are.
[00:50:44] Somebody out there can relate to that. And this community of people is so encouraging and so helpful. And also I think willing to wait for the moment that you are ready, but if you reach out and let them know I'm here, I'm not sure. Like, I'm not sure I'm ready yet, but I'm here. And I need someone to know that I'm here.
[00:51:10] People will, people will keep you, keep you in the loop and keep you in mind and, and continue to you know, reach, reach out to you. And you'll, you'll start to make those connections sort of naturally there's lots of online support groups. I think all of us are involved in a lot of like Facebook communities of parents with children, with hearing loss.
[00:51:31] And you know, even if you're not. Going to be really vocal on those sites. I think just seeing all of the other things that parents are posting sometimes is even really encouraging. So maybe starting there, right. Join one of those online communities and just sorta creep for a little bit. You know what I mean?
[00:51:48] Like see what other people are posting and what other questions people other people might have. And, and then when you're ready, jump in there, if you feel comfortable and you'll, you'll find people that you can start to connect with. And it's, it's going to make sense when the time is right, but don't be, don't be terrified of it.
[00:52:08] Just start somewhere. So Nancy just sent me a picture like a couple of weeks ago that I, I totally forgot how I reached out to Nancy, which I personally went through a ton of my child only has a unilateral hearing loss for a long time. And I did not go back to support group and I forgot that I sent. Nancy and I ran into each other.
[00:52:38] This is hard to where I work is also where the infant hearing program is housed out of. And so I would see Nancy at different times on a regular basis, actually, she would drop in, in another program. And so I knew she was going to be there and I knew she would show up at certain time. And I wrote her a note saying, I think I'm ready when she sent it to me.
[00:53:07] It's like, I think I'm ready. Would we. Have coffee because I, you know, my professionals, so what would I say to other providers or other parents to make this next step? I would, I would offer that professionals professionals can really helps say these people are out there. And so when you have a good one or two or three, and you think, I think this would be a really good fit, this is a really great mom.
[00:53:38] Let them know that for parents that received those phone numbers, those names or just know they exist for whatever reason, just you don't like, I love that. Nancy said you don't have to be ready for them because clearly that was my story. When you're ready, you know where to go. So whether that's creeping on social media and you happen to love this one person's responses for everything, that's probably the person you're going to private message.
[00:54:07] You know, we were a little bit more old school and I ran into her and gave her a note. So to get more comfortable, I don't even know if Stephanie or Tina know that I forgot. I totally forgot. It's like, but that's kind of shows you where all as parents in a different place at a different time, and we just need to know those places are out there.
[00:54:29] And then when you're ready, you'll put it. It means you're going to be vulnerable to be open, to make a new best friend. It just means you're being vulnerable to be open, to ask a question about your child, which is super vulnerable. Or to ask somebody else about their child. There's an intimacy there that I think people might be uncomfortable with.
[00:54:53] So whatever way makes you feel the most comfortable, it's, it's an intimacy that can support your decision, making your problem solving, even if hearing another person's story makes you feel like, no, I really do love this. Do you want, okay. So know that if you don't want to do it, it's not time that there may come a time.
[00:55:17] So keep that phone number. So just to kind of wrap up, is there anyone that wants to say any last minute words of wisdom I'm going to, I wanted to piggyback on that last one, too. And this probably ties into words of wisdom, or I wouldn't say wisdom, which is just being a parent. Like we said, you know, putting yourself out, they're looking at the social media, having the access to other parents or other families.
[00:55:45] And, you know, that's important for professionals to realize as well that they have to be willing to listen and listen to their families and they want, and I think that's very important for this field because there are so many different opinions on everything that it's what the family wants. And what is that?
[00:56:05] Families don't know what a squat is, what is best for the family? Because every family is different. We've said it, Stephanie said from like Montana, like that's a different, you know, Kentucky's a different area. All of Ohio is different. You could be in one part and then another County has a different system or set up different support groups, parents systems out anything.
[00:56:29] It's so different. And one story is not the same as another story. And I'm also going to say it as a fam, a family where my child, it was, she was different. And I remember sitting on support groups and not, yeah, I line and not joining it or anything because a lot of it could be, you know, it is great.
[00:56:48] It's the, my child said this, or everything's great when you do this, but there are people behind the scenes where it's not the same and things aren't like, great, or it's not working the way it should or something was. Didn't go right in surgeries or anything else like that. And so there are other, are those people behind the scenes as well that they need the support.
[00:57:10] They just don't know how to go about it because they're not the typical path as well. And so I would say to those families, there are people out there that are listening and other families behind the scenes. It's just, it's going to be the connection through the professionals, through the audiologist, whether it be the educational or the clinical or the speech therapists, or, you know, earlier in early intervention, whatever it is right now at this time it's going to be up to them to be able to provide the initial contact.
[00:57:41] Like we had going forward and make, I think that you've discredited yourself. Cause I think you forgot that the coffee chats that we've held as well early on. And that's probably how we really got to know each other. And I think Nancy and Stephanie were pregnant at the same time. And then I remember being in another support group down in Akron and Stephanie telling us she was pregnant with Casey with the third.
[00:58:04] I think all of it major moments, whether it be Maggie, myself, you know, our moms are sick and at the end and everybody jumping in or camps or, or moving anything, it is always been like at these parents support groups or on our group chats, which it can easily go from one Texts to, a hundred texts in five minutes.
[00:58:28] So. But it is, it's imperative that the professionals provide those contacts or access is its access to the contacts because parents might not want to take it, but at least there's access to different different people in different health groups. So I, we are really going to talk for five hours, Carrie.
[00:58:50] I do, I do want to add to something that Tina said, it triggered something that I think is really important. You know, for everybody here. So we all are hearing parents and we all have both hearing children as well as, or typical hearing children, as well as children who are hard of hearing. And I think that these support groups are equally important for those siblings as well.
[00:59:18] I, I think, you know, my son, he even has met some friends through some of these communities. And I think that there's a lot that they can learn as well. And just, and then there's a lot that they can teach as well, too. So I think that also just knowing, you know, Tina is saying that it's a family, a family affair, really, and it is, it truly is.
[00:59:42] There's a lot of connection there for not only the parents and the child that has the hearing loss, but the siblings as well. So I think that's important to consider as well for people who are thinking about or teetering, should I, or shouldn't, I it's, it can be a lot bigger than just making that connection from one parent to another parent.
[01:00:06] It's truly making that connection from one family to another family. And in some instances, Good luck, Carrie, with all these themes. Just good luck, but I'm just going to say whatever I want to say. Like, yes. So shit, I think about just try, you will never have four people again, you're going to do so much editing.
[01:00:28] Okay. I agree with everybody and yes, I think, I think what's important to note. And this is where I do think my professional place makes me see this one piece really big. When I watch parents of children with autism, there is no one child with autism that is the same, and it's a very similar community.
[01:00:50] And that there is a very diverse, long continuum of how to support your young child with. That might have a diagnosis of autism. It's a similar field here. And I think that what I have learned professionally from listening to my parents in the autism community that I work with is that it's not about maybe what anybody chooses do moving forward.
[01:01:22] It is so much about the, get it factor that another family looks at another family in the eyes. And even though at first, all I saw day one or that one day was what was different and that's really common. You can see so clearly what is different about us, but. Over time and just kind of listening to another person's story can make you start to see what's similar.
[01:01:50] And that is that families are families and we're all different, but we all are to quote maya Angelo. We are all more alike than unalike. There are common themes that you'll always find with just special parents of special needs children. And then as we move into just parents of kids with that are hard of hearing or deaf, there may be a wide continuum of how we treat them or how we decide to move forward or what their families look like.
[01:02:22] When yes, we all four have a lot of similarities in our and our family. And that is maybe what helps us, but we also have all four of us to come in contact with other families and seeing what is different is also so. Hopeful to my parenting process. So there's beauty and finding your tribe and what, and all the similarities.
[01:02:50] And there is still beauty in finding a tribe that has some differences too, but you still learn from it. So we're more alike than not alike. We all have common themes and we all take what we need and we leave the rest behind. Wow. Great. No, I love that. I think that sums up this conversation so well with and I w first of all, I want to thank all of you for being on this podcast, because I know that this conversation is really going to help.
[01:03:22] Professionals it’s going to help other parents. And I hope parents who are not connected yet will be inspired to either get on a little Facebook, creeping and find somebody that they can connect with either privately or on a Facebook group, or do a coffee chat or whatever. And I hope our professionals out there recognized just from this common conversation that get it factor and that get it factor is so important in making sure that families are connected.
[01:03:52] And if they're not ready, that's okay. That they plant the seed and they circle back around at different appointments because at some point in time Parents will be ready. And that's the important part. So again, I want to thank all four of you guys, but being empowEAR Audiology Podcast, and I have followed all of our listeners out there.
[01:04:13] We have a Facebook page, so feel free to follow that and engage in the conversation. And thank you again.
[01:04:23] This has been a production of the 3C Digital Media Network.

Episode 16: empowEAR Audiology - Dr. Michelle Hu

[00:00:00] Welcome to episode 16 of empowEAR Audiology with Dr. Carrie Spangler.
[00:00:16] Welcome to the empowEAR Audiology Podcast. My name is Dr. Carrie Spangler, and I am your host, a passionate audiologist with a lifelong journey. Living with hearing challenges in this vibrant hearing world. I wanted to have an empowering podcast for all of my listeners. Many of us learn and grow by being a communication and connection with others.
[00:00:40] It is my hope that all of my listeners will learn something new and be empowered after each episode, whether you are a professional parent individual with hearing loss, or just want to be inspired. I am glad that you are here with us today. I would be grateful if you take a moment to subscribe and give a positive rating for this podcast, also like the Facebook page empowEAR audiology and engage in the conversation about each episode.
[00:01:11] A transcript of each episode is also available on the 3C Digital Media Network webpage and the section of podcast. So one of my favorite topics to share about professionally is the critical need to have peer to peer connections. As humans, we thrive in community, many connections I've made because of a common bond, whether it is through work and activity, kids, a loss, or a celebration.
[00:01:41] Through my own personal and professional experiential hearing journey, I have found the need for peer to peer connection with those who share a similar hearing journey. And so today I am so excited to introduce Michelle Hu I cannot wait to have this podcast conversation because it really highlights the power of peer connection.
[00:02:05] We met recently because of a shared mentor and shared audiologist Dr. Carol Flexer, who suggested that we connect. And this connection was immediately. So let me share a little bit about Dr. Michelle Hu. Dr. Michelle Hu, who is a pediatric audiologist originally from Kent, Ohio, and now lives and works in San Diego, California.
[00:02:31] Something unique about Dr. Hu is that she also so grew up with a hearing loss and now utilizes bilateral cochlear implants. Because of our personal experience she feels especially equipped to work with children and their parents. She is the creator of mamahuhears; an Instagram account, where she shares her personal and professional experiences as an audiologist with hearing loss.
[00:02:57] She was inspired to create mamahuhears when her own patients and started growing up and having children of their own and asked her how she heard her baby cried in the middle of the night. So again, I am so excited to have you today. Michelle, welcome to the podcast. Thanks for having me. I know that we only recently met, um, but I've always heard about you in the past, through our mentors, through our mutual friends.
[00:03:27] And it's just so fun to actually get to connect and create something with you. So thank you. Yes, I thank you for being gracious to come on the podcast today. And I'm really excited to have a conversation, but I wanted to find out from you and for all of our listeners just to be inspired, but can you just share a little bit about your own personal hearing journey growing up and school and all of that good stuff.
[00:03:54] Yeah. So for me, um, I wasn't diagnosed with hearing loss until I was about three or four years old. I might have been born with hearing loss. I don't know because they didn't do hearing screenings in the hospitals back then. Um, so my preschool teacher actually told my mom. You might want to get Michelle hearing tested.
[00:04:14] Um, she's kind of sneaking off on her own during story time, she's reading her own book or she just sitting by herself in the corner. Um, and I got diagnosed with a mild hearing loss. I was fit with hearing aids pretty soon after that. And my mom tells me now she was, she was shocked, um, because I had pretty good speech and language.
[00:04:35] I would Respond to her, um, requests at home, whether it was English or Chinese, I would, you know, go get the shoe there, go get the plate, whatever it was. Um, so she was very surprised, uh, when I did get the hearing aids though, I was just in awe. Um, sound, I could hear the birds outside. I could hear my dad showering.
[00:04:58] I could hear the garage door opening when he came home from work. So it was, it definitely made a difference even with a mild hearing loss. And, um, at that young age, I. I knew that they were good for me. My mom said she never had a problem keeping hearing aids on me or losing them because I immediately attached that value of sound, um, to something positive.
[00:05:25] And she says she had it easy as a parent with hearing loss or a kid of a kid with hearing loss, because I was just that way. Um, My hearing loss is as a result of enlarged vestibular aqueducts, or EVAS as well as Pendred syndrome. Pendred syndrome is a recessive syndrome where both of my parents carried the gene and I was one in 25% chance of.
[00:05:52] Getting a hearing loss. My brother, I don't know. He hasn't taken a genetic test, but he has normal hearing. So he could be a carrier, um, or he could not have it at all. Um, so, and it's just a saliva test. My husband took it and, um, I know that all of my kids will be carriers, but they will not have Pendred or EVAS because he doesn't carry it.
[00:06:15] Um, so for me, because I had EVAS, every time I bumped my head, my hearing would get worse. So I was probably a cochlear implant candidate by maybe age 10, but I actually didn't get a cochlear implant until I was 27 or 28 when I was learning about them in school. When I was in school for audiology, um, I went home and I told my parents, Hey, did you know about this cochlear implant?
[00:06:39] Like, this is what I'm learning about. It's really cool. And my dad said, you know, We've known about it and we just never thought that you were a candidate number one, because you did so well in school. Um, and number two, they just weren't sure about the technology yet. Um, but with me learning more about it in school, knowing that it's not necessarily a last resort, it is an option for me.
[00:07:07] Um, I ended up getting my first cochlear implant and plan during grad school. So my classmates were there at my activation and, um, I don't recommend this, but I watched the surgery probably two weeks before my own because of my rotations. Um, and so that was a little, a bit nerve wracking when I was in, uh, um, surgery bay, just waiting to go.
[00:07:33] And I was like, wow. I know what he's going to do to me. Like, I'll be asleep for it. Um, I got my second cochlear implant out here in California, um, after I started working. So there were about three years in between my two cochlear implants. Um, and it's just been a wonderful journey. I've had definitely, definitely had ups and downs.
[00:07:57] It's very scary when you have a sudden hearing loss. Uh, I grew up afraid of hitting my head and, um, Just being challenged every single time, emotionally, mentally, physically, and needing to dig deep and figure out what am I going to do? What do I want? And then how do I get there? So that was kind of how that's my.
[00:08:20] Like my little hearing, hearing journey story. Wow. I have so many questions. I don't even know where to start. So I'm going to like back up a little bit. And so you grew up right down the street from me. I'm I'm older than you. So we never, crossed paths.. One thing, I know I'm older than you. And, uh, and I grew up in Stow and you grew up in Kent, so we were next door, like rivals.
[00:08:52] Uh, what was your experience like going through mainstream school? Do you have any things that stand out that listeners might learn from. A few things stand out. Um, I had a sudden at my hearing dropped in first grade, third grade, fifth grade, and then senior year of college, the first drop first grade, I, he said that I told my teacher, Hey, my hearing aids don't work.
[00:09:24] And my dad remembers bringing new batteries to school and they still didn't work. Um, I don't remember which time, but my mom said that she felt like it was the end of her world. You know, she didn't, she didn't have anybody. She didn't have the community that you talk about, not until she met Mrs. Lim and Dr.
[00:09:45] Flexer. Um, she. She literally didn't know what to do. So the options were, you know, you need to do sign language, which is fine. Um, we just didn't have that much of a community, um, around us. And I also, I already had so much spoken language at age three to four, you know, I'm sprouting out sentences. I'm talking to everybody who would listen to me.
[00:10:13] Um, but I remember my first grade teacher. When my hearing dropped my mom went to school with me. Like she sat in the classroom next to me and helped me with whatever lesson we were doing. And my first grade teacher, who I’m am still friends with Mrs. Johnson taught my mom, Mrs. Hu you need to go home. She's going
[00:10:38] She's going to do okay. She's going to be just fine. Um, That's one thing that sticks out to me when I lost my hearing again, senior year of college, that might've been the most devastating for me. And it was because I. Had a plan I was studying for LSAT. I wanted to go to law school, my hearing dropped and I was like, how am I going to hear in the courtroom?
[00:11:12] How am I going to hear lectures? Um, and my mom was sitting next to me in the waiting room at Cleveland clinic, waiting for hearing tests. She looked over and she said, you might be a good audiologist. Have you ever thought about that? Hmm. And she knew at that time, I was like, I think I'm going to go to law school.
[00:11:30] I don't know if I, I just didn't know what my, I had a plan, but I wasn't sure. Sure. If it was a short plan, if that makes sense. And, um, I emailed Dr. Flexer probably that day. I said, what do I need to do again? The audiologist, can I do this? Luckily, my prerequisites of pre-med biology, anatomy that transferred over, um, and she wrote a recommendation to the admissions board and I got into grad school then.
[00:12:03] Right. Luckily like, I mean, it was kind of like a fate or kismet happening. Um, but it just goes to tell me that from tragedy or from darkness can come amazing opportunities and doors open. You just need to open up your eyes to see that they are there for you. With my hearing loss, there have definitely been ups and downs.
[00:12:30] And I think it was community, it was positive attitude, positive mindset. My parents are very, um, where's the silver lining type of people. And that if, if that's the only thing that I had I think is what fueled me to kind of be here where I am today, because my job, I really feel like. Is a place where my whole entire life, all of my experiences are optimized and utilized, um, with the children and the parents and the families that I work with.
[00:13:10] I'm sure you feel the same way with your job. I do. I do. And it's hard to see that sometimes. And I think reflecting on all of those moments really makes. Yeah, by the audiologists. And you think about those things and then you implement programs or you implement different opportunities within your practice for families because and children, because it was built out of your own need, right?
[00:13:40] Your own need for support or. Whatever you are having to face too. So what of questions? Well, what do you think was your greatest challenge? And I w do you think it was your senior year? That was definitely the most challenging situation. Um, but I think one of the greatest challenges actually stems from.
[00:14:09] My parents didn't treat me any differently than my brother. Like maybe because maybe more protective because I was a girl or something, but, um, in terms of be a good person, get good grades, you know, be respectful of your elders. Um, they had the same standards as a human being for me then as my brother.
[00:14:34] And I think that. That was the best thing that they could have done for me, because it kept me motivated. It showed me you can accomplish anything that you put your mind to. There isn't anything wrong with you. But on the flip side of that, I didn't know. I didn't, I didn't know. I didn't have the words and the safe space to know that I was different.
[00:15:17] I knew that I was different, but I didn't know how, like, um, like I knew I had hearing loss and I knew nobody else had hearing aids besides me and one friend Stacy and a mutual friend. Um, so I had. Like a twist in my brain or something that wasn't acknowledged, if that makes sense. Um, and it was challenging for me because I think I did choose to define myself with hearing aids or hearing loss.
[00:15:52] And, um, I felt very alone. I felt like I was the only one. Navigating. Macgyvering my way through school. Uh, listening situations, church, um, listening to my brother within a youth symphony orchestra, listening to that. And I didn't know that it could sound different until I got my cochlear implant. I didn't know that you could hear individual stringed instruments or horned instruments.
[00:16:27] And I was like, Wow. So I remember back to his concerts, it was just loud, like bump up. Um, you know, and I don't think I developed a music appreciation until later on, so I don't know. I'm getting back to the question. I don't know what label or what specific challenge it is except to call it. I. Wasn't sure who I was.
[00:17:00] Yeah. And that's hard. I think throughout, especially that adolescent teenage years, when every teenager is trying to figure out who they are, and then you add on hearing loss on top of it and being the one and only, and thinking, wait, why am I the only one going through this? And I don't know anybody else who's going through this that I found that.
[00:17:25] To be hard as well, going through. Did you haven't any mentors or role models or anything. So my first model, who I just interviewed too, was I'm Karen MacGiver-Lux, and she is an audiologist, but I met her. Probably going into my right before I started my freshman year of college. So going through it was later, it was a lot only those developing years of trying to figure out who you are, what you are.
[00:18:00] Um, what to say when people ask, we all had to, we, you and I both had to come up with it on our own. Yeah. I had some crazy thing I would say, Oh, their radios on my ears are in the winter, their ear warmers. You know, I mean, now we have Bluetooth devices nowadays, so people could believe you, but yeah, they can be, I got wearables.
[00:18:26] I'm just wearing my wearables. So yeah, it was. I think the first time I realized that I was truly different as like nobody else that I was friends with had any hearing loss was when I went to a sleepover and. It was one of my first sleepovers. And I remember there being probably five or six girls or whatever, and they turned the lights off and they're still talking.
[00:18:56] And I was like, what people can hear in the dark. It was kind of this light bulb that went off and I thought, Oh, I can't do the same things that everybody else can do in the same way. Yeah. So that was kinda my light bulb. I remember like then taking a flashlight from now on and like putting it under people's mouth during, when they would turn the lights off.
[00:19:26] So I thought I could see them. Are you afraid of the dark, that, that show where they hold them?
[00:19:35] Remember when sleepover? Um, we all went to bed. And I woke up the entire room of like 10 girls, because I rolled over on the taboo buzzer. And you didn't know, I checked my ears, my hearing aids off I, this buzzer is going to be waking up everybody. And I'm just like asleep.
[00:20:00] But also like playing games, like telephone were terrible that you did not want me anywhere in that line because I would completely change up that message. Right. Either you want me to number one, the first one to start it up or you don't want me in the game? Yes. That situation were very stressful. And I.
[00:20:27] Like what you just said. I didn't have the words to explain to my friends why this game isn't going to be good for us to play right now. I tried to just, I guess, muddle through whatever, you know, plow with the way where it, and try to fit in instead of. I'm saying something different. I feel like you're very similar with, to me though, you have a very positive mindset.
[00:20:54] Like, do you feel like I've been asking people, do you feel like it's just a personality trait or what was that that helped you And I, you know, Not be so down about it or not be so negative. What do you think? Well, when you described yourself, as far as, you know, being identified about the same time, I was about four and I was a pretty outgoing person, even though nobody could understand what I was saying.
[00:21:29] Cause I think I was born with, with the hearing loss. So my speech was not that great, but I always. I was always the one going up to strangers and talking to them. Um, so my brother who was little younger than me, he was the shy one. So he was, yeah. And he has normal hearing. So I don't know if it's that.
[00:21:53] Are you firstborn? No, I'm the baby. They thought my brother had hearing loss because I was talking and yeah.
[00:22:06] So I think it is part personality trait. I think it is part of what you said. My parents were the same way. Like I was expected to get good grades and, you know, do my best and be nice to people and participate in activities. And I love that I was involved in sports and have that, you know, friendship community there.
[00:22:32] And, you know, I, so I never. Used my hearing loss as a crutch, I didn't know to even do that. So I think that's the positive of it. But I agree with you. I didn't know anything about my hearing loss, except that I had hearing loss and I had to wear hearing aids. And that was about the most I knew about.
[00:22:58] About it. So, yeah, that's why I feel like being an audiologist and you probably feel this too, what we can do to empower a kid to know more about why they have a hearing loss, why they have communication struggles. How do I navigate those in a positive way is really important for kids. And to have that connection with someone, Oh, connection is so big and community.
[00:23:26] One thing that I do tell parents, um, often is that it's harder to acquire a hearing loss than grow up with it. Because we don't know better when you're older and you're used to things sounding the way they do and things, something happened, either your hearing loss, hearing deteriorates, or you have a sudden hearing loss, you miss what you had.
[00:23:50] You keep looking back instead of forward. Whereas children, I think one of my professors said, um, Does a three legged is a three legged dog any less happy than a four legged one? No, like you see them at a park and they're still going crazy after that ball. Right? Um, it was just a fun analogy to hear and say, yeah, like, of course, when you're young, all you want is snacks and toys and games, and to hang out with your family and everything is provided for you, you're taken care of.
[00:24:30] So you don't know any better. Versus when you're an adult and you acquire it later, I think it's much more difficult, um, that you don't have that safety net of people surrounding you taking care of you, which is why when we're older community is just so much more important. Especially now with COVID, it's really hard.
[00:24:52] And that is yeah. That I I'm ready to be done with, but I guess, so you didn't have any mentors growing up, like going through Kent then like going through your grade school or middle school or high school? Mrs. Lim Stacy's moms. My mom and I at mama me at a library one day. And, um, I think she saw my hearing aids and she told my mom, your daughter has language continue with that.
[00:25:23] Get into speech therapy, um, utilize what she already has get in touch with. I'm not sure if she connected us with Dr. Flexer, but, um, I got my first pair of hearing aids Uh, A, I think a general audiology office and then switched over to U of Akron with, um, Dr. Flexer. Um, and she
[00:25:51] Stacy and I became family friends. So my mom and hers are still close friends to this day. But I feel like we never talked about hearing loss, which we didn't, I don't feel like we need to, we just need people around us that, um, have gone through or understand the similar situations. But looking back, like that challenge that you asked me about, I wonder if we ever, you know, did a few exercises of practicing explaining what my hearing aid was or what a hearing loss was.
[00:26:26] That would have prepared us more for school situations, um, conversations or how to be an advocate for ourselves. Dr. Flexer was very good at, um, empowering me, you know, uh, telling me what I needed, what I needed to do. Um, But having other peers I bet would have helped. So that's kind of how I, why I started mamahuhears is on Instagram because I'm able to, what I love about my job is I'm able to give parents hope and.
[00:27:05] An open window just by me being me. Um, more times than I can count, parents have looked at me and said, Oh my gosh, my kid's going to be okay. And I said, absolutely, she's going to be okay. Your child is still perfect. They can still do whatever they decide they want to do. They can achieve anything. Um, But when it it's, I want to be able to give children, adults, anybody, the words and what to do or say so that, um, In, in difficult situations that they're uncomfortable.
[00:27:45] If they don't have a community, if they don't have a friend who's been through it before, you know how like mothers, they claim to their mama tribes, because they're not the first person in the world to have a baby. Right. And you know, how do I potty train? How do I, how do I do, how do I handle a terrible two tantrums?
[00:28:07] You ask somebody else. You say, what, what worked for you? What worked, what didn't work for you, you listen to stories and you navigate and you take in, take what works for you and what didn't work for you. You toss it away. Um, but same with hearing loss. That's what, that's why I created my account. I really wanted to have a safe space and, uh, to provide.
[00:28:28] Dialogue or tools to help people with hearing loss or moms with kids, with hearing loss, um, navigate that journey because it really is a journey. It's not just a one-time situation. It's the life. It's the life. It's the lifetime. It's the lifestyle, right? Yeah. Your kids are always going to be your kids, right.
[00:28:47] No matter how old or young they are. So you're always going to be a parent to them and how you support them. Yeah. And I would say just as a side note, going through that, the cochlear implant process just a year and a half ago, not even, not really. I guess brought back that need for, to have those peer connections who were different, you know, people who have already gone through the process.
[00:29:20] I mean, and like what you said you were going, you were learning about it in school, right? I mean, as professionals, we know the process and. An ENT can say, I'm the greatest surgeon in the world and your mapping audiologist can say this, but there were questions that only someone that has gone through it can answer.
[00:29:43] And that was my safety net and really what I relied heavily on going through the pre cochlear implants. Thought process and then going through the process. And then even now I still have questions about what I should be doing and or what it sounded like to somebody else. Yes. And to put ourselves in a patient role.
[00:30:11] Oh, I know. I was like, Oh, I'm on the other side of the table. Now I know how my families feel on the other side of the table. And I know this information and they are hearing this for the first time. So it really puts in perspective, all that emotional support that is so needed along the way. Or even the mental and emotional thoughts that you have in the booth when you're being tested, like, you know what they're doing on the other side, but you also need to not be the doctor and let them look at you objectively.
[00:30:51] Which is really hard, isn't it, it's so hard for me to be that patient and when it comes to myself, but I wanted to ask you more and you brought up mamahuhears. And just tell me more about some of the stories that you shared. And you said you got, it started because of your own experience of having kids.
[00:31:17] So share a little bit more about that. Yeah. So, um, I was on maternity leave and I actually missed connecting with my patients. Um, so. And something that I've also never really been able to do is be friends with my w be friends with people, with hearing loss, that community that you speak about. I didn't have it really until I started this account.
[00:31:43] Um, because I was usually their clinician. I was like, well, HIPAA says, no, sorry, I can't be friends with you. Um, Because some, a lot of moms have asked me, you know, can we exchange numbers? I feel like we would hang out in real life. And as much that I wanted to, I just couldn't. Um, with Instagram, I'm able to reach out to more people.
[00:32:08] I feel like I'm able to help more people this way, whether it be just by an infographic. Um, about audiology information or, uh, things, life hacks that I've done, it started with. Um, how do you wake up at night when your baby's cry? And, um, a lot of times I would say, well, my husband can hear, he can, he can make me up, but he travels a lot for work.
[00:32:35] So what am I going to do? Um, What I do is I have my baby monitor. I have a baby monitor next to a sound alert, and that sends a signal to a receiver. That's hooked up to my alarm clock and my alarm clock. Um, it blinks a light as well as shakes. Uh, Has a shaker that I put underneath my mattress. I put it underneath my mattress or my pillow, um, depending on the situation.
[00:33:03] Now it's under my pillow because if I put underneath my mattress, my husband would wake up too. Got it. I did with that. And I just realized the experiences, experiences that I've had can help other people. And. Like we talked about young kids. They don't know any better. I didn't, I don't really know any better.
[00:33:29] What I do is different from somebody else until people started pointing it out to me. Hey, what do you do? You know, can you drive. Yes, I can drive. And I'm actually much more observant of my surroundings because I'm used to needing visual cues to survive. Um, and it's been about a year now since I've had my Instagram and my goodness, the community, the question that come up, the, um, the.
[00:34:01] The messages that are full of gratitude from moms or followers it just really fills my heart. And I know that I'm making an impact. I'm helping moms of kids with hearing loss, and I'm helping people with hearing loss that might be struggling in their journey, or just need to know, Oh, somebody else is out there.
[00:34:23] And she hates that situation too. Doesn't like the word “nevermind”. Um, or. Has, you know, is trying to figure out how to wake up from a nap or do they wear their devices to sleep all of those situations. So it's. I'm going to continue it. I have to, um, it fills my heart because I'm able to connect with people.
[00:34:47] I get ideas from them all the time too. And it just gives me a sense of belonging, you know, like you and I, we're not, um, completely submersed in the capital D deaf community. I didn't grow up around it at all. Um, but, but we do have hearing loss. But we can still hear and speak. So, you know, we're in between.
[00:35:12] And, um, I'm actually in the process of putting together a video of in-betweeners and, um, we're a growing population that needs to be heard, needs to be recognized. And, um, we're there, we exist and we're honestly, we are, uh, Huge group of bad ass people. Right. I love it. Yeah. Well, and I think that's so true because you know, the Deaf community, which is awesome that they have this amazing community and it's very, I think visible, it's visible and people see, you know, the sign language and see ASL and you see it on TV.
[00:35:54] You see it everywhere. And so where that is invisible in between where the like, Oh, she's got a cochlear implant. She has a hearing aid. She must be okay. And, but we still have the same, you know, we still have struggles of communication and, um, barriers that we need to figure out how to navigate on a daily basis and having that community, having that community really helps you get through that.
[00:36:28] So, one question, what is your, um, Do you have a post to something that got the most attention on your Instagram that you posted? For me, it was the invisible load of hearing loss or invisible burden of hearing loss. Um, I think it really hit a tone or a button, um, for people because. It's just a picture of, um, the load or the weight, the mental weight that we have on our shoulders.
[00:37:01] We have extra appointments. We have, uh, electronic devices that breakdown. sometimes. we have difficulty on telephone. Now we have difficulty with mask communication. I look at listening. Fatigue is a huge one. All of those things. Um, I think. Or the post in particular, I think gives my audience or people with hearing loss a means to explain it.
[00:37:33] And they don't have to come up with the words on their own. A lot of my followers have shared it with their family or they posted it in the kitchen. Like they print it out and put it on the refrigerator, just an FYI, like. I am carrying all of these things that you don't see. So that one was well received and, um, I've been translating it to different languages as in Korean and Spanish and Italian and French.
[00:38:01] My mom is doing in Chinese right now. Um, so that one just really struck a chord because. It gave people the words and a tool to be able to say, Hey, this is what, and I'm going through. Can you, could you look at it for me? And then the people that were reading it, who might've had normal hearing, or like, Oh my gosh, like I get it now I get why you're tired.
[00:38:26] You know, you're, you, weren't angry or frustrated directly at me. If you have a lot of weight on your shoulders, um, growing up and living with hearing loss. So. Yeah, we live in a very noisy auditory world that we have to take in so much information. And, and especially now we can't have one-on-one conversations with everybody or anybody anytime you want.
[00:38:51] Yeah. So I. Didn't ask you that you want to share with us because I think your story is amazing. Your Instagram is amazing. I I definitely have to get the the link for all of our listeners, and we'll put it at the end of the show notes. So people can link right to your Instagram account and follow you.
[00:39:17] I, I. It's going to be great for people, but is there anything I didn't ask you that you want to share? I feel like you and I could talk for hours on end, but, um, my Instagram is mama.hu.hears. I also just, um, opened up my website is mamahuhears.com. Um, that. So then people who aren't on social media can find me and, you know, take a look at some things there.
[00:39:49] I'm trying to link a blog on there, but, um, that is just a work in progress. And hopefully I'm, I'm in the works of a children's book because I really want to give children the words and the scenarios and a safe space that I didn't have when I was younger. So stay tuned for that. Yay. Well, Michelle, I just want to say thank you again for coming and the, empowEAR Audiology Podcast.
[00:40:15] It was a great conversation and I'm sure all of our listeners are going to really benefit from having your resources, whether they're professional or a parent or an individual with hearing loss, we need to have that peer. To peer connection and to learn from each other. So I'm so grateful for everything that you have done for our community, and I cannot wait to connect further and, and hopefully do something together in the future.
[00:40:43] Yes, please. Thank you, Carrie. Thank you. This has been a production of the 3C Digital Media Network.

Episode 15: empowEAR Audiology - Dr. Ryan McCreary

[00:00:00] Welcome to episode 15 of empowEAR audiology with Dr. Carrie Spangler.
[00:00:16] Welcome to the empower your ideology podcast, which is part of the 3C Digital Media Network. My name is Dr. Carrie Spangler, and I am your host. I am a passionate audiologist with a lifelong journey of living with hearing challenges in this vibrant hearing world. This podcast is for professionals, parents, individuals with hearing challenges and those who want to be inspired.
[00:00:45] Thank you for listening, and I hope you will subscribe, invite others. Some listen and leave me a positive review. I also wanted to invite all of you to visit and engage in the conversation on the empowEAR Facebook group. transcripts for each episode can be found at. Www three, the number 3Cdigitalmedianetwork.com under the empower your podcast tab.
[00:01:18] Now let's get started with today's episode today. I have a special guest, Dr. Ryan McCreary. He is the director of research at Boys Town National research task hospital where he’s the director of the audibility perception and cognition lab, and director of the Center for Audiology. Dr. McCreary completed his PhD in 2011 at the University of Nebraska where he researched bottom-up and top-down processing of auditory information in children.
[00:01:51] His lab's current research is focused on various aspects of hearing, hearing amplification, language processing, and language development. Dr. McCreary’s research has contributed to our understanding of the importance of auditory experiences on language and sensory development. Findings from Dr. McCreary's research is directly related to clinical outcomes and have led to optimize clinical protocols for fitting hearing aid and children with hearing loss.
[00:02:21] Dr. McCreary has authored 56 peer-reviewed publications and has numerous research collaborations. He has a regular speaker at scientific and clinical meetings and is an active member of the American speech-language-hearing association. Because of his significant scientific and professional contributions.
[00:02:41] Dr. McCreary was recognized in 2020 with a prestigious ASHA fellowship award. Congratulations! Ryan is going to be presenting at the American Academy of audiology's. Marion Downs, lecturer and pediatric audiology on April 15th, 2021, virtually. And, um, thank you Ryan. I am for being on the podcast today.
[00:03:07] What a, uh, incredible resume that you have, and I'm so excited to have you on this podcast today. Oh, it's so great to be here. Um, I think I told you that I'm like a huge fan of your podcast, so it's really fun to be on here and to get to talk to you. Cause I always enjoy talking with you. Well, I always enjoy talking with you too.
[00:03:27] And I was trying to remember when we first met. Yeah. Thinking about this and um, I think it was an educational audiology association conference. Um, and it might've
been. Even when, uh, the educational audiology association had their summer conference in conjunction with the ASHA schools conference. Oh, I think you're right.
[00:03:48] It was, that was a lot of years ago. Um, but yeah, I, and then you and I have stayed in contact at, at EAA and ASHA meetings and, and things since then. So it's, and it's always good to see you. It's always good to see you. And I hope someday we'll be able to see each other in person again. I know won't, that'd be awesome when we can have actual meetings again, uh, even the most introverted members of our.
[00:04:13] Science team here are looking forward to going to meetings coming up. So, and I feel the same way. Yeah. It really brings you can relate to people a lot better when we can actually see them. So I always like to ask my podcast, guests, how they actually got started in the field of audiology. I feel like everyone has such a different journey of how they got here.
[00:04:39] Yeah, mine's kind of weird. It's a little, uh, indirect, but I, uh, when I was in high school, my high school had a program called community resource training and it was basically a way for students in my high school when they were juniors or seniors to identify. A field that they wanted to work in. Um, and the way that my schedule worked out, I had the CRT class at the very last part of the day.
[00:05:07] And what that meant was that by the time I went to class the first week, when we got to pick what our assignments were. Um, all of the other options that I had in my small town were already taken. And so the teacher of the class said, well, now you have to take a test to figure out what profession that you're going to end up in.
[00:05:26] And so I took this vocational aptitude test and, you know, it basically listed off all these things. That would be interesting based on what my interests were and what I wanted to do. Uh, and audiology and speech language pathology was like one of the higher. Rated things along with some really strange ones that, that I won't mention.
[00:05:46] But, um, so I got assigned to work with an audiologist and a speech language pathologist. He was dually certified and he was a school based, um, SLP and audiologist. And he worked with kids in the afternoons when I had class, um, that had hearing loss and it was the first exposure that I had to, uh, to. Seeing someone work with kids who are deaf and hard of hearing and see what a huge difference it could make.
[00:06:13] And I was really into it. Like at first I thought, I don't know, I'm not really going to be interested in this. And it was fascinating. And I've been fascinated with helping people who are deaf and hard of hearing ever since, because I just feel like it's something that you can do that makes such a huge difference.
[00:06:30] So I went to the University of Northern Colorado as an undergrad, thinking that I would. Um, be dually certified and be a speech-language pathologist and be an audiologist. And then I met Dr. Steve Ackley, who was an audiologist, uh, in a faculty member there. And, uh, he really turned me on to audiology, but I've always had that speech-language pathology sort of undercurrent in my, uh, in my life.
[00:06:55] And it's funny because now that I'm doing research, it's, you know, it's really, I, as you mentioned, I'm doing research, that's sort of right at the intersection between audiology and speech-language pathology. And I love it. Yeah. I hear a lot of people who audiology who work with kids. So they had a hard time deciding whether they wanted to go into audiology speech because they wanted to work with kids with hearing loss.
[00:07:19] And there was a lot of intersection and I think that's amazing, but your high school have gotten that experience. And it just makes me think sometimes as an educational audiologists, we go in and do a presentation about what we do. And you never know who you might impact. Right. Absolutely. Yeah. I mean, it's one of those things where, when we talk about trying to get people interested in the field, that's always one of the first things that obviously comes to my mind because of my personal experience.
[00:07:45] But I do think it's a really pivotal time before you go to college and you haven't really decided what you want to do. Um, can you know, that, that, that speech-language pathologists and audiologists that I work with, uh, he was really, um, You know, dedicated to what he was doing and really enjoyed it. Um, and, uh, you know, I don't know that he even knows that he has had that impact on my career because I don't, I don't know.
[00:08:12] I haven't kept in touch with them. So I have no idea. Well, maybe he'll listen to the podcast and then he'll find out. Yeah, John Calper. If you're listening to this podcast, I hope you know that you're responsible for all of this. So that's awesome. So you went at Northern Colorado, for undergrad. And then where did you go for your graduate work?
[00:08:36] Yeah. So I finished my undergrad at Northern Colorado and I loved Northern Colorado, but, um, I was applying for both PhD and masters in audiology programs. And, um, I made a decision that I was just going to go and get my clinical master's degree, uh, and work for a little while rather than going straight into a PhD program.
[00:08:55] So when it came down to it, um, I decided that I was going to go to the University of Nebraska at Lincoln. I had some family in this area. Um, And so I thought it'd be really great to get out of Colorado and go to Nebraska for a little while. And then, um, so I did my masters, yeah. Audiology at the University of Nebraska Lincoln.
[00:09:14] And then in my last semester of on-campus at the University of Nebraska, I got a clinical placement at Boystown, which was a real competitive, um, difficult place to get a placement. But I was interested in Pediatrics and BoysTown obviously well known for pediatrics. And so it's funny because the, um, audiologist who is now our director of the clinic in the audiology program was the woman who hired me, um, as a student.
[00:09:42] So, um, it's fun to, to joke around with her about the fact that, um, she ended up hiring her future boss. And, um, it, I learned so much, uh, during that. A process that I then applied to do my clinical fellowship at Boystown. Um, and I worked as a clinical audiologist, um, in Omaha and then moved to Seattle for a few years and then came back to Omaha and, uh, in 2004.
[00:10:06] And I'd been at Boystown since 2004, so. Wow. Yeah. Yeah. That's, that's awesome though. You've made a big impact and. I know you said you did your masters and your PhD, but audiology as a whole needs, more researchers and PhD, um, experience or, you know, uh, individuals out there. So what is your experience and what advice would you have for maybe an audiologist who is out there who might be thinking about getting that PhD?
[00:10:40] So my advice would be to work for a little while. Um, if you, if you can, the hard part about working for a while and your professors will always advise you not to do this, um, is that you have like a nice job and you're, you're earning a living and then you go back to school and then you're not earning a living as much anymore.
[00:10:59] Um, and so that's really challenging, but working in the clinic before I went back, uh, for my PhD was really. Really good for me, because I think the research questions that I have and the, the areas that I'm interested in are really heavily influenced by my clinical experiences, working as an audiologist, working with families.
[00:11:20] And I think it just gave me a lot of perspective on. What families and, and people who are deaf and hard of hearing think are important outcomes. And I think that was really shaped by those experiences. And I don't think that it would be the same if I hadn't had that clinical experience. So I didn't go back for my PhD until I was, I had been practicing for like seven years.
[00:11:42] Um, and it was hard. Um, but my advice would be if you want to do research and that's what you're really passionate about, then the PhD is the right. Degree in the right way to go because it's, uh, you know, it, it gives you a whole different kind of training. Uh, that a clinic that my clinical background didn't give me so training in statistics and how
to design studies.
[00:12:04] And, um, it's, it's a really complementary skillset and, and I love what I do right now, but there are times that I miss seeing patients in the clinic. Yeah. The experiential learning part was very beneficial to your PhD. And so another question, kind of a side note, would you advise. Audiologist who had already had the AuD to go get their PhD in audiology or another related field.
[00:12:34] That's a great question. So my own PhD is in this weird sort of multidisciplinary category that the university of Nebraska offered called human sciences. So it allowed me to focus on, um, Some aspects of audiology. So I did take some coursework in the audiology program, but it also opened up the opportunity for me to take coursework in experimental psychology, in educational psychology development, um, biology, engineering.
[00:13:01] So. I was able to really get a sort of cross-disciplinary PhD experience where the research questions that I have were not something that I was going to learn about in my and taking more audiology classes at that point. And so, um, I, I wouldn't recommend that anyone limit themselves to an audiology PhD, if they're already an audiologist to think about other fields, um, where you might be able to.
[00:13:30] Apply neuroscience is another area that I think right now in particular, um, would be a great crossover for a person with a background in audiology because, um, there are just so few people doing neuroscience research, um, in the auditory system. I mean, there's
some great people in our field who are doing, doing that work, but compared to other fields where, um, like the visual system where there's.
[00:13:54] You know, uh, entire conferences that are bigger than many of our own conferences that are on visual research. We just don't have the same level of cross-pollination and the auditory system. And so you find that your expertise is really valued by other scientists because there's just not as many of us in the auditory field.
[00:14:12] Wow. So I think, yeah, that's great advice for someone that might be pursuing the PhD to kind of think about what are they interested, invested in and kind of look at a PhD in that area to, uh, to cross-pollinate basically, right. Know, knowledge. Um, so one of the things that I really admire about you and your research is the fact that I think you have that clinical experiential learning.
[00:14:39] Piece that you have, and you bring that into your research world, but everyday kind of application for people like me who are out there on the field, like we can take it research and, and know what it is, um, and apply it. So I think. You know, that's such a strength of yours to be able to effectively communicate all of that and keep everybody engaged in that.
[00:15:01] But can you tell us a little bit more about the current research that you are doing that focuses on pediatrics and advancing that field? Yeah, well, first of all, thank you. That's, that's the biggest compliment I feel like I can get is when people feel like the work that we do is useful because, um, I didn't become a researcher, uh, for any other reason than wanting to try to help, uh, clinicians and help children and families.
[00:15:28] And, and being able to do that with your work is extremely important to me. And, um, there've been some really interesting studies that I've been a part of that weren't. As fulfilling on the clinical side. And whenever that happens to me, I always find myself trying to go back and find something that I can work on that that does have that clinical link.
[00:15:49] So the big projects that we're working on right now, we have. We have several that were, that were involved in. So I would say the first one is an extension of a project that we've been working on for the last seven years. Um, and the basis of that is to try to look, to see, you know, we take. Uh, children with hearing aids and we do an audiogram and we fit those hearing aids based on the audiogram.
[00:16:13] But is there a way that we can customize that a little bit more rather than just the audiogram? Because as you know, and, uh, as many of your listeners probably know, uh, you can have children or adults who have the same audiogram, but have very different experiences with their hearing aids. And to me, that's always been fascinating, um, that, and I think for some people it's frustrating because.
[00:16:37] Uh, you know, it would be great if the ear were like the eye and you just put glasses on and everything were kind of resolved. But to me, it's sort of an interesting, um, problem. And so we're trying to figure out, are there ways that we can customize amplification to better, you know, uh, meet the needs of the individual listener rather than using the same audiogram and the same prescription for all listeners?
[00:17:00] So we have a big NIH grant that's starting its third year, this summer. Um, and that is our goal is to try to figure out what are the individual factors that are gonna. Predict success with hearing aids for kids. And, uh, and that's just, it's such an exciting project. And then the other big one that we have going on right now is called fast track, which is an acronym, uh, and that stands for finding appropriate solutions for treating reduced audibility in kids.
[00:17:28] Wow. A mouthful. Um, And that is a really cool collaboration with the University of Iowa, Boston children's hospital. Um, Arkansas children's hospital in Washington University in St. Louis, um, where we are, uh, essentially trying to develop some new clinical tools that would be useful for audiologists in the diagnosis and treatment for kids with mild bilateral hearing loss.
[00:17:56] We know that children with mild bilateral hearing loss often. Experience poor outcomes than we would expect, even though we described their hearing loss as being mild. We know that it's not, and we've known that for decades. Um, but we still don't have clinical tools that are really tailored for the specific challenges that kids with mild bilateral hearing loss face.
[00:18:18] And so we're developing a sort of suite of tests that an audiologist could do in a clinical setting. That would help to identify which kids with mild hearing loss are going to need more support and intervention, which ones are going to, um, be able to do well, um, with, with different kinds of support. So it's an exciting project and that one just started, um, last summer.
[00:18:39] And so we've got several years left. Um, on that one. And we're in that early development phase where we're still developing the software and things for those tools. Um, and then what we'll do is test them in the laboratory this year. And the next year we are, those tools will get deployed to pediatric audiology clinics for them, uh, for audiologists to use and tell us what works and what doesn't work.
[00:19:00] So it's cool because it's, it's a collaboration that starts with the lab, and then it's going to be out in the clinic. Um, and I, I really enjoy those kinds of projects because you're taking something that's very scientific, and then you're going to put it out. And the audiologists and the clinicians who are going to work with it are going to tell you everything that's wrong with it.
[00:19:18] And that's what we want, because that's how it makes things better. Yeah. And I, I'm glad you're doing that because as an educational audiologist, I feel like a mild bilateral kids end up being our hardest kids to, to work with and for reasons. And maybe, and I'm sure you already know this, but this is my just experiences one sometimes if the parents, um, because they see their kids in a home environment and they seem to be doing fine and they don't wear their hearing aids at home because they don't seem to be needing them at home.
[00:19:54] And they're missing out on a lot of incidental learning. And then again at school, um, they, they get. Enough to look like they're doing okay. But then there are these gaps that show up later on. People are attributing it to other things. Honestly, I think it's the lack of intervention and consistent intervention that happened early on.
[00:20:23] I completely agree with you. And I want to know who the person is that decided to call that category of hearing loss mild, because they have done a, such a huge disservice, um, because there's nothing mild about it. Um, you know, you described something as mild and people sort of think it's innocuous or not a problem.
[00:20:42] And we know that children with mild hearing loss, um, are at risk for all kinds of language delays. And in some of our recent research studies, We're finding that kids with moderate hearing loss are actually doing better than the kids with mild hearing loss, because they're getting more consistent intervention.
[00:20:58] And that finding that we had in a collaboration that I had with, um, Dr. Beth Walker from the University of Iowa, who was recently on your podcast, one of my favorite episodes, but, um, but. What we found was that these kids with mild hearing loss were doing more poorly than the kids with moderate degrees of hearing loss.
[00:21:18] And when we looked at why it was because they weren't getting the same intervention, the kids weren't wearing their hearing aids as much. And I think to some degree, they're not wearing their hearing needs as much because they don't need to. Right. They can hear in certain situations without their amplification.
[00:21:33] And so the thought process is if they can get by without it, then we should let them. But the problem, as you mentioned already, Is that they're missing out on all of these wonderful opportunities for incidental learning. Um, we know that they need that auditory stimulation and that auditory experience, um, to sort of develop the listening skills that they're gonna need to listen in classrooms and in social situations of restaurants and things as they get older.
[00:22:00] And so one of the things that we're trying to do. In the fast track study, but also overall just in our clinics and in the work that we do with families is really talking to families about audibility and trying to get away from that terminology of mild hearing loss, because it just doesn't convey the significance of it.
[00:22:19] And what we're finding when we talk to parents about audibility is that, um, parents are shocked. At the fact that you can have a child who has a mild hearing loss and in an average, conversational listening situation in, in a quiet environment, they're missing half of average speech. And no one thinks that that's mild when you explain it to them that way they think, wow, that's a pretty significant problem.
[00:22:45] And it's a real, um, when you start to. Use that as a tool for the parents instead of the audiogram, which is not very relevant to parents or really anybody other than audiologists, then you know, you start to talk about how it affects] communication and the light bulb goes on and they say, Oh, you know, this makes sense.
[00:23:03] And this is why when he's in the other room, I can't, you know, he doesn't respond. It's not that he's being obstinate. It's that he can't hear me. And it's a really useful
tool for parents. And I think. If we can start to change our terminology and our approach around that, we might have an impact. Um, I don't want to say that we're going to solve the problem because it's complex and there's a lot of things there, but, um, but I do think the way that we described mild hearing loss from the get-go just really works against what we're trying to do.
[00:23:34] And then. We try to play catch up with these kids when they get to school age, and they don't have the skills that they need to function in a classroom. And I'm sure you see that in the work that you do. Oh yeah. And I think the other population that needs to be educated more is even I, um, otolaryngologists.
[00:23:51] Well, they, I still see reports that, Oh, well, just mild. So if you want to do something about it, You can, but if you hear that from a ENT w I, as a parent, I would probably want to be more the glass half full. I don't want to put my kid through this if I don't have to. And so it becomes a challenge from an audiology perspective to educate the parents differently.
[00:24:23] Yeah. And when, when we talk to our otolaryngologists, we hear things like this all the time, you know, and again, I think you have to remember that the, the ENT is that you work with only have about two hours more education in audiology than the parents that you're working with because ENT is spend most of their career learning about surgery.
[00:24:44] And I helped to train the ENT residents in audiology from the University of Nebraska medical center. And I can tell you, they don't get that much. Time on the audiogram or on the impact of hearing loss, you know, they have to sort of learn it through experience. And, uh, and so I think we have to continue to educate them.
[00:25:04] On those things as our research evolves and as we get better tools so that they can be our partners in helping to counsel because they carry a lot of weight with families and their opinions are valued by families and they should be, they're very important part of our team, but it's, it's always hard when we're at cross purposes and they're saying, this is no big deal.
[00:25:25] And we're saying it's totally a big deal. Um, and we have had a couple cases where. In our clinic that have become conversation points with our ENT, because we have kids, there was sort of a mild hearing loss that was presumed to be like a residual conductive problem, not a big deal. And the child went on and got older and older and you know, that conductive loss never really went away.
[00:25:50] And it was actually not conductive. It was sensorineural, but it was mild. And. The child had had tubes. And so there was this, all these contributing things that sort of led to that uncertainty. And so just trying to get everyone on the team, the parents, the physicians, the audiologists, to think about the impact that's going to, I think that's our big challenge.
[00:26:09] Yeah, I agree. So getting back to the hearing aids and study and with that, are there different. Components that you feel are unnecessary and choosing hearing aids and appropriate technology for children. Yeah, I think. That the most important thing. And this is
going to sound weird is connectivity. Um, I think a lot of audiologists think about the technology level first because that's sort of what we've been marketed to think about.
[00:26:43] And indoctrinated to think about is the technology levels of hearing aids, but there's still no compelling evidence that I'm aware of. And I would love to read it if anyone has it, please send it to me that these technology levels that the hearing aid manufacturers use are. Sort of helpful in any way, shape or form.
[00:27:00] We know that the higher-end technology is more automatic and that can be convenient and it can be very useful, but it's not going to improve benefit for an infant, for example. So we really have to think about. Um, the function of the device. And so my biggest priority for kids is finding something that is going to work with all of the technologies that they need, uh, throughout their day and approaching it from that standpoint rather than, you know, how does it look or, you know, uh, I'm very practical.
[00:27:34] So it's like, does the, what's the battery life? Is it durable, you know, is it going to connect to their remote microphone system in the school with seamlessly? Is it going to allow them to talk with their friends? You know, can we make it work with their gaming system at home? If that's something that they want.
[00:27:51] So I like in the audiologist, when I was seeing patients that was always asking those questions about, you know, what, how do we make this work with. Whatever. I mean, cause if you want to get a teenager to wear their hearing aid, it's very hard. But if you can make it work with their X-Box, that that will help.
[00:28:11] Right. Well, it's streaming to YouTube all the time. Exactlyk Yeah. Yeah. I mean, I'm sure you see it all the time in what you do where, uh, you know you, but if you can make it functional, you know, I think that's the key. I mean, I had a parent come to me one time and say, yeah, he will wear his, you know, his. Um, air pod, the Apple earphones all the time.
[00:28:34] And they're, those are big and noticeable. And, and I said, yeah, but people think they're cool and we have to figure out a way to make the hearing aids. Cool. And I'm not cool. So I shouldn't be the person to try to figure out what that is, but they should find someone really cool and ask them, how do we make hearing aids?
[00:28:50] Cool. Because I think that would be, um, you know, That would be a big, a big help there for, for getting people to use their hearing aids, even adults. Right. Well, I think the newer, the Bluetooth capabilities are certainly helping a little bit with the teen population. I've had a couple of teens recently who I I'm really into streaming.
[00:29:16] I'm like my teachers are based out like, you know, saying nodding their head back and forth. They might be listening to music and not to you. Yeah. And you know, I was probably. If I had had that capability when I was a teenager, absolutely. Would have taken advantage of that as well. So, um, you know, but that, uh, that's, that's how I think about it, because again, my goal.
[00:29:42] Is what can we get that this child will be able to use? That's going to help them. It's going to give them the best outcome. And that's, that's really what it boils down to. And
if it's, if it helps them to stream their favorite music or, you know, something that they really enjoy to me, that's the most important thing.
[00:29:58] Yeah. So for parents who happened to be listening, how would you, what advice would you give them to determine if the hearing aids are functioning as expected? I mean, either different red flags that they should be looking at or. Yeah, I think that's a really, I think that's a really great question. And, um, you know, I, I'm always wanting to be very careful about giving other parents advice.
[00:30:24] I have kids, um, and you know, there, there's nothing worse than unsolicited advice from other parents. Right. But I think. Uh, to me, the things that I would look for, um, would be, first of all, I always tell parents to trust your gut. If something doesn't seem right with the way the child's responding, if something seems like it's changed, even if the child says, Hey, everything's fine.
[00:30:49] Um, you know, look into it, check into it, do a listening check. Um, even for an older child where you wouldn't normally as a parent be doing a listening check because you, you know, you're relying on the child to sort of manage the amplification. I think that's really important, uh, because of the number of times that we've had parents.
[00:31:08] Come in and say, I don't think this is working right. It doesn't sound right. And they're absolutely right. We put it on our test box and it's, there's something really subtle wrong with it. Um, I would just tell parents to trust their intuition and, uh, about that and not to write it off as a bad listening day or, you know, I think it's easy to do that.
[00:31:27] Um, but I think parents know how their children are. And they're the best judge of what that level of engagement is. And if there's a change there, then we really need to look into why that is. And, um, fortunately, a lot of the parents that we work with are excellent at that. They, you know, they bring the hearing aids in right away if there's a problem and that's, that's excellent.
[00:31:48] And then the other thing I think is just, um, I just encouraged the parents that we work with to have conversations with their kids about. They're, you know, kind of their hearing story so that they can appreciate their identity and the good things that, and the fun things that came along with raising a child that you know, was deaf or hard of hearing so that they can kind of learn to appreciate that.
[00:32:12] I mean, we all hear those stories about us from our childhood that sort of make us laugh or make us appreciate it. You know, even if we don't remember them, Uh, you know, I just try to encourage, um, a lot of the parents that we work with to have those open conversations with, with their children about it, because I don't know how much, um, you know, that happens.
[00:32:33] And I just think. You know some of the best parent examples that I've seen in my work are parents that have those conversations with their kids and, and they're very engaged. And, and I think it just helps with people's confidence and their identity. And knowing that, you know, there are a lot of positive things and fun things that come along
with, um, with having a hearing loss and, um, you know, it it's, it, it can be really challenging and, and parents can have a lot of complicated feelings around that, but.
[00:33:01] But, um, it, you know, it's just such a, uh, we had, uh, a child who we follow in our clinic who became an Eagle Scout last year. And it was such a cool, I mean, it's cool. Anytime, anyone does enough to become an Eagle scout, but it really, we were really proud and it was just cool to see the family, you know, see this huge accomplishment because, um, this was a child who had a severe to profound hearing loss.
[00:33:26] And, um, you know, and I think in the beginning, the parents were. We're had no experience whatsoever. And then, you know, to have it sort of, to see that was just so awesome. And it's, it's, it's really cool to when, when you can follow a child from the time they're an infant until they become an Eagle scout.
[00:33:42] That's that's pretty neat. Yeah. No, I think your comment about having those open conversation is well-taken, because then. The child or the, you know, doesn't feel like this is something I have to hide. This is something that I can talk about. I can share about when the family sets an example that way too.
[00:34:02] So I think that's powerful. Yeah. And parents enjoy it too. I mean, I think, I think sometimes parents, there's a little bit of a taboo for them to talk about it and, you know, sometimes just, you know, making it lighthearted and fun, um, can really, can really help. You know, it can help to see that. And, and, um, that's something that a friend of mine who is hard of hearing told me a long time ago that his parents did, and I thought that's such a great, you know, thing.
[00:34:28] Um, and so that's, that's just something that we've, that we've adopted and, and talking with our families, because, and that's probably one of the funniest parts of my job is just getting to know, you know, the families and the kids and, and that's. You know, I did see adult patients, uh, when I was an audiologist and I enjoyed working with adults, but working with kids and families is just a lot more rewarding.
[00:34:51] You get to see the kids grow up and, um, And, uh, you, you really feel like you're helping them like all the whole, the whole time, you know, and you see and become an Eagle Scout, right? Yeah. Well, I don't think that anything had anything to do with, with the audiologists, but, um, you know, because the amount of work that's involved with that is, is just unbelievable, but it is cool to see, you know, you, you get to see that compressed timeline that you don't often get to see with.
[00:35:19] What's adult patients that I think is just very rewarding. Yeah, no, I agree. So one other question that I had that kind of relates to the hearing aids and parents and functioning would be, what are some questions that you ask if a child is not making progress with them hearing aids? Yeah, that's a really, really good question because.
[00:35:42] It's really easy in retrospect, to look back and say, why didn't we do something sooner? Um, and so one of the things that we talked to audiologists about is developing consistent functional outcome measures, it's questionnaires or speech recognition or
whatever. And I know the functional listening assessments that educational audiologists do, all of those things, um, should improve over time.
[00:36:09] Up until kids are 12 or 13 years old. So if you have a child who. Is not making progress, even if they're sort of staying at the same level on some of those things. Um, don't ignore that. That's why we know kind of now that we've had some experience, what the sort of trajectory looks like when we fit a hearing aid and the child wears their hearing aid.
[00:36:32] Um, and that is that they should continue to progress in terms of their auditory development. Um, and we should continue to see improvements on those questionnaires and on those. Um, those speech recognition measures and, and we see that until kids are in middle school and some children are on different growth trajectories than other kids.
[00:36:53] But the point is, if you have a child who sort of plateaued, it doesn't seem to be making progress. You don't want to wait for them to fall further behind. So that it's really noticeable. So I just try to. It never hurts to ask the question. Um, and, and so as
audiologists, I think looking at, looking at the big picture, talking with the parents, talking with other professionals, it's so important because I think.
[00:37:17] Kids are complicated and they have a lot of really interesting things going on in their development and audiologists. We only see one little piece of it. Right. But if we open, if we expand how we think about it and talk with other professionals and talk with the parents, I think sometimes we can sometimes as audiologists, we write it off as you know, Oh, they were just having a bad day or, you know, I see this a lot.
[00:37:40] But if they're not making progress and they're not, you know, then we need to investigate why that is. Because I think one of the most inspiring things that we found in our research is that a lot of the kids that we see who are deaf and hard of hearing are reaching levels of performance for language and academics and things that are on par with their peers, with normal hearing.
[00:37:58] So we shouldn't, we shouldn't set the bar low and say, well, you know, the reason that this is happening is because they have a hearing loss. It, we need to really. You know, challenge ourselves to say, is there more that we can be doing? Um, is it hearing aid use? Is it that the hearing aids aren't fitted well, did their ear canal get bigger?
[00:38:19] Because they're growing like, are all of these things are things that we need to track down and investigate, and we just have to sort of be tenacious about it because it's that child's development that's at stake and you can't, you don't want to wait. Till two or three years down the road, and then you find out, Oh, you know, we could've really done something differently to help.
[00:38:39] Um, and sometimes you look into it and it's, you know, it's sort of a mystery, but I always felt like as an audiologist, that was my job was to try to. Figure out how to get the most out of every situation and provide the most support that you can. And if you're going to be doing that, I think we're at a stage for audiologists are doing outcome measures consistently.
[00:39:00] But I think a lot of us aren't sure what to do with that information. And that's where some of our research looking at things over time has been really helpful for me because you do see that these kids have these positive trajectories. And so if you don't see that. Then, um, then that to me is a red flag and that's something that needs to be, you know, investigated with the parents, with the speech language pathologist, maybe with the ENT, um, you know, but taking that team approach.
[00:39:28] Right. Yeah, no, that's good. That's good advice about that. And then one other question I had about hearing aids too, and especially kids is what's the impact of part-time use of hearing aids. I, and this is just kind of a story. You know, I have some families who are like, well, they don't wear their hearing aids over the summer.
[00:39:50] So how does that, how does that impact, like that growth trajectory that you were just talking about? Yeah. So I think that's a really good question. Um, and I think there's sort of right now, there's sort of two competing schools of thought that I think we're, we're trying to help. To see if we can do some research to resolve.
[00:40:13] So there's sort of a group of people in our field who, um, are of the mind that if you're awake, then your hearing aids should be on or your devices should be on. And I understand where that's coming from. Um, but when we look at actual use data from children across the age range, children don't do that.
[00:40:36] Kids take breaks from their hearing aids, um, and. There are a few kids who that we work with who are sort of what we would call all waking hours, kids, and that they wear their devices all waking hours. But I would say that's maybe 10 to 15% of the kids that we work with. And then there are kids who don't wear their hearing aids consistently at all.
[00:40:57] And then there's sort of this group in the middle that they wear their hearing aids 10 to 12 hours a day, which is a lot. And, and they're, they're getting a lot of benefit from their devices. And I think one of the important things is we don't really know what the critical amount of hearing aid use is.
[00:41:14] And so. There's no question that not wearing your hearing needs during the summer is not a good plan, but, but I do think we need to figure out, like, is there a critical amount of hearing aid use that is, you know, that benefits kids and because telling people to wear their hearing aids all day, um, all, all the whole time that they're awake is not, I, I don't think it's reasonable and I don't know that it's actually necessary, um, to do that.
[00:41:44] But it's hard because nuance is something. I think that doesn't get a lot of credibility these days. So you either have to be like extreme one way or extreme the other way. And. What I try to talk to families about is like, I'm not going to be upset if, if the child's wearing the hearing aids 10 to 12 hours a day, especially if they're wearing the hearing aids at times that are really important for communication.
[00:42:06] So I think school is really important. I think family time, time with your family time with your siblings is extremely important. You know, any time it's important to be listening. You know, if, if they go to church or if they're, you know, part of a group where communication's really important, but if the child's at home in their room, reading a book
and they want to take their hearing aids off for a little bit, I don't think that there's any, I think it's reasonable to say, yeah, that's fine.
[00:42:34] Um, they don't need to be wearing their hearing aids when they're in their room. They need a break. That's fine. They're in the room. It would probably be really nice to be able to turn off our ears in those listening situations and just focus on reading a book sometimes. So. I tend to fall somewhere in the middle where, you know, I, it worries me when I talk to families who say, well, they wear their hearing aids at school, but they don't wear them at home because to me you're missing out on so much important communication when that happens or what you just said, where they're wearing the hearing aids during the school year.
[00:43:04] But in the summer, we don't really worry about it. And, um, and I think parents are usually good, a good judge of, of that, but we just want to. If they're not using their hearing aids, we want to keep the amount of time that they're not using them to short sort of reasonable episodes of time. So, you know, a couple hours at night when they're winding down.
[00:43:26] Down. And they just want some time off the air. That's totally reasonable. But if the child is interacting, communicating, those are times that we want them to have their amplification so they can access that communication and get the most out of it. And so that they're not struggling to try to, um, communicate with their family or, you know, it, you know, Or those kinds of things.
[00:43:46] So, so I, I tend to fall somewhere in the middle, but it makes people on both sides mad because some of the parents are saying, well, you know, aren't you saying, it's okay that they're not wearing the hearing aids. And I'm not saying that. And then the people who are all waking hours are saying, why aren't you encouraging to wear them all the time?
[00:44:03] And it's like, well, because I don't know anyone who has hearing aids that does that. So I think at some point we needed to talk to the people. Like adults with hearing loss and say, well, what was your experience? And what do you feel like was helpful? Because I, and I don't know what your personal experience was, but I would guess that you probably didn't, you know, where your hearing aids or, you know, or now your cochlear implant, you don't probably wear it all the time.
[00:44:27] And I think that's probably okay to give yourself a break, you know, and not be in the all waking hours. Um, But what do you think about that? I agree with you for most of it, I would say, you know, at night after. about eight o'clock I'm like I'm done. I've had enough auditory stimulation for my day and I just don't of course, that's the time when my husband wants to talk to me, is that okay?
[00:44:55] Can I have anything off? I'm like, could you have talked to me like three hours before this, that we were together? Uh, but you know, he tends to come up with. conversation after I've decided that it's time to take off all my equipment and then it's
too much of a hassle to get it back on again. So, uh, but I do agree like probably after eight o'clock, like, I just need, I am done for the day.
[00:45:20] I put it on at seven in the morning and I, yeah. So it's a long time, I think, where I struggle sometimes with. with that aspect of it is when families do take it like, Oh, well he takes a break and then that never gets put back on again. So, you know, they come home from school and they take them off. And then there was a lot of conversation that happens, like you said, the dinner table or extra activities that, and they don't put them back on because it is kind of.
[00:45:55] That's a hassle. I need to go get them again and put them back on. I mean, I know it only takes a second, but it's still like, I gotta go back upstairs or wherever I keep them and get them back on my ears again. So just easier to do without, so I think it's finding, it just depends on the family sometimes.
[00:46:15] Yeah, totally agree. And I don't want to make it sound like, I don't think it's important that, um, That we encourage consistent use. I just think our messaging around it is not very nuanced, right? Like, you know, we, we really don't have any evidence that you have to wear your hearing aids, all waking hours to help you.
[00:46:35] Right. And in fact way I'm during critical periods communication to help you. Yeah, the thing I always use. So, you know, anytime you work with families, especially of infants and young children, you, you realize the real challenge here. And that is like getting an infant to wear a hearing aid. And one of the things that I always used to emphasize to families was quality time over quantity of time.
[00:47:01] So. You know, if a family was really struggling with hearing aid use and their child, what I would say is pick the times during the day. That you're engaged and that your child is in communication with you and focus on those first. I don't care if your baby wears the hearing aid during nap time. I really don't.
[00:47:23] I don't think there's any benefit to that. Um, and in fact, it probably helps them sleep better and it probably helps you to relax. If you know that you're not going to walk into the childs crib and see the hearing aid in their mouth. Right. But some of these parents take the all waking hours piece. To be, you know, I can only take it off after they fall asleep.
[00:47:42] I mean, there are parents who are worried that they're going to hurt their kids, if they don't try to get them to wear the hearing aids all the time. And, and I think we just need to build on success and say, what are the times in your family's routine that are, that, you know, are the most interactive. So is there reading going on, do you read to your child?
[00:48:01] That's a really good time for hearing aid use. I think mealtime having, you know, And then it allows you to have conversations about, you know, if there's interaction where the TV's not on, you know, in the home. I mean, there's just lots of things that we can do to
help families sort of build success. And because it's going to be, uh, a challenge that paper that Beth published with infants showed that, um, the infants were wearing their hearing aids about four hours a day.
[00:48:30] And the parents were telling the audiologists that they were wearing them about eight hours a day. Hm. And I don't think that's because parents were trying to deceive the audiologist. I think the parents wanted to make the audiologists happy and they wanted the audiologists to think that they were doing a good job.
[00:48:47] And that's because the audiologist says they need to wear the hearing aids all waking hours. When I think what we need to say is, you know, what can we build on, what are the successes that we can build on with hearing aid use over time? And I think that's just, it, it's going to become a more positive thing for parents and they won't feel ashamed if.
[00:49:05] Because it's hard, you know, like it's really, really hard. And, um, and that's, we tried to start all of our conversations about hearing aid use with that. Like it's difficult. You know, the analogy that I always use is I can never keep shoes on my kids when they were little. So the idea that you can keep a hearing aid on them is sort of remarkable, you know?
[00:49:24] So just sort of giving parents the, the freedom to say. You know, what's what, what do you think is going to work best for your child? And then letting them, you know, take the lead? I think that's so important, but you're right. We do have to reinforce that if
they're taking breaks, they're short, we don't want extended periods of time without hearing aids more than more than an hour or two, you know, without the hearing aids, as a, as a choice is, is, is a problem.
[00:49:53] And, and, and so we do have to. Be strict about that and say, it's not a free for all where you can just wear the hearing aids when you want. Um, but, but, and then having that link for them that that it really is important for their development that they wear their hearing aids. Right, right. Yeah. No, this was good.
[00:50:11] I'm so glad you guys are doing all this research on hearing aids and kids and, and what, what they need. Is there anything Ryan, I didn't ask you that you want to share with listeners today as a takeaway. No. I mean, I just think, uh, it's such a cool time, uh, to be in our field and to be working with families of children who are deaf and hard of hearing, because, um, when I started out as an undergrad at Northern Colorado, I was still seeing kids in the lab school there that were identified with hearing loss when they were two or three years old.
[00:50:49] And they were wearing these big bulky. You know, body aids that sent one signal to both years. Right. And that was pretty, I thought that was pretty cool, but now we're fitting babies and we're, I mean, and that, I don't feel like I'm that old. And I feel like things change really, really fast. And it's been a challenge because we've had to have research to kind of keep on top of those changes.
[00:51:12] Right. Because before that, we didn't really fit infants with hearing aids and now we're doing it all the time. So. I just think it's such a cool time right now. I don't think there's ever been a better time to be in our field and to be helping people. And, um, it's just, I'm really excited to see like what the next 20 years are like, because if we make as much progress as we did in the last 20 years, it's going to be amazing.
[00:51:34] Like it's, it's just, it's going to be cool. So that's. I just, I'm so excited about it and I really appreciate the opportunity to come on your podcast and talk your ear off. It's it's, uh, it's been fun. Well, thank you for coming on. I really appreciate it. And I know I listened to if they're going to gain a lot from listening today.
[00:51:53] So, um, Ryan, what I'm going to do and I show notes is put a link to your webpage. So] I know you guys at Boystown have so many great resources to share with professionals and parents and the like, out there. So I would definitely link that to the show notes. And again, thank you for being a part of empowEAR Audiology.
[00:52:14] Thank you, Carrie. I really appreciate it. All right. Thanks again. This has been a production of the 3C Digital Media Network.

Episode 14: empowEAR Audiology - Dr. Karen MacIver-Lux

[00:00:00] Welcome to episode 14 of empowEAR Audiology with Dr. Carrie Spangler.
[00:00:16] Hi, everyone. Welcome to the podcast. My name is Dr. Carrie Spangler, and I am your host. I am a passionate audiologist with a lifelong journey living with hearing challenges in this vibrant hearing world. I wanted to have an empowering power podcast for all of my listeners. Many of us learn and grow by being in communication and connecting with others.
[00:00:43] It is my hope that all of my listeners will learn something new and be empowered after each episode, whether you are a professional, a parent, an individual with hearing loss, or just want to be inspired. I am glad that you are with us today. I would be extremely grateful If you would take a moment to subscribe and give a positive rating for this podcast.
[00:01:10] Also, we have a Facebook page empowEAR Audiologist, join us and engage in the conversation about each episode. A transcript of each episode is also available on the 3C Digital Media Network web page in the section of podcast. So today I am overjoyed and grateful to have my own HEAR-O on this episode.
[00:01:37] And I defined a HEAR-O as someone who is a positive mentor, a support, a role model, and a friend. And I believe as humans, we thrive to be connected with others. And I have had the incredible opportunity to meet someone who walks in the same shoes and is truly a gifted connection. So let me introduce my.
[00:02:01] HEAR-O today. Her name is Karen MacIver-Lux, and she is an audiologist and also a certified auditory-verbal therapist. She is the co-founder of Thrive Together and she provides auditory learning services for individuals of all ages with hearing loss and hearing disorders in The Toronto Canada area.
[00:02:29] She is the president of Sound Intuition, a company that provides online learning experiences for professionals around the world who serve individuals of all ages who have communication disorders. She not only enjoys helping babies and young children learn to listen and talk with their hearing technology, but she also enjoys working with older teenagers and adults who want to improve their listening skills with newly acquired hearing technology by providing auditory skills training.
[00:03:04] She has made numerous contributions to the literature on the topic of aural rehab, but children and adults, and she has co-edited two textbooks on auditory verbal therapy. The most recent one published in 2020 called Auditory Verbal therapy, science research, and practice. And that is available through Plural publishing.
[00:03:29] She is a frequent guest lecturer in Canada and the U S and conferences around the world. She likes to say she's doing exactly what she dreamed of doing when she turned 11, which is a great segway into Karen. Thank you. Thank you for being on this podcast. I'm so excited to have you today. So welcome. It's so much fun to be here with you, Carrie.
[00:03:58] I always like to, um, kind of start out a podcast with how we know each other. Do
[00:04:10] remember that moment? Oh my gosh. There's so many more reasons than you do. First of all, you know I was doing a practicum at the University of Akron and, um, the supervisor that I had is a hard. Task masker. I should really say that hard task master. She, and, and, you know, those are some of the best teachers that we have, you know, in life.
[00:04:45] Right. And so I was nervous. It was my first day of working with her to top it off. I mean, it was very nervous, but, and, uh, so I remember grabbing your chart and.
[00:05:00] Is it okay if I talk about your yes, definitely. I'm an open book. You are definitely allowed to talk about that. Okay. No, I remember opening up your chart and I remember thinking, Oh my gosh, this girl has a hearing loss.
[00:05:17] So much like mine, except a lot more at a thousand Hertz, but the configuration much, we call a ski slope is really not that common. Right. And I was like, Oh my gosh. And this girl is close to my age and wow. Let's see what she's going to be like. And then, um, and then. I saw you walking to the room. And I said, wow, like she's so not only is she gorgeous, but.
[00:05:51] You know, with your bright, mouth smile, you're tan, you're blonde hair, your blonde back then, and university shirt on and so happy. So like just joyous. So I'm looking forward to the future and what it was about to bring you and. I thought, wow, like this is so amazing. And the reason why it was so amazing to me was because, and this is when I have to give you a little bit of a backstory.
[00:06:29] So when I was younger, the only person I ever met with a hearing loss, who was my age, was somebody, a friend who I had. I had my cottage in the summertime. And her family ran this restaurant that we used to go to all the time. And we knew she had two older siblings and she was my age, same, same as me having two older brothers.
[00:06:55] And she was home for the first time from her boarding school, which is a boarding school for children who are deaf and hard of hearing. And so she had, uh, actually better hearing than I did, but she was not wearing hearing technology. And she communicated with her family using sign language and. I thought that's great.
[00:07:20] You know, so when we got together and we met each other, uh, mothers introduced, you know, as to one another and, and she would immediately, she immediately had this look of disappointment on her face when she found out that I could not sign and that I talked instead. And so she's like, what's the point of meeting this girl?
[00:07:42] I can't talk to her. So we had a pad trusting, our hands and, you know, Uh, long story short, she was sad. She was, you know, not smiling a lot. And the reason why is because she couldn't communicate with her family and she couldn't communicate with me and she was missing her family at school. Who she could communicate with.
[00:08:09] And I thought, Oh my gosh, like, you know, maybe this is what it's like for so many other people. And nobody's learning to listen and talk. Nobody's hearing with the hearing aids. Nobody is able to communicate with their family, like I can, and I felt guilty about that. You know, I, I felt guilty for being able to be me and, um, and I, you know, and I grew up, I didn't meet anybody out and it was just older people who had acquired hearing loss and, and then I'm working in the university, working with adults primarily.
[00:08:52] And then in comes the room, uh, Beautiful happy, ambitious, talkative, chatty laughy, Carrie, and I. Wanted to cry and happiness at that moment. But you know, you can't do that when you're a student clinician, especially with our supervisor, but, you know, I was just so in, I was just like, Oh my gosh, she was a specimen.
[00:09:29] Oh. And yeah, I remember that. But do you remember about that? Come on,, it was a very similar memory, but I wasn't stressed out as a graduate clinician. I was, I got to come in as the patient. So maybe that's why I was so happy. I wasn't under the pressure. I wasn't under the pressure that you were under that day, but I do remember the same feeling once you.
[00:10:01] Introduced yourself. And you shared with me that you wear hearing aids, and I think you might've been using a Comtec FM system that day with a microphone on. And I think he actually had me use it so that you could hear me better. And I remember thinking the same thing. Here's this beautiful blonde who was in graduate school.
[00:10:29] With hearing aids like me studying to be an audiologist. And it was this kind of, I guess, turn, you know, my eyes were open with that because like you said, I did not know anybody else with hearing loss going through school. And I went to a mainstream school and similar to you, the only other person that I knew with hearing loss happened to be, um, someone that I played basketball with and she was, um, her whole family was deaf.
[00:11:09] So she grew up with a, an ASL background and was they fluent in sign language. So I wasn't able to connect in the same way with her. Um, as I, when I saw you, and I always say you're my, my HEAR-O, because it was almost a pivot point in my life where. I realized I'm not the only one. I there's someone besides my grandfather that wears hearing aids and my age, and it really was eye-opening to me.
[00:11:47] And. Um, motivational to me to see that I wasn't the only one. And so you gave me so much hope and finding, and I don't think at that point in time, I had chosen a major yet. So to kind of planting a seed, yes, you were planting, you were another person that planted that seed of going into the field of audiology.
[00:12:15] I think a lot of people say, how can someone with a hearing loss go into audiology? And I know we both have had people say that to us. And so we broke that barrier. We overcame that in a positive way. So yes, I think we both had this same. Story from a different angle of how we met. And it's quite amazing that we were both the first person that we met with hearing loss.
[00:12:51] Yeah. Yeah. And, and I can honestly tell you, it was one of the most memorable days. Um, most memorable feelings that I've had in my life. It was just. You, know, it's just so nice to meet someone like you, you know? And, um, and I was just, it really, really gave me hope. And the motivation to go forward in my studies as well.
[00:13:23] So thank you, Kevin. Well, thank you, Karen. And it's so amazing that we can continue to be so connected, which is best and good friends where you're like my little sister and spirit. And professions. So thank you so much for being my HEAR-O, Carrie. I so appreciate it. You're gonna make me cry tonight,
[00:13:57] but I think like you said, we have a similar audiogram and we have. I think a similar upbringing too, but I would love for you to share with all of our listeners, a little about your childhood journey, and growing up with hearing loss. And I'm sure we can both interject a little bit as you share your story with us.
[00:14:24] So yeah. Share a little bit about your childhood. My mom said that I had a very tenuous start to life, or what does that mean? At the time of my birth? My mother had complete placenta previa, which is when. The placenta is born first and the baby follows. So by that time, I, by the time I arrived, I wasn't breathing and had aspirated a lot of fluid when they were able to revive me.
[00:14:58] They also saw that I was a really sick baby. And so I had. As a systemic infection likely because my mother had toxemia during her pregnancy. And so the doctors told my mom right off the bat, you know, we don't think your daughter is going to last through the night they did but I did. And when I, it was discharged from the hospital, the doctors told me or told my mother not told me, but they told my mother that she would need to make sure that my vision.
[00:15:33] Was okay. And because of all of that oxygen loss and they didn't however, mention anything about the gentamycin that they gave me to heal the systemic infection that I had. And so, and you know, that gentamycin is ototoxic and has the potential to cause hearing loss. Um, Fast forward as I was growing up, my mother's saw that there was nothing wrong with my vision.
[00:16:06] But she did wonder whether I was hearing well. And that was when I was around 16 months of age. Now she's a music teacher. She played the piano all the time and she noticed that when she was playing the piano and the lower end. Um, which had all the base-type notes. She noticed that I was very responsive that I would move towards the music and even turn to the piano.
[00:16:34] But whenever she played in higher keys, I would just walk away or I would look like I wasn't interested at all. And so that was. Really worried her. And so she took me to the doctor many times and he would clap his hands and I would hear him and he would say, Oh, there's nothing wrong with her, her hearing.
[00:16:57] Um, fast-forward through many more visits. Uh, and then, um, the sudden three years in 11 months of age, and I still wasn't talking, I wasn't responding appropriately to language and. So at this point, my mother took me to the doctor and she refused to leave the office until he had called the local hospital and got me in to see an audiologist.
[00:17:27] And later on that day, they discovered that I had a mild hearing loss at 250 Hertz. For those of you who really liked numbers, which sloped down to a profound hearing loss at a thousand Hertz. So, uh, you know, my mother was very, luckily, she was very persistent and very aggressive, um, advocating for me right from the start.
[00:17:56] And if you want her to do something, you just tell her she can't do it. And then she will do everything she can to prove you wrong. And thank God. Bless my mother. So when the ENT told my mother that I would never learn to talk or even benefit from hearing aids, she's like, I don't care. You're going to have put behind the ear hearing aids on her and
[00:18:27] . this was the year that the really powerful behind-the-ear hearing aids came on the market for the first time I was able to avoid the body aids and, and, uh, so she got the hearing aids on as quickly as she could. And what was interesting was, and that was when I was four. That was the first time I remember seeing color.
[00:18:55] Hmm. When they put the hearing aids on and they turned it on. Um, I remember the pin from the new ear mold sticking in, you know, how an shove it in your ear. And then the room study glow, the golden yellow color. And it was, it was just, um, Crazy because before then my life was like a black and white motion picture, um, that jiggled and, you know, darted and flows.
[00:19:34] And as I learned too, as I gained listening experience with the hearing aids, the world became more and more colorful. So for me, sound islike color, you know, I don't know what that's like for you. Do you remember getting your hearing aids when you were four when you were young? I do. And I could probably just say that your story is an exact mirror of my story.
[00:20:04] No, it really is. So again, like, just like your mom, um, the placenta broke away too soon, which caused lack of oxygen. And so I was born, my APGAR scores were like zero and two. Oh my gosh. Really? And they, again told my mom, you know, you need to look for all of these kind of developmental delays. However, they never mentioned hearing loss.
[00:20:37] And my mom, she was a teacher and. She would take me to three, I think she said three or four different pediatricians who clapped their hands. And because of that good low- frequency hearing, we hear that. So we would turn and they would say, Hey, you're over-protective go home. She's a late bloomer. She'll catch up.
[00:21:05] And it was right around the age of four when I wasn't talking. Or no one could understand what I was saying. I was talking, but I wasn't understand. And that was the first time that I was tested. By an audiologist at that point in time. And I was fit with my first pair of hearing aids at the age of four.
[00:21:30] And I think my first hearing memory was actually my footsteps in the hall. So I didn't know we were walking down a tile or whatever hallway and hearing. My footsteps for the first time was kind of my hearing moment to hearing memory after that. So yes, a very similar story with that lack of oxygen and having that ski slope.
[00:22:02] Yeah. Yeah. Wow. Mine.wasn’t as pretty as yours. It's about the footsteps
[00:22:11] analogy of the colors, right? That it from the black and white are kind of that static too. Putting technology and, and I'm sure you could say now your color, your world of color is much more vibrant than it was at the age of boys because of technology. Sure. Along with the raindrops and the plastic caps that they put on you, that crinkling noise, you know, that's, that's what I heard the first.
[00:22:39] And then my mother put me on the subway and I don't remember that, but she died. Because I screamed because I had never heard that sound. Right. Um, but you know, that night I was in a Baton rehearsal.
[00:23:00] And, you know, I followed everybody out when the music was playing and the first song was raindrops falling on my head.
[00:23:09] And, uh, when the song came on and everybody started dancing, I just stood there ion ah, looking around like, what is that sound like? What is that music? And, and like, you know, even though I had heard it before, it wasn't. In the richness that I heard it with, the hearing aids, you know, what I'm talking about.
[00:23:31] And, uh, the mothers were crying in the audience because I was just like, you know, so happy and so excited, you know, because it was just so much better, so much richer and, and even the voice of him singing was so much easier to hear and more pleasant. To listen to. So yeah, it's crazy that have almost, we are definitely hearing sisters for sure.
[00:24:10] So kind of moving into, then my next question would be growing up. Did you have any challenges that you felt Really stood out as, as a child at the only one going to through school with having a hearing loss. Well, um, I think, I mean, this is, this is like a two-part question because, you know, we talk about challenges and, you know, I think the challenge for me that was most pertinent in the school years was fear.
[00:24:57] And it wasn't my fear. It was everybody else's fears, fears about what to do with Karen. Or that kid that just came into your class, who has those funny looking things coming out of her ears, and that she wearing on her body. And because they don't, because nobody tells them what that thing is. It and everybody fears the unknown.
[00:25:25] Right. Um, uh, a lot of kids closed any doors of opportunities for friendship. Towards me. And so that is what made it very difficult for me to make friends now, back in the seventies when I was going to school. And, um, we just, before I was diagnosed, the, the, the, the rule was any kid with any severe to profound hearing has had to go for a school for the deaf, a special school in Toronto.
[00:26:03] And my mother had found out about an experimental program in the Toronto district school board that was driven by the new director of the deaf, deaf and hard of hearing program and phonic ear. Now phonic ears you may know was one of the first companies, if not the first company to develop an assisted listening device.
[00:26:30] So it's not a hearing like a device, like a hearing aid. It was a device that is worn, um, today with your hearing, aids. And so we wore that in school and, um, What they wanted to see was can they put children with severe to profound hearing loss Into the local schools into a regular classroom. And can they succeed academically if they were the phonic ear system and the teacher wears the transmitter, and then they would have a teacher of the deaf, come into the school three times a week to make sure that always making, um, all was going well in terms of listening and spoken language development and academic.
[00:27:23] Uh, work as well. And so I was one of 50 kids in Toronto that got into this program and it worked so well that now inclusion of children with any degree of hearing loss across Ontario, Canada, um, it became a rule rather than the exception. So, um, with this new person, You know, who has all these devices? It was really difficult for me to make friends in school.
[00:27:52] Um, not only because I looked different, but I sounded different as well. I was so delayed in my spoken communication skills, um, that. I did manage to have one or two friends during kindergarten to grade four. And that would be nice. And, but in grade three, I slowly began to realize that the kids only paid attention to me.
[00:28:18] If I had something to give to them and something that was cool for them to see like a camera or something, then I moved to the Western part of Canada in Calgary. Alberta. And that was my happiest time socially because the kids out there were so amazing. They were so friendly and the teacher kind of prepped them beforehand that, you know, I'm just a girl who has.
[00:28:48] A little trouble hearing. And she wears this phonic year. She wears hearing aids Those are just extra things, it's fashion, but this is Karen lets welcome her to the class and that made such a difference. Um, and so I was, I made friends really quickly and, you know, we had independence and learn social skills with a gifted teacher.
[00:29:15] I, it was. It was a magical year that showed me and my mom, what could be accomplished when you have a gifted teacher and good kids, good friends in the class. Um, then I returned to Toronto the next year and, um, left my happy place. And there in, in Toronto, the kids were. Not so nice to me. In grade six to grade eight, they bullied me or they excluded me.
[00:29:46] They wrote mean notes for me to read notes that, that, that I was deaf and dumb or what I should do with my life. Um, Jump off a bridge pictures of me with wires coming out of my ears and I had the Farrah Fawcett hairstyle back then. That was the only thing they got. Right. And, um, but you know, I had to learn to yeah.
[00:30:14] Use these notes in a reverse psychology manner. So I have a challenge. Daring in front of me, which is the fear of the unknown kids don't know what's going on with me. And, but they don't like what they see. And they're afraid that if they make friends with me, they're going to have, uh, they're going to start having trouble with their hearing.
[00:30:36] Right. Um, they just didn't like it. And so what I had to do was take the fear and reverse it. And make it something good, make it something educational or show them that what they were doing to me was not having the intended. Effect. So I would just put all the notes together on a big poster, presented it in a show and tell fashion during my lunch hour with my classmates and teachers and thanked all the kids in the class for loving and caring about me so much that they would write and draw these pictures during school time.
[00:31:18] And. You know, the teacher was so delighted, but then when she saw the, the poster, her face just fell and she said, you know what, Karen? She says, that is really nice of you. Um, she says, you know, why don't you go and show the teacher, uh, show the principal. Ah, the beautiful picture that use that, that you put on your bedroom wall so that you can wake up every morning and know and see how much the kids in your class love you.
[00:31:50] Cause that's how I presented it. You know, you guys love me so much that you do this and. You know, and, um, so that after that day, um, the bullying and exclude, well, the bullying stopped, but the exclusion didn't. And so, you know, high school was much better, but because just because the kids were much nicer, I don't know what it was, but the kids were nicer there.
[00:32:20] And because I had suffered from that meanness. That I got in middle school. I had put up a wall and I excluded myself. From certain people, you know, the popular kids thinking that they would be cruel to me and not with my time, which was a shame because they weren't cruel. They were really nice.
[00:32:48] And they really did try to reach out to me to become friends with me, but I rejected them. I just walked away from them and that was a missed opportunity. And it's such a shame. [00:33:00] And so. I learned lessons. Um, as I grew older and more mature, I became more and more aware of the good, uh, in the world, the good in people.
[00:33:14] And that it's not always about me, how people react to me. It's not always about me and my hearing loss. It's about being it's about them. It's about their experiences. It's about their feelings and. And the importance of me being a good friend in a kind of push into whoever I meet in this world. So that's the biggest challenge I think, is a fear that everybody else has.
[00:33:41] And you just have to learn how to deal with it in a positive and educational manner. Yeah, I am so impressed that at that age, you were able to put that poster together and present it that way.
[00:34:00] That shows a lot of courage and almost this intuition that you had in order to kind of make it positive, positive in a way that, but I don't know that that took a lot in order to kind of come up with that, but I didn't come up with that on my own.
[00:34:21] I came up with that, um, idea because of my parents. And I think this is another thing that I tell parents on my caseload. You know, your children learn how to feel about hearing loss by looking at you. Looking at your eyes, what's in your eyes. When you look at the child with the hearing loss and they learn about themselves by seeing themselves in, in their parents' eyes and my father and my mother.
[00:35:02] We were so proud. They were so confident. They also knew a lot more about reverse psychology and how to handle people much more than I did. So they sat me down. They had these conversations with me and they explained to me that it wasn't all about me. It could have been other things and, you know, um, And how other kids were feeling at the end of the day, when they would go home after spending a day, teasing me and these kids felt badly.
[00:35:37] You know, my mother knew that because their parents would tell my mother that, so it's, it's not easy being a kid these days. And I think by having parents who. Accepted me for who I was and felt really good about what I was able to achieve, what your child is able to achieve. You teach your children how to respond in difficult situations like that.
[00:36:08] That's how you, that's why you need mentors. That's why you need your parents. That's why you need friends. is to Kind of step back and kind of grow your awareness in the world so that you can learn how to better deal with the challenges that come your way. Yeah, it's such a good point. Cause I, I love to teach, uh, even preschoolers about just that beginning, you know, words and, and, um, talk about their technology and about their hearing loss in a preschool way.
[00:36:46] And it's a foundation that keeps building and if they have the knowledge about their own self and their own hearing loss, and they're more. Likely to share it when others are curious [00:37:00] about what are those things on your ears? So why is that light blinking or why does the teacher need to use the microphone?
[00:37:08] They have the words to do it and they practiced it. But when it comes at you unexpectedly, it's really hard to, to respond without on the fly. So having those practice moments are so important. Yeah. Yeah. And like it, you know, and my worry is that, you know, a lot of kids go through these experiences and they don't share these challenges with their parents.
[00:37:37] They don't talk about it at home, um, for whatever reason. And it's not the
parent's fault. It's just, you know, it's just the way it is. And it's these kids that I worry the
most about. Is, you know, we don't know what's going on with them. And so, um, that's one of the reasons why my mother, uh, was a librarian and I thought she was a librarian because she was a librarian and that was her job, NO. the assistant to the librarian, because she wanted to keep an eye on what was going on in school.
[00:38:14] And, you know, she smashed down those roadblocks. If they came up from the teacher's side of things, which they did, I learned much later on when I was in university, my mother told me then where all the stuff that she had to do. But, um, you know, it's, it's just, I tell parents, just talk to your kids, talk about, you know, feelings and get them, um, to.
[00:38:45] Together with other kids who are like them. And more importantly, older people who have gone through it, you know, and so that they can share and feel comfortable sharing that stuff because that's usually when the kids started talking. I dunno. Is that what you say? I do. I feel like they need to know that they're not the only one and most of our kids.
[00:39:12] are mainstream now because of early identification and early intervention and technology that is available to them. They end up being the one and only at a school. And so they are in those situations where they're bullied or. People are curious about it, or they don't know how to respond. And I think getting them together with whether it's a mentor that's older than them, that has been through it or others who are around the same age and you bring up those situations with each other, they can talk it out.
[00:39:54] And even if they haven't been in that situation, they might be in that situation in the future. And they'll. Be better equipped to deal with that. So it sounds like a lot of your challenges throughout school really became a strength for you in life. Do you feel, feel that way? I think so. I think so. Um, I never forgot what my parents told me when about this poster.
[00:40:29] The, the notes and the bullying and all of this. Um, you know, I am such a fan when I was growing up. I was such a fan of, um, learning from survivors. Of any situation from disasters to mountain climbing or, um, even Holocaust survivors. And there was one lady, uh, Dr. Edith, Eva Agger. I think that's how her name is pronounced.
[00:41:04] I don't know. But, um, she was, she was just, I saw her, I was reading books that she wrote and I saw her giving a Ted talk on grieving feeling and healing. And she said, and I quote, there's a lot of potential that hides in the dark shadows of life and she's still right. And hearing loss brings. About a lot of dark challenges from time to time.
[00:41:36] Um, it can also be rosy too, but if you look carefully, you can find the potential there in the darkness and you bring the light in there. And that's why I tell the parents, you know, you really need to be, you need to let your kids figure out. Where that potential is. And if they can't find it on their own, then you bring the light in there and you kind of lead them to it.
[00:42:05] And like, like I said, you know, their eyes reflect the strength, the confidence, the joy, and pride in the confidence. And because of this, if they see this, then they will feel that way about their hearing loss and they will bring that light to it, I guess. So out of that, I learned to become a better listener, not to listen, to learn or to listen, to communicate, but to listen in such a way where I can understand the underlying messages, the underlying meaning in the messages that I'm listening to.
[00:42:51] And. And then respond appropriately or probe to find out more about why that roadblock is there. For example, when I was, I really wanted to be an audiologist. I knew I wanted to be an audiologist since I was 11 years of age. And so it took me a journey, but I. A while to get there. But I got into a university and undergraduate program in communication disorders in, in the states.
[00:43:25] I'm not going to say where. And, um, so when I got in, they, the, the chairperson of the program came to me and she said, you know, Karen, she said, I'm really not comfortable with you being in this program. And I said why? And she said, well, because you need to pass a speech and hearing. hearing tests and you don't.
[00:43:51] And I said, yeah, I know. And I'm like, okay. Um, I said, what, what, what is the concern? You know? And it was like, in me, fumbling, this anger I've, you know, she's just discriminating against me. Like, why is she stopping me? You know? And I could
have lashed out in anger and told her some. Choice things. But, you know, I had to say calm down, Karen, this is a challenge.
[00:44:25] You've done these challenges before, figure out what the fear is. And her fear as she expressed it to me was very different than what I assumed her fear was, which was, she doesn't want me in the program because I'm deaf. No. She said to me, Karen, I'm afraid that, you know, it takes you four years of undergraduate work in this program to you have to graduate and get your bachelor's degree, but you're not an audiologist yet you have to apply for graduate school and I'm afraid that none of the audiology graduate school programs will accept you.
[00:45:15] Because you have a hearing loss. Oh. And she says, I just don't want you to waste your time. And I said, that makes complete sense. And I could have gotten angry and said, well, I know this audiologist who has hearing, had hearing loss, Mark Ross, and you know, if he could do it, then I could do it. And then blah blah blah,, but no, you know, kind positive.
[00:45:44] Listen to the fear and address it. And I said, well, how about this is where negotiation skills come in? How about if I meet with five different audiology graduate
[00:46:00] school programs, and I ask them, I go and visit them. And I talked to the chair, the, the, the, the head of the program and I stay. Here. I look at my marks, which means you have to let me take these courses just for one semester.
[00:46:15] And I said, let me take the course for one semester and let me get the grades. And then I can talk to the head of the program and see if so, if he will accept me, even though I have a hearing loss, I said, would that work for you? And she says, that would be perfect. Perfect. She says, that's great. She says, I feel so much better.
[00:46:39] We have a plan and. Yes, welcome to the program. And then I thought, Oh my God, I gotta call my mom. my mom knows what to do. I didn't know what to do. Um, but. That's exactly what we did. And I showed up at one in the audiology graduate programs and, and the, the head of the of the undergraduate program wrote him a letter about me.
[00:47:10] And, uh, when I showed up, he introduced himself and he had an interpreter to his side. Um, Hello. My name is Dr. So-and-so and the interpreter was signing. And I was looking at the interpreter lately. I'm like, hello, you know, and looking at him. And I said, ah, hello? I said, thank you so much for taking the time to meet with me.
[00:47:35] And my mother today and his face just dropped and the interpreter just kind of started fading,
[00:47:45] i couldn’t understand sign language that doesn't matter. But I was so impressed with his, um, with his, uh, thoughtfulness to arrange accommodation for me, you know, like [00:48:00] what a nice guy to do that. And he said, He said, you know, you don't need the interpreter. And I said, no, I'm sorry. And he says, you don't know, sign language.
[00:48:09] And I said, no, but I could learn if that, if that was the one that takes to get out,
[00:48:18] he, he, he just, you know, took me in the office and he said, girl, he said, let me see your transcript. I gave him my transcript and he says, y'all have no problems getting in, but you know, there's another program with Dr. Carol Flexer at the university of Akron, Ohio. And I said, yes. I said, that's where I want to go.
[00:48:38] Because my, my audiologist in Toronto graduated from Kent state university and he knows Carol Flexer and he says, she's, she's all that, you know. And he said, Oh, I hate to agree with him on that one. He says, I would love to have you in my program, but he says, she is really cool. You want to go see her? And I'm like, you know, after that it was, it made me feel so great.
[00:49:09] You know, because even though I kind of had that little nugget of fear today, I was worried about how the audiology program would respond to my application. But I wasn't anymore because this guy said, girl, you keep your grades like this, you’ll get ain't no problem. And you can go anywhere you want. Don't worry about your hearing loss.
[00:49:33] And so it made not only me feel about it, but it made. The, the, the chair of my undergraduate program feels so much better. And by that time she was like, yeah. Oh yeah, you you're yeah, yeah. You're rocking it. And so that's how, that's, what I learned from my hearing loss is just, you know, even though you have a hearing loss, it doesn't mean that you can't listen [00:50:00] and be patient, kind, positive.
[00:50:04] And just respond in an I can manner rather than an I can't. So I guess that's what I learned from there. No, that, that is amazing. And I had a similar experience to an undergrad where I was in the program and the chair of the department. And I think the clinic director. Had called me into their office and said the same thing to me and said, I don't think someone with hearing loss is going to be able to progress through the program and the same kind of fear they had.
[00:50:48] I don't know if you're going to be able to get into grad school. And if anyone walks up to you. And then they saw my marks and my grades and they were like, well, we'll give you, we'll give it a try. Yeah. Yeah. And then after that, they were more willing to work with me. And I think they realized, Oh, someone who has hearing loss brings a whole another perspective to the field of audiology that we didn't realize.
[00:51:23] I guess I shouldn't say existed, but they hadn't had anybody going through this undergraduate program with hearing loss. And so they were, I think, pleasantly surprised that I could bring this other perspective and relate so much differently with an empathy for those who actually were coming through the clinic, which kind of.
[00:51:51] This is my next question for you. Do you feel, I know you wanted to be an audiologist at 11 and you pursued that you went to graduate school. We both were trained by Dr. Carol Flexer, which is, was a highlight of my graduate. Program I'm still connected to her today, but do you feel like your journey living with hearing loss impacts what you do now?
[00:52:23] Everything that you do now?
[00:52:28] I think so. And, and I, I hesitate to answer this question because it almost sounds, um, uh, Oh, lucky me, you know, I got a hearing loss and I'm so much better than everybody. That is not the way to, that's not what I want to convey. And I think everybody has so much to offer in this field. Um, but you know, when it comes to having a hearing loss, I think.
[00:53:05] Well, I mean, initially I was worried, um, that I wouldn't be able to do my job, you know, that was my first and foremost concern. And the only part of my job that I was worried that I would have trouble with was. Uh, the speech discrimination testing that we. Right. Um, you know, am I going to hear my client's response as correct or incorrect, or, you know, I was worried about scoring them higher than they deserved.
[00:53:37] Right. Um, but you know, I, I, again, it was a fear and it was, I addressed it with my professor and we learned that. You know, if you know, we can get the client to write down the responses, we can get the client to wear a Comtec Transmitter at that time. Um, and you know, and it actually turned out to be a brilliant counseling tool.
[00:54:11] Because what I would do is when I was working in Toronto or I was working in an occupational health clinic, but it was open in the evening for kids, um, who were attending speech therapy in a local clinic. And, uh, so they would all come to me in the evening. I came, I came to become. I came to be known as the deaf audiologist,
[00:54:42] right. Talking about anyway. Um, what I would do is because these kids were referred by speech-language pathologist. I thought I'm going to use my tool, which is I want the parents to write down what their kids said. Hmm. So, um, I would have the parent go into the booth with their child and they would sit in the corner and they would hear all the words that would come through the speaker and they would write down what their kids said.
[00:55:16] And so with the parents sitting next to me at the audiometer, and so as I saw them writing out the responses, I was like, And then testing their hearing. It would either be normal or there would be a mild hearing loss due to, or otitis media like a new infection with fluid. Um, then I would say to them, you know, I said, see how they missed this word it's because they have trouble hearing this particular sound.
[00:55:45] Which is right here on that audiogram. And that's why he hears it this way. And that's why they're saying it in a parent would be like, Oh my gosh, that's amazing. And then halfway through the word, um, list I would switch parents. One parent and we're going to the booth and they continue with the written responses to help me score the kid.
[00:56:10] And the parents loved it. They felt involved in the process. So this is an example of me taking a challenge, a physical challenge that my hearing loss would present in my job and using a tool that I would use to overcome that challenge as a tool to help parents learn. About the impact of hearing loss on their child, understanding what they hear and how they produce the sounds in words.
[00:56:40] And so that was one, um, advantage that I could make out of the hearing loss.
That was out of necessity. And that is thanks to Carol Flexer because she, you know, how she was training us so much about speech acoustics and, you know, pediatric audiology and making predictions about what they might be hearing after playing with them in the waiting room.
[00:57:07] Like she is one of the most brilliant pediatric audiologists I've ever had the opportunity to observe and to learn from. Um, and so, um, so, and then through the auditory-verbal therapy, I think my experience with auditory, verbal therapy and learning and training to provide it has also helped me and writing recommendations to speech-language pathologists.
[00:57:37] Because if you have a child who had better hearing in the left ear, And in right then I would say, make sure you sit on the left side and Oh, when you're having trouble getting that “S” just elongate the “s”, the end of the word, because it makes it more acoustically salient, and just leaning down because you lean a little bit closer to the hearing technology, add a few more DB and these SLPs are like, Oh, my gosh.
[00:58:03] I asked them and you know, so it got to the point where, you know, the speech-language pathologist were giving me referrals and they were saying, make sure that you ask for the deaf audiologist, know so much about it. And then, I mean, because those are tips that not only did I learn in school, but.
[00:58:28] They helped me when I was learning to grow up, but my hearing loss. And then I guess the other way that my hearing loss helped a lot was me getting a cochlear implant in 2009. Uh, not only did I get a cochlear implant that worked, but it was a lemon. And it didn't work as well as it could have, but despite the fact that it's still like, Oh my gosh, even with an implant that failed, I still heard so much better than I did with the hearing aids are so much easier.
[00:59:05] It was so much less. effort in listening and that appreciation. Um, and the fact that I had to aggressively advocate for myself, get the programming that I needed done because after one year of wearing that implant, I had about 130 maps. Oh, wow. That's a lot that is a lot. So have like six at the most, in their first year of listening.
[00:59:35] Right. And, uh, so anyway, um, you know, getting that implant had an impact, in my practice because I learned what the process is, what it sounds like I have an implant and, uh, so it, it helped me in my work with older children, teenagers, and adults who get what we call auditory skills training. And it's an auditory-based training as a type of family-centered auditory-based.
[01:00:05] Or we have rehab individualized for children in older, who are older than sets that, you know, a child who's 96 years old, they would qualify and, you know, AST and, um, uh, the experience that I had getting. The implant activated and hearing sound or speech as it's completely unrecognizable. You, you remember that?
[01:00:39] And it sounded robotic. It sounded monotone and it had clicks and whistles, and I'm just thinking, Oh my, this is awful. This is a mistake. And I'm like, the professional in me had gone. And, um, there's the personal me. Who's sitting there going through it, but I learned that as I. Gradually as the minutes ticked into hours and hours into days.
[01:01:10] My brain gradually began to adjust to the electrically evoked signals that my implant was providing. And unrecognizable speech was gradually morphing into more
natural sounding speech. And that was easier to hear and understand. And so this is the process that everybody goes through, um, to, to varying degrees.
[01:01:33] And I called this adoptation period, the auditory brain change process, or the ABC.process. And this process can last some, three to six months, and this is when the patients have the most trouble. And it's very, and you have to walk them through that process and you have to say, Oh, that's a great error. Yes, that's normal.
[01:01:54] And you can say it with confidence. So I think it gives me more confidence as a clinician as to being able to respond to their clients and what they hear as, okay. This is okay. Oh, this is not okay. We need to get this addressed. Um, I have much more confidence, so I think that's what my hearing loss has brought into my practices.
[01:02:18] The confidence in knowing that. I kind of do know what I'm doing and you've lived it too. So that's yeah. Yes. Now I'm so glad you brought up yet. The auditory, what is it? Auditory skills, skills training, or AST yeah. And it is so critical for, our, Teens who are getting cochlear implants later and adults who are getting cochlear implants later, that they need to have this period of time for training and coaching, or they're not going to maybe accept this new signal coming into their brain.
[01:03:09] Yeah. Because it is a lot different when you first are activated and trying to get used to a whole new world of sound that I had the same reaction you did. Well, wait, did I do the right thing? Because this does not sound good at all. And now with training and coaching, When I put my implant on it sounds what I feel like normal again.
[01:03:40] Yeah. And, and that's, that's the point that, I mean, a lot of people, there's a lot of auditory simulations of what the implant would sound like on, on the internet drives me crazy because yeah, it does sound something. It sounds something like that in the initial stages, but that's just the process that the brain is going.
[01:04:03] Wow. W w w what is this electrically book signal what's going on here? Like panic for your own alarm alarm, you know? Woo hoo. That's why it sounds so bad at first, it's just the brain freaking out. And then when you tell the brain, I tell my clients, you know, just talk to your brain, just tell them it's okay.
[01:04:27] These are good things to hear. It's going to get better. The light is at the end of the tunnel. It's such a good job brain. And then the brain will change the signal. You're not getting used to a bad signal that you hear on the internet. The brain is morphing it into something that sounds beautiful and natural.
[01:04:50] I mean, yes. Okay. There are some limitations to some degree, but gosh, it sounds pretty dang good. And we have such a similar hearing journey with everything that I was afraid at first, because I'm obviously was born with hearing loss and get an implant. A year ago, what my brain would do with that. And it is quite amazing how it
adjusts with the training and the appropriate mapping and the perseverance to keep going forward and wearing it all the time.
[01:05:27] Yeah. Yeah. And I find it really rewarding because, um, you know, the first three months are the most difficult for so many people and in order for them to continue wearing a device, They have to see some benefit to it. And in that ABC process, they don't see any benefit at all. And, but they know they have to keep wearing it and they rely on, um, computer assisted, um, auditory training program.
[01:06:01] They are not bad. They are wonderful, but. Sometimes it's difficult for the user to get to the right level in these programs because it's so generic and they really want to talk about sound quality. This sounds awful, is it right? You know, and they want to make sure they're using their devices. Right. And they want to have success.
[01:06:26] And that is what, um, Your clinician did. May I say her name? Dr. Denise Wray? What she did. She sat you up in her. You're such and worth her. She created, um, a successful listening experience for you because she knew. How to create it. She knew just what to do, and that makes you feel so much better and so much more positive.
[01:06:57] And, and it helps you to comply better with the implant use. Because honestly, if I did not have that therapy, if I did not have one Warren Estabooks with me in Germany? When I got activated, I would have gone back to the hotel room. Locked myself up in the room, taking the thing off. I couldn't do that because he was there.
[01:07:25] And when I was able to work with him and see, and hear the change that my brain was going to speech down slowly, slowly, better and better and better, the more success I was having, I was like, okay, I'm going to give this thing a shot, you know? Good job, Warren. You wanted to say something there? No, I just, I agree.
[01:07:51] A hundred percent. It's like we needed those success coaches in our life who knew that auditory development as well, to see the little steps that you were
taking, even though as a person you were like, I don't think I'm getting any better with this. And. Denise Dr. Denise Wray is able to sit back and say, look from last week to this week, you have improved this much.
[01:08:21] And so the little successes along the way motivated me to want to get better. Yeah, exactly. And that's what it is. Plus we helped the audiologist out with the programming case. Um, cause we know the numbers change speech acoustics too, but it's all about a supportive network and the therapy looks so much like AVT.
[01:08:48] It's supposed to be fun. It's supposed to be conversational and you've got your spouse or your listening partner involved and they learn how to create those positive listening
[01:09:00] experiences too. So that's why I'm really excited about auditory skills training and it's something that we need to do more because did you know that 30% of implant recipients are children?
[01:09:18] 70% are adults, but they are not getting any therapy or very little. And so we need to change that. I think so, too. So, but before we log off and I, I wanted. To also have you just give a little plug about Sound Intuition, because I know I had the pleasure to come up to Canada and be part of your amazing conferences that you are able to share with Canada and the US and the world.
[01:09:57] But can you just give us a little plug about Sound Intuition and I can definitely link everything to the show notes today, too. Yeah, you're very sweet. Thank you. I'd be happy to do that. Uh, Sound Intuition is a company that provides, um, we're supposed to be providing online learning experiences and we've been able to do that.
[01:10:20] Um, Particularly in the last year because of the pandemic. Right. But for many, many years, Sound Intuition has been having conferences in Toronto, Canada, uh, day-long conferences on anything to do with childhood hearing loss and therapy, um, to help them to become the very best listeners and talkers and. Uh, academic scholars and school.
[01:10:48] And, um, so we have a conference in the spring and a conference in the fall. They, I usually, um, approved at that they're all approved
[01:11:00] by for AG bell CEUs. And, um, Uh, we also have, um, a lot of training programs face-to-face or online training program to the very intense in auditory-verbal therapy and, and auditory skills training.
[01:11:20] And so Sound Intuition has a certification program for clinicians. We want to learn how to provide auditory skills training. And so we provide level one level, two-level three, uh, certification programs and training programs for that. And, uh, it's been life-altering. It's it's been so fantastic. We've had, um, Uh, trainers or professionals from Canada, the United States, Spain, Portugal, and Denmark.
[01:11:57] And, uh, recently in the Western part of Canada where they work with the indigenous population. Um, very excited about that as well. So I'm so proud of these clinicians who are going through the Training process and, um, getting certified and becoming one at some of the most talented clinicians I've ever seen in the world.
[01:12:22] So that's what we do. And, uh, if you want to learn more about Sound Intuition, you can go to www.soundintuition.com and sign up to be on the mailing list. And we also have a page on Facebook as well. So reach out to us if you want to learn more about what, what it is that we do, and I'm all about showing you what we can do.
[01:12:49] Well, we would definitely put the link in the show notes today. So any listener can just click on and find out more about Sound Intuition as well. But Karen, I just want to say thank you so much for one being my HEAR-O and you have been my HEAR-O for so long in my life. And, and I am so blessed that we can stay connected after all of these years, because it's been.
[01:13:18] I spend a lot of years actually, if we kind of count them up. So, but we're not going to share that today because we're just getting younger, not older, but I really
appreciate you coming on to the podcast today. It has been such an amazing Conversation. And how many, uh, how, uh, paths really are so similar.
[01:13:44] I know we've talked about it before, but every time we talk about it, I think we find out something more similar about our lives. That's true. But yeah. So thank you so much for being part of this tonight
[01:14:00] and thank you so much for having me. As part of your evening and, and podcast, it was such a pleasure.
[01:14:08] So thank you so much for having me. I was part of your podcast today. I, I appreciate it. And thank you listeners for listening. Don't forget to subscribe. So you don't miss an episode. This has been a production of the 3C Digital Media Network.

Episode 13: empowEAR Audiology - Deanna Magda

[00:00:00] Welcome to episode 13 of empowEAR Audiology with Dr. Carrie Spangler.
All right. Welcome to the empowEAR Audiolog Podcast. My name is Dr. Carrie Spangler, and I am your host. I am a passionate audiologist with a lifelong journey living with hearing challenges and this vibrant hearing world. I wanted to have an empowering podcast for all of my listeners. Many of us learn and grow by being in communication and connecting with others.
It is my hope that all of the listeners will learn something new and be empowered after each episode. So whether you're a professional, a parent, and an individual with hearing loss, or just want to be inspired, I am glad that you are here with us today. I would be grateful. If you can take a moment to subscribe and give a positive rating for the podcast, you can also follow us on our Facebook page, empowEAR audiology and and engage in the conversation.
A transcript of each episode is available on the 3C Digital Media Network webpage. So let's get started with today's webinar with today's podcast. I have been on line too long today, and I don't even know what I'm thinking today. So today I have a guest, um, that I just met today. Her name is Deanna Magda, and she is an itinerant teacher of the deaf and hard of hearing in New Jersey. And she works with children from birth through high school to develop their listening language and self advocacy skills through early intervention. And also in the schools. she is currently. And her third year of training for her listening and spoken language certification in auditory verbal education.
How exciting. And she creates these wonderful, amazing resources through her online store, listening fun to help teachers of the deaf, speech, language pathologists, and audiologists to children with hearing loss more easily and effectively. So I am really excited to have you today. Deanna. Welcome. Thank you so much.
I'm so happy to be here. Well, I just have to say that. I think I bought every single one of your resources on teachers pay teachers. You are so king. And I just want to say you are so talented and, and your creativity and putting materials together. And I know we're going to talk about that later in the podcast, but I'm always curious to find out how people kind of ventured in the field of, deaf education or working with individuals with hearing loss. So can you just share how you ventured into this field?
Sure. It was actually kind of by chance. I didn't know anybody when I was younger, but I knew I wanted to work with kids because I have a younger brother who's 14 years younger than me.
So he was like a baby baby when I was a teenager. And I just like, I loved him being around as a baby and it really made me love like little kids and wanted to work with kids. So I had that in my mind. And then I went to college and I went to the college of New Jersey. Just because I liked that at school, not for the program in particular, but when I was on my first tour, the girl giving the tour with a deaf education major, and I just thought it sounded like the most amazing, like most cool thing ever.
She was talking all about like sign language and our classes and all the cochlear implants. And I was like, I have no idea what you're. Talking about, but it sounds amazing. So I kind like thought about it for a while and then I just decided to do it. And here I am. So it was kind of random, but it really worked out nice because I get to work with kids, but it's more individual than being a classroom teacher, a little more specialized, a little more interesting.
Um, and I'm so happy I had that random tour guide that one day because I don't think I ever would have found it otherwise. I seem to hear a lot of people fall into the profession in some kind of random way. And it's always so interesting to hear. How did you get connected. So thank you for that wonderful tour guide that happened to be giving that tour, that one random day that you were visiting.
I know, I wish I remembered her name because it's such a small field. Like it's such a small world. Like I bet we would know each other. If I like could remember her name, she's probably like four years older than me. Well, I thought you might run into a someday because I'm sure new Jersey's program.
Wasn't huge. And you'll probably find them on LinkedIn or Facebook or some kind of social media. Yeah. I mean, if you're a teacher of deaf who did tour that day and like, 2012, you know, email me, maybe you'll find them through the podcast today. Would that be fun? So you work with all the way from the little ones all the way to high school.
Can you just share a little bit more about your job and who you're employed by? Sure. So I'm an itinerant teacher of the deaf and hard of hearing. And my main role is to support children in the mainstream schools. So that's pre-K to high school and that's what a lot of teachers of the deaf do. Um, I work on the County level, so I work with like a team it's like a big program.
And the different towns, New Jersey has a lot of very small towns. So a lot of districts don't have their own teacher, the deaf. There's just not enough students to support one. So if they have students with hearing loss, they'll contract with the County and we'll go from school to school to support them, and we either push into their classroom or pull out for.
Individual services and we mostly work on, you know, listening, language or self-advocacy along with like their team or like kind of on their educational team. On top of that, part of my caseload is early intervention because I am personally very interested in early intervention. Like I just love the babies.
I love like the real, foundational listening skills part. So I'm very lucky that in my job I'm able to do early intervention as part of my caseload. So I have like maybe a third early intervention and like two thirds school age. Um, but that is. Kind of what I do to support their listening and language skills.
I'm not their main teacher for any of them. I kind of. Support them in their learning. So is your early intervention in New Jersey under the department of Ed? No, it's actually under the department of health. Okay. That's what it is in Ohio too. So I was just curious about that too. It's a little different, very interesting.
I was able to get a COVID vaccine because of it. Oh, perfect. I'm still waiting for mine, but hopefully we are going to be soon. So what. Got, uh, I guess what, um, was one of the reason that you decided to gain more education and training for listening and spoken language for certification and auditory verbal education?
So when I first started. All of my students actually just by chance were using listening and spoken language. And even still now about 95% of my students on my caseload, um, use listening and spoken language. And I realized that if I wanted to do early intervention, I really was going to need more training in that area because my I I'm a teacher by training.
So my, my schooling was really focused on education. On, you know, best practices for teaching, reading and social studies. And we had some classes on auditory verbal therapy, but not enough to really not enough, you know, to do it really well. So I definitely wanted to get more skilled in that area of the.
Um, you know, aural habilitation and all of that, so that I could, if I was going to do what I really wanted to do it like, well, you know, I really wanted to be really good at it. And I was also, I'm always one of those people, like I loved school. I love learning. Like I like to read, like, if there's some, if there's more to know, like I want to do it, like, I just want to get as much information as possible.
So it was kind of a no brainer for me to. Um, go for my auditory verbal ed education, um, certification. And because I am a teacher, a lot of my hours are in the schools, but it's actually really helpful for teachers too. Like, even if you don't do earlier, I mean, if you do early intervention, I feel like. It's super, super helpful.
But even with the school age kids, because you know, if you're working with preschool or if you could still have new listeners, you know, I've had bunch of kids better, late identified, and then they go to preschool and it's like, here's this kid in preschool who really needs some foundational listening skills to develop.
And the auditory verbal training has come in handy a lot there, but also. Just like a lot of times for itinerant teachers of the deaf, we have to support the academic content and that's kind of our first priority it's to help them access there. They're general education classes. And so I plan all these fun listening activities and like games, but if they need help with their social studies, like that's going to come first and I have to be able to embed their listening goals into that full day of activity.
So I feel like going through my LSL certification has just helped me internalize those strategies and it makes it so much easier to work in those listening skills, into the content that I'm supporting anyway, in the schools. Yeah, no, that's great. I'm so glad you're, you're going through that process because we need more teachers of the deaf who have that kind of certification and extra, uh, learning experiences as well.
Because like you said, 95% of your kids are using listening and spoken language. And to have that background probably to share with teachers and parents and your own knowledge is really valuable. Yeah, especially too. Cause a lot of times, I mean, when I have an educational audiologist on the team, I like so happy.
Cause they're like super, super helpful, but a lot of times I'm the only person on that child's educational team who knows anything about hearing loss. So going through the whole process, I've just learned so, so much every day I feel like right now I'm in my third year. So I'm studying a lot for the test and I'm still like the amount of information.
I still have to learn just like blows my mind every day that I'm like practicing, but I feel like just having such a good base of knowledge really helps when you're the only person on that team who knows anything about hearing loss. Like, I feel like it's really important to really know your stuff. And I didn't even know.
You don't know what you don't know. Until you learn it. So it definitely, it definitely helped me be a stronger advocate for my students and a stronger resource for their teachers, because I feel like I, I know what I'm talking about and I have a much deeper understanding of it than I did before I started.
That makes a lot of sense. So some of our listeners and I get this question quite a bit, working in the schools as well is. Can you just define what is a teacher of the deaf? I mean, I know what it is, but I want to hear you define it. Okay. So a teacher of the deaf and that I would say a teacher of the deaf and hard of hearing personally is a, um, because people miss hear you and they're like, well, what?
Doesn't like a teacher, um, It's a teacher that specializes in hearing loss and its impact on education. So typically the areas, if you're working with, um, children who are mainstreamed and use listening and spoken language, typically we focus on lists like, uh, auditory skill development, language and self-advocacy, and those are things that are not unique to hearing loss, but especially important for children with hearing loss because.
It all goes back to accessibility. So the children need to be able to access. Their education and a teacher of the deaf knows how to make that happen. And other special ed teachers, SLPs, they have so much good information, but not that specific information. And if children don't have the right access, they're never going to be able to be successful.
You could be the best special ed teacher, the best SLP. But if that child hearing aids are not working, it's not right. So that's kind of what makes it Tod different. It's just there. They're just specialized and they have that knowledge. To support those students and to really make sure that their learning is accessible in a way that if they weren't there, they would just be missing stuff.
And wouldn't even know it. And how do you feel like you insert yourself into that team? Because I know you said, obviously you're doing a lot of itinerants or you're in and out of buildings and you might not be there every single day or you're there once a week, or I don't know what your schedule is, but how do you kind of make sure that your role is, is key and that educational team.
Yeah. I mean, that's a really good question because it's not easy sometimes. some teachers, the deaf work for one district and then they are like, they know everybody in that district, but since I don't actually work for the district, I don't know them until I introduced myself to them. It's actually been a little bit easier now during the teletherapy that tela learning, because.
We can like schedule. It's very easy to like schedule a quick zoom with the teacher and talk to them as opposed to trying to talk to them in the classroom. But I think a lot of it is we do an in-service at the beginning of the year for many children, uh, where we introduce ourselves and just give like general strategies go over their IEP or go over their audiogram.
Whatever it is to like prepare them to have a child with a hearing loss in their class and go over the equipment. And I think that's a really good way to start because you can get in there and like tell them who you are and tell them that you're there to help. Um, and a lot of teachers are overwhelmed by the equipment at first, that seems to be like their sticking point.
So being able to show them that I can help them with that. Like I can help fix their biggest problem, which is usually the equipment. Then they see I'm there to help. I'm not there to change their teaching. I'm not there to, you know, do anything different. I'm just there to help this student access the teaching that they were already going to do.
Um, and kind of presenting it from that angle is that I'm here to make your life easier. Not harder is always how I try to frame it. And then I always try to get in with the SLP. cause usually they have some understanding of hearing loss and a lot of them are very interested in what we do because it's very related.
So I always try to get in with them. And, um, a lot of times it's always good to, you know, check in with the school nurse. A lot of times they keep battery, even equipment. There it's always a good person to just like loop in. And then the case manager I always meet with to make sure that they know who. Who I am face to face.
Um, and it's hard. It's a little hard, but as long as you hit all those bases, usually people are pretty good because you can help solve their problems like student isn't doing well. If a random student isn't doing well, the teacher is kind of on their own to figure out why, unless they have a special ed teacher or an SLP.
But if this particular student is struggling, at least they have someone to turn to and I can help. So that's kind of how I try to approach it. And a lot of schools, we do push in. Like we joined the class and I always tell them, like, I can take a small group. I can help, like, use me as a resource. Like, you know, like I'm an extra set of hands.
Do you have 20 kindergartners? Like, let me help you. You know? And a lot of times they, they, they don't mind that they like that. So it's definitely an interesting balance. So how many kids do you have on your caseload? I think right now I have. 16, which is not that many compared to some teachers is enough.
I hear case loads that are like crazy high in some places. I don't know how they do it, but I do a lot of direct service. So I only have. For us. Sometimes we have mostly older kids who no longer need direct services. And we go in once or twice a month to like observe them and make sure their equipment's working and check in with the teachers, make sure everything's caption and like stuff like that.
I don't have a lot of those. I only have a few, most of my students are direct. Like I see them for an hour, a week, two hours a week, three hours a week. Something like that. Um, plus the travel time. And like I said, like, I think like five of those are families, babies. Okay. Yeah. That's a lot then. when you think about the ages and kind of that workload and the travel aspect of it and the amount of time that's needed.
Yeah. I'm super lucky in New Jersey. We're so densely populated. I don't travel that far. Like I'm, I'm not in a huge, I mean like a half hour radius. Where I live all the time, basically. Um, that's not the case. You said for some people, even, you said you're in Ohio. I think even there, like, like they're more spread out and then like places that are more rural it's like they have huge areas.
It's insane. Like the territory they cover, it's really impressive. Um, so I'm very lucky that, you know, I'm in a small, relatively small area. So I don't travel more than half. If I travel a half hour, I'm like, wow. To drive really far for that one. Like that was a long day today. You're traveling. Right. So what do you think some of you, I know you've kind of named them, but the biggest challenges as a teacher of the deaf and hard of hearing, I think the biggest one is just having such a big age range and ability range on your caseload because.
I felt like in the beginning, have you ever heard that expression where it's like a Jack of all trades, but a master of none? That's kind of how I felt. I felt, I still feel sometimes. Um, because you, so from like a preschooler, who's a brand new listener to a 10th grader. Who's working on self-advocacy to a first grade or learning to read and it's just like what?
Yeah. Like it's a very hard to be good at everything and to be An expert in everything that everyone needs, especially like in the beginning, because you have to like, like, you're like a student needs help with reading and you have to go home and Google like strategies for helping with reading. And then like, and then you get the, you know, the brand new listener and that's like in your, your wheelhouse, but.
You know, you have to prep all these materials for that one kid. And they're the only kid on your whole caseload. That's going to use them. So that time management of planning for so many different levels, it's not like you plan one lesson, you can use it with 20 kids. You kind of got to individualize it for everybody, um, which it can be challenging, but that's kind of when I started making things, I purposely made them so that I could use them.
With like a bunch of different students, because I knew I wasn't going to have time to prep a different lesson for everybody. Um, just, you know, it was just not enough time in the day. Um, but I think that's kind of like the flip five, like you get to work with students one-on-one but because you're working with students, one-on-one they all are going to have individual challenges that you get to address.
Yes. I can imagine that, which kind of gets to. A celebration of yours, I think is all of your listening material that you have been able to develop. So how did you get started with listening fun? Do you want to just kind of share what, what you're listening fun website? Sure. So listening fun is my teachers pay teachers store where I make, uh, materials for teachers of the deaf, SLP, and audiologist. Anyone who works on listening language or self-advocacy skills. And it started because in my first job, I wasn't, I was at a different location and it wasn't as big a program. I didn't have a lot of resources. I didn't have a lot of people I could ask for help. So I got my caseload and they're like, okay, who teach them?
And I'm like, Oh, I don't have anything. Like, like I would Google it speech stuff. And I found language stuff, but I was like, there's nothing about self-advocacy and there are some, some programs out there, but like not a lot and not like little things here and there. So one of the first things I made was like a little booklet to teach a kindergartner about her FM system.
Like, and it like made, I used a shape and I made it an FM and I like made a little person, like it was a rough, this actually, I think it's still up in my TPT store. It's definitely needs an upgrade, but that's basically how it started with, because I just didn't have any. Self-advocacy resources. And I couldn't find any that I liked.
So I started making them and I was like, well, I might as well post that. I'm like, I spent all this time making it, you know? Um, and then I also started making some listening ones that were specific to my kid goals that really focused on audition and not so much. I mean, they focus on language, but they focus on language,through audition, which is a little different than some SLP resources out there.
Um, and like I said, I needed things that were very versatile because I wasn't going to prep a million things. Um, so that's kinda how it started. And then I just kept. Like making them because I needed more things. Um, and every year I got different students who needed different things, so it just kind of snowballed from there.
But I really enjoyed it doing it. Like it started out out of necessity, but then it continued because I really enjoyed doing it. Like, it was very satisfying to like start with a blank page and then like create something and then like, Have something that I could use to teach a child something important, like that felt really satisfying and made me feel good about myself and just like making the products too.
Like I felt like I was learning and made me a better teacher, because I had to like research what's the best way to teach this. And then I would make the product based on that strategy. Yeah, that's kind of how it started. Yeah. Artwork is. So, uh, your creativity from that blank page to your final product is I think they engaging for the kids.
It's up-to-date it's. Fun. It's colorful. It's easy to use. Thank you. That means alot. . I try very hard to make it engaging for the kids. Like, I, I feel like a lot of kids, kids, like when I take them, like when I pull them out, some kids don't love when I pull them out. So I really feel like I have to work hard to get them hooked in, to like, want to hang out with me.
And like, I, I appreciate you saying that because I do work. I try very hard to make them fun for the kids. Do you have a favorite one that you like to pull out a lot or that you use quite a bit? Yeah. My favorite one is I have this like series of little booklets. Um, it's called my self advocacy series and I got this, like, I found this like illustrator who made me all this custom artwork of like the kids wearing different devices.
Then there's basically like little social stories about different self advocates. Self-advocacy scenarios, but I felt like that's exactly what I wanted. And it took me a couple of years of making resources to be able to make something of the caliber that I wanted. Like, I wanted things that looked really professional and really nice.
Like I felt like that's what our kids deserve. Like I can make my own little clip art, but I really wanted something like. Nice. And the kids can see themselves represented and it looks just like all the other materials in the classroom. So those are definitely my favorite. What I'm most proud of? Yes.
And I think I have those downloaded as well. I was gonna say, I love your Jeopardy game too. That was a lot of fun. And I was sharing before the podcast with Deanna that we have a leadership support group for teens and tweens with hearing loss. And at our last zoom meeting on Friday, this past Friday, we used your jeopardy game as a way to talk about advocacy and technology and accommodations and support.
And it was nice to have it already created the kids actually got into the game. They were excited about it and they were learning at the same time. So I think that's important. And the, I like making the games because they're not. That like deep, but sometimes it helps just to have something in front of you.
Like there's nothing more awkward than pulling a kid and sitting down and having nothing in front of you and being like, we're going to talk about self advocacy. I can see, like some of the kids were like, no, they don't want to share their problems. They don't want to just like tell you what they're struggling with.
Like, I just found it so awkward to not have something so that we could. Work on together and then naturally those things would come up. So like the jeopardy game, or I've been making a lot of games like that recently because, um, I'm virtual for a lot of students and I just need something even more fun to keep them engaged over zoom.
Um, and it's just nice to have like a starting point with some of those self-advocacy skills, like just something to start with. And then you can take that discussion. Anywhere you need to go to cover what they need, but I just felt so awkward in the beginning when I didn't have something in front of me.
So that's kind of where that came from. So I think you've also dived into boom Cards a little bit. Am I right? Yeah. I love boom . Cards are so fun. So could you share a little bit about your, a couple of your boom cards and you focus on those? Yeah. So I use them mostly for my younger students, like preschool, kindergarten, first grade, because those itty bitties are very hard to do zoom school with.
So you really have to bring your a game in terms of like engaging resources. And there are a lot of really fun Boom decks out there. But what I really wanted are things that I could focus on audition or learn through audition. So a lot of my boom decks, they have like pieces that are covered. So like I have a whole deck called like mystery boxes, which is basically like, I'm sure you've seen in real life, a million times AVTs do an activity where they put things in a box and you shake, shake, shake, knock, knock, knock, open, like, you know, you've done it a million times.
And I do that over teletherapy with a real box, but. I have a whole deck where everything's hidden under boxes. So you can play a bajillion different games and you shake, shake, shake the box and you open it and there's stuff underneath it. And like, that's the kind of thing where it's the same thing I would do.
It's very AVT. It's very different than speech. But on a boom deck. So I kind of, I try to incorporate more listening based activities in the boom decks and less visual, not less visual, but definitely doing it in a way that lends itself to audition a lot easier. Um, without having to, you know, make it work.
Now, I think a lot of people appreciate having creative materials to do on tele therapy sessions right now, because we're running out of some ideas and to have fresh ones and, um, engaging ones with the little ones. I really helpful to have right now there's fun. There's a lot of fun, little boom tricks that I'm learning.
I feel like every day I learn a new, like little trick, like there's one where you can like make it. So it looks like a flashlight is shining on the page and you just see. Parts of it. Like, I just learned how to do that. So I made one like that. Like I made one where it's like a little magic potion. Like there's all sorts of like fun little things that you can do.
And they really do help get those four year olds to pay attention to. It's not easy. So I, and because I, you know, because I. I don't have all preschoolers. I can't spend all of my time making boom decks, but I can make this one specific boom back that will last me a month because it's comprehensive. So that's what I try to do.
Like, I really just want to make people's lives easier. So if you could use the one winter boom deck for like a month, cause it's got, you know, the same activity, a bunch of different times, but like the vocab is different and it's like familiar. If that makes sense it does. And then you'll be able to use it next winter when you have a new kid who needs that auditory skills development.
Cause you can do it on the iPad too. So it's actually kind of nice when we're back in person for itinerant. I mean, I'll still bring my toys and stuff. Um, but it's nice to have a backup of just gives me a bunch of activities on iPad. I taught that you could always just have with you. At all times I'm at the backup.
Right, right. And I know you have quite a following on your Facebook page too. So how do you get people to engage in and tell me a little bit about your Facebook page. I don't know. I don't know. Do I have a lot of, like, I have a Facebook group that I, I think people, I like the Facebook group because a lot of teachers or teachers of the deaf are by themselves all day.
So even, even me, I'm on a big team, but I don't see them every day. I see them, I can talk to them, but it can be a little isolating. And for some people they don't have anyone to ask for help. So I do think people like having a group where they can ask questions and there are a bunch of teachers that have Facebook groups I'm on Facebook, but I really try to keep mine like.
Positive and like focused and full of good information. Like all share things that I find in there. Um, and on Instagram too, I just think people like to have options and they like to be able to. Talk about it with other people, because I mean, you've been taught, I feel like I'm T I'm trying not to talk fast, but I talk back when I get excited and that's because I don't have to talk about this stuff often.
Like, like I feel like my, my parents and my boyfriend are tired of hearing about that. So. You know, I feel like once they get that opportunity to talk about what they're passionate about and ask their questions, like the excitement comes out and they just appreciate having a spot to turn to when they need help or need ideas, or they're just kind of in a rut or something.
Yeah. And I think the, everybody has such good ideas and this, that kind of network and Facebook group is really important to get everybody connected to. So, yeah, I'm like amazed by some people's creativity. Like I, I share other people's ideas all the time because. I'm just like super impressed. And like I said, like, I, I feel like I absorb information just like so quickly.
Like I just take everything and like and give it all back. Like I'm like everything I know. Please take it or leave it. We, I know, I appreciate it. And I know a lot of other people who have. Downloaded your resources and really appreciate all of the effort that you put in and your graciousness to share it with everybody else too.
Is there anything else that you would want to share with our listeners, whether it's about being an itinerant teacher of the deaf or hard of hearing or any of your self advocacy and auditory listening resources that I might not have asked you about? Um, I would just say that if people are listening to this podcast, they're probably interested in hearing loss and to think about being an itinerant teacher of the deaf, because I know when some people hear that you have to drive from school to school, that turns them off, but really it's very nice.
To work with students. One-on-one to be flexible with your schedule and your kids, aren't back to back because you have to drive to each one. You have time to think in between each session. It's actually kind of nice. It's a little rough in the New Jersey winter, but it really is. If you want to work with kids and you're interested in hearing loss, it's definitely not a bad gig.
Like I really, I think more people should get into it. I agree with you and I work for a. I think it must be similar to what you work for in New Jersey where it's like an educational service center. And we are contracted with multiple districts and serve multiple areas and the teachers of the deaf and hard of hearing that I had the opportunity to work with.
I am always so grateful because. I know I have somebody that I can connect with at the school who is kind of always in touch with the kids and able to let me know, Oh, someone says the equipment is not working. Can you come over here? But I have someone that understands that foundation of why access and technology and listening is so critical for kids with.
Hearing loss in the mainstream setting. And to have there needs to be more of you but we need to like duplicate Deanna. Is that right? You need more ideas, more other people. I also want to just say, I think it's amazing as feel young. Professional and teacher of the deaf and hard of hearing who is furthering the expertise in listening and spoken language.
And we need more people like you out there because 80% of our kids with hearing loss or hearing challenges are mainstreamed and so to have that. Support for the team is really critical to understand. Yeah. I definitely don't feel like, I feel like I have so much more to learn, but I'm glad to kind of like share what I learn along the way.
That's kind of what I. What I hope to do, you know, so I figure things out as I, you know, learn things I'm happy to share them with, with other people. So we so appreciate it. And I am so thankful that you, uh, were willing to come on the podcast. I know I just reached out to you, uh, and you probably had no idea.
And I said, Hey, do you want to be on this podcast? Because I think your information and resources and expertise is important to share with our listeners. So I thank you for being a part of this today. Of course. Yeah. I listened to some of your other episodes. I was like, this is very cool. I would love to do this.
Well, I'm glad you took the chance and decided to become. Um, uh, come on the podcast today and for all of you listeners out there, thank you for listening today. And I hope you learned something from Deanna as being part of the podcast in today's show notes. I am also going to post the Deanna's, um, listening fun, , blog and our Facebook page and yeah.
Her teachers pay teachers length so you can get onto those different links and see all the amazing resources that she has shared with all of us. And hopefully you'll be able to put those into practice with the kids that you happen to be working with. So thank you again, Deanna. Thanks so much. Have a good day. Thank you
This has been a production of the 3C Digital Media Network.

Episode 12: empowEAR Audiology - Dr. Erin Schafer

Welcome to episode 12 of empowEAR Audiology with Dr. Carrie Spangler.
[00:00:15] Hi, everyone. Welcome to the empowEAR audiology podcast. My name is Dr. Carrie Spangler, and I am your host. I am a passionate audiogist with a lifelong journey of living with hearing challenges and there's the vibrant hearing world. Thank you for listening, and I hope you will subscribe and buy others to listen and leave a positive review.
[00:00:38] I also want to invite all of you to visit a Facebook page and engage on the empowerEAR audiology page. Let's get started with today's episode of empowerEAR audiology. I'm really excited to have my friend and colleague Dr. Erin Schafer. Join me for a conversation about hearing a system technology.
[00:01:01] Sometimes we call it FM or DM systems. This is such an important topic to dig deeper into. As we discussed children and adults with hearing challenges, we live in a world that is dynamic and speech and sounds. Hearing aids, bone conduction devices and cochlear implants have come a long way and how they process this dynamic world.
[00:01:24] But there are times when more is needed. So before we dig deeper, I'm going to share a little bit about my guest, Dr. Erin Schafer. So Dr. Schafer, she joined the audiology and speech language pathology faculty at the university of Northern Texas in 2005, and is currently a professor and the director of graduate studies and audiology.
[00:01:49] She received her PhD in communication, sciences and disorders from the university of Texas in Dallas and her research programs and the assessment and rehab of adults and children with hearing loss and auditory disorders have produced over 60 peer reviewed publications, 4 textbooks, national and international podium presentations at conferences and external grants.
[00:02:15] Her current research project focuses on the use of remote microphone technology, and editorial training to improve auditory function and the individuals with hearing AIDS, cochlear implants. Also those who are diagnosed with an autism spectrum disorder. And 2016, should we see the grant from the Texas higher education coordinating board to fund her work with children and young adults with autism spectrum disorder.
[00:02:43] She's the editor Audiology today, the past president and journal editor, editor of the educational audiology association and a board member for the auditory implant initiative. So Dr. Schafer was, uh, one of the 2017 U N T office of research and innovative teaching scholar avoid and the 2013 Cheryl DeConde Johnson award for outstanding achievement in educational and pediatric audiology
[00:03:14] So Dr. Schafer, welcome to the podcast. And thanks for being here. Thanks for having me Carrie. I'm really excited to talk to you today. Yes, I am excited to have you here today. So I was trying to remember how we first met. We met at an educational audiology conference many years ago. In, um, I think he was in Arizona.
[00:03:41] We might've been having a drink and it was very, very hot. I think you might be right. And then we've had the pleasure of before COVID to meet at many other different conferences and travel different places together. Yes. It's been great fun. Yeah, it has been. So hopefully at some point we'll be able to, to do that again so we can network in person.
[00:04:04] Right. I am really looking forward to that. I cannot wait to go to a professional conference again. Yes. So I was also wondering, cause I like to ask the people I interview, how did you get started in the field of audiology? Well, it all started way back in eighth grade and there was this really cute boy and he had hearing loss and he actually did not use spoken language.
[00:04:35] He used sign language. And so I thought to myself, I think I'm going to learn sign language so I can talk to this cute boy. And so I did, and we ended up dating quote, unquote, dating as you do in eighth grade. And, um, what I learned is this, the struggles that he had, uh, communicating with others, and many times I would communicate, um, on his behalf.
[00:05:02] And I came to learn that he really did not benefit from hearing aids because his hearing loss was so severe. And at that point I decided I wanted to be a deaf education teacher. So my undergraduate degree actually is in Deaf education. But during my studies, I realized how much I loved the technology.
[00:05:23] So I had a, this was many moons ago, but I had a little girl with a cochlear implant and I had several kids with hearing aids as well. Um, when I first started out in deaf education, And, um, I really only was in the classroom for less than a year. Uh, when I decided I wanted to go back to school and study audiology because the technology is that we have to work with is amazing.
[00:05:49] And seeing this little girl with her implant grow, um, she was in preschool grow from limited language to being able to say a few words was really, um, cool, amazing and heartwarming. And I just knew, and I love the technology aspect, learning about. Um, the ins and outs of the technology. So that was kind of a long story, but that's how I got here.
[00:06:10] And, um, during my graduate studies, I worked with Linda Thibodeau at UT Dallas, and she also has a love for technology and helping kids and adults, adults too. And so, um, she showed me the world of research and how that can. Um, really opened the doors for many people all over when you publish findings of how different technologies can help people.
[00:06:38] Wow. That's, that's a great, I don't think I knew that about you, um, with the deaf ed experience, but what a valuable experience to bring to the field of audiology. Because we know that kids, um, don't spend their time in the booth and they spend a lot of time at school. So for you to have that one year of experience of working in the schools and then bring it to the clinic and research setting, I'm sure is powerful.
[00:07:06] Yes. It's been really, really helpful. And also to understand that these kids, um, their worlds are big and they're served by all these other people. Um, in the schools and then they're also have the context of their families. And so it really they're little people, you know, they have these whole lives and you have to kind of look at the whole picture to really determine their, you know, the needs that they have.
[00:07:33] Right. So you talked about going back and finding your way into audiology and then into the world of research. So what has been the area of research that you enjoy the most or get excited about? Probably, um, two areas. Really the first one would be cochlear implants. Because, you know, people with severe to profound hearing loss, or either even moderate to severe often find at some point hearing aids just aren't enough speech, especially in challenging listening situations, which I'm sure happened to you, you over time.
[00:08:12] Right. And yeah. And, um, the cochlear implants take work and they take time to adjust, but they are such a dramatic impact. And again, I just think that's amazing technology. And when you can really connect with people and help them to grow with their technology, that is an amazing thing to be a part of.
[00:08:35] And the second area that I really love, um, and it dates back to my educational experiences is remote microphone technology, where the primary talker where's the microphone. And the listener either listens through loudspeakers or even better, whereas something on their ear that, um, is a standalone device or can connect to a cochlear implant or hearing aid.
[00:09:00] And the true benefit of that is that it takes that primary speech signal directly to their ears. Which alleviates all the problems with listening and noise, listening from a far distance and even reverberation in an environment or echoes in an environment. So that too has a very dramatic effect on listening.
[00:09:21] So I think I like dramatic effects on listening, I guess, because, you know, for example, people with hearing aids and cochlear implants, if I have them repeat back sentences to me, Maybe they'll score about 60% wear their hearing aids or cochlear implants alone, but can score up to like 90, a hundred percent when they're using this remote microphone technology, because it really does place that signal right in their ears.
[00:09:48] And of course that's after some use of the hearing aids and implants, but it again, is it dramatically improves performance. It's not perfect of course, because. It helps with one talker and in the real world, of course, there's many times where we're listening to multiple talkers. So it's not a perfect technology, but it certainly does help kind of in, in direct instruction for one-on-one conversations in a noisy restaurant or something like that.
[00:10:20] which I think brings me to a point. From an educational audiologist perspective and working in the schools and trying to advocate for the need of remote technology, a DM or FM system. And. Of course, we need that research that you do, because that is going to give us something to advocate on behalf of the school buying the equipment.
[00:10:51] But another thing that I typically hear from teachers. Is, you know, I talk loud enough. I don't need to wear that microphone, you know, so, and so the student hears me just fine and he's following all of the directions in the classroom. I really don't need to use that. So what can you tell us? So what is your reaction when you hear someone say, I talk loud enough or I don't need to use that microphone.
[00:11:22] I think most of the time. Most teachers don't have ill intentions towards their students. And they honestly believe that when they say it out loud. And so the main thing for me to do is to try and I worked as an educational audiologist for several years and my district was pretty strict about me.
[00:11:42] Having evidence of these kids having trouble, because of course this technology does cost money. So I think trying to look at the kid as a whole, like I mentioned, as a whole piece is really important to not only help the teachers better understand, but also the administrators who, um, hold the purse strings or control the purse strings.
[00:12:06] Um, so I think really taking a look at the environment in which the child is Asked to learn the multiple environments. In some cases, certainly their grades are one aspect, maybe how, um, the teacher teaches in the classroom. So observing that may be actually measuring how that child hears in background noise, that would be typical in a classroom.
[00:12:33] Um, looking at their speech language goals, because many times these kids are working on hearing High-frequency consonants like S F TH, which are very difficult to hear in background noise. So looking at those types of reports, looking at their hearing in general and what they can hear and not hear with their hearing aids or cochlear implants.
[00:12:57] And let's see maybe some questionnaires with the teacher, with the parent, with the actual student, if the student is able to self-report listening difficulties. And, um, again, just trying to gather it, gather information from all angles, other reports outside reports. And then you come down and try to make all of that understandable for the teacher.
[00:13:24] And so what I do is I try to pull from all those sources and then create a summary that says, these are the areas in which this child is really struggling and in his or her educational plan or IEP or their plan. Um, there are these goals and this is how I think I can help meet these goals. And so I don't mean to go over the teacher's head, so to speak, but when I can document a technology can improve specific areas in their educational plan.
[00:13:56] I think the teacher and certainly the child's case manager, um, will be more likely to. Use it or consider it. Do you have any like tricks or tools that you like to use with teachers that is kind of an aha moment for the teacher? Who's like, Oh, that's what they're hearing. Well, definitely. Um, a long time ago, Linda Thibodeau recorded some.
[00:14:23] Some speech and noise. It actually was my friend, Paul Dybala doing the speech, and he's also an audiologist in the field and he read out a passage with, and without remote microphone technology, and he even recorded the passage, you know, close by and then from a distance. And, um, you can really tell a difference.
[00:14:44] And I think it's just such a simple thing. You can even play it from your phone or your laptop during an educational meeting. For an IEP meeting and just show not only the teachers, but the parents, even, um, how much of a difference this technology can make. It's just a simple demo even. And then another thing that I've done is actually let the parents try it out themselves with a system that's more appropriate for individuals with normal hearing.
[00:15:11] So just let them put it on. And I walk around and talk and then sometimes I'll have everyone else in the room start chit-chatting and then, you know, I turn around and walk around, you know, a demo and they really can see again in their own ears, why it might be easier to listen. With remote microphone versus without, yeah.
[00:15:33] Yeah. That makes sense. Because not only do you want the teacher on board, you want the student and the parents on board too. So everyone's sending the same message. Absolutely. It can definitely get tough with some of our older students as I'm sure, you know. Yes. But I think if we, we try to keep the others on board, maybe they can gently encourage their.
[00:15:56] Teens to continue to use the technology that we know will help them. Right. Which kind of brings me to another question that I think is important for our listeners to understand. So a lot of classrooms might have, um, a newer building and all of their classrooms might have a classroom amplification system or a sound field system, or classroom audio distribution system.
[00:16:23] However you want to call it. Exactly but. And then I've had different schools say, well, you know, we have classroom system, so we we're. We're good. So can you just explain a little bit about the difference of between a classroom system and maybe a more individualized system for students with hearing loss? Yes.
[00:16:47] Well, first of all, I think those classroom systems were really designed for normal hearing listeners. So they really only helped to Improve the signal to noise ratio by about five to eight decibels max. Closer to five in general. And so that's really not enough to help kids with hearing loss that really need to hear at a signal to noise ratio of like plus 15 plus 20 decibels where the speech is 20 decibels louder than the background noise.
[00:17:15] So they really were never designed for kids with hearing loss. And I would honestly never recommend a sound field system over a personal system. For kids with hearing loss because those personal systems will connect directly to their hearing aids and their cochlear implants. Again, taking that signal directly to the ear rather than having to travel through the air, um, through a classroom system.
[00:17:41] So it's just not as a direct of a signal. And at one point, even the acoustical society of America. Was not in favor of sound field systems, because while they do increase the signal to noise ratio, that only happens if the background noise level stays the same. But what they were reporting is if you make the signal louder we'll then the kids just get louder.
[00:18:06] So it raises the noise floor, so to speak, um, and ends up not doing as much good as you had hoped because. Um, because the kids, the noise can just get a little bit louder cause the signal did. And so that's another thing and, and certainly two other issues with sound field systems come up when the kids move from classroom to classroom.
[00:18:29] So you would have to have this good system in every class, including speech, language therapy, including PE. So they do need to hear in these other places to music and. All of the different rooms that kids will travel to throughout the day. And of course our middle school and high school students could travel to seven classes a day.
[00:18:50] So it's very, it's better and more individually fit. If we just use personal systems for kids, with hearing loss and even kids with autism spectrum disorder, too, they're going to do better. Even with that system, that sound right to their ear. Over a system that's in the classroom through speakers. Yeah.
[00:19:12] And then the other point, I think that has been brought up with the situation of COVID right now is a lot of hybrid learning where kids need to directly input into a computer. So that gives that option as well. Yes into that situation. So, uh, one other question, um, that I, I do have is you mentioned, briefly mentioned, like, as they get to teenage year, they may not be able or wanting to do, um, Um, or you know, a more individualized microphone at that point.
[00:19:56] Do you have a good assessment tool or anything like that that you like to look at beyond the hearing loss, um, to determine whether or not maybe a different technology might be more appropriate or no remote technology would be appropriate? I think once kids get older, we really. Want to be seen as an ally if possible.
[00:20:21] Um, so there have been cases where I did end up removing the remote microphone technology because the child, we made a deal and the student really came through on the grades and studied hard and was able to, to really do well, honestly, but listening had to have been harder. So it kind of broke my heart a little because I thought, why would you.
[00:20:45] Want to do that, but then again, I'm not a teenage boy, so I don't always understand what's going on. So I think I'm keeping on top of how they're doing, if you have to take it out. And then certainly there are counseling tools that we can use from the Ida Institute that can kind of see where the child's coming from.
[00:21:06] Or is there something else going on that we need to be aware of and share with teachers or parents? Try to most importantly, I try to step back and use empathy and understanding that because it's just such a crazy time in their lives. And so most of the time, I definitely want to try to keep the, the system in their educational plan and daily use and can kind of prove its benefit through speech and noise testing or other questionnaires proving.
[00:21:37] It's not really the problem. It's. Whether or not they choose to use it. So I think to, to get that to happen again, try it to be an ally, um, help trying to help the students see that their future goals even may depend on these grades and maybe using some more counseling techniques would be, would be what I would consider.
[00:22:01] Yeah. And I think your point of just keep talking to them and keep that door open and. Keep introducing them to, Oh, look what just came out. Would you like to try this and kind of planting the seed that way? I have found that with the mask and social distancing, physical distancing, some of my teens have been more willing to try the technology again, because they feel like it's, you know, hearing is impacting them more
[00:22:33] Yes. And definitely the type of classrooms. So I think. The masks have been hard for everyone, but even harder, certainly for people with hearing loss. It's just, um, I'll have to admit that I do have a hearing loss and that masks have really caused me to reevaluate whether it's a rising loss. So it's kind of a hard fit.
[00:22:58] And so I haven't really been a good hearing aid user, but I'm going to have to think about that now because it's been really hard to hear with no, um, with the masks muffling and the no visual cues, right. You realize how much you rely on people's facial expressions or all of that, that the mask a really masking at this point in time, let alone the acoustics that goes with.
[00:23:26] Masking too. So I just have to share just a little personal story about kind of my teenage years and beyond as far as FM technology goes. And this goes back to a long time ago. Um, when, um, FM technology was a neck loop, Um, that went about, and you use the t-coil on your hearing aids in order to get that type of a signal.
[00:23:50] So, um, I did not use any type of FM technology going through my school or elementary and high school. And when I got into graduate school, One of my professors was Dr. Carol Flexer. And so she said to me, if you plan on working with kids and audiology, you must wear an FM system. And so I, at that point in time, it was, you checked it out at the library at the university.
[00:24:24] So I came back and it was a Comtex. I bought them neckloop and it had a little box and I think I had to send my hearing aid back cause they wasn't even like the right MT, or T coil, um, what we had. So we had a lot of work to do, but, um, I will have to say personally, I thought I had got, I obviously got through, um, and.
[00:24:52] Had good enough grades to get into college and that kind of thing. But when I used it for the first time, I didn't realize how much I was missing because I had never heard that way before. And so when I used the FM for the first time, it was almost like. I had a whole weight lifted off of me. I could sit with it in the classroom.
[00:25:18] I could actually go to the bathroom during a lecture and still get what was going on, um, during that class. And. That was the first time in my college career that I got a 4.0 was when I first semester that I started using an FM system, because I didn't realize how much I was missing and concentrating, um, not using one.
[00:25:44] And then having that introduction, it was, it was life-changing for me. And the other aspect, which is hard to measure. And I think hard to report is the fatigue. And I realized at that point in time, how much I was concentrating and how tired I was. And when I started using it, I had all this energy left at the end of the day to do other things that I was missing out on.
[00:26:11] So I think that. Experienced for myself has been a reason why I, from my more personal perspective, I always been an advocate for, um, remote technology or improved signal to noise ratio in certain situations. But do you have any stories like that? Like success stories about any students who, um, have used a system and it's been like a aha moment for them?
[00:26:43] I, when I worked in the schools, they really, a lot of them never had a problem using it or did not want to use it, or, but I think one of the more recent things that happened to me, um, it's not that recent, but you know, when I started doing research in autism spectrum disorder, I was honestly a little bit nervous because I thought I'm never going to get these kids to use this technology.
[00:27:10] But, um, they do. And they will, if you, many of them will, if you work with them. And these are kids with normal hearing, but they have this processing problem because of their autism spectrum disorder. So it was actually a little girl who didn't speak that much at all, but, um, she would talk to her mom some in short words, And I, she was doing a study with me.
[00:27:36] And so they were using a remote mic technology. That's appropriate for kids with normal hearing. And she wore the devices on both her ears. So they were personal, a personal device and they went to, um, They went to Target. And the mom said, this is the first time they've ever been in a store. And the little girl stayed on task and actually helped put things in the cart.
[00:28:02] And she said for the first time in my parenthood, this was an amazing shopping experience. And it sounds so, you know, crazy, but, and then another similar parent, uh, in the same study said that. It was the first time she ever had a conversation with her daughter and they talked about the cocoa, they were drinking the hot chocolate and she's like, she's never had a back and forth conversation with me.
[00:28:27] And this little girl was eight years old. Wow. And she said, um, and because of that, I am just so thankful and excited. And so I think. You know, that's why I love remote mic. Because again, for whatever reason, whether it's the hearing loss or a processing problem, particularly in background noise or even attention problems, we've seen these remote microphones are really helpful when you're in a one-on-one communication situation or in a direct instruction.
[00:29:03] So I think, um, they really have such amazing potential. We've talked a lot about kids, but also in adults. And I really wish they would be, um, standard fit along with a hearing aid because like you, you didn't, I you'd used hearing aids for a long time, but had no idea how beneficial they could be because you just hadn't done it.
[00:29:28] And if we, you know, kind of made it standard practice and said hearing aids for everyday use. Remote Mike for these situations and just explained it that way to patients. I think we'd even have a lot more successful users who will get their hearing aids. Out of the drawer and actually wear them. So, because we know that hearing aids and cochlear implants don't help.
[00:29:52] And I mean, they help always, but they don't always help in the most adverse environments. And that's why people put them away because we don't live in a quiet world. Right? Yes. That's why I put mine away. It's hard. Cause it, it really. Someday, maybe some amazing engineers will be able to figure out algorithms to completely separate the speech and noise.
[00:30:15] But I doubt it because sometimes the noise is speech, so right. It's speech, speech from others, you know, in the background. So, you know, yeah. Hearing aids and implants are so amazing, but they just don't do a good job. but separating speech from background noise. Yeah, maybe you need to get a remote microphone with you as well.
[00:30:40] And maybe that won't be in the drawer. I haven't tried, um, in a few years, but I'll get back to that, but you're right. I should just get the remote mic with it and then I'll be happy. We'll have a little counseling session here. Motivation session. Yes, but I guess I have one other question kind of getting back to your success story with the eight-year-old who, uh, did have our autism spectrum.
[00:31:10] How long did it take for that student to kind of accept the technology? Well the study, most of the studies that I've been doing are with more high functioning kiddos, but I have had some kids that are non-verbal, who will also accept it. Sometimes they don't want to do it when they first come see me in the clinic or for the study.
[00:31:31] But what I do is I try to have loaner devices so that I can explain them to the parents. And let the parents try to put on the receivers at home, which is a much less threatening environment because kids with autism spectrum disorder do not like change. They do not like their routines messed up and they do not like new.
[00:31:53] So if I let them take it home and let them work on it over time. And I've done that as a school audiologist, too. If you're able to loan it to them, to work on, then even the kids, you would never expect to accept it. They will. But other than that, that more high functioning kids that I can explain what this is and what it does.
[00:32:15] And then I like to play a game with them where everyone tries to guess what I said, but I say it right in the microphone for them. So they'll hear it better than anyone else. Um, in a room full of, you know, maybe a graduate student and their parents, um, then they'll win the game. And, um, you know, that works for younger kids and for older kids, even, they, um, are often struggling at school and are willing to try.
[00:32:41] This, this type of technology pretty right off the bat. And especially when I tell them that secret service agents use it. Yeah. That's probably a huge thing where they can be part of the secret service, everything that their teachers are saying. So, um, a couple, uh, just the other question that I was thinking about, uh, we've talked a little bit earlier and right now about.
[00:33:08] The standard, you wish the standard of, um, hearing aids and cochlear implants would include like the remote microphone technology, but it typically doesn't. And like you said, there's always a price tag that goes along with it. Do you have any like advice that you would give parents as, you know, using at home or advocating that way?
[00:33:33] Um, I think one of the ways to do it, at least for children is certainly to let them know that they have the right to request that technology at school and through their educational plan or IEP. And really even if they have to look for educational need it's it should be there. The audiologist is. Yeah, asking the right questions and looking at the right data.
[00:33:59] So I think educating them, letting them know that they need to make that a part of their educational plan, um, is really important. And in many cases, schools will even let the kids take it home for purposes, where they might really need it and they would get, be getting language development and, um, For adults, certainly.
[00:34:21] Um, they can just add another expense. So that is tough. However, with some of the new, um, device specific remote Mics, they're really only a few hundred dollars. So I think that's a good option for an adult. And with many of those devices, they can even connect it. With their phones and things like that that make communication easier and other situations as well.
[00:34:48] And I've seen that with some of my teens now who are getting hearing aids and a new technology, and they might have a device. A specific remote microphone and they're using it too. So I think that's exciting to see. Yes, definitely. So wrapping up, like I thought I would ask you about the future of technology.
[00:35:11] What would you love to see as a researcher, um, be developed, do it or come out with, well, we we've had this before, but I'd like to see it become more mainstream where the receivers for the remote mic are built in. Two hearing aids and cochlear implants so that all they're really having to buy as an inexpensive transmitter or microphone.
[00:35:35] Um, so I would love that to become standard practice and I think. That's a possibility, especially as we improve battery technology, which is another thing I would love to see more, um, rechargeable devices, cochlear implants have become pretty good about having rechargeable options, but it's still not super common in hearing aids.
[00:35:59] Um, particularly those that are power hearing aids. So I think continued improvements. This is kind of engineering 2 engineering requests, me to the engineers for batteries, uh, better, you know, rechargeable batteries for the environment too. And then more built in remote mic and then also continued improvements in signal processing.
[00:36:23] So we talked about that speech and background noise. So, again, this is an engineer request, but, um, that's some of the limitations we have, you know, in the technology and it's the signal processing that's, Developed that the companies develop and that researchers developed. So I think technologies to improve, um, speech and noise.
[00:36:46] And also I'd like continued improvements for music and cochlear implants, because there are a lot of musicians with cochlear implants or people who won't get a cochlear implant because they're a musician. So. That's another area I would love to see continued growth. So hopefully those things happen and that is the future of technology, but I really love how things have become seamless.
[00:37:14] So also just continued, um, improvements. I mean, some audiologists will scream about Bluetooth or a lot of them will. So I just hope the wireless technologies that we're connecting to hearing aids and cochlear implants improve the connectivity improves, and that it's kind of easier on the audiologist and the user so that, you know, we're not always pairing this and resetting this and redoing this and just making it easier, which will also encourage people to use it.
[00:37:49] Right. Yeah. I think that's a huge acceptance piece. So if it's a mainstream technology that everybody's using and I can just steam directly, then that's huge and acceptance of different technologies. So it makes it easier for everyone when you can do it that way. But, well, I just want to say thank you for coming on today's podcast.
[00:38:16] I think this is a great conversation about why hearing aids and cochlear implants. I would always enough and that a microphone is important. Um, in situations where they may be, uh, adverse, um, listening environments that are a little bit more difficult. And I hope our listeners gained a lot from that.
[00:38:36] And, um, Eriun, I can, link up any your information and, um, any maybe articles or, um, Your webpage, uh, to the show notes. So if anybody has questions or wants to get ahold of you, um, they will have a link to your information if that's okay as well. Of course, anyone's welcome to email me any time. And I've had such a great time talking about these things that I absolutely love.
[00:39:06] Well, good. Well, thank you again and thank you listeners for listening and, um, come back next time.
[00:39:18] Hey listeners, this is Dr. Carrie Spangler, your host. I hope you all enjoyed that great episode with Dr. Erin Schafer. We touched on so many important points about hearing technology, specifically, remote technology. And digital modulating systems. Children and adults with hearing loss need an improved signal to noise ratio of approximately 15 to 20 decibels, especially in compromised setting.
[00:39:50] When they compare to their typical hearing peers. I wanted to add a slightly different view as an educational audiologist, as it relates to classroom amplification and my own experience in the school settings wyen a room has reasonable room acoustics and a teacher sets, classroom listening expectation classroom amplification system have provided a positive signal to noise ratio to the classroom.
[00:40:18] For listeners with normal hearing, this enhances the learning and teachers report that they have less vocal fatigue. There are certainly rooms that I have visited that should not be amplified due to poor room acoustics to begin with. As Dr. Schafer noted hearing technology overall keeps providing opportunities to advance research and find the best solutions to use across a variety of settings, as well as for individuals with hearing challenges.
[00:40:52] Thanks everyone for listening to empowerEAR Audiology, and don't forget to wear the mic. This has been a production of the 3C Digital Media Network.

Episode 11: empowEAR Audiology - Janet DesGeorges

[00:00:00] Welcome to episode 11 of empowEAR Audiology with Dr. Carrie Spangler.
[00:00:15] Welcome to the empowEAR Audiology Podcast. My name is Dr. Carrie Spangler, and I am your host, a passionate audiologist with a lifelong journey. Living with hearing challenges in this vibrant hearing world. I've wanted to have an empowering podcast for all of my listeners. Many of us learn and grow by being in communication and connecting with others.
[00:00:38] It is my hope that all of my listeners will learn something new and be empowered after each episode, whether you are a professional, a parent, an individual with hearing loss, or you just want to be inspired. I am glad that you're with us today. I would be grateful if you take a moment to subscribe and give a positive, positive rating for the podcast, also like us on Facebook at empowEAR Audiology and engage in a conversation with each episode.
[00:01:09] A transcript of each episode is available on the 3C Digital Media Network, web page, in the section of podcast. So today I am excited to introduce our guest. Janet DesGeorges . Janet is a published writer, international speaker and co-founder and executive director of hands and voices a movement, an organization dedicated to supporting families who have children who are deaf and hard of hearing.
[00:01:41] In November, she published her very own book titled Not a leader Now a leader. So today's episode is going to be focused on this book, and I hope that all of you will be empowered to lead. And I am certain that many of you will be getting on line to secure your own signed copy of this book. So, um, a couple of other things about Janet.
[00:02:07] She lives in Boulder, Colorado with her husband, Joe, and is a mom to three daughters, including Sarah, who is hard of hearing. She has served on the Colorado hands and voices, um, flagship chapter, uh, for over 10 years. And she has coauthored many different articles, um, and co author different. Chapters and books.
[00:02:31] She serves on many different committees, all over the nation. She is, presented nationally and internationally. And I am just so excited to have her on our podcast today. So welcome Janet. Thank you Carrie. So exciting to be here. I'm really happy to be here and, um, getting, uh, talking about my book and, um, just kind of life and thank you so much for having me.
[00:02:57] It is a pleasure to have you. So when I decided to do. A podcast. Um, back in the summer, I had made a list of different people that I had wanted to interview. And you will add that list. And then last month, when I saw your announcement on Facebook that you had published your own book about leadership, I thought it was the perfect.
[00:03:20] Topic, but empowering people on this podcast. So thank you so much. I have my book right here and I have so much information that I want to talk about today, but I always like to start out the podcast with how we know each other. So do you remember when we met. Yes, of course I have. I have several memories of us.
[00:03:45] Um, like a lot of people I know in my world, most of the time I am, I spend with people at conferences. And so I know we originally connected through a mutual friend, Dr. Cheryl Johnson. And it's so fitting actually that I'm here today to talk about, um, leadership, because Cheryl is a really one of my mentors in my own development of leadership.
[00:04:09] And uh, if I write, if I write a followup book to this first one, I'm going to make sure that I put Cheryl in it because she really has influenced my life a lot in terms of, um, my own leadership. So, yeah, so we met through Cheryl, we've seen each other at. Post-conference happy hour. Good to see you again, or be here with you today.
[00:04:34] Good. I know. And I have to say too, Cheryl has been one of my leadership mentors as well, along the way. So, um, it's amazing how we have that same similar person who has influenced us in two different ways. Really so exciting. So a book, like what. Incredible personal and professional accomplishment. So can you just share with our listeners, what was the motivation behind writing this?
[00:05:02] Well, I like to talk and writing is an extension of having the floor, I think. And, um, I. I think as my, as I, my own career or life in and hands and voices, and as a parent of a daughter, who's hard of hearing it, all. It all began to emerge and kind of grow bait grew based on our family story of raising a daughter.
[00:05:32] Who's who's that hard of hearing. And so. Over the years as my role evolved. And I became involved in more leadership positions. Um, I realized there was kind of a correlation between the life, the journey that I'd had in raising a daughter whose deaf and my evolution of leadership. And I think I, over the years, I've spent a lot of time talking about that journey of family, of raising a child.
[00:06:00] And so my interests. Um, in sharing this book was really being able to self reflect and talk a little bit about, about leadership. And, you know, one of the first quotes I ever heard about leadership that I just this day have like posted in my room is from, uh, Terry Pierce. And he says there are many people who think that they want to be Matadors.
[00:06:23] Only to find themselves in the ring with 2000 pounds of bull bearing down on them. And then they discover that what they really wanted was to wear tight pants and hear the crowd roar. And so I think about all of the skills that I needed to do the job that I have. That, that I needed to grow my skills in and I learned through kind of hit and miss making mistakes.
[00:06:48] And so, yeah, I was just motivated to talk about that part of my life. Yeah. And I have to say like this book I think is, is a perfect book for, um, parents and professionals. And I think I told you earlier that. This would be a great book study, I think would be awesome. we are all So busy, and to be able to have some tool to self reflect on ourselves is, is powerful.
[00:07:16] And so I kind of, when I was going through the book, um, picked out some of my favorite chapters of the book that I wanted to get more information and feedback from you. And I think the first chapter is. Titled the journey starts here. And so do you want to give our listeners just, I mean, I know you kind of talked a little bit about how your leadership journey started, but do you want to kind of dig a little deeper into that and how you feel like you went from not a leader to now a leader?
[00:07:48] Yeah. Um, Sharon, I, I just wanted to add a couple other comments about writing this book. Um, One of the moments where I really decided to write it. I was actually sitting in a room with Marion Downs, who is, I'm sure most of your listeners who have been in the audiology world, know her as a pioneer of newborn hearing screening.
[00:08:09] Um, she lived to be almost a hundred years old and in her nineties she wrote a book called “shut up and live”. And she always struck me as someone who a, you know, like I would think, man, all the other people I know that have. You know, live to this long, you know, have had ailments and, you know, I had to overcome so many challenges.
[00:08:32] Marion, must've just been one of those lucky ones. And in her book, she talks about how she actually had to face all those challenges. And I realized. Kind of from the outside, looking at it, there was so much, I didn't know about her life. And so for me, this book about leadership, um, I mean, one of the gifts that has been given to me and my life is that I'm now surrounded by many leaders who are emerging.
[00:08:58] And that's part of my role I see now is helping other leaders kind of move up. And, um, so I, I just remember thinking when I read Marion's book and I even talked to her about it and she's like, Janet, you need to write a book. So that was kind of like, all right, I'm going to do what Marion says, um, write the book.
[00:09:17] But that was the other motivation is thinking about my own journey into leadership and could it help others? And, and so for me, how I grew in leadership was, was never very, um, Uh, planned out. It just kind of happened over time. I did not go to college and get a degree and in leadership development or public health leadership or anything like that, I just found that our own life and our own life story with our daughter began to put me in positions and opportunities, um, to be a person of influence and, um, And so the skills that I needed to do that, um, I, I grew over time and as I was reflecting on this book, I kept thinking back to the professionals in our family's life when we first started.
[00:10:11] So, you know, like the moment, the audiologists that we first worked first worked with the early intervention provider that I mentioned in the book who treated me like someone who knew what they were doing. And I did not know what I was doing, but that kind of affirmation and, and, um, Uh, confidence that she gave me in my own journey really led to some of the strands of then leadership development over, over time.
[00:10:41] So, um, I, in the end of the book, I talk about just like practical, practical applications of leadership development for people who are listening today, that one to create space in their life and get more opportunity to have. Um, their story influence and, um, you know, one of the things I say is just like, raise your hand and say yes.
[00:11:05] So, so honestly, a lot of where I got from starting to till now is being willing to just kind of put myself out there and say, yeah, all. You know, I'll do that. I'll write an article on, on my family story and I had never really written much before or whatever. So just, just being willing to raise your hand and say yes, I think, I think your willingness to share from where the journey starts is so important for whether you're.
[00:11:35] A parent finding out for the first time that your child has a hearing loss or you're a professional who is just starting out. And like you said, asked to write an article or do a presentation. Everybody has to start somewhere, right? Yeah. And, um, I think, I think we, I think professionals talk a lot about empowering parents.
[00:12:00] Um, to be good parents for their own children, but I think the next level of that is, is as an empowered parent. For my own daughter, it gave me kind of the courage and confidence then to begin to share with other parents or to do parents to parents support. And then, and then ultimately being in rooms with, with people that I, I w initially, I think at times was intimidated by, but over time I had that confidence of being an empowered.
[00:12:31] I know. I know some things, I know some things that are true about raising a child and stuff. And so that gave me the confidence then to, to be in rooms at times where I could be an influencer. For instance in kind of systems change or systems development. Right. And I think that kind of leads me a great segway into another chapter that you have titled what gives you the Right?
[00:12:56] So I, I think the human nature of us sometimes gets the best of us and we doubt. Who we are, especially if we don't have a title in front of our name or, you know, you, your offices and on the 12th floor of a building overlooking the city or whatever it happens to be, but you talk a lot about finding your voice.
[00:13:19] So what kind of advice do you give parents or listeners about finding their voice and having that right. To be a leader. Yeah. Um, I think for me in particular, I found myself in circles that, um, that, uh, a lot of other people, um, looked at their own influence based on their, um, academic degrees. And so, because I was a high school graduate.
[00:13:49] Um, being in those circles, I'll just give you a couple examples. As I began to speak and attend different conferences, sometimes I would be honestly with all PhD presenters. And so I know one time the, um, the conference put a Dr in front of my name. And so, you know, of course I immediately sent that to my mother.
[00:14:10] I'm like, Hey mom, you've got to call the Dr now, but I emailed them. And I said, I'm not a Dr. And they would not change it. It was like, For some reason, their perception of my value must have an academic. Academic title next to it. And then another time I, I spoke and I came off the stage and two people came up and asked me where I had done my graduate studies.
[00:14:34] And I said, I don't have a college degree. And literally they wouldn't believe me. They were like, Oh no, that just can't be true. You know, tell us. And so for me, that's been an interesting experience, um, to, to, um, not just, not just have the confidence to be in that, but to understand that. And for those listening today, to understand, particularly for us as parents, the, our voice in terms.
[00:15:01] Of of what our role is in, in the systems that serve us as parents, that our expertise is just as valid, whether we have that expertise from a college degree or from life experience. And so I think for me, that's because I, I was really blessed and able to kind of move in circles where often I was the only, literally the only person in a room that did not have.
[00:15:28] A college degree. I just had to learn over time that, that, that did not equate to my value of being able to give input. And so, um, I think I've, and in fact, You know, for parents who go to advocacy or, you know, like parent advocacy courses, they always say like, don't ever just say, you're just the mom. And I talk about this a little bit in the book and, and, um, you know, and sometimes I would, I would say that and people would correct me and I, I know what they were trying to do.
[00:15:57] They were trying to. Say that you have validity, besides that being a mom gives you validity. So I liked that, but I actually now over the years, people will say, you know, you should just go ahead and get your degree, you know, get a college degree. And I'm like that I would totally lose my street credit with all the other parents.
[00:16:18] Just a mom is a badge of honor. Now I liked that. So I just. I just stay in that sweet spot. And I think for people who, who are trying to find their voice to say whatever it is, whatever life experience has given you, that is your street badge, you know, and if you can begin to articulate and think about how, what you know to be true can help other people.
[00:16:43] Um, then that's where you, I think you begin to be able to have a voice and speak into other people's lives. Yeah, I think parents are so empowered to hear stories like yours when you, you're not just a mom. I mean, you are just a mom, but you're not just a mom. You're you are Sarah’s as mom who is, has a huge voice for her.
[00:17:06] No matter. You know, what meeting you happen to be at and what titles you happen to be around. So it's, I think important for parents to realize that they are a important part of that whole process and they can be part of that system change too. Right? Yeah. Um, I wanna, I wanted to add one more thing in terms of being able to.
[00:17:29] Find your voice, but, but so that it has purpose. Like I remember once, um, speaking at a conference and I, all I was asked was to share our family story of identification and early intervention, and they introduced me and. And I spoke and I came down off the station. That's mom came up to me crying. And she said, when they introduced you and said, you were going to tell the parents' story, I just rolled my eyes and said, come on, bring it on like theirs.
[00:18:02] And she said, everything you said, I felt too. And that, that, that, and so I think being able to, so that's what I'm trying to do about leadership, which is. I know there are a lot of people out there in roles and positions that are going to require some leadership than you. You have got to be able to, um, to grow your skills so that you can be an effective leader.
[00:18:30] And so for me, that's what I've been trying to do in this book, as well as. I think it's a good book. Isn't me telling you things you don't know, you don't know. I have a feeling Carrie all your places in the book where things that you already know, but probably resonated with you to some degree and maybe affirmed and maybe gave voice to, Oh, I felt that before, but I've never really been able to say it.
[00:18:54] So for me, that's what some of my goals and talking about leadership with others is, is you, you know, some of the things that you need to do. Um, in terms of leading, but I'm, I'm hopeful that some of the things in this book just give words to that. And I think they do. And that's why I do have a lot of that marked because they did resonate a lot with me and I could see parents.
[00:19:19] You know, a small group of parents getting together and reading a chapter and reflecting on that and sharing those stories together, or professionals too reading that and, and being able to reflect on that as well. One of the reactions for the journey starts here is when I read your chapter, I felt that my mom probably had the same feeling that you did.
[00:19:45] About like, why me? Why is this happening to me? And I think in the chapter, you had mentioned that Sarah, um, really, it didn't phase it, right? This was just part of every day. This wasn't, you know, it, it really didn't impact her the same way it impacted. Mom. And I know that when I wasn't diagnosed till I was four, and I remember getting my hearing aids and I thought it was exciting because I'm the center of attention and you know, this is all about me, but.
[00:20:17] Talking to my mom, this was a very hard thing for them. So it just kind of that perception. But knowing that they were, she had to be the leader in my life, um, in order for me to grow up and have confidence in myself. So that, that was what kind of stirred emotion in that chapter about the journey starts here.
[00:20:38] But you talk a lot. I think that's a good segway into connecting with others. And you talk about being vulnerable. And telling your story and then how that helped you, um, as a leader to connect with others, um, and get other people to maybe jump on more kind of a system change, but jump on the bus with you per se, and those who might.
[00:21:03] Not have been on your bus. Um, how do you kind of get them to at least come closer to that door of the bus? Um, can you talk a little bit about the importance of connecting with others, maybe from I'm already on your bus too? I'm not on your bus, but how do I kind of work with you? Sure. I it's funny.
[00:21:24] Cause I, I think over the years where I had the opportunity to start telling our story, Um, was in professional circles. So, um, so this question and thinking about connecting with others, um, for me, it's about how do I get someone else to listen to my experience in an open way and not in a defensive way?
[00:21:47] So I'll tell you. Um, I remember sitting in a meeting full of physicians and they were touting medical home and they were talking about the five areas of medical home and accessible and all this. And I just remember what was bubbling up inside of me was my story of me going to our pediatrician over and over again and telling him we didn't think there was something going on with Sarah and he wasn't listening to me.
[00:22:16] And, um, can you imagine, like if I, so I, I. Aye. So that's an example of, I have to be able to take my story in a way that others can hear it. And so it's not just like the sandwich approach, which is like compliment someone and tell them what they did really badly. You have to be able to let them experience the moment with you rather than from their point of view.
[00:22:44] But if I'm not acknowledging their moments. So like, if I'm saying the doctor had his hand on the door and right when I was getting to the most important thing I needed to say to him, he was getting ready to leave. If I, if I, in a conversation with physicians, don't acknowledge their world and what their life looks like, there's no way that they're going to be able to hear me to say the most important moment in my, in my meeting with a doctor is at the end.
[00:23:14] When I finally get up the nerve to ask a question, Um, I need to know that they're present. And so I think for me, that chapter resonated with me about being able to share, learn and hone my skill of storytelling because, you know, I think you'll the book is, uh, most of the times I just tell a quick little story and then make my point and then I'm off.
[00:23:37] So, for me being able to influence others so that they're on the bus of like, Parents centeredness is a lot of work that we're doing at Hands and Voices, which is we want the system to work from our point of view. We have to then let those who are, have power and control in this system. Be motivated to make sure it works from our point of view.
[00:24:00] And I believe that's by really being able to connect. Connect with others, you know where they're at. So, um, I think storytelling is, is a big, a big part of that. And I did a presentation once for audiologists. I'll just, I'll be good, the bad and the ugly. And, you know, I think just however, we're all, we're all made in different ways.
[00:24:20] For me, connecting with people is. Is, and I think you're like this Carrie too. Like if you're, if you like being with people, like I really enjoyed people. And so I always like to feel like whether I'm on a stage or just one-on-one, that I can just find something in common with someone and then speak the hard things sometimes that people need to hear.
[00:24:39] So I think that's what that. Chapters did about that. And I think the storytelling is so important and I know you do it so well too with sharing. Like this is my story. This is my journey. It might be different than yours, but. Let me share what I've learned and hopefully someone else will benefit from it.
[00:25:03] Or they'll be able to add another perspective that you haven't thought about too, which I think is, is important. And I'm always willing to share my story too, with families or professionals. And I have learned over the years to really state like this is my journey. These were The choices that my family made for me and this, and whatever choice you make for your child is, is the right choice for your family.
[00:25:32] But I think the art of storytelling is so important just to find that common ground, um, and be able to embrace that too. So one of the other, um, topics that I think is hard and you're talk about. Overcoming adversity too. And you. Kind of in this chapter, you share with the readers and I'm going to quote you here that embrace adversity It will make you stronger. It may be the very thing that leaves you to a life of leadership. So I think, wow, that just resonated with me in my own life. But I know I would love for you to share more about how your own thought of adversity really. Put you into Not a leader Now a leader. Um, I'm glad you quoted me or it might've denied that.
[00:26:27] I said embrace diversity. It is so hard. In fact, I remember when I was writing that, that particular chapter, I was going through some really internal struggles and I think. Um, around my own leadership. So, so whether in thinking about your leadership, whether you're, um, like for me as an executive director and managing and running an or larger organization with all the pressures and, and, um, and my relationships with our board of directors and our staff, when, when I, when I think about embracing adversity or overcoming adversity, what it, what it really means to me is having the courage.
[00:27:09] To do the thing that I know needs to be done for the organization. And the courage that I need is to get past, um, the, the difficulty in facing that. And so for me, Um, one of my personality, strengths or flaws, I like to be liked by other people. And so I, when I have to make a hard decision as an executive director, I cannot make that decision based on whether people are going to like that decision or not.
[00:27:45] I mean, I can do all the things in the world around me to make sure that I have. Buy in that people are part of the decision, the conversation, but, but when you are in leadership, what that means at times is you have to make decisions that are tough. And so for me, embracing adversity is I knew that that the situation I was in was in a situation I had never been in before.
[00:28:10] And I had to have the courage to do the right thing. And so, and, and, um, if you don't. Your organization is going to fail or that the, the thing you're trying to influence or change is that if you get distracted by, um, by being sidetracked by how it's affecting you personally. So for me, embracing adversity is really hard.
[00:28:31] I do I talk about it or write about it, but it is, I think it's hard for all of us. Right. But I'll tell you the satisfaction of doing, doing that right. Thing is, especially when you know, The thing that you love and have a passion for is going to be healthier. So in my case, our organization, then, um, then I think, um, it's where you learn.
[00:28:57] I, when I've had to face adversity, it's typically in places I haven't had to face it, you know, things I've had to do before that I haven't had to do prior to that and, and learning and growing in that, um, Yeah, it will read, it will read benefits and then it gives you confidence really for the next time you face adversity, like I can do this.
[00:29:17] Like I had to face this last year. I can, you know, I can do this next thing, which also kind of takes you into that chapter of how to not take a selfie. And I love that title too, but as leaders, like making sure that you're staying focused on what matters and, and. What you just talked about facing adversity and making a difficult decision or a courageous decision, because it's the best for the organization or for whatever your mission or purpose happened to be as, as a leader or an organization.
[00:29:55] But how did you instill that type of, I guess, um, competence or trust and. The organization and the people that you work with or work for, or who worked for you. Um, so for those of you who haven't read the book yet? I, in fact, I, for a while, I, it took me a while to publish his books. I kept changing the title of the book and I actually wanted it to name it, how to not.
[00:30:27] How to not take a selfie and other life lessons and leadership. Um, so I think one of, you know, I, I know that I have a gift for storytelling. I also like to move through my life and think about what's going on. And sometimes I'll have like, Oh, that makes me think about this. So in that particular case, I was out.
[00:30:51] One day, I was going to take a picture of these beautiful lit trees. And, um, I was up in the mountains and, and I just thought, Oh, I'll take a selfie. And I don't really like doing selfies, but so I put myself in front of the camera and the tree, the beautiful trees were behind me. And, uh, and then right at the last second of my friend always said like, do you want to look thinner and younger?
[00:31:14] And shouldn't have cameras held up high. So in the book, there's a picture of this terrible picture with me and my thumb and you can't even see the trees. And, and, um, I just remember thinking about that experience and how in leadership, how easy it is for us. To get distracted from what, what is the important thing?
[00:31:37] And, and this is another thing I learned in my life journey of raising a deaf daughter in the area of education, which was we at hands and voices. We train parents to be strong advocates for their kids and education. You know, we often say, Do you drop your child off at school in kindergarten and expect to pick them up as, you know, graduate in high school, having a strong academic success without your involvement, you need to learn advocacy because we just said you have to do that, but.
[00:32:09] But ultimately I learned over time as I became a really strong advocate for Sarah at that, even if that wasn't the goal, the goal was for her to be a strong self advocate for herself. And that's something that I learned, that it was not about me. And so when I. I take that lesson that I learned in advocacy.
[00:32:32] And also as an educational advocate, I've attended, I think about 70 IEP meetings with families. And I learned in those rooms too, that it wasn't about me winning the moment against a special ed director who did not want to provide access to a deaf child. It was, um, it was about ensuring that that child got the services they needed.
[00:32:55] And so in leadership, we have to be able to make sure that we stay focused on what we're trying to achieve. And part of that. Is letting go of the need to be, to get the credit for what, what you're, you're trying to accomplish. And just let to know that what you're trying to do isn't in the end, trying to be a leader, you're trying to accomplish something that's strong leadership skills will get you there.
[00:33:24] So. So, yeah, that's that, um, that little story of the selfie and maybe, maybe my next book, all title outside on that. But I told someone that I was going to name for that and they're like, people might be confused. It's a photography book. So I decided not to do with that. And when I did finally named the book, I, Oh my gosh.
[00:33:46] Like I said, I had gone through a few titles and. I remember sitting here just going, Janet, what is the point of all of this? Like I and I remember thinking, well, I wasn't a leader, and then I became a leader and that's how it kind of, I am Not a leader. Now, a leader kind of, kind of came to me because I do believe that leadership, you have to, you have to desire it.
[00:34:09] You have to build your skills. You have to read good books. You have to do more than just life experience. You really have to apply. Um, yourself to it, and you have to surround yourself with other leaders that you admire descending, you will learn. And we talked about Cheryl in the beginning of this. I just remember seeing her in moments, um, in committees of.
[00:34:33] That, where there was, um, you know, kind of a lot of conflict going on on how well she managed that. And I just remember learning from those experiences. So yeah, I think all of those, and I think your point about the selfie and being distracted, sometimes there's, I've had a book in and I think it was called the best.
[00:34:54] Yes. But there are some things that we have to. What is your best Yes?. At the moment, so that we're not getting distracted by other things that happened to be going on too. So I think that's that important. We get distracted sometimes. So we just kind of do go on every day with everything that's going on and was so busy that we lose track of what is out of focus and.
[00:35:18] What I'm doing right now, is it moving the organization or my leadership or whatever forward. And I, I have to think about that sometimes. And when I, what I say yes to, because we could say yes to a lot of things, right? You talked about that earlier. Um, and sometimes at the beginning, it's important to say yes to a lot of things,
[00:35:41] Wow That's a really good point. I don't think it was in my book. I'm going to put it in my next book, which I really like, it's not. Just about, um, getting distracted with your own self, but distracted with the other things that might be good, but not best, especially in terms of our Workday. You know, I'm sure like, like a lot of us in our organization, we really struggle with saying no.
[00:36:06] Anytime anybody requests, anything of us, both personally and organizationally. And you're right. If you don't keep focused on what you're trying to accomplish by keeping the most important activities on your plate. Um, then you can get distracted. That's a really good point like that. Yes. So just, I wanted to end with, um, the ripple effect.
[00:36:31] I loved that as well. And you talk a lot about. Anna, um, and your daughter, Sarah, and the whole mentorship, but can you just share that story? Because I think it really comes full circle of what a leader is and how you have developed a leader in your daughter, just by who she is. I I'm happy to. And I also have one more, that's more on a personal level.
[00:36:59] I'll share too. And I apologize for any listeners today who have heard me speak at conferences. I have told the story of the Anna a lot at the end of the presentations, because it does represent for me kind of what we were talking about earlier, too, that in terms of like my own life journey with Sarah was.
[00:37:19] Of course it's about me and, and our whole family together. But in the end it is really about her. And so this story is about Sarah. When she was in high school, her, I love it because it's her, one of her deaf ed teachers that knew her from, from a very young age and, and was there to support her through her whole school years.
[00:37:41] And then ask Sarah, would she be willing to mentor, uh, another little girl in our school district who was, I think about eight or nine years old. So they set it up and Sarah went over once a week to the class and she volunteered in the class and she. Met with Anna. And she would come home after those days and I'd always say, how'd it go?
[00:38:02] And she's like, I don't know. I don't, I don't really seem to be making a difference. She's just kind of blahzay about it. And then one day she literally came like bursting through the doors at home. And um, she said, mommy, mommy wouldn't believe what happened today. And she'd tell the story that she walked into the classroom.
[00:38:18] And she looked around and she looked over at the teacher and said, where's Anna. And the teacher looked at her really strangely and said, well, she's over there at her desk. And Sarah looked over and Sarah said she had, she hadn't even noticed her because every time she'd been into that class, Um, for the weeks or months up to Anna always kept her hoodie up and she was embarrassed of her hearing aids.
[00:38:43] And that, um, that day Anna was sitting at her desk. She had her hoodie down, she had her hearing aids showing and she just had this huge smile looking straight at Sarah. And, um, I, and Sarah was just so excited that she Sarah had said that she just kept every week. She would just go in and talk to Anna and tell her it's okay.
[00:39:06] You can be proud of who you are and your hearing aids. And it just meant so much to her that, um, that Anna finally received it, you know? And, and where did Sarah get that from? That, that feeling of confidence as a hard of hearing person and showing her technology? Well, it probably got that from me as her mom.
[00:39:27] And where did I get that from? I get that from deaf and hard of hearing role models in our life and the professionals that helped us understand, you know, the empowerment of that. So that's kind of the ripple effect of the work that we do. We do, whether you, as a leader are going to, um, end social injustice and racism in our world, which I, I believe there might be a listener today who has been called to do that.
[00:39:54] Um, or whether your impact, your ripple effect as a parent in what you are giving to your kids day in day and day out, know that you're going to have a ripple effect in not only in their lives, but then who they will come. Become in their lives. So yeah, that's, that's my story of Anna. I love that story because it, I think I listeners and parents and professionals need to realize we all need to realize that it doesn't happen overnight.
[00:40:28] Right. So Sarah was in high school and she had this ripple back, but look at all of the steps. Little ripples along the way that you played. And the other people played in her life in order to get her to the point where she felt confident about sharing with someone else and making a difference. It came full circle, which is so fun.
[00:40:55] And the joy that we get from being a leader or.Doing what we're passionate or purposed to do. I would encourage your listeners, to think about the own, their own stories in their life or encounters or moments that they're having with their own kids or professionals across from the parent. And, um, and in moments that we recall or remember that are really profound for us to say, can the sharing of this story impact impact others?
[00:41:25] Cause I, yeah, cause I think the ripple effect. Was not just between me and Sarah or Sarah and Anna, but now being able to tell that story and others understanding the power of that. So, and so what is, does Sarah do any of these wonderful leadership passion that you have as hands and voices, executive director that she has?
[00:41:48] Has your ripple turned into her ripple at all? Um, Sarah, you know, it's funny now that she's an adult, um, you know, in the old days I, I would pick her up from school and she'd be telling me something happened at your mom. This is going to end up in one of your presentations, isn't it. And so now as an adult, I'd love per se.
[00:42:10] I would love for Sarah to be able to answer that question. And in fact, on our, on our hands and voices website, we have interviews of deaf, hard of hearing adults. So Sarah actually talks in her own voice about. About that journey, but I will say this. Yes. I, I can see, um, in, in terms of her deafness and who she is as a deaf person, I love who she has become.
[00:42:37] Um, she is now my teacher and she also is the one to self identity who she is and in this life's journey. And I think the thing to answer your question, she has. Such strong confidence in who she is. She has a lot of, she has taken a lot of courage and, um, to do her, the thing that she loves. Um, right now, she went to college and got a degree and worked in an area for a couple years.
[00:43:09] And then I remember she called us the mom. Remember, I always told you I wanted to be a hairstylist. I'm moving back from Seattle to Boulder and going to cosmetology school. And today she works in a very high-end beauty salon. Um, and she's doing great. She loves it. She has a passion for it. And. You know, I often she even talks about that particular setting.
[00:43:32] I mean, you can imagine the background noise and the lip reading and, you know, what's even going on now with the ability to lip read and different things. So, um, yeah, from my point of view, she's living a life of, um, of confidence in kind of, um, you know, uh, seeking after her passion. So. That's awesome. Yeah.
[00:43:56] I wanted to share one more story. I would love to hear one more story. This isn't really about my book. Um, but this is just about our own family, um, that when we talk about coming full circle or the ripple effect of raising a daughter, who's, who's deaf. We were standing in the kitchen. Um, our family and Sarah was there and our middle daughter, Danielle, who was about nine months pregnant.
[00:44:26] And we were chatting about, um, her, um, delivery experience, um, at the hospital. And you know, about when we would get to the hospital or not. And, and, um, I said, look, If we miss the birth, don't worry about it, but just make sure you don't go do the newborn hearing screening till we're all there. Just joking.
[00:44:50] And we're laughing and Sarah here's Danielle, you know, totally. And about us bursting at the scenes and she looks over at Sarah and she said, wouldn't it be great if I had a deaf baby? And for me, that encompasses is the full circle in our family of the joy. Of this journey. And I think, um, for, for professionals who are working with families, for families who are experiencing this journey of the full circle of, um, I know in your podcast, your, and your first podcast that you did, think everyone should listen to, they haven't been talking about purpose, kind of what is the purpose of all of this?
[00:45:38] And so. You know, for me, even my book or the, or the leadership journey is, is a side trail to what we're all trying to do here in this particular field, which is to raise independent, strong, successful, and fulfilled deaf adults with a holistic sense of this and sort of the joy, you know? And so I've, I still love that, that moment to this day, when, when being deaf in our family was.
[00:46:09] Viewed and seen as a positive thing. Yeah. And I think it does come full circle, but it takes, I think, appreciating adversity and being able to come to terms with that. And for me, I think. What people view I used to be as my greatest adversity, became my goal strength and became my purpose. But it was because of the support I had and the connection that I had with other people who have helped me along the way that got me to a point where I could feel courageous, vulnerable about storytelling and sharing my story and actually.
[00:46:56] Having that ripple effect with other people in a positive way. Yeah. That's good. Maybe that'll be the name of my next book, the ripple effect. But my third book is going to be let go and it's time to leave.
[00:47:13] Yeah. I, at some point leadership is developing others around you so that they're leading in the next generation. That's what I love right now in my work is that I'm, I am surrounded by parents. In my particular case, the parent leaders who are, have a passion to ensure that families have the resources, support and information they need so that their kids can be successful.
[00:47:40] And that's what really gets me going these days is, um, you know, passing, passing that torch, um, the leadership lesson, I’ve learned stuff. And this has been an amazing conversation. I think we could probably go on forever, but I think our listeners are probably thinking, where can I get this book? And I want to have a book club, a book study and think about, and reflect about my own leadership and where I can have a ripple effect.
[00:48:10] So where can people find your book? Thank you, Carrie. You can go to www.janetdesgeorges.com. It's just my first and last name. It is not available right now on, um, on, uh, Amazon or anything. You just order it directly through my website. And I have been thinking lately of putting, uh, um, a book club guide on the website.
[00:48:35] So Carrie, you asked me such good questions today. So if I can steal some of your questions, all put together a little guide and put that up on the web, the website. I do think it's a great. A great conversation book. So yeah, I hope if you're listening, you'll order it and enjoy it, share it with others. Um, yeah.
[00:48:55] And let me know how. I like it. I loved it. I genuinely loved it. I read it in a few days, and like I said, I have post-it notes all over it. And I think I will, um, wrap my two colleagues into doing a book study with me. I think they would enjoy it very much, but Janet, I want to thank you so much for taking the time and coming on to the podcast today and, , sharing the book and sharing your story as well.
[00:49:28] Um, so thanks for joining us. Yeah, thanks for having me Carrie and yeah. Continue. Good luck with your continued work. Um, and these podcasts. They're awesome. So thank you listeners for listening today and please like us on Facebook and, um, share with anybody else that might want to listen. Have a great night.
[00:49:54] This has been a production of the 3C Digital Media Network. .

Episode 10: empowEAR Audiology - Dr. Beth Walker

[00:00:00] Welcome to episode 10 of empowEAR Audiology with Dr. Carrie Spangler.
[00:00:16] Hi, everyone. Welcome to the empowEAR Podcast. My name is Dr. Carrie Spangler, and I'm your host. I am a passionate audiologist with a lifelong journey of living with hearing challenges and this vibrant and hearing world. I just want to thank all of you for listening and I hope that you will subscribe that you invite others to listen and leave a positive review.
[00:00:39] I also want to invite all of you to engage on the empowEAR Audiology Facebook page. So let's get started with today's episode of empowEAR Audiology. As educational audiologist. One of the words that I really have a problem with in our profession is the word mild. And if you'd look up the word mild in the dictionary, you will find that.
[00:01:04] Um, as it relates to illness or pain and it's described as not serious or not dangerous. And I feel like this description has significant consequences. If we equate mild hearing loss as not serious. So today, um, the podcast, I am really excited to have Dr. Beth Walker with me. And I'm going to tell you a little bit about Dr.
[00:01:31] Walker before we get started. So Dr. Walker is an assistant professor and the department of communication, sciences, and disorders at the university of Iowa in Iowa city. Iowa. And she's the director of the pediatric audiology lab. Her research focuses on pediatric aural habilitation, specifically examining factors that relate to individual differences and listening and language outcomes for children who are deaf or hard of hearing.
[00:02:02] She is an investigator on a number of research projects funded by the national institutes of health, including the 10 year longitudinal investigation. The outcomes of children with hearing loss study, she has authored over 50 peer reviewed publications and coauthored a textbook on pediatric amplification.
[00:02:24] So it is my honor and pleasure to introduce to all of you, Dr. Beth Walker. So welcome. Hi, thank you for having me could see our faces right now. Cause we have these giant grins on our faces and we can see each other.
[00:02:49] exactly. Yes. So
[00:02:56] So how we met. So we were in Florida, it was the educational ideology association and they had this little, it wasn't Cheryl DeConde Johnson had this little, it wasn't a conference. It was like this little mini meeting before I remember that. And I can't remember where we were in Florida. I remember it was super hot outside and I was, yeah, it might've been.
[00:03:20] And we, so we were at that meeting and I that's where I, that's where I met you the first time. Cause cause then honestly I remember that we went to the bar afterwards
[00:03:36] each other a lot better. I only came for that day. I didn't stay for the conference. I just came for that little meeting that one day. Okay. We're off each other ASHA and Memphis, right? That was another one. Oh yeah. That Memphis one. Yeah. And then I got to bring you to Ohio and then I got to come to Ohio last year.
[00:04:04] Pre COVID. And then I was supposed to be in Ohio this fall too, for the, Oh, I don't remember what it was for. I knew I was supposed to be in Ohio. Um, and I think that got bumped off to next year. Something I can't remember. Sorry, we'll be back in Ohio again. So, because we will get connected again, for sure.
[00:04:27] So I have another question for you before we kind of dive into that. The meat of the podcast, but could you tell all of our listeners how you actually got started into the audiology? Is it a good story? I wondered if you'd asked me this question. So I don't know if it's a good story. Like most people, I kind of fell into audiology.
[00:04:49] It was not like I dreamed of being an audiologist when I was a little girl, but what I. tell All my students was I actually, when I was a little girl, I dreamed of being a detective and an author. And my favorite things were Nancy Drew mysteries. And so I loved reading them and I wanted to solve mysteries and write books.
[00:05:10] And then I got to grad school realize that was not really a very good or not grad school. Undergrad realized that wasn't a very good career plan. Um, so I went into psychology instead, and then from psychology, somehow fell into speech pathology and audiology. Um, I think what actually happened was I was in psychology.
[00:05:29] I knew I wanted to go into more of a healthcare field and somebody on my dorm room floor was like, If I don't get into pharmacy school, I'm going to be a speech pathologist. And I thought, Oh, that sounds cool. I'll try that too. Cause I knew I didn't want to stay in, I didn't want to be a psychologist. So I ended up going into speech path and then kind of like what happens with a lot of people.
[00:05:53] I was taking the communication sciences and disorders classes and got really interested in audiology. Um, through that, even though I thought at first and with me, the thing was, um, I honestly couldn't decide if I wanted to be a speech pathologist or an audiologist. And in the back of my mind, I still wanted to be a detective and an author.
[00:06:13] So what I ended up doing was, uh, getting dual certification. I'd never made a decision. I just became, I went to grad school for speech path and audiology. I did. Two CFYs in Indiana. So I was, um, I went, I worked at Riley children's hospital and did a CFY and speech pathology then audiology, and then ended up getting my PhD , which is where I was able to become.
[00:06:38] It sounds corny, but that was where I was able to become a detective. And. A writer. So I really do feel like that's what I do. Like, I feel like it sounds, it's so cheesy, but I feel like when I'm doing research, I'm really like, kind of, I've got all these facts and I can put together this puzzle. And that's what I love about research and I still get to do the writing aspect of it, but I get to do it in this field that I think is super cool, which is audiology and speech pathology.
[00:07:07] Exactly.
[00:07:11] Just, um, I think we're speech pathology and audiology really overlap so much. So it's great to have both perspectives with all of your research. Yeah. And that's why I am really glad I ended up doing both because what I'm really interested in is how hearing loss impacts listening and language and reading development.
[00:07:34] And so I feel like if you're going to be a good pediatric audiologist, you need to understand the language. Out of things. And if you're going to be a good speech pathologist that works with kids, with hearing loss, you need to understand audiology. So that would not, I wouldn't recommend nowadays the dual certification, because it would just take too darn long, which is unfortunate.
[00:07:56] Yeah. So one of the things that you have been very involved in, and I didn't realize it until I've read some of the bio is the Outcome for children's with hearing loss study for over 10 years now. So can you tell our listeners a little bit more about how you got involved with this study? So this was just.
[00:08:20] Actually, I was kind of in the right place at the right time. So I was working, I was finishing my PhD. I was probably a year away from finishing my PhD and I was working as a speech pathologist on the cochlear implant team over at the hospital. Yeah. At the university of Iowa and I was actually doing, um, I love doing transcriptions like phonetic transcriptions, which sounds really weird, but I just think it's kind of fun.
[00:08:44] And so somebody was actually Bruce Tomblin. Who's a professor here at Iowa was paying me to do these transcriptions for him. And so I happened to be down in his lab one day and his project coordinator looked at me and she was like, Hey, you're an audiologist too. Aren't you? And I was like, yeah, she's like, Oh, we have this new research.
[00:09:02] grant call the outcomes of children with hearing loss study and we need an audiologist for it. And she handed me the job description and I looked at it and it was like, I think I looked at it for like 30 seconds and I was like, this is what I want to do. This was my dream research project to be involved.
[00:09:23] Because it was looking at children with mild to severe hearing loss. It was working, it was a multicenter study. So it was working with people at Boys town National research hospital, and University of North Carolina. And it was all these people. I kind of knew. That honestly, like some of them, I had academic crushes on like Mary Pat Moeller.
[00:09:42] Yeah. But I didn't know him really well. And so I, but I knew like this would be such a cool job to have, because I get to work with all these people that I had really admired. Um, also at North Carolina, um, uh, melody Harrison was somebody at North Carolina and she was another person I just looked up to for such a long time.
[00:10:00] And so I think I went home. Um, and I told my husband, I'm like, okay, I'm changing jobs. I'm going to take this job. They hadn't even offered it to me, but I was like, okay, this is what I want to do. And so that was how I fell into it. It was real literally, like I happened to be in the right room, all the stars aligned and cause they had just, I think they just started the funding for the project.
[00:10:25] And so that would have been in 2008. So actually we're going on now? 12 years of the study, we didn't start collecting data till 2009, I think. But yeah, the funding started for the grant in 2008. Wow. And it's such a, all of the research that all of you have done has been so instrumental in everything that we know now as audiologists and educators and those working with kids with hearing loss, um, but kind of going back a little bit to 2008, what was.
[00:10:59] One of the main question that you and your team and the researcher has had, um, for going into this study? Well, the main thing was, um, there was a lot of research out there on children who are deaf children who use cochlear implants. And we really didn't know very much about children with mild to severe hearing loss, particularly, uh, what we call the current generation.
[00:11:23] of kids, kids who were born after 2000, who had access to early intervention, um, were identified at fairly young ages, um, had been fit with hearing aids. We didn't really know if those kids were able to keep up with their same age hearing peers, or if they were showing delays in terms of their language skills.
[00:11:44] So, and we also, it sounds weird. I always say this when I give talks, we really didn't know what the effect of hearing aids were on outcomes, which sounds stupid. Like we would really hope that hearing aids would make a difference, but we didn't, we honestly didn't have evidence for that because. Almost all of the research studies that have been done in the past, past on children who are hard of hearing, hadn't really described the hearing aids very well.
[00:12:10] So it didn't that we would say, okay, there were 20 kids in this study. Some of them had hearing aids. Some of them didn't, it wouldn't say anything about how much they wear their hearing aids or how well fit the hearing aids were with the audiologists. You using real ear measures to program and fit the hearing aids
[00:12:29] And so those were the questions we really had are the kids able to keep up with their hearing peers because we knew they were pretty much all using spoken language and they were pretty much all in regular education settings. Um, and then, um, what impact did the hearing aids have on, on there Success. So, and what made some of these kids?
[00:12:49] We knew there was going to be lots of variability. So what made some of these kids succeed and what made some of them struggle? So, right. So going back to some of the, not the. I guess in variability, what would like the ages that the kids and how many years did you follow these kids? And, and you said they all had hearing aids.
[00:13:11] So then we no cochlear implant. So, uh, the way the study started, the kids could be, we had what was called an accelerated longitudinal design. So the kids could be anywhere between six months. Age at seven years of age, when they enrolled in the project, which was going around like 2009, 2010, and then we followed them longitudinally.
[00:13:33] So we started off with a wide age range and that gave us cross sectional data from basically infancy to. First grade, but then we had longitudinal data that tracked. So then we could track their language growth, their listening growth, um, just how they were doing over time. Um, and we're still following these kids.
[00:13:52] So now a lot of, some of them are like juniors and seniors in high school, which is crazy to me. Um, but, uh, yeah, I mean, some of them were six or seven years old when they started and it has been. 10 years. Uh, we just completed a study with a lot of these kids participated in that study on listening effort. It was, and it was a project I'm listening effort.
[00:14:16] Um, and then we are hoping we submitted a grant last week to the national institutes of health to try to follow these kids into junior high and high school. Yeah. That's important too. I know it is. And I realized I. I realized writing that grant there, we don't know much about adolescents at all. So, um, I hear anecdotally that within this makes sense to me.
[00:14:40] Um, when they get to junior high, they don't want to wear their hearing aids or they don't want to wear the remote microphone system. Well, but, um, but we don't really have good evidence research evidence for that. And if they do decide not to wear their equipment, we don't have evidence for why or what impact that has.
[00:14:59] So, um, so I'm excited. I hope, I hope the NIH likes the grant. We never know . One of my passion areas is teens. Then I feel like that would be great information. Yeah. So one other question, like how many kids did you recruit for this? And I'm sure it's been over time too. And how many have actually stayed in the study?
[00:15:23] So we recruited, uh, three, well, okay. So we have. I want to say it was like four to 500 people responded to participate. We did not. So the kids in the study all had to have a bilateral hearing loss. We didn't include anybody that had a unilateral hearing loss. Initially we did. And then we didn't keep following those kids.
[00:15:44] So everybody had a bilateral hearing loss, studied. It all had to be between the, in the mild to severe range. And, uh, they couldn't have any additional disabilities or, um, English had to be their first language. And also we, we wanted to look at the impact of hearing aids. So we did not include kids that had cochlear implants when they started in the study.
[00:16:05] We had some that got cochlear implants as the study progressed. So. With those criteria, like I said, we had about 500 people for 450 that. Contacted us. And with the inclusionary exclusionary criteria, we had ended up with 317 kids that were in this study that actually enrolled. I collected data on them because some, um, ended up not qualified because they had additional disabilities or had a cochlear implant.
[00:16:31] And then we also had a group of 117 children with typical hearing that were matched on socioeconomic status and age. And that was ended up being really important because one of the things that we've found pretty consistently as well, when we've looked at the data of our kids who are hard of hearing that were in the study.
[00:16:54] If we just look at them compared to test norms, like. How they did on the Peabody picture vocabulary test, they look like they're doing within the average range, but when we compare them to our 112 group of hearing kids, um, they're doing significant they're significant delays compared to that population.
[00:17:11] So that ended up, it was good that we had that normal hearing control group. Um, in terms of, uh, retention, like who has stayed in the study, I want to say we've. I can't remember exact number and I should know this because it's had to go in the grant. Um, I think we've kept about 200 of the kids in the study.
[00:17:30] Some of them are no longer in the study because they didn't get cochlear implants and we quit following them. Some of them moved away. Some of them we lost to contact. But we've still got a lot of the kids that started in the original study that we're still following. So contact with. Yeah. Right.
[00:17:46] Especially over that period of time, be able to keep, you know, get out data and information about it's helped at a lot of the some of the original people that started on the project as working on the project are still with the project. So I'm still on the project. Um, Ryan McCreery, who's at boys town. He started on the project pretty early and Mary Stratford, who is his, uh, research audiologist and his, um, director of his lab.
[00:18:15] She's still on the project. So we have a lot of the original, um, which helps. Yeah. Yeah. So, so I think one of the things as an educational audiologist kind of being out in the field is that I always. Have this reaction from teachers and sometimes parents and others, even speech pathologists sometimes.
[00:18:40] And they're like, they read a report and they say, Oh, who just has a mild hearing loss. Or, and for me that like boils inside of me because I understand the impact of my mild. Um, but. I guess I wanted to ask you, you know, what are some of those key factors that you found in this study about the impact of mild hearing hearing loss and access to language basically?
[00:19:10] Yeah. So one of the early papers that we published, well, one of the first papers we published as part of the OCHL outcomes of children with hearing loss study, which I call OCHL just for your. The ads, people at Boys town, for whatever reason, call it OCHL, which takes me too long to say, so I call it, um, I'll I, when people call it OCHL.
[00:19:32] So, uh, one of the first papers we published was looking at how much kids wear their hearing aids. And the big takeaway from that was the kids with mild hearing loss were wearing their hearing aids. So that was one of the big predictors for hearing aid. Use time was the severity of the hearing loss. As the hearing loss was more severe.
[00:19:50] The kids. More, their hearing aids more often. And we measured hearing aid use from parent report and from a data logging with the hearing aid. And so from that, we did a follow up paper because we were really interested in like, okay, well maybe these mild kids don't need it to wear their hearing aids. I didn't know.
[00:20:10] Like maybe we're over hearing aids are expensive. We ha I've seen as a cause I, as a clinical audiologist, I've seen. pushback from physicians and other audiologists sometimes about fitting. Hearing aids on kids with mild hearing loss. Um, and so we, so from that, I decided to look at, um, just our mild cohort.
[00:20:31] So the kids in the study that had a mild hearing loss, and it just so happened that it, we had a group of kids with mild hearing loss who never wore hearing aids. And then we had a group and our data kind of worked out and then. A group that we're, um, about six hours per day. So they're probably wearing them at school and not a lot of people say, well, they just need a map score.
[00:20:50] Yeah. And then we had a group of kids with mild hearing loss that really did wear them full time. And we could tell from the data logging. And so we, I ended up taking that data set and just publishing a separate paper on that in, I think. 2013 or 2014. I can't remember when that paper came out. And what we found was really large differences between the kids with mild hearing loss who never wore the hearing aids and the kids with mild hearing loss who wore the hearing aids full-time.
[00:21:18] So the kids with mild hearing loss were the hearing aids. Full-time, we're actually about one standard deviation. Above average in terms of their vocabulary and their grammar skills, but they look just like our typical hearing kids. Cause the typical hearing kids were also about one standard deviation above average, which gets to that issue.
[00:21:39] I was talking about where the norms don't always reflect how the kids are doing. Whereas the kids with, um, the kids that didn't have hearing aids or didn't wear their hearing aids, um, they were more like. They were about one to two standard deviations delayed compared to the full time hearing aid wearers.
[00:21:58] And then they were kind of in the average range compared to the test norms. But to me, that indicates they're not really meeting their full potential. They should look like these kids. They should look like the typical hearing periods that they don't need hearing aids. And they should look like these. My other kids with mild hearing loss that are wearing the hearing aids full time.
[00:22:16] So it does indicate to us hearing aid can help even with just a mild hearing loss. Um, we had another paper we published last year, where we looked at called hearing aid dosage, where we measured, how much the kids were wearing their hearing aids in combination with how much access they got through the hearing aids.
[00:22:33] Um, Based on the speech intelligibility index. And we kind of see this, the data seems to like acetone e around speech intelligibility, index of 0.8 or 80%. And what that means is kids who have access with without no hearing aids on unaided. Audibility. Um, if they have access to 80% of the speech spectrum, it doesn't seem to make a difference if they have hearing aids or not, or if they wear the hearing aids full-time or not.
[00:23:01] But for the kids that were, that had, um, less than 80% access to the speech spectrum without hearing aids on, they seem to need the hearing aids. So, so there seemed to be kind of this like split in the data. Like there is a point at which you have a mild hearing loss and you may not need to wear hearing aids, but just grouping it all in this big category of mild.
[00:23:23] Doesn't really reflect that because mild is kind of actually kind of a broad range. So, so that's where the speech intelligibility index. We're also really into audibility in this research project and how much access you're actually getting through your hearing aids. And that can be measured with the speech intelligibility index.
[00:23:42] So I just kind of reviewing some of your study before it, and you had an acronym ACCESS, so, Oh yeah. That's I can't take credit for that. That was Mary Pat. She was the one that came up with that. Mary Pat is really good at coming up with acronyms and by Mary Pat, I mean, Mary Pat Moeller. Yeah. She was the principal investigator on the original OCHL study.
[00:24:08] She's now retired. She's living in North Carolina with her near her grandkids. Um, I miss her every day. Um, so yeah, Mary Pat came up with an acronym. And are you going to ask me what? I can't remember what it stood for. I can tell you what it means. That's what we've got this grant on mild hearing loss.
[00:24:27] And just as you were doing the introduction, I thought, Oh, I bet she's going to ask me about the acronym for our mild hearing loss grant. So I pulled up Facebook cause I knew I had it on Facebook. And you asked me a different acronym. Well, that's okay. We can do the acronym for mild because I didn't think, I didn't know.
[00:24:45] You have that acronym actually. Yeah. But I can't, we have so many acronyms. I can't keep them all straight. Tell me the acronym that I have for mild. Cause no, no. Let me see if I can remember the access first. Yeah. Okay. Is a for audibility? Yes. Okay. One point C. He for consistency. Um, that's the third one.
[00:25:11] Let's see, I guess what's the first C I can't remember. So that gets it out of bill. Okay. Carefully fit Hearing-aids, consistency of hearing aid use. Um, he is, uh, I know one of them is like supersized services. Is that one of them? Yeah. So, um, he was environments conducted learning. Okay. I to remember that one.
[00:25:39] Yeah, S remember one of the S's is what I want to be. So super something about supersize service. Is there something to that service provision. Oh, okay. And then another one was selected areas of language. The morphology is weakness while I did really bad with that. I got one letter. Well then tell me about that one, the newest acronym.
[00:26:05] So the newest acronym is called fast track. And this F a S T R a K And this is our new grant that we just got funded through the national institutes of health this summer. And it's looking at kids just with mild hearing loss. And I don't mean just a mild hearing loss. I mean, Only mild hearing loss is the focus of the research study.
[00:26:35] Uh, so, and a lot of it came out of the research we've been doing where we, I mean, the paper that we published, looking at the non-users versus the full-time users, and then the, um, the articles that came out this past year, looking at kind of this. Speech intelligibility cutoff and what the criteria should be for fitting hearing aids.
[00:26:54] So the purpose of the fastrak grant, which stands for I'm gonna look at it, cause I can't remember finding appropriate solutions to treat reduced audibility in kids. Uh, the purpose of that grant is to focus on improving diagnosis and intervention for children with mild hearing loss. And one of our, I would say one of our goals is to try to do like we're a little bit of.
[00:27:19] I don't know, our, one of our crazy goals is to try to get rid of the term mild hearing loss. Although I still find myself using it all the time, but we would, we would like to just get rid of that term. Cause it's, it's a misnomer. I just, I hate it. I use educationally significant. Yes. At times, because I feel like that can be very broad in the degrees of losses, but yeah.
[00:27:47] Yeah, yeah. Trying to do we use educationally. That's what I've always said to use the term educationally significant. Um, the other thing that we're advocating for audiologists to do in counseling is to talk about what is the child's speech intelligibility index. Because to us that seems like a really salient concept to parents.
[00:28:06] Like how much access does this child have without hearing aids? The speech spectrum, which is what the SII can give you. And then how much access do they have with their hearing aids? So you could have a kid with a mild hearing loss. Um, we looked at our dataset and if we took all of our mild kids, um, the average SII was around 0.6.
[00:28:27] So they, on average kids with mild hearing loss access to about 60% of the speech spectrum and with hearing aids, they have access to about 90 to 95% of speech. And, and we feel like that concept can really click with parents because one thing, again, as a clinical audiologist, I used to, I was at the VA a long, long time ago, and people would always come in and they'd say, What percentage hearing loss do I have?
[00:28:53] And that would drive me nuts because I'm like, well, we don't measure hearing loss as a percentage. And I'd always cringe when I get that question or I'd have someone come in and say, well, the doctor told me I have a 50% hearing loss. I'm like, where, where did you get that? Like, who told you that? Um, but then I started realizing when we were really looking.
[00:29:12] This SII stuff. I mean, that really is what the speech intelligibility index is telling you. It's not saying you have a 50% hearing loss, but it's saying that's how much access you have to the speech spectrum. And I close when you're close to the speaker at a conversational level. So it's not taking into effect, background noise, or distance
[00:29:33] And that's why I think it's good concept for counseling with parents, because you can say, okay, when you're speaking to them from a meter away at a conversational level, they'll be able to pick up maybe about 60% of what you say when you add in background noise. When you walk further away from your child, that SII.
[00:29:53] I is going to go down and they're not going to have, they're going to have access to maybe 20% of the speech spectrum. And this is a kid with a mild hearing loss. So, so I, I think that it's, I think that the SII is brilliant and I love it. And we talk in my lab about how we have an audibility cult. because we talk about audibility all the time in my research lab.
[00:30:13] But, uh, uh, but I just, I think it, it, it makes sense to families like to parents, to teachers too. Yeah. And just, we, and maybe that goes into my next question is, you know, we know that. These different factors need to be in place to optimize opportunities for children who have different degrees of hearing loss who are wearing hearing aid
[00:30:39] But what. Advice, would you give audiologists out there right now? Um, obviously, maybe joining your audibility, speech intelligibility cult
[00:30:58] So we all have to join the cult. I have this speech intelligibility. I call it. But what advice would you give to audiologist right now? So, one thing we're trying to talk to audiologists about in this kind of, I mean, this would be changing practice, practice patterns, but you can measure the SII. You don't, it doesn't have to be part of the hearing aid fitting appointment.
[00:31:21] You can do the diagnostic testing with the baby, um, like with ABR or when we, when you do, um, VRA when the baby is six months old, you can get their threshold. You can plug that into a Verifit or some other machine, and, um, it'll calculate the SII for you. And so you could use that. You can put it in their report, you can talk to the parents about it.
[00:31:45] It doesn't have to be tied into the hearing aid appointment. It can be part of the diagnostic appointment as well, but that would take. Pretty big change because a lot of audiologist may not have access to the audioscan, machine that we use to calculate the SII. And, uh, especially the diagnostic appointment.
[00:32:06] Like you just may not have one handy. So you can't really punch the number in one thing. I know Boys town and I I'm probably gonna totally explain this wrong, cause I don't know. The details. I know Boystown has been developing a program, they call Sharp. That would be like an app that you could use to calculate the speech intelligibility index.
[00:32:24] So, um, but yeah, to have it be more, a part of the diagnostic visit would be one big change that we haven't really been doing. The other thing that I think is really important is, um, making sure that we're using either. Really are measures when we're fitting the hearing aids or simulated real ear measures like measuring the SREA and babies, as opposed to using things like, um, aided speech, aided sound, field testing, or functional, what we call functional gain when we're doing hearing aid fitting.
[00:32:55] Big thing that we found in a study was there was huge variability and how wow. Well, the kids' hearing aids were. So we had some kids who were fit to target, fit to prescriptive targets for their hearing aids And we had other kids that were way off target. And, um, and the thing that we found, this was a paper by Ryan McCreery, Ruth battler, and Pat Rousch.
[00:33:17] I think again, it might've been in like 2013 or 2014 that was published in the ear and hearing. Um, but one of the things they found was it had to do with how the audiologists were fitting the hearing aids, if they were using, um, really or measures or simulated really, or measures to program, the hearing aids tended to be fit closer to target.
[00:33:43] entirely. We had very, that, that. We've had very, very few kids that we've seen that were, overfit like a couple out of 317 children who we're seeing across multiple visits. So they were wearing ear plugs at that. They were essentially wearing earplugs. Yep. Yeah. Yeah. So bad, extreme. I don't know if they were, I mean, they were probably getting some audibility.
[00:34:08] It just wasn't to the, and we were using that as our targets, the DSL targets. So desired sensation level. Yeah. And we're just below target. Yeah. So what about parents? What would you, what kind of advice would you give parents who have these kids with mild degrees of hearing loss? So one of the big things I would say is, um, don't rely on their articulation skills, their speech production to tell you if they're doing okay.
[00:34:40] Because one thing we found really across all of our kids with mild to severe hearing loss, but especially the kids with mild, moderate hearing loss, their speech production sounds really good. They're very intelligible and people take those speech production skills as a sign that they're catching everything.
[00:34:58] Their language is fine because sometimes it's kind of hard to differentiate between speech and language. And so we would see these kids that had great articulation, perfectly intelligible speech, and then, but they would have these underlying language deficits in areas like morphology. So adding word endings, grammatical markers, um, That, that seems to be a weakness.
[00:35:22] We've also seen some weaknesses in vocabulary. And our theory is that that's going to cascade into like problems with reading comprehension, because vocabulary and grammar are so important for reading comprehension. Once you get to junior high and high school. So we don't have evidence for that yet, but we suspect that there's that's, what's going to happen.
[00:35:40] So, so that would be one of the big things is, and I would say that for speech pathologists too, like, just because they've met, they can do the Goldman Fristoe test of articulation and not have any errors on it doesn't mean that they need to be. Out of, out of speech therapy, speech, language therapy. I mean, there's this whole language component to it too.
[00:36:01] The other thing I would say that we've found is, um, just how important self-advocacy is teaching these kids pretty early on to take care of their equipment. That it's a part of them that, uh, that they like by the time they get to elementary school, they can be doing things like. Checking the batteries and, and they do need to wear the devices.
[00:36:26] So, um, but also being able to advocate for themselves in the classroom with their peers, with other teachers, I think that self-advocacy piece is just so important and some of the kids I've worked with are just so amazing. At the self-advocacy like, I just, I love seeing them because my, one of my favorite I'll tell you a little story.
[00:36:45] Um, I always say this when I'm giving talks, we had this little girl and I think she was in first grade at the time. And so for a school project, she had to talk about something that was special about her and she picked her ears and she had her teacher take a picture of her ears with her hearing aid on.
[00:37:01] And, and she wrote this little passage and it said, I can't remember. It was like, um, my ears are what makes my ears are what makes me unique. My hearing aids help me hear. It was, it was something like that. And it would just, I loved how she was only like seven years old, but it was just. Like she knew that was something that made her special in a good way.
[00:37:20] Good way. And she wanted to talk about it and to talk about, yeah, we're going to empower them early on. Then hopefully when they get to that junior high or middle school period of time, they become a part of them instead of like, I'm going to take them off and I don't need them. Yeah, and I should be embarrassed of it.
[00:37:39] Exactly. I have one girl who was in junior high and we saw her not too long ago. And I said, I was just like, well, so what do people say about your hearing aids? She's like, Oh, I tell everybody that it's this cool wearable device, like a Fitbit, but it's just on my ear that it's just like, so everybody. Yeah, it's cool.
[00:37:56] It makes it it's really cool. Yeah, I'll have to remember that one.
[00:38:03] And one of my other last questions would be like, what would you tell advice for educators or SLPs who are in the schools about mild own hearing loss? Well, one thing. So I already said the thing about this articulation, um, another, okay. So there's kind of two things. One thing that we've found that I think speech pathologists and teachers should be aware of is, um, that we do see this weakness in morphosyntax or grammar, particularly high-frequency.
[00:38:36] high pitch, low intensity sound. So English is not a very friendly language to hearing loss. So because like a lot of the English morphological markers are these very high pitched sounds like S so, um, plurals past tense, ed. Third person singular, like he walks to the store. Those are really hard sounds.
[00:38:57] They're just not very salient. We have, we say they don't have a lot of phonetic content. And so it's hard for these kids to be able to perceive those sounds. So they may be able to produce an S sound pretty well, but they may be not necessarily recognizing when you need to use a plural marker when you need to use these different grammatical.
[00:39:16] markers. So paying attention to more syntax is really important. Um, another thing that we've found, I could say a lot of things, but because I get very excited about this topic, um, uh, is, uh, vocal with vocabulary we've found. And this, again, doesn't just apply to mild hearing loss, but we've seen this with.
[00:39:36] Kids with mild hearing loss, we have different measures. We use to measure vocabulary. A common one is the picture Peabody picture vocabulary test, which is a receptive language measure where you see different pictures on a page. You hear a target word you're supposed to point to it, the problem. And I love the Peabody.
[00:39:51] It's great measure. The problem with that is it's really only testing their surface. Of all knowledge of, of words and how it's testing, how many words they know, but it's not really getting at how much do they actually know about those words? What's the depth of their knowledge. So one thing we've found, um, is that how much access they have to the speech spectrum through their hearing aids.
[00:40:13] Again, all comes back to SII will predict their long-term growth in the depth of their vocabulary knowledge. So we, and we see that they just. Kids with, um, mild and moderate and severe hearing loss, um, seem to, they seem to be catching up over time in terms of how many words they know, but they never quite catch up and how much they know about words, the depth of their knowledge and their audibility seems to be really tightly linked to that.
[00:40:41] Mm. So, um, and then there was one other thing with the mild hearing loss that I wanted. Oh, okay. So then this other thing that we've found that's really, I think is very interesting. We've seen this consistent pattern with our mild kids where, um, there we call it, we call it our sweet spot. So our kids with moderate hearing loss on average look just like our typical hearing kids.
[00:41:06] The kids with mild hearing loss are just a little bit below that. So, um, and then the kids with severe hearing loss have more of a deficit. And so we call these kids with moderate hearing loss our sweet spot, and we think that's kind of, because they're probably getting pretty consistent intervention. They're wearing the hearing aids and they can be fit appropriately for their hearing loss.
[00:41:25] Whereas the kids with mild hearing loss, um, It's almost not enough. It's not enough of a delay to cause a concern, but enough that I would be worried they'd fall through the cracks. Um, so they're just kinda like coasting along, but I don't think they're really reaching their full potential. And that is probably the result of maybe not wearing the hearing aids or not being fit with hearing aids and maybe not getting consistent special education services.
[00:41:57] And then over time, that gap probably widens. That's what our question. Yeah. We wonder that's why we want to look at them in adolescents, because we do wonder if that gap widens over time or not, because right now it just, it's just this, like, you can see it. If you look at any of our papers, um, especially the last couple of years we've been publishing on, um, how these kids are doing in second and fourth grade.
[00:42:21] And you can see this trend where. It's just the mild kids are just a little bit lower than the moderate kids. They really should be at the same level. They should be performing at the same level as, and that we see that, especially in morphosyntax, but we also see it in vocabulary measures and reading comprehension measures.
[00:42:43] So, um, but we haven't really tested the kids past fourth grade, so we don't know what happens after fourth grade. Okay, which is why you need to get this other grant
[00:42:58] anything like, or you can't talk about a grant that you just submitted. I think I'm allowed to do that. We didn't talk that much. No, there's no embargo or anything. So is there anything that I didn't ask you that. You want to make sure our listeners know whether their parents are educators and speech pathologists and audiologists.
[00:43:22] Just anyone out there? I guess I would just say, Oh, I don't know. I feel like I should come up with something really profound here, and I'm not, nothing's really coming to mind, but, um, don't overlook these kids with these mild to severe hearing loss. And that is our big take home message that we do. We can see that these kids can like going back to what our original question was, the way we started off the podcast today, what was the original purpose of this longitudinal study was to see, can these kids keep up with their same age peers and what are the factors that seem to support, um, resilience, kids that are keeping up.
[00:43:58] Versus the kids that falling behind and it really seems to get back to, we can, kids can definitely keep up these kids with mild to severe hearing loss they can do as well as their same age peers. Um, But, but it's not, but they can't just do it on their own. Like, we need the support of teachers, which propel, just parents.
[00:44:20] Um, we need to be teaching these kids. Like I said, these self-advocacy skills and, and realizing again, like what you said, the, the device is just a part of them and they're going to need that in order for the classroom to be accessible. That's going to be a part of life, but, uh, but they can succeed. They can meet, they can meet, um, high, high goals, whatever the parents goals have for them.
[00:44:44] And I've definitely seen that with these kids that have been in the study. They've done amazing things. Yeah. No, I'm so thankful for all of the information that you have and all of the resources that. Your group has pulled together and made accessible, on the websites. Um, and I'm going to post that in the show notes too, and on the Facebook page so that people can click on that and get all of your amazing brochures.
[00:45:09] Oh yeah. I was going to say, make sure you post something about the infographics. Graphics, we do. We love infographic and we spent a lot of time coming up with these infographics and they are available still. We have money, Phonak donated money to us so that we could ship the infographics to whoever wants them.
[00:45:30] And so we still have some of that money left. And so if you just. No to our webpage www.ochlstudy.org, which Carrie will post in the show notes. I will. Um, you can, there's like a little thing you can click. If you want any of the infographics for your office, for your home, share with family to share with family.
[00:45:58] Right. And you can download them as well. And you can email them. I have them in like six different languages. Now it's funny because I think every time I give a talk, somebody comes up to me afterwards and they're like, I can translate that into Dutch for you or Arabic or. So, so yeah, so we've been translated into multiple languages as well.
[00:46:18] Good. Very much accessible. Yes. Very, yes. Infographics are very accessible. That's good. But I just want to thank you for coming on to the podcast today. I hope our listeners gained a good perspective that mild is not mild not my own and that we really need to look at these kids in a different way so that they can reach their fullest potential.
[00:46:43] And they. They can, it's just a matter of how we approach it and how we support them. And, um, And everything else that kind of goes into that village and that child, that whole child. So, um, again, that bath, I am so thankful for you coming on today and I really appreciate everything that you had to share and all of the work that you do.
[00:47:07] Thank you. I cannot wait to see you in person at ASHA someday. I know, I know.
[00:47:19] Yes, this has been a production of the 3C Digital Media Network. .

Episode 9: empowEAR Audiology - Dr. Oliver Adunka

[00:00:00] Welcome to episode nine of empowEAR Audiology with Dr. Carrie Spangler.
[00:00:16] Welcome to the empowEAR Audiology Podcast. My name is Dr. Carrie Spangler, and I am your host, a passionate audiologist with a lifelong journey living with hearing challenges and this vibrant hearing world. Many of us learn and grow by being in communication and connecting with others. It is my hope that all of you as listeners will learn something new and be empowered after each episode.
[00:00:40] Whether you're a professional, a parent, an individual with hearing loss, or just want to be inspired. I am glad that you are with us today. I would also be grateful if you take a moment to subscribe and give a positive rating for this podcast. Also like us on our empowEAR Audiology and engage in the conversation.
[00:01:01] After each episode, a transcript of each episode is also available on the 3C Digital Media Network website in the podcast section. So let's get started today with today's empowEAR Audiology podcast. This episode is really special for me for a couple of different reasons. First and foremost, I have the incredible honor to interview my own cochlear implant surgeon, Dr. Oliver Adunka.
[00:01:28] And second, the reason that's really special today is that my one-year cochlear implant birthday is in the month of November. So, let me tell you a little bit about Dr. Adunka. Dr. Adunka is the director of otology neurotology and cranial based surgery at the department of otolaryngology head and neck surgery at the Ohio state university.
[00:01:55] He's also part of the department of pediatric otolaryngology at nationwide children's hospital in Columbus. Dr. Adunka specializes in otology neurotology and lateral skull-based surgery and shares his time between the department of otolaryngology at the Ohio State University and nationwide children's hospital.
[00:02:17] He is also a full professor. Dr. Adunka attended the university of Vienna medical school. He completed his otolaryngology residency in Frankfurt, Germany, and he also completed a fellowship at the University of North Carolina. Dr. Adunka conducted research that established temporal bone histology data that served as the basis of cochlear implant electrode insertion trauma hoping to reeducate cochlear implant surgery surgeons about insertion techniques to reduce damage within the inner ear and facilitate hearing conservation.
[00:02:57] So today I am really excited to have Dr. Adunka. Thank you for joining me. Oh, my pleasure. So I always like to start off my interviews. I've um, how we know each other. So do you remember when we first met, um, good questions? Uh, I. I mean again as a patient, but we may have had some interactions prior. So I don't know.
[00:03:22] You probably remember as well. I don't know. No, I do. I, I, you probably didn't know. I knew you better than you knew me. And then you did. Um, because I had in the back of my head that, you know, possibly at some point in time, I might get a cochlear implant. Um, so I, I knew who you were before you knew who I was, but that I, I think we actually first met maybe professionally through Children of Ohio, which was the children's hearing and language development resource network that, um, I think, uh, Dr.Derek Houston, might've introduced us.
Yeah, obviously very great organization. So yeah, that's a great one. Yeah. But in your mind that you may, you may seek out guy about a cochlear implant. What was that again? You may, you may seek out the surgeon about a cochlear implant plan. That's right. Um, but, um, yeah, and then I think we, um, you really remembered me probably last July then when I decided after much hesitation, to begin my own personal journey and schedule an appointment.
[00:04:42] Right. Yeah. Yeah. That's how we met kind of in a different way, but sure. Um, but that kind of leads me to why I'm really kind of excited about this podcast because I think, um, like me, um, there's an, I'm an audiologist that knows a lot about cochlear implants, but I think there's a lot of adults out there who may benefit from a cochlear implant, but have not thought about it.
[00:05:10] And, um, I'm sure there are clinical audiologists that might be listening to this, um, who are patients and their caseload, um, who could be possible cochlear implant candidates, but they haven't made an, a referral. Um, and they haven't had that conversation. So, um, this really, I think hits home to me, um, because I'm hoping that this might.
[00:05:35] Spur others to have a conversation with their patients, or if they happen to have a hearing loss and listening to this podcast that this conversation that we have together, um, well open up their, you know, journey as well. Um, but before we get too deep into that, I was just kind of curious, um, how did you find your way into the specialty area of cochlear implants?
[00:06:03] Yeah, it was a interesting, uh, kind of journey and it, it all happens, um, by accident, really. Um, I was in medical school and, in, Vienna, Austria, which is where I grew up. And, um, I wanted to become a neurosurgeon. Uh, really, that was really what my, what I set out to do in medical school. And as I became more and more familiar with the work of neurosurgery and, you know, the somewhat challenging outcomes and, um, uh, you know, just the work itself, I.
[00:06:39] Uh, I, I developed doubts and, uh, I really wasn't sure anymore. And they're looked at other fields. I knew I wanted to do something surgical and I remembered that, uh, my, uh, what turned out to be my mentor. At some point, I met him in the neurosurgery operating room cause he, uh, collaborated with, uh, the local neurosurgeons on certain cases.
[00:07:04] And um, I thought, well, ENT is kind of cool. So I, um, look more into it and, um, ultimately. You know, we had to write a dissertation too, in order to graduate with a doctorate degree. So I, I talked to this person and we sort of hit it off. And ultimately, uh, he offered me to write my dissertation with him. And, uh, it turned out that, you know, the topic he said, he said, was to write up our clinical results for cochlear implants.
[00:07:38] And again, that was in the 1990s. So there weren't that many, uh, there wasn't a lot of data out on cochlear implants, so, and, um, one of the manufacturer MedEL is from Austria. So that's, um, that turned out to be, um, an important pathway. For me. And, uh, ultimately, you know, after graduating medical [00:08:00] school in Austria, we had to, we have to spend some time in the military.
[00:08:04] So I did that and I had some time in the late afternoons to go over to the general hospital and do some cochlear implant research. So, uh, that's sort of how this. Snowballed into something. I always had a passion for engineering. And, uh, so I certainly liked the fact that this is a device. This is an implant.
[00:08:23] This is. Electrical engineering, which I like even more than just engineering, I would say. And, uh, I like electorsurgical science. So really that was sort of one of the things I was able to combine and, uh, back then, and, uh, this person, uh, Dr. , he's now back in Vienna, but at the time, you know, after I'm military, Um, he became a chairman in Frankfort Germany, and he said, why don't you come with me?
[00:08:51] So on the, he, he sort of was a, was a big part of why I chose to you know, became involved in cochlear implants, et cetera. Right. And, um, ultimately after, after that, after my residency, I stayed on and Frankfurt, Germany, and, um, you know, wanted to be a neurotologist that wanted to add the neurosurgical side to my practice.
[00:09:12] And, uh, that wasn't, uh, Did he really in Europe to do that. And ultimately that's why I came to the United States. Uh, certainly had several hurdles on the way in terms of, you know, credentialing and tests and all that kind of stuff. But, um, so that's why I ended up at UNC and, um, Yeah, here I am now at Ohio state.
[00:09:33] So it sounds like you had some great mentors along the way and able to take lots of your interest in the one area and focus on, on cochlear implants and be there really from the beginning of when cochlear implants. Started. Um, but so just so all of our listeners are kind of on the same page. Um, can you give just a quick, like minute overview of what a cochlear implant is in case some people aren't, aren't sure about it.
[00:10:02] Sure. So a cochlear implant is, uh, he's, uh, is really the only neuroprosthetic that provides, uh, replacement for a sense, right? The sense of hearing and the cochlear implant. Is it really a semi implantable device. So meaning that the only part of it is actual an implant. The other part is worn outside and, um, the implant is inserted into the cochlear, which is the inner ear is shaped like a snail.
[00:10:29] And, um, the cochlea is really special in a way in multiple ways. In one way is that the frequencies are aligned along a certain, um, uh, you know, frequency distribution. So meaning that each pitch in the cochlear has a certain location and with multi-channel and cochlear implants that were FDA approved in 1985.
[00:10:52] And they utilize that principle. To stimulate each pitch at a different location within the inner ear, within the cochlear and really what they do to bypass inner hair cells, which is which of the rate-limiting step of hearing. And luckily it's the most commonly affected part of the hearing. Right? Usually the nerve is pretty good or, or, or.
[00:11:15] Adequate, at least for hearing with a cochlear implant. And we basically stimulate nerve endings, electrically via a cochlear implant, and the, the actual processing is done on, on the outsides. Um, and that may change over or, you know, down the road with, you know, the future of fully implantable devices, et cetera.
[00:11:34] But, um, ultimately. Two processing of the device, the sound pickup, and then the processing is done on the outside, in, through a coil, through a radio-frequency coil and similar to how you charge your, your cell phones these days. Right? It's all a wireless, uh, it's transmitted through a frequency link to the internal components.
[00:11:54] So that's really how worked twice, the only working, um, replacement for a sense. So, um, Yeah, it's pretty amazing technology. I can, I can personally say that by that. Yes. And, and I think it kind of brings me to my next point where, you know, I think a lot of people are still under the assumption that you have to pretty much have no residual hearing in order to, to be a candidate for a cochlear implant, um, and pretty much get no benefit at all from, from hearing aids.
[00:12:32] Um, and I know recently you were involved with a, um, A review publication titled , unilateral, CI’S that severe to profound or moderate sloping to provide profound bilateral hearing loss. And I think one of the main questions was how can we improve awareness about the potential advantages of cochlear implants in adults?
[00:12:57] Um, with, you know, severe, profound or moderate sloping to profound hearing loss. Um, can you let us know, or our listeners know a little bit more about what that publication revealed? Yeah. So, uh, this particular publication you're talking about is a product of Delphi consensus. Uh, which is basically, um, quite an intricate process and a company from the UK, uh, pretty much led that Cochlear corporation, one of the device manufacturers, uh, sponsored it, but advanced Bionics was involved MedEL was too.
[00:13:31] And, um, what it really entails is an expert panel and those were international expert. It's not just the United States who, uh, tackled, uh, several statements. And, uh, the idea of a Delphi process is that a, um, any kind of statement that it's run through it, pretty rigorous process. Like this was several rounds.
[00:13:55] So voting, uh, represents, um, you know, it represents the result of, of multiple people thinking, you know, experts around the globe thinking the same way. So it's really a nice way. And you know, not non of these statements is, uh, Earth shattering for us that have been involved with Cochlear implants. But you know, they're really solidifying, you know, the, um, you know, experts, thoughts on how well cochlear implants work, what, what, are problems, you know, what are things that, um, that need to be improved, et cetera.
[00:14:35] So it's really a nice process. And that was the first time I was involved in a Delphi, uh, consensus statements and process. And again, this publication is a product of that. So it was a quite, quite an intricate process. Dr. Buckman, Greg Buckman from WashU led this process for us. Right. Okay. Thanks. So, um, one thing that I think.
[00:14:56] Comes out of that. And I know you're a member of the, um, American cochlear implant Alliance and they came out with almost a Q & A and a about some, um, different things about adults with who might be candidates for cochlear implants. And one of the, um, Q and A's was basically, um, talked about that adult. Um, typically.
[00:15:24] My wait about 27 years. Um, before they go on that path to a cochlear implant, I feel like that's a, that's a lot of years that they might be. I don't want to say wasting, but you know, the quality of life might not be the same if they would have explore that earlier. So why do you think adults wait so long to even go down that path of.
[00:15:53] Looking at a cochlear implant or getting a consultation for a cochlear implant, you know, it's a multi-factorial and it's really, um, reflects what we see in clinic. Although 27 years sounds like a whole, a whole lot. Right. But you know, there's several problems with, um, within the. , you know, what's known about cochlear plants, uh, and we can break it down.
[00:16:20] One is certainly, and you know, you, you, you probably waited a little bit too, right? I mean, and everyone does, I would say right. And the most common. Comment. I hear in clinic, you know, it would be, see patients that'd be implanted into like yourself. Now we usually see folks after surgery once or twice, and then really just once a year.
[00:16:39] Right. And our audiologists do the majority of the work. And so for us, what I call installers, right. It's um, it's really, um, you know, we're not intimately involved. Well, your audiologist, but what I would say the most common thing I hear about a year or two after [00:17:00] surgeries, I can't believe I waited that long.
[00:17:02] Right. And that's sort of something we hear commonly, I don't know how you feel about it, but we can talk about that later. And, um, but it there's some, there's some psychological barrier to give up, to give up something. Right. And for a lot of folks, is that residual hearing, like you can still hear. You can't maybe not understand speech well, but you know, it's, you still have some function.
[00:17:26] Right. And, um, it's just really hard for people, for anyone really to give up something that still works on what's. Right. And we see that specifically with folks getting a second implant. Right. And. Uh, you know, really feel like they don't want to do that. And you look at the audiogram and there's almost nothing there.
[00:17:47] And you're like, why did they hold on to this little bit of the 110 DB threshold? Right. And it's like, well, they can hear the dog barking. Right. So those are all things that are, that are real. And they they're relevant for a lot of folks for some they're not so much, but it's, it's certainly interesting to hear stories.
[00:18:05] About why that is and why people wait. Do you know the other thing is there are a lot of myths out on cochlear implants. Do you know to the surgery takes four or five hours? And a myth, you know, that's, uh, it's really just the 45 minutes, uh, surgery at this point, you know, maybe an hour, but you know, it's really a much different procedure than it was when I started it.
[00:18:27] Right. And the other thing is that, you know, there's, there are myths about, you know, the risks and those are predominantly. Circulating in, you know, with regards to pediatric client plans, you know, and there are multiple factors for that as well. But, um, I think the, the, the, the issue of giving up residual function with a cochlear plan is certainly, is certainly an issue.
[00:18:57] Maybe one thing that's worth mentioning is. We're not very good about predicting how well people will do with a cochlear implant. Right. We have a hunch and there are certainly some people who we predict they wouldn't do well, and then they do. Okay. But you know, the scary part is that some people who we feel like would do great with a cochlear implant, do not.
[00:19:20] Right in bad performers are certainly a huge problem for cochlear implants. And we try to, with some of the research I've been doing and others have been doing over the years, right. We try to minimize the risk for patient. Right. So I think we use. For all as a, as a physician, as a surgeon, right? Your biggest fear is making anyone worse.
[00:19:42] Right. So I don't want to take that a residual hearing away from you, and then you can hear worse. Right. And that's really why our candidacy criteria are so strict. Right. We really want to just tackle people who are absolutely unable to use the hearing in a meaningful way. [00:20:00] And, um, so it's, it's certainly, we're sort of part of this process.
[00:20:05] And, um, uh, patients' fears are part of the process. Um, understandably so, um, I think as a surgeon, it's always easy to say what a surgeon. Not a big deal, right. Because for me, it's not for start for our patient is a different story. Right. And, and, um, uh, but certainly, uh, those are some of the facts or, yeah, no, I mean, you know what you said about people waiting and I'm an audiologist that works with a lot of kids that have cochlear implants and, um, being on the patient side has really made me realize, um, The decision and the emotion that goes into that decision making process, whether it's for your kid or yourself, um, when you're actually the patient, it's a lot different.
[00:20:51] And I would say I probably, I did wait, um, probably two years longer than I should have waited. And I mean, and when you compare to the 27 years, I ahead of the game, um, but I'm somebody that’s very informed about it and yeah. Uh, I think, you know, because I can share this and, and it's my audio gram, but I have essentially normal hearing in the low frequencies.
[00:21:19] So even without my hearing aid hearing aids, I was hearing a lot of things. So I was really scared to give up those little bit of hair cells that were still left in there. So I think every decibel I, um, Counted on. And I mean, I remember coming to that consult appointment with you or with you and with my husband and having that real conversation about candidacy and, you know, All of that.
[00:21:48] And that kind of leads me to my next question is, um, you know, candidacy has changed over the years, um, from like what we talked about earlier. Like having pretty much no hearing whatsoever, um, to an audio gram like mine, where you have. Pretty much, you know, there's ski slope looking audiogram with a lot of residual hearing.
[00:22:12] Um, can you tell us a little bit more about the research and, and the surgery related to hearing preservation now? Absolutely. So, um, as I mentioned earlier, you know, that, uh, giving up hearing and traditionally, uh, maybe for some of your listeners, so traditionally cochlear implants are unable to preserve.
[00:22:35] Right. And, um, I was fortunate that in my residency, in Frankfurt, Germany the guy who, um, invented really hearing preservation and then using that hearing, um, was a guy that was there and Dr. Van Alberich and he ultimately retired, but. Uh, his, uh, the sort of paradigm of electro acoustic stimulation obviously relies on hearing preservation.
[00:23:02] And it's really interesting that, um, we didn't think that we could save or preserve hearing with cochelar implants, you know, cause when we opened the , you know, we're all born with one set of hair cells and the thought was that by inserting that silastic. A piece, you know, which is really the electrodes right into the coal plant that we would ultimately damage it.
[00:23:26] And that's not far from the truth even today, but we've um, so over the past, really two decades, have provided us with improved electrodes, you know, smaller, smaller, electrodes, um, more flexible electrodes that we can insert into the cochlear. And we've learned a surgeons, right? It used to be done to just make a big hole in cochlear and just insert the electrode.
[00:23:51] That's very different now where we're, we're very gentle. We take. Time with electrode insertion and we have this monitoring system that's available and it's going to be used more and more. So we're just much better preserving here right now. How perfect is that? Certainly not perfect. Right. And as a, as a with future.
[00:24:15] Developments. We hope that we can further refine that technique, for example, where someone like you, maybe two years earlier, right. Where you still had good hearing, but you're like, well, um, I'm I need some clarity and high tones when I'm talking on a phone or whatever, right. That you would not be scared of getting a cochlear implant, because I could tell you when you come to me in clinic that Hey, I think I can just like a hearing aid, right?
[00:24:40] You, you, you add something with a hearing aid you add hearing, right. And when you take it off, it's the same. Right. And ultimately, I think that's where cochlear implantation needs to go in order to, uh, to, to gain further or broader application, uh, you know, um, use, you know, into who knows maybe it's worthwhile that about only three to 5% of cohort implant candidates.
[00:25:04] Actual receive one. Right. Which is, which is kind of mind boggling and crazy. But, um, there's, it's a huge bit, not that, but you know, again, it's more of a tutorial, but there's so many factors that prevent folks from getting a cochlear implant. Right. The first one is what do you trying to eliminate with your podcast?
[00:25:23] And then, you know, That, that the word gets out, but you know, there are other ones too. Right. So I think for, I mean, maybe to complete that list, you know, so a lot of folks have financial considerations on cochlear plants. They don't know that, you know, Medicare and then some state Medicaid, you know, pay for it.
[00:25:42] And, uh, so those are all really important facts. Yeah, no, I agree. A hundred percent. So, um, Another thing that kind of goes along with this is making decisions. And we talked a little bit about those who are not good users of cochlear implants, for whatever reason. Um, but as professionals, you know, we're telling our patients and families that a cochlear implant is not a quick fix.
[00:26:11] Um, so what is some things that you emphasize to your patients and families during that cochlear implant evaluation process in order to set them up for success? So that, that we don't have users non-users I guess. Right. So obviously non-users are our biggest nightmare, right? Uh, because then we've done something that they cannot utilize.
[00:26:35] And so counseling is important and realistic expectations are important. Now, uh, we always say, well, how realistic? And we try to gauge our realistic expectations are I can tell you from my, from my experience, that realistic expectations are often not realistic. Um, it's just, you know, it goes along with just the human nature of having hopes.
[00:26:56] Right. And understanding how socially isolating hearing aid are, uh, hearing losses oftentimes, especially for really profound hearing loss is right. It really is isolating a lot of adults struggle with social isolation and associated too. So I think it's just, people have high hopes, you know, it's really their only chance oftentimes.
[00:27:15] And, um, so it's always easy for us to say, well, that person doesn't have very realistic expectations, but it's really, it's really hard oftentimes to, to curb your expectations or your hopes and when that's, what you're looking forward to. So, uh, just to say that right off the bat, but what I would say is that.
[00:27:32] Um, we, uh, counsel and audiology is really at the center of this. I would say, you know, you know what our counseling entails is the different devices, the different manufacturers. So we let patients choose their device. You know, how to, uh, how. What the, what the process of, uh, the equipment batteries, et cetera, entail, you know, so that people are not so surprised by that fact, you know, what kind of processes are out there, how big they are, uh, let them touch it, feel it, you know, you see this goes behind you a ear.
[00:28:05] Um, so I think those are all important things. And, you know, the things that for us as medical providers that are often simple things. Right. But they're everyday things, right. That do matter. And, um, so we, we try not to just counsel about the, the hearing and thresholds and MCLs and all that kind of stuff.
[00:28:24] We really try to counsel the real life kind of implications, I think from expectations, going back to that, uh, we do tell folks that it's a, it's a, it's a process. That's for some people it's really not a lot of long process, right. From, in terms of appointments and all that. There are a few appointments, especially early on once the once the current levels are stabled and it's really just, you, you won't have that many appointments.
[00:28:48] Right. But I think would be tell folks, is that the more residual hearing you have, typically, even if it's on the other side, usually you have to force yourself more to use it. Right. [00:29:00] Cause it's a different hearing. You probably can attest to that. And, uh, you know, again, that is a process. It takes some training, right.
[00:29:09] Then multiple resources for training, the easiest one being, just watching television with your captions on. But you know, there are more sophisticated ones too. And, um, that, um, you know, surgery wise, we counsel that it's a small outpatient procedure that. Age is really not a contraindication. And, uh, a lot of people come in well, I'm 87 years old.
[00:29:33] I thought you wouldn't do that. That's not true. Right. And debt. Um, there's going to be some pain after surgery, but overall people heal very well. And if it's, if it's done properly, you know, one thing. That always comes up is what I'm going to shave a or I personally don't at all. Uh, you can probably confirm that we just brush it back and all that.
[00:29:55] So it's, it's just surgery wise. You know, again, it's easy to say that as a surgeon, but we're um, I don't think it's too. It's it's too. Right. Yeah. And I think being a patient, um, and I think maybe a lot of people feel this way. The first hesitancy is like the surgery. Um, and you know, going through that process and, you know, after being through the process, I realized that like, the surgery actually was the easy part for me.
[00:30:31] Um, uh, once, uh, the recovery, um, it was everything after. And like what you said, you know, um, I have Dr. LePrete as my audiologist and I feel bad for her having to have an audiologist program an audiologist. I'm probably not the best patient ever, but I give her, um, a lot of kudos for, uh, all of the appointments that she goes through with me, but I, every time it it's.
[00:30:56] Hearing something new. And to know that your brain can go from chirps to beeps and whistles to making sense of the speech is quite amazing that you can go through that. And I, I really do feel that patients, whether they're itty bittiies to older adults, need to understand that. That listening, therapy, and then having somebody coach you through that is critical for this success of, of, of the implant, especially if you're trying to integrate two different signals together.
[00:31:30] Um, I think that has to be a, yeah, absolutely. And I will add here, maybe Carrie that. Um, I feel that our counseling is good and it's, it's important, but I think maybe hearing it from someone who just, who just recently went through the process. Uh, maybe not just recently, but it went through the process period is probably pretty, pretty powerful because it's that different perspective that frankly I don't have.
[00:31:58] Right. And, um, so, uh, we, we often try to, you know, get patients, uh, with connected with candidates, you know, and existing patients. Yes. And, you know, I'm always willing to talk to someone who might be going through that process because it is scary, but once you get through it and just knowing what the expectations are, I think I, I important to you and we actually see that a lot, um, pediatric world or pediatric cochlear implantation.
[00:32:31] Right then. Um, , it's just such a big decision in such a pro such a more involved process, obviously, because we just can't test. Baby's hearing like we can test your hearing, right. So there's obviously much more involved and, uh, getting, getting a peer system in Place is, is, is, uh, in my mind critical.
[00:32:52] Yeah. I mean, I think that's been one of the greatest blessings of, of all of this being an audiologist and a cochlear implant patient, um, is to be able to counsel families, even though my journey is going to be much different than a child. I still have another perspective that most. Professionals don't have.
[00:33:10] And also I've been able to meet people all over the world because they've read my blog and they reached out to me in other ways, um, who are adults who are considering the process. That would been a great connector that way, too. Yeah. So you're sharing your story is fabulous. And, uh, you know, on behalf of everyone, On really in the field.
[00:33:29] We really appreciate that. And it's people like yourself will make a difference. Right. Well, thanks. But, so my, my one other question that I do have for you is that you have been, like you said, involved with cochlear implant since the 1990s, is that. And so, um, for quite a few years now, what do you think the future of cochlear implants holds and what kind of gets you excited?
[00:33:55] Do you have a vision or a thought process about that? So, first of all, maybe not directly linked to cochlear implants is the future of hair cell regeneration. Right? Because we get asked that question. It comes up all the time. Right. And ever since I've been involved with cochlear implants again, since the 1990s, it's going to be in over 20 years.
[00:34:17] Right. And now if you ask someone it's going to be another 20 years. Right. So if, really, if my answer to, to patients and candidates is that don't wait for that. It's not going to happen. It's. You know, just fix your hearing right now. Cause cause you brain and your psyche you're you're you're you as human being need to hear.
[00:34:37] Right. So I think maybe, maybe one, uh, one word on that. Um, I think future developments are again where we can, we can improve a hearing preservation capabilities to the point where we can preserve your. Reliably on everyone who needs to have to hear them for service. Right? So as we expand our criteria and were implanted, we've taken on more and more residual hearing places with more and more residual hearing, we need to, we need to be able to preserve it reliable, right.
[00:35:04] And not meaning, not meaning good. You say, Oh, an 85% or 90%. Uh, I want to say it like in 99%, it's almost certain that we can preserve your hearing. So I think that's really critical and I hope that the future will bring more technologies and techniques, et cetera, and devices that can allow us to do that.
[00:35:24] Right. The other thing is, um, I, do, uh, do you feel like, um, Well, some people don't care about it. I do think for the younger generation, it's ultimately going to be important to have a fully implantable cochlear implant. And I know there's several efforts on the way and really to technology has matured to the point where it's possible.
[00:35:46] Um, so I'm looking forward to a fully implantable cochlear implants. It's it's around the corner. I think it's not even that. But it's something that, uh, will likely come at some point, you know, there are certain disadvantages in certain issues. And what I always say, there's some technology that may allow you to, for example, if you, if you have a cochlear implant or to even, did you want to step into the shower?
[00:36:12] You would jump into the pool. Right. But you don't, you take them off, but you can still here for another 20, 30 minutes. Right. That would be great. Right. It doesn't have to be maybe great hearing, but you know, some kind of, some kind of it would be called invisible hearing. Right. Will be great. So you don't, you don't take your implant off.
[00:36:28] So I think those are all, uh, pretty, um, doable steps, um, that, uh, likely going to, uh, see the light here in hopefully in a few years. Uh, but I know, and I know that it's been worked on it's, you know, their, their efforts, even from the non-traditional companies, but there's some other startups that really work on this.
[00:36:51] So, uh, I think more. Or two done. It's great. Um, it's great to have that friendly competition between the manufacturers. I think it, it, it makes things better, right? It's good for the consumer. And, uh, I hope that that goes on. Right. And one thing maybe a lastly is as we as professionals are better at predicting future performance with a cochlear implant so we can avoid bad performance, right?
[00:37:23] I'd think bad performers or bad or not good for cochlear iplants. We need to identify people, find, uh, you know, alternatives and, uh, Hmm. I think it's really critical to identify folks who may not do well with the cochlear implants early on in the so, uh, we can, uh, we can again and find alternatives on, on, on the other side, if someone comes in and they have 60% or discrimination, but we can guarantee 85%, right.
[00:37:53] Then all of a sudden that patient becomes a candidate. All right. So I think it would be really critical for us to have a better understanding of these interactions and electrode placement. So there's a lot of research to be done in cochlear implants, and some folks argue it's very details and it may not make it, you know, there may not be a big jump in performance possible.
[00:38:13] I would disagree. So I think, uh, the future for cochlear implant plants is bright and hopefully we can, um, you know, we can reach more people with this technology. Yeah. Then it is all exciting, uh, information there. Kind of think about for the future too. So there anything else you want to add? Dr. Adunka, how can people get ahold of you if they're interested in maybe pursuing this route?
[00:38:39] Yeah. So, um, How to get ahold of me. So I'm at Ohio state and Children's and nationwide children's in Columbus. So, um, just look me up online, come make an appointment, come see me or one of my partners. I mean, if I'm blessed, they have a great department on both the pediatric as well as the adult side. So they're great doctors of audiologists.
[00:39:00] So it's just really a great team and it's a pleasure to, uh, to be working there. So I'm just one of the guys, right. And it's really just, uh, it takes a village. Right. So, um, I think I do want to mention that, that, um, we're pretty blessed with just having great teams. And so what I want to say is that, uh, for us as providers, right?
[00:39:21] It's um, we recognize that it's an emotional journey for patients with hearing loss. And again, hearing loss, we see that a lot that patients are really emotional about their hearing loss. Maybe not so much to hearing loss and The social isolation hearing loss comes along with, you know, and, uh, I think, you know, it's, um, it makes my day, if I see someone like yourself, but other people too, who maybe were less functioning before functional before that, and then they can go back out again and the restaurant is a Kroger or, you know, buy groceries.
[00:39:55] And ultimately we integrate themselves. So, um, for us, it's just really one of those things that make us go to work every day. And it's just a great honor, honestly, it's just a great honor to make people hear again. And, um, cochlear implant, a great, it might be an easy, uh, surgery for us, but, uh, Seeing that patient journey pan out, um, is just really priceless for us.
[00:40:20] So it's great. Well, I just want to thank you for being on today and being a part of today's podcast. I think our listeners will have a deeper understanding of. The widening candidacy option for individuals, um, and maybe take that next step and, and realize that it is a journey and it does take time.
[00:40:42] So again, other, thank you for listening. Yeah. Thank you. Thank you. Listen for listening and be sure to share this podcast. If you found that it is helpful with your friends and on social media and join our Facebook page. Thanks a lot. This has been a production of the 3C Digital Media Network. .

Episode 8: empowEAR Audiology - Carrie’s Cochlear Implant Birthday

Welcome to the empowEAR Audiology Podcast. My name is Dr. Carrie Spangler and I am your host, a passionate audiologist with a lifelong journey living with hearing challenges in this vibrant hearing world. I wanted to have an empowering podcast for ALL of my listeners. Many of us learn and grow by being in communication and connecting with others. It is my hope that all of my listeners will learn something new and be empowered after each episode. Whether you are a professional parent, individual with hearing loss OR just want to be inspired, I am glad that you are here with us today.
I would be grateful if you take a moment to subscribe and give a positive rating for this podcast. Also, like the facebook page, empowEAR Audiology and engage in a conversation about each episode. A transcript of each episode is also available on the 3C Digital Media Network webpage in the section of podcasts.
Happy CI Birthday to me!! I cannot believe that it has been a year since my surgery and activation day. Birthdays are always a reason to celebrate, so why not celebrate the birthday of my CI.
This journey really has really forced me to be vulnerable and step outside of my comfort zone. I have always been willing to share my hearing challenges with those I work with and families, but the start of the cochlear implant journey was a way to be vulnerable in who I was. Brene Brown talks a lot about being vulnerable in her book Dare to Lead. I am empowEARed by the amazing quotes that she has. “Vulnerability is not winning or losing; it’s having the courage to show up and be seen when we have no control over the outcome. Vulnerability is not weakness; its our greatest measure of courage.
This podcast episode is again being vulnerable and sharing with all of you MY own cochlear implant journey. Come join me as I take you on this rollercoaster adventure.
Before I get deep into the CI journey, if any listeners would like the backstory of my hearing loss, I encourage you to listen to the first empowEAR episode “What is Your Purpose”, I took a deep dive into growing up with hearing loss and the life tests that developed as a result of growing up with hearing challenges in this vibrant hearing world.
How did the CI journey get started? All of you listeners know that I am a passionate audiologist with hearing loss. I work in the public schools as an educational audiologist. I work with a multitude of students with CI’s, their families, and educational teams. I have at times suggested to families; have you considered talking to your clinical audiologist and ENT about the possibility of CI? Your child is working really hard to listen and understand with hearing aids.
Flip the table. Now it is me personally who is working really hard to hear and understand what people are saying. BUT, in the beginning, I did not want to believe that this was happening to me. I was in complete denial. I started making up excuses in my head for what I will now call “unfocused hearing”. I would blame not hearing well on my attention to something else. I would blame unfocused hearing on someone mumbling. I would blame unfocused hearing on hanging out in the local coffee house with poor acoustics. I would blame unfocused hearing on not getting enough sleep the night before. I had an excuse for unfocused hearing when I knew deep down it was more than unfocused hearing.
If I had to be honest with myself, how long did I put the blame on unfocused hearing?? I admit it took me about 2 years to come out of “denial” that my ability to discriminate speech was not external, it was internal. AND I am an audiologist. But I am also a human being with feelings about loss. Losing more hearing is a loss, even if it is gradual. I was going through this denial, anger, and detachment with my unfocused hearing because quite frankly, it was getting more and more difficult to understand what people were saying.
What changed? Do any of you have a little voice in your head? The little voice, birdie, in my own faith...God, kept telling me….Carrie, you need to build up the courage to make the phone call. The phone call to set up an appointment for a CI consult.
While the little voice was getting louder in my head to make the call I was also trying to ignore this voice. On the other hand I was dialoguing with MANY resourceful colleagues and friends. I feel like different people were strategically placed in my life so that I could have another seed of courage planted to make that call. I talked with CI audiologists, CI surgeons, CI manufacturers, and most importantly...my audiology peeps who also have HL and have CIs. All of these people along the way have given me their personal cell phone numbers and said to call at any time.
The little voice, I kept arguing with….and my biggest argument was “what if??” What if this is not the right decision? What if this doesn’t work? What if I hate it and never get used to it? Sometimes it is a sign from above that gives you the courage to move forward. I have to share this little story. I was getting ready to go to an audiology conference and looking for a book to read on the plane at the airport. The best seller, Girl Stop Apologizing” by Rachel Hollis caught my eye and I decided to buy it. The introductory chapter of this book was titled “What IF”....and Rachel Hollis asked “What if God put this on my heart for a reason”. I was immediately taken to my own “what if” question and knew this struck me so profoundly that I needed to make the “what if” call for a CI consultation. What if this call and outcome changes my unfocused life for the better?
After returning from this conference, I picked up the phone and called the Ohio State University Medical Center for a CI evaluation. Date set for July 29, 2019.
Leading up to this appointment, I would be remiss if I did not mention the importance of #sameselfpeers. As an audiologist, I understand the CI process on a more advanced level than the average patient. I thought I would be OK with this because this is part of my job. But it is not that way. When the seat at the table is turned and you are on the other side; you gain a really new and different perspective. I felt so blessed to have a network of AuD friends with CI’s that were my lifeline. I could ask any question and they shared their own experience. I just want to have a huge shout out to Stacey Lim, Karen McGiver-Lux, Tina Childress, Samantha Kesteloot, and Sam Atcherson for being my #sameselfpeer lifeline.
July 29th was finally here and Troy (my husband) and I were starting our 2 hour trip to Columbus with a quick run through Starbucks. Troy has never been to an audiology appointment with me, so this was all new to him. We arrived and got checked in. I remember having second thoughts and thinking...I am not sure why I am here...I don’t think that i will be a candidate but I need to rule it out.
My name was finally called and we went back to the booth. I was on Dr. Debby LaPrete’s audiology schedule that day. Troy stayed in the booth with me as she went through the multitude of unaided and aided testing. At times, Troy had to busy himself with his phone because the sounds were escaping the headphones and I was not hearing. I knew without seeing the results that it was not good. Seeing the results on paper; brought my unfocused hearing into reality. My hearing had shifted and my speech discrimination was not good. Both of ears looked the same audiometrically (for those audiologists out there, I have essentially normal/mild loss in the loss frequencies and steeping slope to a severe to profound in the mid and high frequencies. However, my speech discrimation for the left ear was much worse than my speech discimiation in the right ear. Dr. LaPrete confirmed my reality...audiologically my scores were in the CI candidacy range.
My next appointment that day was with Dr. Oliver Adunka, who is the director at OSU Dept of Otoloyngology, Head and Neck Surgery with a speciality in CI surgeries. My path had intersected with Dr. Adunka because of a professional collaboration for the state of Ohio. After waiting for a while, my name was called. Dr. Adunka and an entourage of medical students with him that day as well. After looking at all of Dr. LaPrete’s audiological testing, taking a case history...he confirmed that yes I would be a candidate for a CI and also explained that with my configuration of hearing loss, I would also be a candidate for hearing preservation CI surgery, which means that preserving my residual low frequency hearing could be a strong possibility.
After answering many questions, my final question to Dr. Adunka shocked me the most. What are the next steps for moving forward?? I actually left my July 29 appointment with a surgery date of Nov 15, 2019. What a huge step forward and all in one day!
August 29, 2019 I had another appointment with my CI audiologist, Dr. Debby LaPrete to select which CI would be the best fit for me. Based on my results and consultation with my CI team, the left ear was the worse ear and would be the CI implant ear. I was also able to talk extensively with Dr. Adunka about the 3 different choices and received valuable insight about the internal device (part that will be implanted) as it compared to my personal hearing loss and results of the CT scan. My audiologist (Dr. LaPrete) shared with me a device comparison sheet and manufacturer information and I was able to go home and look at this. For all of you listening who may be thinking about a CI, I encourage you to do your own research, talk with the CI team, talk with CI recipients, and go with what feels right for you. Putting on my “audiology hat”, I have had the opportunity to work with children who have CI’s and it is not the device that determines the success. It is the expert placement of the internal device by the surgeon, the CI mapping audiologist and patient relationship to establish baseline and continued mapping/programming, the hard work that goes into learning how to listen with the CI (yes, I am signed up for specialized listening therapy), and of course the village of support that is needed from family and friends. There are always going to be individual variables that will impede the success of progress that may or may not be accounted for and everyone is individual. Cochlear implants are a modern marvel and I am thankful for the engineers and scientists at each manufacturer who study this and continue to improve the internal and external devices so that individuals like me can benefit. After doing much research on my own and comparing the different devices as well as external options, I decided that the Advanced Bionics (AB) cochlear implant is the right choice for ME. On August 29, I was able to select my color and accessories! Another step closer on this incredible, decibel experience!!!
I didn’t have any other appointments until my actual surgery date of Nov 15. Thankfully I did not have much time to really think about the surgery as the beginning of the school year had begun and I was fully immersed in my educational audiology responsibilities.
Then all of the sudden it was November!! My surgery date was in 2 weeks and the countdown was real. The roller coaster ride of emotions came flying back. On the professional side, I knew that this was the right decision. On the personal side, I felt anxious, nervous, excited, and scared. I am a person who LOVES order and structure in my life. This is going to be a test of trusting the unknown and having faith through this process. I also know that this process is going to be a test of my patience, perseverance, and positivity.
November 14….Troy and I headed to Columbus for an overnight stay before the big surgery day on the 15th. I have to say that the roller coaster of emotions and anxiety had actually subsided and I felt a peace about the whole process. Troy and I had a wonderful dinner with some wine (before the 11 pm pre surgery instructions) and had a good night sleep.
I woke up extra early on the day of surgery and actually experienced a little sadness when I realized that my left hearing aid which has been a part of me for over 40 years was no longer going to be part of me. At 6:45 AM we arrived at the Ohio State Brain and Spine Hospital to get checked in. Got all prepped for surgery with IV’s, heart monitor, and other prep. Met with the anesthesiologist to go over health history. Also met with Dr. Adunka prior to surgery and he was ready to roll. By 9:15, I was being wheeled back into surgery and next thing I know it was 11:45 am, I was being “woke up”. The anesthesiologist asked if I knew where I was and I was able to tell her the hospital. They asked me a few other questions and wheeled me back to recovery.
I found out in recovery that Dr. Adunka had called Troy. The initial report was all positive! No complications during the surgery and he felt confident that the internal device was inserted without complications and he felt that he was able to save some of my residual hearing! It will be hard to tell exactly with all of the fluid and packing, but I am hopeful for this! I have now been initiated into the BIONIC ear world!
In recovery, I was in localized pain (obviously) on my left side. I did end up taking a high level pain pill to help with the initial shock to this side. The nurse also wanted to be sure that I was able to walk. The moment of truth to see if my one fear of dizziness after surgery was going to be there. I was able to get up with a little unsteadiness, but overall, I felt pretty good! I got to see what I looked like too. A big white softball sticking out the side of my head and some really crooked glasses
By 1:45 we were on the road back home to recover. By this time, my appetite had returned some, but my jaw and throat were hurting. The only thing that sounded good was a Wendy’s frosty and some French fries! Something soft and something cool! By 4:00 I was on the couch with my wedge pillow, lots of meals from my mom and friends, flowers and cards of inspiration, and ready to take a nap. Kept up on Tylenol every 4-6 hours and drank lots of water and hot tea. The first week I experienced some good and not so good recovery days; each day I felt physically stronger and more energy. I continue to have the feeling of pressure/fluid in my left ear. I also experienced some blurry vision (when reading), which also can be a side effect of the surgery and vestibular disturbance. The vision cleared up about 5 days after surgery.
One thing that I knew as an audiologist and as a patient, was that I am going to be without hearing (or very little!) post CI surgery. However, nothing quite prepares you to have a sudden unilateral hearing loss. All of my life I have experienced the same degree of symmetrical hearing loss in both ears (audiogram). These past 10 days have created a “profound unilateral” challenge by taking away all of the hearing in my left ear. At first, I did not notice it too much because the physical pain of post surgery was on my mind. After 5 days of being in the house and getting stir crazy, I felt well enough to venture out. Getting out of the house immediately challenged my “profound unilateral” loss and what a challenge it was! I quickly become hyper aware and alert of my surroundings. I could not localize where sounds were coming from and kept scanning my surroundings to be sure no one was actually trying to say something to me. Listening fatigue is REAL and emotionally and physically drains. Each small venture out resulted in a nap! Maybe this is God’s way of preparing me to embrace the little wonders of sound when I am activated with the CI.
Remember listeners, at this time in the journey, I have not been activated. I remember the feeling of discouragement creeping back in my mind with those initial questions...Was this the right decision? Is this going to work? Except now, there is no turning back. Timing is everything. I was watching Netflix and the episode “The Call to Courage” by Brene’ Brown popped up on shows to watch. In this episode, Brown talks about vulnerability. She describes vulnerability in this way; it is not about winning or losing, but it is about showing up when you don’t know the outcome. She also talked about choosing courage over comfort and the need to be brave in our own arena. If we deny our story, the story defines us. If we own our story, we write a brave new ending!
December 4,2019 finally arrived. Troy, Hannah (my daughter) and I arrived at OSU for the long awaited day. My audiologist, Dr. Debby LaPrete and AB Clinical specialist Dr. Johnny Sabol were all on board. The appointment started with measuring residual hearing in the left ear and I am still astonished that Dr. Adunka through surgery was able to preserve so much of my low frequency hearing. After all of the preliminary testing and acoustic verification, THE moment of anticipation was finally here. Once the impedances/electrodes were checked, it was time to start the mapping (or programming) process. Dr. LaPrete hooked me up. This was the first time I got to experience what the magnet and cochlear implant processor would feel like on my head. I was surprised that the headpiece/magnet really was not tactilely noticeable once it was in place. I imagined some sort of magnetic strength that would feel uncomfortable on my head. Next each of the electrodes was tested individually through the programming software. I had to subjectively judge the perceived loudness of each of the 16 electrodes ranging from low to high frequencies using a loudness growth chart (ranging from no sound extending through too loud). Once I reached a subjective comfort level, I felt like I was at the eye doctor trying to figure out if “1 or 2” was clearer. Once all of the soft and comfort levels were subjectively determined, it was time to experience listening to ALL of the electrodes together…the real CI activation experience. It is REALLY hard to describe what you have never heard, EVER. At first I didn’t think that I was actually hearing anything at all. I kept thinking that I was hearing some sort of hearing aid feedback. This was the aha moment that I realized I was actually hearing sound from the activated CI. The best way for me to explain what I initially heard is feedback, bells, chirps, and whistles.
The activation continued with quite a few listening situations in which I would listen through the CI only (take out my hearing aid and plug up my ear), as well as listen with both the CI and hearing aid (bimodal) to make sure that I could tolerate both at the same time. At one point later in the mapping session, Dr, LaPrete turned off the CI for and I just had my hearing aid in. I know I was exhausted from trying to make sense of all of this sound and I made the spontaneous and fatigued comment, “oh, back to normal”. Debby and Johnny immediately asked if I could expand on my “back to normal” (hearing aid) and the CI. The analogy that came into my mind was that the CI would be like going to New York City for the first time. It is busy, noisy, full of activity, exciting, and overwhelming. The hearing aid would be like going out for a weekend drive in the country. It is a calm, quiet, leisurely, tranquil drive through back country roads.
One-week post activation and what a world of jingle bells and many more sounds abound! I am fascinated that with just one week of intentional, dedicated, full time use of the cochlear implant as well as auditory training my brain is creating a whole new network to make sense of the multitude of sounds and speech that I have never heard before. I can personally attest that I will need a lot of listening training to make sense of this whole new world. I am thankful for my Auditory verbal therapist Dr. Denise Wray who pushed me to make sense of sound and benchmarks listening skills to challenge me to train my CI and listening brain. Each day the CI sounds gets a little more focused and clearer, but the key is to have the mindset of intentional, dedicated, full time use of the CI so that it becomes more natural and part of who you are! I am sure that I am going to be learning more and more about the refining process, but one of my initial goals was to dedicate myself to full time use of wearing the CI during my waking hours.
With that being said, I had many initial hearing discoveries. Here are a few of the highlights!!
I had to take the dog collar off Josie when we went for a walk because the metal dog tags were annoying me, hence I have never heard dog tags clanged together
The turn signal in the van is audible! I could always see the light flashing knowing it was on, but it is audible too!
I heard the sound of freezing rain hitting my windshield as I was driving! (Ohio winter is on its way!)
My feet making a crunching sound when walking on salt that has been freshly strewn on the icy road
The carts at the grocery store are loud and squeaky (and quite annoying!). Does anyone spray these things with WD-40?
Christmas and Holiday MUSIC!
LIsteners, I could continue to share many more CI hearing celebrations with all of you. I encourage you to go to my blog, hearingspanglish.blog to read more about this journey over the past year. With all of the craziness in the world, I want to thank all of my listeners for celebrating my 1 year CI birthday with me.
Thanks for listening to the empowEAR audiology podcast. Make sure to visit the website at 3cdigitalmedianetwork.com and click on the empowEAR podcast where you can subscribe to the show in iTunes, Spotify, and Google. Also engage with me on my FB page at empowEAR audiology. While you are at it, if you found this show to be valuable, consider giving me a 5 star rating or simply tell a friend or colleague about the show. As always, thanks for listening and being empowEARed.

Episode 7: empowEAR Audiology - Dr. Gail Whitelaw & Dr. Katie Colborn

17:03:45 Welcome to the empowerEAR Audiology Podcast. My name is Dr. Carrie Spangler and I am your host, I am a passionate audiologist with a lifelong journey of living with hearing challenges in this vibrant hearing world.
17:03:59 Thank you for listening and I hope you will subscribe and invite others to listen and leave me a positive review.
17:04:07 Today, I'm really excited to have two different people on the podcast today, because we are going to be continuing a conversation about campUS, which I have a passion for working with teens who have hearing loss, and in the last episode, I talked with
17:04:26 Dr. Gail Whitelaw, the CO coordinator of the campus program, and we talked about our passion of developing the program and sustaining the program, and today I am excited because I have both a counselor and a previous camper, who was going to be a counselor,
17:04:47 but because of COVID was unable to on the podcast today so I am going to let each of them give a little introduction, just who they are and where they're at right now and as we get through the podcast are going to learn a lot more about the incredible
17:05:06 ladies so I have Dr Katie Colburn, and this podcast and I also have Audrey Susz on the podcast as well. So I'm going to let Dr. Colburn introduce herself, Katie if you want to give a little background about yourself and then we'll let Audrey.
17:05:25 Sure. So, as Dr Spangler said I'm Dr. Katie Colborn, I recently graduated in May with my doctorate degree in audiology from the northeast Ohio AuD Consortium, little bit of a handful but basically it's just the consortium with Kent Akron and Cleveland Clinic
17:05:54 and then upon graduation I was actually hired at the Cleveland Clinic, as the newest pediatric audiologists, so just taking the program and kind of expanding it out using my knowledge of my own personal experience with hearing loss as well as everything
17:05:57 that Dr Spangler and all of my other mentors have taught me. Well thank you thank you for being on today we're so excited to have you and Audrey, can you tell a little bit about yourself too.
17:06:09 Yes, of course. So as Dr Spangler said my name is Audrey Susz. I am a sophomore at The Ohio State University.
17:06:18 I am a psychology major and I also have a double minor in Speech and Hearing Sciences and Disability Studies. I'm not quite sure what I want to do yet my future I somehow want to integrate all three of those subjects into a job, but I'm still trying to
17:06:32 figure out, you know through different resources and different classes what exactly would be best for me. And yeah, good yeah so we have a buckeye on the call today to which is exciting.
17:06:46 So I thought we would just kind of go back a little bit and just kind of share how we know each other how we kind of met each other so I don't know, Katie Do you remember how we met.
17:07:00 Yeah, so it was my second year in grad school, and I was doing a rotation and the Kent clinic, and they told me that I would actually be working with an educational audiologist that day.
17:07:17 I'm hoping with some add screens or auditory processing disorder evaluation, and they said you know you might like this one because she actually has hearing loss too and I was like, Yes, finally somebody else that has kind of like been through my journey,
17:07:27 I can kind of help guide me with like everything else that I have going on so it was very distinct memory.
17:07:34 and can kind of help guide me with like everything else that I have going on so it was very distinct memory. I have I completely remember meeting you that day, because as soon as you told me that you had hearing loss. I think we were in the developing
17:07:44 stages of planning campUS for that. Yeah, and I had already known you for maybe an hour, and I was like she would be a perfect counselor for campUS and you jumped on board which is really exciting.
17:08:02 And you had a lot of other things going on too but we don't have talked about all that but you were starting a family you were to school you had lots of, lots of excitement going on that year.
17:08:18 And then Audrey How did we meet.
17:08:22 So I was really young when I met you I believe I was in like third or fourth grade when you performed a functional listening evaluation for me, because you were my educational audiologist and worked hand in hand with my intervention specialist, Sandy Proccacio
which I still work with very closely to this day.
17:08:39 But I really got to know you because of your Hit It program, which stands for hearing impaired teams interacting together, and I started going around.
17:08:49 I think high school, and I really got to know you very well because you were such an important part of that program and you made me really learn a lot about advocacy and talking with other people that also had a hearing loss, and ever since then we've
17:09:02 And ever since me just been super close that I was so glad that you joined that you joined us for the Hit IT program because you were such an incredible mentor for all the middle school kids and all the new people who decided to come or students that decided to come.
17:09:20 So it kind of goes hand in hand with the campUS program as well.
17:09:24 But before we get too far into the campUS program.
17:09:29 Do you guys want to share just a little bit about your own hearing journey and, kind of, you know, when you were diagnosed and what kind of technology, you use right now.
17:09:41 So Katie want to start. Sure, Um, so it's kind of complicated story with me. I grew up with Big D def grandparents who signed only and they don't use any amplification.
17:09:53 So I learned how to sign from very very early age. Actually, before I started speaking I was signing. And then when I was probably in about third grade my younger sister was diagnosed with hearing loss, and got hearing aids as well.
17:10:08 And then I failed a school screening and high school is my freshman year, and they decided to send me to her audiologist, they didn't believe it at first, the numerous audiograms on me and figured out that I actually have something called EVA or and enlarged
17:10:23 vestibular aqueduct which is the same thing My sister has, which believe it or not, is not hereditary, my grandparents.
17:10:32 So, after that, they sent me with my first pair of hearing aids. I was a little reluctant to wear them didn't start consistently wearing them until grad school when I got a new pair that streams on my iPhone, because who doesn't want to do that.
17:10:47 And then you know just from there I started wearing to hearing needs right now so it's been a pretty crazy journey but I wouldn't trade it.
17:10:58 Oh good yeah and you add so much to that campUS experience because not a lot of teenagers really want to wear their hearing aids or their amplification so to have to start your journey.
17:11:16 During that time of adolescence when you've gone through so many changes and you want to fit in and there's something going on, just adds another perspective to the campUS experience.
17:11:26 So, Andrey you want to talk a little bit about your hearing journey. Of course, so I was born with normal hearing we think about each three, I got to hearing aids.
17:11:40 I was diagnosed with a bilateral sensorineural moderate hearing loss mild to moderate, and then over the years I progressively lost it on. And eventually, I became profoundly deaf in both ears.
17:11:55 and then when I was 10 almost 11, I received a cochlear implant on my right side.
17:12:00 And that's currently what I'm wearing right now and then in my left ear I still have a little bit of hearing left but I don't wear any assistive technology with that.
17:12:08 And I'm doing really well. I love my cochlear implant. You are an inspiration for me when I went through my whole cochlear implant process last year. And I know I met with you and your mom and you still remember them because you were a little bit older when you
17:12:26 went through that process so you were able to kind of share with me your journey through that which is really important, which kind of gets me to my next question is, I know Katie, you have a sister and you have grandparents who have hearing loss but
17:12:42 did you ever know anyone else outside of your family that had hearing challenges. I did not not until actually I went to campUS, and started to me so and the other counselors that were in the AuD programs with me.
17:12:58 And it kind of made me realize and kind of helped me understand the importance of not only wearing my devices but knowing interacting with those around me that I've learned during last.
17:13:10 Yeah, and to think about, I guess, you know your choice of going into audiology is, I'm just gonna kind of go off a side question there being reluctant to where you're hearing a high school.
17:13:25 When you diagnosed and then, not knowing anybody outside of your family. How did it kind of steer you into audiology and I think you're such a strong advocate now for kids and to you.
17:13:40 But if you look at your history you by will think that. Yeah, yeah. So I actually first started to think about audiology because like watching my sister, my sister was diagnosed late later than usual.
17:13:55 And just like seeing how hard it was for her to catch up to her typically developing peers are typically hearing peers, really made me realize how much advocating and educated, we need to do as audiologist for parents for other professionals you know anybody
17:14:11 really that interacts with kiddos on a daily basis. And then after you know kind of watching my journey through it, it made me understand how important it is to really connect with those around you who have other, like other hearing disorders, because
17:14:26 I think had I had that I wouldn't have been so reluctant and so shy to hide my devices.
17:14:35 Yeah, and I hear that a lot from from teenagers to they meet someone else and they're like, Oh, I'm not the only one, right, it's not just my grandparents that have this going on because that's a lot of times just in the normal public or, you know, the
17:14:51 mainstream world really associate hearing loss with getting old. And so a lot of times we don't really associate hearing loss with the younger population, and it does impact the younger population.
17:15:07 So, Audrey Did you know anyone outside of yourself and When was the first time you met someone else with hearing loss.
17:15:25 Yeah, so I actually was really on when I first met somebody that had a hearing loss. I mentioned before my intervention specialist Mrs Proccacio. She works for everybody in my school district that has a hearing loss so naturally whenever she had a new
17:15:33 person with a hearing loss, I met them as well.
17:15:36 There was a guy at my first grade class that had a hearing loss.
17:15:41 He eventually moved out. But then, one of my best friends. Her name is Leah Messmer.
17:15:47 I met her when I was in sixth grade and we have been best friends ever since I still keep in touch with her a lot. And then I believe she works with like 15 other students I also have a hearing loss.
17:16:01 And if we're in the same school we try to have a similar time period where we can sit down, we can learn about advocacy skills we can learn about hearing loss in history we can learn about different strategies that we can promote in our school problems
17:16:18 arise and it was a really, really enriching experience and I'm also very lucky to have other like you know Hit It and campUS, so kind of expand my community as well.
17:16:30 Yes, and I wish every school I had a Mrs. P, because she is amazing, and the sense that we know how important advocacy is and we're not going to know those skills, as someone or an individual with you.
17:16:48 Unless Unless somebody teaches us, because we don't know what to ask for we don't know what to ask for it. And so that those are really important concepts which kind of brings me to the campUS experience and why I had said in the first episode with Dr.
17:17:06 Whitelaw really what campus was about and similar to both of you I went through mainstream type school and didn't really know that many people with hearing loss and didn't have the opportunity to learn about advocacy in my high school, and honestly
17:17:27 through college, either. And I was missing that so much with really personally gave me the idea of the campUS experience and that's when I said Dr. Whitelaw you need to come and help me with this would be a great team and that's kind of how we got started
17:17:45 with, with the campUS experience but we wanted an opportunity for teens throughout Ohio and beyond to be able to network and have a positive transition experience.
17:17:57 So I thought, you know, we would talk a little bit about the role of the different people involved and Katie you were at counselor for a couple of years, and so can you just talk about how you got involved with campUS and what your role was and how you
17:18:18 felt like you were all really helped with the campUS experience.
17:18:22 Yeah, so, um, I kind of got involved, like you said earlier, just by you know you bringing up the idea of campUS and kind of explaining it to me. And it just kind of started to spark, all of these different you know ideas in my head about why I need to
17:18:38 be doing this or you know how much I wish I had that as a teen and so I wanted to help somebody else have that experience about feel the way that I did growing up.
17:18:49 So, you know, as a counselor, you're just kind of there to not only educate and advocate for the students but to show them what they can do, not what they're limited by.
17:19:00 And then, you know, just being a voice or, you know, a set of ears for them to just really come to and talk to because it's a hard thing to go through, and it's even harder when you don't have other people around you that understand what you're going
17:19:16 through. So you know, like my favorite part was just when we all got together in small groups, and some of the campers who started kind of explaining what they've been going through and all the emotions, they had built up and bottled up inside, and they
17:19:29 didn't. They didn't have anybody older to really talk to about it so just being able to be there and to listen to them it's all they needed. So just a follow up question Katie is you had said that you had not really met anyone outside of the family
17:19:46 until the campUS experience and you met some counselors and some of them happened to the other AuD students, who also had hearing loss so from that perspective as having those mentors of other counselors, how did you feel about that and when did that
17:20:04 bring to you overall. yeah so I just, it's such a small community to have other you know audiologist in general who have a hearing loss that we kind of, we have to stick together and we have to help each other through it so you know just having those
17:20:20 other connections, right off the bat where you know I'm struggling in a class I can reach out to Peyton or you know John and just ask them like hey, how did you get through this class what devices, did you use what did you do differently, what am I missing,
17:20:34 what kind of resources do you have available at your school that I could look into getting for myself, so.
17:20:41 Yeah, and I think that was one of the gifts for me and then in charge of this student or the teen track and the counselors was and it was almost a byproduct of campUS like I didn't realize that, you know, we wanted to get all these teens together,
17:20:58 who had not met anyone. But then, all of you as counselors and younger adults, 20 something, you know, who hadn't met anybody either and kind of almost like this trickle down effect that really was amazing.
17:21:14 Another component of campUS that just, you know, was fulfilling but me and one of the co-coordinators too.
17:21:23 So, Andrey as a camper. And what what do you feel like was positive for you and what did you feel like really.
17:21:33 You left campUS at, you know, knowing or learning or connecting with.
17:21:40 So, I was a camper for two years. I wish I could have gone before because I knew it existed longer but I couldn't do the other commitments but I'm just going to campus in the two years I have learned and met so many positive people, and it's really cool because
17:21:58 you look at it as you know the counselors are helping the campers there's also like the campers often the counselor that Katie said, I'm just talking about experiences and opening up to other people.
17:22:08 It's very rare for me to do that because I feel like Not a lot of people understand, you know what other people are going through unless you're going through it too.
17:22:16 So it was really cool to see how other people are also going through similar struggles, and you're not alone in the process even though every person hearing loss journey is different.
17:22:25 We all those things in those same core experiences that it was really cool to kind of break down and talk about, and we always have like a guest speaker that comes, that's like somebody that is just a really positive influencer I made like
17:22:41 such a big impact in the hearing loss community, and I always enjoyed listening to like the different speakers every year. And it's always cool to see like the growth because usually it's like with the people returning back every year so it's really cool
17:22:54 to see like the growth that every person has exhibited at like the past couple of years. And like their careers and education.
17:23:03 Yeah, I always like the keynotes too we, and that I explained it and I said that we try to get celebrities in the hearing loss world to Come talk about their journey and we've had the community and then they, you know, Miss San Antonio and Miss Pennsylvania,
17:23:21 and just different people who had done different things and been successful, and they had not let hearing loss, really define who they are just kind of expand who they are.
17:23:33 But I, I guess I want to go back to a question for you.
17:23:38 I always get from either. Sometimes parents, and sometimes teams like, I don't need to come to something like this like I feel like I'm fine like I, you know, and I think about you, like you were a cheerleader at Hudson you were involved in lots of different
17:23:55 clubs and people might look at you and be like, you know, you're fine like why do you need something like this. So, what can we share with others, whether it's parents or teens about campUS and, and why they might want to give up, 24, to 36, hours of
17:24:13 their life to have this experience from the outside and it looks like Sometimes a person is doing amazing, and well I don't let me hearing loss to find me there are you know bad days that I have really struggling there are great day for I'm driving and,
17:24:22 you know, I'm the kind of person that doesn't really let that be known to other people. So I feel like, you know, your own judge of character your own judge, hey maybe like this can completely do that this can be something that can really help me.
17:24:45 And it's, it's never a bad thing to go to campUS. I mean, I always learned something new, you may think that oh you know I did this last year or I'm fine, but there's always something that will surprise me there's always new people that you're going to
17:24:56 meet and in the future, especially if they're going to college or they're going into like a career. It's good to have connections to people that have experienced it before you and while you may not think that they're going to have problems in the future
17:25:11 you might and you may want to connect with those people that have similar experiences on you. Katie do you want to add anything to that?
17:25:34 Yeah, so with Mackenzie, I mean Mackenzie is like you said in a mainstream classroom I mean she knows other other students with hearing loss she interacts with them on a day to day basis, but I think you know her just being there she's a very shy person,
17:25:50 but her I think coming with me and just being able to interact with other people, it's a safe space so she doesn't have to feel like she's pressured to do anything.
17:26:00 It's a time for her to be able to open up on her own and to talk, but also to learn about a lot of the advocacy things that are missing in you know mainstream schools where they don't have somebody dedicated to teach them that I think it's very important
17:26:14 along with parents, because even though my mom had two with hearing loss over at completely different ages. She really learned a lot about how to advocate for your student but how to let them advocate for themselves and what kind of, you know, resources
17:26:27 are available because when I went to college I mean there was nobody to tell me like, Oh, you can get close caption and you can have a note taker you can, you know, have priority seating all those kinds of things and FM system, you know, for your hearing
17:26:40 aid. There was nobody really to teach her what to have mean even asked for so i think you know just for being there and meeting other parents, and it kind of also let my mom, create a support group for herself because you know it's not just about us
17:26:56 it's about the family as a whole, which is really why pediatric audiology spoke to me is because I can create this family centered approach.
17:27:06 And you know allow the parents to feel supported and not feel like it was their fault or they did something wrong or they're completely lost and they don't know what to do for their kid.
17:27:16 I think it just kind of brings the family together and allows the parents to feel more supported and more confident which then allows the students to feel more more supported and empowered.
17:27:26 So, yeah, and that is just another I think integral part of the campUS experience is where we do have a parent professional track that aligns, you know parallel with the teen track and having the parents come and being able to network with other parents
17:27:43 I feel. We have a lot of support for itty bitty for toddlers and infants at for support groups, and then all of a sudden, as a parent, you like we have to like go, and we don't know how to support our transitioning teenager to the real world and what should
17:28:03 I be thinking about and just different things like safety and communication and living on your own and all of the things that the parents really learned a lot about I think in that process.
17:28:17 So, one thing, Audrey I wanted to go back to you and ask you, you mentioned a while ago. Let me step back and Katie something. at you kind of mentioned that you didn't know about asking for captioning and asking for some of these services from when to go to college.
17:28:36 Andrey Do you feel like by attending campus. You felt more prepared for your freshman and sophomore year at The Ohio State University, and, and why.
17:28:48 Yes, definitely. Um, I did learn through my intervention specialist like growing up middle school, high school that those services were offered to various colleges, but because I always wanted to go to the Ohio State University.
17:29:01 It was really cool to go to campUS and see like people like you and people that would translate that were already up in a graduate program that had been through undergrad, it was too and they.
17:29:13 I actually personally asked them as well as you covered it in the program but I really got to ask specifically like what they did and what services helped them and maybe what they went through that, that they would have changed and for me to avoid so
17:29:27 I definitely felt a lot more prepared and my experience here with accommodations it's been amazing.
17:29:37 I guess, um, do you guys have any highlights of campUS that you want to just share with everyone who's listening today that may enlighten them or might even encourage them as if they're a professional to start their own type of a program.
17:30:02
17:30:07 So it being just highlights is the core of why you created campUS and why you're not you're a lot of continue to do is just the support the resources available are like none other.
17:30:19 So, you know, as a professional now actually practicing audiology that's something that I always want to offer my families, you know, like you said, there's a lot for the younger kiddos.
17:30:30 but when you get to those teen years It's hard enough, let alone having a hearing loss on top of it.
17:30:36 So just, you know, being able to offer that kid, these resources and so you don't have to be afraid of your devices you don't have to hide your devices.
17:30:44 You know, these devices are here to help you and, and not to limit to you but to push you even further to connect with people that you never would have connected with before.
17:30:53 So, you know, I think professionals really need to look at it as a whole and even attend because there's so many things that they could learn. You know, there's not only audiologists there to ask questions to but there's parents to get their perspective
17:31:07 there's teens that just speak up.
17:31:09 We have the, the counselor panel where they can ask, you know, any number of questions so along with the keynote, I think that it's really important for professionals to understand the audiology side of it and not to just treat the kid in a classroom
17:31:25 not worried about what goes on at home or social life or sports or anything like that. So, yeah, you do get such a different perspective and I, I'm always amazed that it's a 24 to 30 hour period of time, and the connection that is so strong that are made
17:31:45 by just bringing people together, and I feel like the lifelong connection for a lot of these teens and and counselors to that they kept in contact with as well.
17:31:59 So, Andrey Do you have a highlight.
17:32:01 Yeah, so I remember we always had like one staple activity that we did I think the last campUS that I attend doing me like these bracelets, where we had like one word on them, and I actually still have my bracelet and are you wearing it so funny I'm not
17:32:17 wearing mine right now but I wore like, every week, and whenever I'm like doing homework I always look at it because it's on my right hand and I look at it and mind says the word believe on it because it's a reminder for me to like believe in myself.
17:32:32 And just to go back to the person that I am I know that like my disability doesn't define me doesn't limit need to believe in myself and I can do it. And I'm not feeling confident or, I'm having a bad day.
17:32:44 So it's like those little moments that campUS brings and means it has given me, you know, that way so I've given me like positive memories, and it still reminded me a positive memory, like to later and I definitely think like Katie said like it's a holistic
17:33:02 thing.
17:33:05 Not many people have a team behind them like I did like educational audiologist and intervention specialist I had like a whole hearing loss community I was so grateful to have that you have to think of the people that most likely don't have that in your career bringing
17:33:18 this program to those people that don't have it you could be changing their life in the future for like that.
17:33:33 program to those people that don't have it you could be changing their life in their future for like the better.
17:33
17:33:48 So anyways, thank you for both sharing those highlights of of your own campUS experiences too because I think that's important for other people to hear and knowing hey I want to start a program or I want to offer this to someone would be, and I think
17:34:08 motivation by hearing both of your stories from the counselor perspective and having everybody who is in the shoes to the teen perspective, being able to go through a lot of these activities and to be socially connected is important as well.
So, again as we wrap up, I want to say thank you to both of you for being on this podcast today and be able to share you story and journey and I appreciate it so much. So thank you both for being on today. Thanks for having us. Thanks again and have a great day.
This has been a production of the 3C digital media network.

Episode 6: empowEAR Audiology - Dr. Gail Whitelaw 

[00:00:00] Welcome to episode six of empowEAR Audiology with Dr. Carrie Spangler.
[00:00:16] Welcome to ther empowEAR Audiology Podcast. My name is Dr. Carrie Spangler, and I am your host. I am a passionate audiologist with a lifelong journey of living with hearing challenges in this vibrant hearing world. Thank you for listening, and I hope you will subscribe ask others to listen and leave me a positive review.
MUSIC
[00:00:46] Hi everyone. My name is Dr. Carrie Spangler with empowEAR Audiology. I cannot wait for my listeners to hear the next two episodes of empowEAR Audiology. One of the areas that I am most passionate about Both personally and professionally is working with teams who have hearing challenges. Before I introduce our guest for the episodes.
[00:01:11] I wanted to share a little bit about the background of campUS. So when I was growing up, I did not have the opportunity to meet anyone with hearing loss. I also did not have the chance to directly learn about advocacy, to transition to college and work research tells us that. Social emotional learning and developing skills about self-awareness self-management social awareness and responsible decision-making is critical for lifelong success.
[00:01:46] In a nutshell, it is important for teens with hearing challenges, to have strong determination skills about their hearing loss to navigate through life. Through a combination of my own personal experiences and my professional knowledge of need. I am excited to share the campUS experience that I coordinate with dr.
[00:02:09] Gail Whitelaw. We knew that by creating a safe environment to allow for the same self connections and relationships, we could positively influence a successful transition to life. Campus in a nutshell, campUS is an overnight program for teens with hearing loss held at the Ohio state university where Dr. Gail Whitelaw work. Counselors; they all have hearing challenges as well, and they provide a strong mentorship as they share their own personal experiences. Keynote presenters. Are inspirational celebrities and their area of expertise, and also have hearing loss. Parallel to the teen track is a parent and professional track as well. [00:03:05] So come join me and the upcoming episodes. As we dive deeper into the benefit of bringing teams with hearing challenges together for a two day experience.
MUSIC
[00:00:37] I cannot wait to share this podcast with all of you today. One of the joys of the podcast is that I get to interview some of my best friends in the field of audiology. And today I have Dr. Gail Whitelaw with me. So Dr. Gail Whitelaw, she is an audiologist. She's an audiology faculty member and clinic director at the department of speech and hearing science at the Ohio State University in Columbus, Ohio.
[00:01:04] She's interested in many of the boutique areas of audiology, including working with patients with tinnitus, auditory processing disorders, functional hearing losses and pediatrics. And she also teaches in these areas. She's also interested in professional development, specifically leadership education and in clinic education.
[00:01:27] She's the past president of the Ohio Academy of Audiology, a past president of the American Academy of Audiology, a past chair of the board of governors of the American Board of Audiology. And she is a dear, dear friend of mine. And I'm really excited to have you today. Welcome Gail to the empowEAR Audiology podcast.
[00:01:51] Thank you, Carrie. I feel absolutely the same way and so honored to get to be here and talk about a topic that we love. And I get to talk about a talk topic I love at the same time. It's great. So Gail, I was just trying to think before this podcast tonight, today, how long we've known each other and how we really got connected.
[00:02:17] Do you want to share. Sure. You know, I think you and I were saying, I think we've known each other for like forever. and I'm quite a bit older than you. So my forever is a little bit different than yours, but you know, you and I had known each other, I think, more peripherally and, we hooked up at a Phonak conference in Las Vegas, where you came to me and said, I have this idea and we need to talk about it.
[00:02:43] And I was kind of intrigued about what idea you might have and what you were thinking about. And we trucked herself out to the pool in a casino in Las Vegas, which is a terrible place to have to have a meeting, but somebody had to do it and sat and talked about. What I consider to be one of the best ideas I had heard in a long, long time.
[00:03:05] And it's turned out to be a passion. I know for both of us. And I tell people it's a life-changing event. And that was thinking about a transition teen camp for, young. People with hearing loss, with hearing challenges who are going to be transitioning to the college, to the work world, whatever they're going to be transitioning to.
[00:03:24] You had this fantastic idea and you let me come along, on your dream. And since then, I think we've grown so much closer because we get to work closely on this incredible opportunity that. As I said, it's truly been life-changing for me. So, you know, we both have a passion for working with teenagers and, you know, I think a lot of audiologists who like pediatrics, like the little, teeny tiny, cute babies, and when they start crawling and I liked them too, but I think that I really liked the challenge of working with teenagers to watch them grow from childhood to adolescence, to adults.
[00:04:03] And see the influence that having great audiology services and great audiology support can have. So I love the fact that you saw that as a vision and a dream, and I have gotten to participate in it for the past eight years. So I know, and I. I agree with you about pediatric audiologists, really liking the little babies and the toddlers and the young ones.
[00:04:28] And then they roll their eyes. When you tell them that you love working with them teenagers. And I think really what drove me into this was a factthat as a teenager, going and living with hearing loss, I was the one and only, and I didn't want that for other
teens. Who were going into college and, and to the workforce to not have an opportunity to be empowered or have leadership skills and advocacy skills and self-determination skills that are really important for.
[00:05:05] For their life success. And I think that's kind of, again, how both of our passions with audiologists really came together to make this campus experience important for the teens. And so you mentioned, yes, we've been doing this for eight years, right. And, so. What do you think are some of the benefits of having our own campus?
[00:05:31] Well, maybe we should just start with, kind of, how did we, how would we get started? I mean, I know we talked about it and at the pool, but what do you think some of the components of making campus important for a success would be. Well, you know, I think first of all, it's a logistical issue of finding a place that's going to be comfortable to comfortably house.
[00:05:54]everybody that we want to have come, you know, our campers or students that come our counselors, you and me. parents and how we get them there because, you know, I, I do think one of the strengths of the program that we've created has been it's
phenomenal for teens, but we hear as much phenomenal from parents in terms of their interaction.
[00:06:19] And for some of them they're, they're kind of a one, and only, also they haven't had a lot of input from other parents. You know, I think it's funny because every year the same question comes up and I'll get back to your original question. But the same question comes up to say, how do you get your kids to wake up in the morning when they have a hearing loss?
[00:06:37] Because I go in and wake them up every day. And all the parents who have older kids are college students. Like, no, no, no. That's. Not what we do. We're going to shake awake and they've never heard of that. And it may, it's made me think as an audiologist, what more information we need to share, but I think there's a logistical component.
[00:06:55] And then there's the component of how do we develop a place where, what you talked about, where leadership can be, highlighted. Where our campers have the opportunity to work with counselors who have walked their walk. Every one of our counselors has, has walk their walk as a team with hearing loss. you know, I think that that's a really important aspect of it because I look at how much they bond to the counselors each year.
[00:07:23] And I think for a lot of these young people, they've never met anybody. Like you who's so successful or like our counselor. who are incredible. And I also think that the fact that we've had keynote speakers who have been just exceptional in so many ways, you know, we've had everything from comedians to musicians, to, TV personalities, to miss San Antonio.
[00:07:53] And every one of them brings their unique story to it. But I'm so glad that we decided to do it that way. because I think that it really highlights that hearing loss doesn't define people. And I think for a lot of kids, If they've not known somebody like that,
it really, in that same way, they don't really know that because they may be going through what typical teenagers go through.
[00:08:19] And, maybe they're angry. Maybe they don't have anybody to talk to. So I think those connections, those networks have been just critical, Carrie, and then the parent part for me. Has really been beneficial because it's allowed us to bring graduate students from a
number of graduate programs in Ohio, not just Ohio state, even though it's on the Ohio state campus, to come in and actually hear what parents.
[00:08:46] And their kids have to say. And, you know, I can't say those things as eloquently. And I remember the one year that we had a, we have a parent reception and the kids are all off having a great time at the recreation center and doing fun games. And the parents are sitting around drinking beer and wine and chatting each other up.
[00:09:07] And the one year when I usually asked, lasts like an hour and a half or two hours, and the one year were like three and a half hours into it and you had texted me and I was like, Yeah, we're still here. We're still, parents are still asking questions. And one of the parents went around and said to our students, I want you to be better audiologists than my child has had.
[00:09:26] What have you learned today that you will take with you and integrate into your professional practice? And I have to say that was really powerful to me and listening to what the students, my graduate students, our graduate students had to say was incredibly powerful to me. And again, these things are career changing for me.
[00:09:46] And I've been an audiologist for 36 years, and I'm still learning new things from these folks. So, you know, I think the main components are, how do we get a comfortable logistical environment for them, but more importantly, how do we bring in the right people and the right mix of people? And do things that are exciting and maybe the students haven't seen before, maybe the parents haven't seen before and that opportunity to create such a healthy, I think, a happy network too.
[00:10:14] So those are the things I would say, or have been really successful for us. Yeah, I agree. And I think maybe what I stepped back for a second for listeners, and just talk a little bit about. The schedule of campus. There's so much, I think, behind the scene that you and I do throughout the year, but just so our listeners can understand.
[00:10:39] out program, but maybe get some other ideas that might fit where they might be in their part of the country or they're stater the location. So do you want to share just a little bit about maybe the agenda or how they get there and then at the end. Sure. you know, I think that [00:11:00] one of the things, as I start to think about this is when people are listening, they're gonna be like, that's a really short period of time.
[00:11:06] It's a really short but intense period of time. So we run campus on Friday and Saturday. we start kind of a half day, a little bit less than a half day on Friday, but we bring our counselors the day before. And part of that is if you're going to run a program like this and you run it on, say a college campus or, through a school you may have to do protecting minors training.
[00:11:30] And so that's something that you need to be really aware of that we became very aware of, but the becoming aware of it has been fabulous from my perspective, because it's. Allowed us to do some things on the Ohio state campus. And so we have our kids move into the dorm. parents do not stay in the dorm.
[00:11:50] They stay somewhere else and there's beautiful places to stay around and. If they live in Columbus or the area, they can stay at home if they want. But I think that kind of defeats their purpose because I think it's lovely when they get to spend a little more time. Sometimes they go out to dinner together and stuff, but the day starts with our campers going on, meeting each other, talking about why they're there.
[00:12:12]Going out and doing a scavenger hunt. And we're very fortunate that we have the opportunity to, to work with our Americans with disabilities act office, our ADA office and our director of the ADA at Ohio state is Scott Lisner. And Scott has embraced everything related to campus for us. I think it's been great Carrie, because we just have to ask and it happens, We, you know, obviously if you're looking at something like this, we want to recruit a diverse group of kids, whoever wants to come.
[00:12:45] And so the diversity includes communication style. It includes, some are implant wears, some are hearing aid where some are not any wearers of anything. They don't want those things anymore. and they may be going through that. so we have them do a scavenger hunt and check out campus. And I think they always really enjoy that.
[00:13:06] And then, they eat dinner and one of the residence hall dining halls, and I am always kind of, Kind of entertained by that because of the fact that, I think for a lot of kids, they've never been on a college campus and I always tell people we're not trying to recruit them to Ohio state. Although a lot of them do become Ohio state Buckeyes.
[00:13:26] And that's fantastic because they have knowledge of the campus, but we want them to be successful no matter what they're going to do with college, isn't the way they're going, whatever. That's fine. But I always think it's fun for them to get to eat in the dining hall, especially when it's all you can eat.
[00:13:41] I remember our first year I was so worried because that kid who ate all the cereal, he was just eating like bowl after bowl or fruit loops. And he's like, this is the greatest place on the face of the earth. You get to eat all this food. And I was like, Oh my gosh, he's going to get sick. And his moms, dad are gonna be like, what did you feed him for dinner?
[00:13:59] I'm like, Oh look, 42 bowls of fruit loops. You know? that was a fun year. And then we split up at dinner time. Where Carrie, as you know, you take the kids and you guys go and do some recreational activities, and that's a great time for bonding. and I'll, I'll tell a story that really stuck out to me in that bonding experience.
[00:14:20] And then I take the parents. And any professionals who want to come and join us. And we do a, like a parent, I guess, open house kind of thing. And so those are two parallel tracks and I think they're both equally important. I think it's great that the kids have the opportunity to go and do some cool stuff, and interact, you know, with playing Dodge ball
or, you know, basketball, volleyball, or whatever they're doing, or they're just sitting around talking.
[00:14:48] It's really great. We send the parents off on their merry way and you take the kids back to the residence hall, back to the dorm and they do a lot of bonding there. They do, some getting to know you games and what I'm always impressed with. It's how quickly those experiences turn from kind of surface-y stuff like let's throw a beach ball and has words on it and describe something.
[00:15:13] That's a great activity, but they get really deep really quickly. And, I'm always amazed by that. And I wouldn't have believed that. If I hadn't witnessed it, but I think it's just, you know, it's a Testament to you and how we've set this up. And it's a Testament to the kids that come and they're so hungry for wanting to participate.
[00:15:38] And so then they go to bed, and then they wake up the next morning, nice and early and have breakfast. And then they go on their merry way. The kids go on their merry way to, doing activities on campus. Again, some more exploring, you know, what is, if you're going to be a college student, what does it look like to be in a lecture hall that holds 400 people?
[00:16:00] That's very different than most people's high schools. You know, I can't think of any high school. It has a 400 person Teaching room, an auditorium, perhaps, but not a room where there's teaching. we usually have whoever our keynote speaker is, and these are carefully selected by Carrie and me. And, oftentimes we have been fortunate to get them sponsored by a manufacturer.
[00:16:22]so they're, they're happy to have them come, but our keynote speakers like to come and play and have fun with our kids. To hang out with the campers, with the teenagers and have a great time while all that's going on. I usually spend my time in the law school at Ohio state, where we run the parent and professional group and we tend to bring in things, that might look at something like hearing dogs or something like, I know, how do you go about getting, you know, what used to be called BVR, but now it's called opportunities for Ohioans with disabilities.
[00:16:56] What are those opportunities there? People, parents always want to talk about hearing aid technology. Scott Lissner always does a great thing about when you're going to look at colleges. What might you want to ask about. When you're going to look at a college to see if it's friendly for the kinds of issues.
[00:17:13] And we know that they all should be friendly. That shouldn't even be a question, but we also know that some places are more diverse or broad than others and easier to work with. So, we do that then, the campers come over and meet the parents and we have a big lunch together. we can never order the right amount of food.
[00:17:33] So if you're thinking about planning something like this order, my best advice to you is order less food than you really need. Because you always have a lot of leftover food. The kids love it and they think it's really fun. And we've ordered fun things like Chipotle and city barbecue. And they've had a great time with that.
[00:17:52] And then we go back and I do need to go take a step back. one of the highlights for parents. Is the parent panel. we have parents of, of former campers. We've had Carrie's parents a number of times, and I think it's really nice for the parents to have somebody that they can look up to and say, you've walked this walk because those of you that have had kids who go off to college, you know, I have a 24 year old daughter and.
[00:18:20] I work in a university. I know what it's like to be in a university, but it's still a very terrifying thing for a lot of parents and parents are having things like, how can I trust that they'll actually have fire alarms that work? How can I trust that my daughters or sons roommate is going to be helpful?
[00:18:38] If there's an emergency? How can I trust my kids going to get up with that shake away thing? You know, you know, all those questions. And I've been so impressed with our parent panel and the only thing that ever tops it for me is in the afternoon, our keynote speakers speak. And then we have our counselors on a panel and I always find it.
[00:18:59] And maybe it's because. We know them we're vested in them, but I always find it the most amazing thing to hear these young people who are so accomplished and accomplished across a range of things are not all great students. Some of them are great athletes. Some of them are great workers and they love their jobs and it doesn't matter what they're great at.
[00:19:19] They're great human beings and great role models. And so I think that that's always something for me and the kids always love the panels. But the parents love it too, because I think for a lot of them, You, and I have heard so many times Carrie, that parents still have all these questions that we as audiologists, haven't always answered.
[00:19:40] And sometimes they're things in Ohio school for the deaf did a study a number of years ago. And one of the things that parents of Teenagers were still asking us, why does my child have hearing loss? What kind of hearing loss do they have? I was like blown away by this because I assume we all do such a great job and I'm not being, I'm not trying to be anybody's critic because some of those kids are my kids.
[00:20:04] You know, they're kids that I saw. I thought it was the most clear communicator on the face of the earth and it didn't work out that way. So I think it's a really great opportunity for us to be reminded as professionals. But for those parents and for the kids to see, Hey, look at the success that's coming your way.
[00:20:21] And here are the things that I've done to work for me. How can we make that work for you? and not every suggestion obviously works for everybody. And at the end of that, Almost two days. I think it's really an emotional time. you know, you and I have had so many, I mean, I think we can talk about, we could talk all night about positives that have come out of this.
[00:20:45] It always changes me every year. We've done campUS. It changes me in such incredible ways. And I think it changes the campers that we work with. And I think it changes the parents and it changes professionals who come. And I think it's just an
amazing experience to see people bonding over something that gives them confidence and better.
[00:21:05] Self-esteem. Can I go on about one more story? A couple of years ago, we had a comedian who was fantastic. And, I thought he did such a great job with us. And, so there's two parts of the story. The first is he came, he was a keynote speaker. He had been on America's Got talent. he's hysterical. He had clean humor and he made a lot of jokes about his own hearing because he has a hearing loss and he stopped Carrie and I were sitting close to each other.
[00:21:37] You and I were sitting close to each other. He stopped. And he said, when I was in school, I needed you guys. I needed this campUS thing because I didn't want to wear my hearing aids. And I was a one and only, and he talked about all of that and I thought, wow, for an adult, who's really accomplished to still think back on.
[00:21:58] If I had had this, how much it would have helped me, that would have been fantastic. So he wanted us to come to see a show at the funny bone in Columbus. He was performing on Sunday night. So I went with a couple of our counselors and, He was, he did a really great, he was hysterical and he did a great bit, and we were going to go meet him in the, in the foyer when he was done.
[00:22:20] And there was a young girl that was there, maybe about 14, 15, and I thought he had to be over 18 to get in that place. So I was kind of shocked she was there, but I noticed she was wearing hearing aids. And I was kind of walking right behind she and her mom and dad. And she said to her mom, he was hysterical.
[00:22:36] And he said a lot of things that I wanted to say. But sometimes when people say those things, they're making fun of people with hearing loss. And I don't want to be made fun of, I just want somebody to get me. And when I was telling him this, I said, overheard this conversation, you have to hear it. He got teary.
[00:22:52] And he said, you know, That's what I want to hear. That's what I want to represent. So I think that those have been such incredible opportunities that I've been given through this program and to learn as an audiologist and to use that skill, not just at campUS, but year round with everybody that I see.
[00:23:12] Yeah, no, I agree. A hundred percent. It's just the makeup of the different aspects of the program really fit together like a puzzle and really impact on different levels, different people who actually have an opportunity to be a part of it. And I just wanted to add, so obviously all of our campers had hearing loss of some degree or.
[00:23:35]way, and the usually sophomore, juniors and seniors, they just graduated from high school. So that's kind of the population of campers, but I just wanted to add that one of the revelations for me when we started this, that I wasn't expecting was the impact that it had on a counselor. So I know that they are all about counselors.
[00:24:00] One of the criteria to be a counselor for campus is to have a hearing loss and you can have any degree of hearing loss. And some of them were cochlear implant users. Some
of them were hearing aid users, some of them used American sign language. So we had kind of a mix of, of different, counselors and. As someone who was kind of in charge of mentoring, the counselors as an individual with hearing loss.
[00:24:26]I got so much out of being able to mentor the counselors and some of our counselors had never had the opportunity to meet others who had hearing loss. And they certainly didn't have the opportunity to mentor anyone with hearing loss and. For me, I think one of the greatest joys, or I guess I want to, I don't want to call it a side effect of campus, but something I wasn't expecting was how much growth that these counselors had in themselves.
[00:24:56] And just being more, I I guess, motivated and unsure of who they were, because they were able to share their own story and their own struggles and their own. Of what they've overcome in their life. And I think by storytelling and sharing, you empower yourself in such a, a different way that you don't realize.
[00:25:21] And at the same time, they were being able to share their stories with these young teenagers. And they were so impressionable with all of our campers. So I just had to share that because I know that was just something. of campUS. I get so much joy out of when we get to choose a camp or a counselor that we, cause that's the one thing we are able to choose.
[00:25:46]And how much growth they've had. And I've just gotten to know, I still keep in contact with all of our counselors on some level, and they have just grown into incredible young adults and in the professions that they have chosen. So add on to that, but I think it's so funny is that. So many of our counselors have been audiologists or audiology students, you know, young audiologists or, you know, in an AuD program.
[00:26:12] And I think, I mean, several of them have said to me, I remember a couple years ago I took a couple of them to the airport. We had dinner at the airport, they were flying out and they were both audiology students and talked about their own journeys and how this would make them more confident about sharing with other people because of the feedback they got.
[00:26:31] But also. More aware of teenagers, because when they might've needed an audiologist, the most. Some, some of us might not have loved them the most. They were, my might've been the less, the least lovable of anybody that, you know, at that point in time in their, in their childhoods. And they were talking about their desire to work with this population and, you know, how it changed them.
[00:26:56] And I totally agree with you. And I always tell people we're not trying to [00:27:00] create Ohio state Buckeyes, and we're not trying to create audiologists. But I think for some of our campers, they've never thought about, you know, audiology would, might be a fantastic career for them and there's a million other fantastic careers.
[00:27:13]and so, you know, giving them exposure to people who love what they do, I think is just such a really important aspect of this too. I agree. And then you said too, and I wanted
to add this in because we, I think what, one of the great things that makes our partnership so great is that you had a university.
[00:27:33] So you had this facility, first of all, plus you have great. AuD students and speech, language pathology students within your own clinic that want to volunteer. And I think they get so much out of it. And then me on the other side, being in the schools as an educational audiologist, having a network of people within our state and neighboring States, because
we've actually opened it up to neighboring States to recruit campers
[00:28:02] And I think, maybe we should talk a little bit about that because I know people say, well, how do you get people to come? Right? Especially teenagers, teenagers don't want to step out of the comfort zone. And they may not even want to admit at this point in their life that they have a hearing loss. And why would they, they want to go to a camp for it.
[00:28:23] But students are teens with hearing loss. So. Any thoughts about recruitment and for people who might be thinking about starting a program, Yeah, I think that reaching out, as you said to educational audiologists, to children's hospitals to clinics, I think are great places. I think our partnership with Hands and Voices has been really strong and that's really helped us, you know, find some kids that we might not have found otherwise.
[00:28:51]and I agree with you. I think, I mean, I think about I, one of our former campers who I think. Really didn't want to come.And his mom kind of said, you need to go. And he was, he, he did campus on his own terms, but he got so much out of it. And he just told me recently, that he. Really really thought that those days were so precious to him
because he hadn't had been around a lot of kids with hearing loss.
[00:29:21] And so I think it's sometimes parents knowing better. And we all know that when you're a teenager, your parents don't know better in your eyes. They're not very smart. And they don't know a lot of things, but I think that we've had some persuasive parents. And I think we've also had some persuasive campers, you know, campers have posted things.
[00:29:39] We have a Facebook group, campers have posted on Facebook. you and I have a book chapter. Yeah. In, in the Flexer I'm going to miss up. Yes. Of all the names. Let's see. It's the. Madell, Wolfe, Shaffer book book. I think it's one of the only book chapters on teenagers with hearing loss. And, we have some things in there that are quotes from, from campers.
[00:30:04] And it's really easy to say I had this experience. You should come and have fun too. I also think that one of the things that works for us, and I said, it's a short time. That short time is a really good thing, because if you come and you really despise it, you're not going to be there for a long time. I don't think we've had anybody ever despise it, but you know, it's a relatively short time to take a risk and that's worked really well to put your foot in and say, and I think we've had so many people go, I wish we could stay here all week or can't we stay longer.
[00:30:37] So I think that that's a real big benefit to it. And just keeping that network open, you know, I think that we've had great success with people who were like, so when is
campUS going to be next year, that's educational audiologist, or pediatric audiologists or former campers, you know, what are we having?
[00:30:53] What are we doing it? And so I think that's a really. You know, word of mouth has been great, but also I think the campers and the counselors speak for themselves, they are the ones that are probably our best recruiting tools. Right? Yeah. I'll never forget. and I, the, the camper that is that, you know, book chapter who her mom had said, you know, she would have never said anything in public about her hearing loss to anybody.
[00:31:26] Her age or her friends or whatever. And her mom said after that experience she posted on her Instagram account, how. awesome her experience. And that was kind of that first time she stepped outside of her own shell in order to just say to all of her friends on Instagram, that this was the greatest experience ever.
[00:31:48] And this is a part of who I am and it's, it's great. It was empowering for her, I think, to kind of be able to say that out loud. Totally agree and that's, and let's face it. We all know this is not an easy age to come out with a lot of those kinds of comments or ideas because fitting in is such a big deal.
[00:32:09] And I think, you know, one of the things I've learned a ton about and part of it is because we researched a book chapter together, but that the age and stage of. Adolescents and young adults is probably one of the most tumultuous in our lives, more so even than, you know, infancy to toddler and as much as we do love those kids.
[00:32:32]I think that it's really easy to overlook the changes that the physical changes, the psychological changes, all, all of it, and it's hard enough being a teenager. And then to add on something that you might not want to share with other people to get that confidence, because, you know, you've brought up advocacy at the very beginning of this, Carrie.
[00:32:52]I think that becoming a good self advocate is one of the best things that we can help people do. you know, they may be afraid they may be afraid of other people's reactions. And when they see, I mean, you know, one of my favorite stories of all times wasn't related to campUS, it was related to a research study that one of our.
[00:33:08]audiology students. And I did, looking at teenagers and hearing loss and kind of what technology they were looking for. And this was like eight years, 10 years ago. And one of our, we had a group of a focus group of all young men and, you know, and we had one young woman in the group. And I knew the young woman's mother very well.
[00:33:27] And we, we met on a Saturday and the manufacturer we were working on what this was, videotaping them and all the guys left with their parents and stuff. And the mom came back in with her daughter and the daughter said to me, I have to tell you something. I never knew that guys with hearing loss could be hot.
[00:33:46] All those guys were hot. And I said to her, why would you think that she said, because you know, having a hearing loss is kind geeky of thing. I said, is that how you think of yourself? And she said, yeah, kind of. She said, but today was different. And I think every opportunity that we can give people to see themselves in a light that reflects
that maybe a little differently than they've ever reflected themselves is, is such a positive one.
[00:34:11] And I take that away from campus every year of. You know how great it is. Like you said, to be able to meet somebody and, really feels strongly about developing a relationship and a network with them. And now you've got the confidence to go out and talk about this. Right. Fantastic. It is. And then the fact that.
[00:34:30] At least the Campers that I still kind of keep in touch with. They meet for the first time, like you said, you know, they're together for a 24 hour period and they become the best of friends. So, and they meet up afterwards and they're connected on social media and that they cannot wait to see each other again.
[00:34:51] So it's just amazing how a 24 hour period and bringing. Together teens who have this similar one, similar connection can blossom into something of lifelong friendship that leads to this. Leadership and advocacy, and just really empowering these students to, I think, these campers, but so listen to the side one, create one of these.
[00:35:20] Okay.
[00:35:27] They said, well, how can you afford this? Like, we, we want to do something like this, but we didn't have no money. I jokingly call you and me the two broke girls. because we're always looking for, for financial aid and you know, part of it is. Your connections with Quota club and so grateful to the Quota for, for helping us out for seeing the value of this for tying it into their mission.
[00:35:54]you know, for you being involved in Quota club, I think that's given us a great start. For us going and talking to manufacturers about our passions about this and why it's important. You know, one of the things I didn't mention is every year Phonak's sends us a box of equipment because a lot of these kids stopped wearing, DM technology when they were little kids and they didn't, you know, they, they.
[00:36:17] They didn't like it anymore. And now they didn't know, things have changed so much and they're so much better now. I think that we've been lucky with manufacturers supporting us. We have parents say to us, and it's not a lot of money, but we have parents say to us, you know, let me contribute. We have families pay $25 to secure a space.
[00:36:37] And if the kid shows up, we give them their $25 back. And most of the parents are like here to keep the 25 bucks. You know, it was worth way more than that. And, you know, I think if I were going to start this again from scratch, or maybe in our ninth year, we might want to look at setting up a, you know, a not-for-profit or a, you know, kind of, five Oh three, experience so that we can fund this a little bit differently, but we've been very, very fortunate.
[00:37:02] And I think the thing that you and I both value, is having access. And I would love for us to have more access, but kids have never really paid to have to come to campus. We've covered all of our expenses. We have gotten some donations, student academies of audiology, both at NOAC and at Ohio state have been very generous with their.
[00:37:24]resources to us over the years. And so I think we've really been able to do a lot and we're pretty, you and I are pretty frugal too, so we're yeah, good deal. Right? Yeah. We've gotten some good deals on stuff. And, the university, we, we work to minimize our costs there and, and ha, and I mentioned, Scott Lissner earlier as our ADA coordinator.
[00:37:47]if you can get services like captioning donated or. interpreters donated. that's an amazing opportunity. And I also think it's interesting because interpreters always say to us, [00:38:00] wow, this was such a neat experience for us. This was so changing for us. And, you know, I think that they kind of fight over getting to come to the campUS.
[00:38:10] If they, you know, if they've interpreted for us one time and they're coming back, they're like, what is that going to be next year? We want to sign up. Yup. I think that's a really cool thing. So we've been able to fund it based on our own grit, determination, and a lot of generosity from a lot of really incredible people that are in our field and outside of our field.
[00:38:29] Yeah, no, I agree. And I think every year grows and people know more about it, so they're more willing to help us out financially so that we can continue to provide this opportunity for the students in the campers and the counselors and the parents and everybody involved in this opportunity or this event.
[00:38:53] So what do you think? I think we should end up with, you know, if somebody was. Thinking of starting a teen program of any kind. I mean, what do you think some of the big advice or components would be the main components of the program? I think we probably hit on them, but just to kind of review is finding a logistical situation.
[00:39:19] That facilitates people coming together comfortably and having some fun activities to do. So I could even see, like at a state park lodge, you could do something like this. university campuses have a lot of cool stuff like recreation centers. And, you know, I think that that's a neat thing that.
[00:39:36] You know, kids can get together and have fun. It's not just sitting, listening to lectures all day long, which I think some of them think that's what this is going to be and really interact on a lot of space. I think having a great group of volunteers is really fantastic. You know, I look at our, our ratio of.
[00:39:55] Counselors and volunteers to campers and they get a lot of attention and I think that's appropriate. you know, you mentioned about the AuD and speech pathology students that we have. if I were creating a program like this and I wasn't associated with the university, I would get myself associated with the university because.
[00:40:13] This is so important for AuD students and SLP students, to be able to see this in action. And they're going to be some of your best, like people, you know, one of our AuD students who's back, he's finishing his PhD. Now. I said to him, jokingly that. I didn't know how we existed last year without him, because he's been such a stalwart for us.
[00:40:35] So, you know, running and getting bottles of water. If you need something like that, having somebody who can take on those roles and counselors is just critical to find, you
know, if, if you don't know young people. With hearing loss at my service counselors, it's very easy to find them because I think they have a passion for wanting to do this, as you said, and then, you know, finding the right group of campers, reaching out to kids, I would love to see us do what I said this or already.
[00:41:03] I would love to see us do more outreach. We have an educational audiologist in Ohio who said to us. Our kids can't come because their families couldn't drive from where we are to Columbus. They couldn't afford to do that. And you and I have talked about, you
know, how might we open that up to getting gas cards or, you know, providing overnight accommodations just for them in a different dorm.
[00:41:23] Cause they can't stay with the kids. you know, what might we do? How might we fund that? So I guess I would always also look at diversity. Not just in terms of device or technology or communication, but in every way that you can, so that we could. So you can impact as many lives as possible. those would probably be the key things that I would think about having somebody fun.
[00:41:46] If you're going to do a camp like this, having somebody fun as a keynote speaker. And one of the things that surprised me is how many people are out there that are in our world. That, you know, have hearing loss or hearing, challenges that are some kind of person that you'd be interested in. You know, one of our former keynote speakers is on the Pittsburgh news.
[00:42:07] She was a former miss Pennsylvania. And, she just posted this incredible thing last week about. She's a cochlear implant user and how masks have been terrible for her. And so she did all this research on masks that was shown on Pittsburgh television that we posted because we wanted people to see Elena.
[00:42:26] But, I think it's amazing that those people are so motivational and exist and are also tied into campUS that they see this as. So that's a great thing for them to be involved in. So if you're looking for people reaching out is pretty easy because I think people want to be involved in your mission.
[00:42:46] It's not as difficult. I shouldn't say that. Cause I think we put a lot of work into this, but it's not as difficult as people seem to think it is that it's an easy mission to sell and it's an easy, it's easy to be involved with it. And if you, if you're involved once. I mean, I've had students, former students say to me, I missed that.
[00:43:04] And I'm always like, you know, you can come back as a volunteer. I don't care. I'm happy to have you, if you're in the area or you want to come in for the weekend, come please come. So I think that it's an easy sell and it's just finding the right people to help you do work with the cell and reaching out.
[00:43:22] Right. And I think like what you said before the, we put a lot of time and energy and effort into it, but what we get out of it is so much more than what we put into it. And like you said, every year, I guess I get renewed on. Being an audiologist and being in the profession that we're in, because I learned so much from everybody involved that I just love what I do even more, every single year we do it.
[00:43:56] We make a great team. We do. And I so appreciate, you know, like I said, at the beginning of this, your dream and me getting to be part of that. And, it's, I felt very sad this year when we didn't get to do it in person. And I'm just, you know, I'm hopes and prayers for next year. That will be all back together in person because, I really was sad in
June because in June when we weren't that usually it's the second weekend in June that we do it.
[00:44:28] And I was like, Oh, I should be at Ohio state late now. In the dorm, right? We couldn't, like you said, hopefully in 2021, we will be back to the ninth year campus. And I just want to thank you Gail, for being a part of this empowEAR audiology podcast. And I just hope all of our listeners who tuned in today. Well, Think about supporting teams who have hearing challenges in one way or another.
[00:45:03] So whether it's a one day thing, whether it's a two hour thing, whether it's an overnight adventure anyway, so that these teens can meet others, they can gain. Leadership skills and advocacy skills, and just really empower themselves to adventure into adulthood. So again, thank you all for being on today.
[00:45:28] And it was, I always love our conversation. All the time. Great to talk to you, Carrie, thank you for the invitation and, hope that people really enjoy hearing about what we're passionate about. So me too. Thank you. You're welcome. This has been a production of the 3C Digital Media Network.

Episode 5: empowEAR Audiology - Dr. Carol Flexer

[00:00:00] Welcome to episode five of empowEAR Audiology with Dr. Carrie Spangler.
[00:00:15] Welcome to the empowEAR Audiology Podcast. My name is dr. Carrie Spangler, and I am your host for this podcast. I'm a passionate audiologist with a lifelong journey of living with hearing challenges in this vibrant hearing world. Thank you for listening, and I hope you will subscribe, invite others to listen, and leave me a positive review.
[00:00:40] I also wanted to invite all of you to visit and engage on the empowEAR Audiology Facebook page. So let's get started with today's episode of empowEAR Audiology . This episode has an important theme for all of us, and it is about lifelong learning. So when we allow new information, people and experiences to change who we are, we are open to the concept that lifelong learning is critical to who we are
Today I have the great honor to interview someone who has made a lifelong impact on my own life. She's been my audiologist, my professor, my mentor, and my friend. And so this interview will highlight the importance of fostering these relationships and how each encounter with people and information can be powerful.
 So before we get started, I would like to tell you just a little bit about Dr. Carol Flexer. So Dr. Flexer is an audiologist. She's a listening and spoken language specialist and a certified auditory verbal therapist. And she received her doctorate in audiology from Kent State University in 1982.
She's a distinguished professor of audiology at the University of Akron. And she's an international lecturer and pediatric and educational audiologist. She's the author of more than 155 publications, including 17 books. She's also the past president of the Educational Audiology Association, the American Academy of Audiology, and the AG Bell Academy for Listening and Spoken Language.
So, Carol, I am so excited to have you on this podcast today and, um, it is just, you know, thank you for coming and being part of this today. Oh, well, thank you so much for inviting me. You know, what? We have traveled such a long path together, and it's just my honor to be here with you. Thank you for the invitation.
Well, good. I am really excited to have you today. So I thought we would kind of start out with, how did you get started in the field of audiology? Well, going way back, as I was growing up, I always wanted to be a nurse. In fact, I was sure I would be a nurse. And so when, after I graduated high school, I went to the University of Colorado in Boulder, Colorado.
They had a five year nursing program that you would end up with a bachelor's degree. So I went through about two and a half years of that program. And then I decided no, nursing isn't what I thought it was. I think I want to be a doctor. So then I started looking at premed. And this was 1964.
And that also didn't seem to suit me. Then I looked at dentistry and, and I was just really looking all over for different sorts of hoops. Who was I going to be now that I wasn't going to be a nurse? Well, I stopped and then stumbled on broadcast journalism, which is just like nursing, right? How different could it be?
So broadcast journalism. And I loved it. So it's there that I really learned a lot about lecturing, about vocal control, about being able to use your voice and manage an audience. I mean, I had multiple courses and I loved it, but there wasn't an undergraduate degree labeled broadcast journalism.
It was a speech degree. And as part of that undergraduate speech degree, I had to take a course in speech-language pathology. Now they had heard of speech, language pathology. And, um, I actually really loved the course. And as part of this intro course, there was a two week lecture series on audiology. I had never, ever heard of audiology.
You know, many people and as a field know about it, or they know. I'm one with a hearing loss. I never knew anyone with a hearing loss. I mean, maybe older people, but even in my family, older people didn't wear hearing aids because. In 1964, 65, you just didn't. If you live long enough to need a hearing aid, you simply didn't wear them.
At least no one in our family. And believe me, they didn't need something. So I never, ever heard of audiology, but I fell in love with it. I mean, I just fell totally in love. It had everything, it had medicine, it had science, it had talking, it was all about talking and listening and communication. It was everything I just fell in love with. I had gotten married and I had some kids.
In the seventies, everyone got divorced. I mean, I don't know how anyone stayed married in the seventies. Truly everyone. I know I got divorced. It was just what you did. It was a little more than that, but not a whole lot more. Cause we were, we were in a whole different journey. It was a brave new world for women.
You know, we had so many more options. We can just have it all. We thought it's about time, but you know it's hard to have it all at the same time. Anyway. So, um, I then applied for graduate school. I had just gotten divorced and, uh, the University of Denver, cause I was born and raised in Denver. And at the time the University of Denver had an amazing program, master's program in audiology and speech, language pathology, and, uh, Jerry Northern was there, Bob Johnson. You probably don't know, but they were really big in the field at that time. Um, and so I, and I got a full scholarship. Yeah. I mean, a full ride. I got that. That's when there used to be money. Right. I got, it was a called from the rehab. It was a Bureau. Have counseling. And I got a rehab fellowship that paid tuition and I got a stipend.
[00:07:13] So I moved out of my marital home to my two little girls and we moved into married. Also. It was divorced student housing at the University of Denver. And that's where I found myself lot at that time at the university of Denver. I was lucky enough to work with absolutely amazing people. You know, I, I knew they were amazing, but I didn't know how amazing until some time had passed.
[00:07:44] For example, I did an externship with Marion Downs and with Jerry Northern Doreen Pollock, she was at Porter Memorial hospital and it was through Doreen Pollack that I learned about auditory, verbal therapy, listening and spoken language. Um, so I did this a couple of extraships with her. And at the time she was, you know, she had children in her clinic who were just doing, I mean, they were talking, they were, I just had never heard of that of children with severe to profound deafness wearing two big body hearing aids who were talking.
[00:08:25] And I just didn't know how she. Get it. And in fact, I said, you know, Doreen, mrs. Pollock, I can't, um, I just can't believe that this, these children are profoundly deaf. And she said, well, take them into the sound room, test them yourself. So I did. And they were, and so she just opened a home. She provided the vision for me.
[00:08:51] Of what audiology could do in terms of getting information to that child now. And at that time we talked about getting information to the ears. We talked about ear training, life, you all, the little hair cells were doing pushups or something. I mean, That's how we talked about it. And then with Marion Downs, um, I worked with her.
[00:09:13] She had already gone, you know, it was really well on her way to advocating for newborn hearing screening. But what I learned from her was, uh, the, the science, but really the art of behavioral audiometric testing. How do you test a baby Behaviorally? she was a wizard. I mean, she was phenomenal. She could get these babies and parents to respond.
[00:09:40] I just, what I learned from her was absolutely amazing. And guess who else was at the university of Denver teaching? When I was a student Christina Yoshinago-Itano. She had just graduated from Northwestern and she was, um, a brand new professor there when I was a first year master's student.
[00:10:03] So, I mean, you couldn't design a better dream team than I had. Could you, I mean, Christina Yoshinago-Itano, Marion Downs Jerry Northern Doreen Pollack. I, I just, I didn't know how lucky I was to fall in the middle of all of this innovation, all of these dynamic leaders in the field, groundbreaking research.
[00:10:29] Ground breaking ideas, who all, who together really changed audiology. And I was there with them, but I, and as time went on, I just became more and more amazed that I had that. So then fast forward. So I, I was able to, to earn my master's degree, I was then divorced. And so I then needed a job. Well, Bob Johnson had doctoral students all over the country and Jim Yates was the chair of the department at Texas tech.
[00:11:09] University in Lubbock, Texas. And that's another thing I'd hardly ever heard of. I mean, I've heard of Texas, but Lubbock, Texas, I don't think so. So I I'm going on and on. Right. You're good. I went to Lubbock, Texas. I took my two little girls with me. Um, and we went to Lubbock, Texas. Um, Jim Yates said, I told him that, you know, I really, I really would like to do some art.
[00:11:38] Well, we called it Acoupedic Doreen called listening and spoken language therapy. Aren't competing at that point in time. And I said, you know, I I'd like to start that clinic. I wish. Right out of my master's degree to do clinical supervision and get my CFY year. I was literally 30 minutes ahead of the students that I was supervising, right.
[00:12:01] In terms of my experience and knowledge, maybe 15 minutes. And that was it so I was supervising diagnostic testing and was supervising me. And I was just making it up as I went along with my acoupedic clinic. Because all I knew was, Oh, I had, then I did a couple summer courses with Doreen Pollack. Um, so I had some training, but what I did know is that I really wanted to offer that.
[00:12:31] Opportunity to children. Now, this was the day and age. This was way before cochlear implants. This was even just a very beginning of ear level, hearing aids for children with severe to profound hearing loss. We were really still at that time fitting body aids. And most of the time until I learned from Doreen Pollack
[00:12:51] Who were fitting body age with a Y core. That is what one body aid with a split cord going to each year. But Doreen Pollack had taught me that. No, no, no, no. You need to give the ears, talk about brains. You need to give the ears each year as much information as you can. So you fit two Strong body aids.
[00:13:12] And this was the day of analog technology. It was all about power, power, power, power. So you need power those ears. Those little hair cells are really doing situps by now. And, and so we put and so when I went to Texas tech, um, that's what I did now. I think when I first got in, I don't think audiologists were actually fitting hearing aids yet.
[00:13:37] I'm pretty sure we weren't allowed to, um, I, and so I was, they had to, the families, people had to go to a hearing aid dealer to get the hearing aids. Cause it was unethical for audiologists to recommend and then to actually manage the technology piece. So they then went to a hearing aid dealer and I did have a couple of hearing aid dealers who did fit to body aids [00:14:00] on children.
[00:14:00] Although they thought I was crazy, but Hey, also another body aids sure off, but it also two of them. So, um, that's what we did. And then sometime, and I, I really should, I don't remember all the dates it's about when we could start doing technology ourselves, but then I start, I think it was later that then I was able to that we, not just me, but we were able to fit your level, hearing aids on children.
[00:14:25] So, um, and then also at that time, uh, Jim Yates sponsored me and I'm pretty sure it was that time. Plus I. At a later time too, going to work with Dan Ling for a summer at McGill university. So I then learned more information about listening and spoken language and, um, from, from again, a master and Dan Ling, who gets to work with Dan Lang.
[00:14:51] Oh my goodness. And I think I did several other times when I was in my doctoral program as well. So, um, I had the clinic there and then that's where a Texas tech, where I met my current husband, Pete, and we, uh, then I decided that I really wanted a doctorate. I need a PhD in how I decided that is that the new chairman of.
[00:15:15] The Texas tech university speech and hearing department said that he recommended that I get a doctorate because by then I was teaching classes. I was now 45 minutes ahead of the students.
[00:15:30] I was teaching, Texas tech did not have a PhD program. So he said, Oh, he said, I'm happy to keep you at Texas tech as long as you want, but I see that you, you really can do more and you can't do more without a PhD. That's going to be your ticket because I see, I like the way you were running this, this is acoupedic clinic.
[00:15:49] I like what you're doing. And um, I think you need to move on. So by then I was married and. Uh, so I thought, well, where should I go? And I applied to several places and I ended up at Kent state university and my my new husband, Pete Roberts, flexer. I had a PhD in rehab counseling, and he got a faculty position at Kent state.
[00:16:14] Just again, luck, luck, luck. Just as I was applying for a PhD program, there was a faculty position that opened up in this college of education at Kent state. So it was perfect for him. Perfect. It was like, it was written for him. So he got that position and I got another full scholarship for my PhD program.
[00:16:37] And who was at Kent state? Well, it was Ken Berger and Joe Mellon and Don Gans. How, how does one person get so lucky? So now I got to learn from Ken Berger. That was a lot about lip reading, which I was kind of, Hey, I'm doing, I'm not doing lipreading. I'm doing this listening thing, but you still, you know, everyone you're with you learn so much from, and Berger was brilliant about hearing aid and Don Gans neurophysiology.
[00:17:08] Don Gans ended up being my doctoral dissertation advisor, my doctoral advisor. And he was working with gerbils and, and doing different surgery. He's I, I didn't do the animal thing at all, but we did do a pediatric testing and behavioral testing. So I took a lot of information. I learned from Marion downs and work with Don Gans in testing children with severe disabilities.
[00:17:32] And that's what I did my dissertation on. So you see there's there there's we so much to be learned from every single person you come in contact with. And so there I was at this beautiful place at Kent state learning again from amazing teachers, people who were wonderful in the field, who I did presentations with.
[00:17:54] I wrote articles with, they all mentored me. And back at Kent at Texas tech and Texas Tech university in Lubbock. I also get some papers with Jim Yates and presentations, everyone mentored me and my broadcast journalism background had me. I was already, I learned how to do presentations. I learned about that.
[00:18:19] And then I had practice practice with wonderful mentors who included me in amazing opportunities that I was just so lucky to be part of. Then I got hired at the university of Akron, um, for my full time position. And I became very good friends with Denise Wray as a speech pathologist. And she and I started an auditory verbal clinic there and we went and we spent, or I went for sure.
[00:18:51] And Denise, I believe she did too. We spent some time with Helen Beebe and Eastern Pennsylvania. Um, Sure. Um, auditory verbal clinic, um, and learn so much more about how do you do this auditory verbal thing. And guess who was at Helen Beebe, Don Goldberg. Don Goldberg, where it's just, we're just all related.
[00:19:16] Aren't we? Yeah. So we add and guess who was one of my very first babies I worked with Stacy Lim. in fact, we have a whole story about how she had been diagnosed somewhere else, but her parents brought her to Kent state. When I was getting my PhD, this was kind of a little sidebar. And, um, they came to see, not me cause I was a PhD student.
[00:19:46] They came to see one of the real professors, right. And, uh, they, but they got me. So I tested Stacy the way that I learned how to from Marion downs. And I confirmed that yes. [00:20:00] Does have a profound hearing loss. And Betty said, well, we knew she did, but we thought she did, but we needed some more. We needed second and third opinions
[00:20:09] And I said, I don't blame you. I said, you know, but there's so much you can do. And they said, I don't know if there's anything we can do. And I said, well, let me tell you about listening and spoken language. Although we called it acoupedic, you know, we had all these other names for it. But that's what it was.
[00:20:24] And, and I said, you know, I just came out of, I was in Denver just a few years ago with Dorreen Pollack. And, um, I, you're looking around for different possibilities. I suggest you give a call to Doreen Pollack and Charlie Lim. Uh, Stacy's dad said, you're not going to believe this, but I have a business conference scheduled in Denver next week, or the week after he went to visit Doreen Pollack.
[00:20:50] And they made a decision. They were going to do listening and spoken language. They then worked with Helen Bebee and I went with them to the Larry Jared house for [00:21:00] some training with Helen Beebe. And we also are lifelong friends. Right. So now, now I'm at the university of Akron and George Davis. Was the department head then and George Davis supported Denise Wray and I, he gave us time.
[00:21:20] He gave us money to start our auditory verbal clinic. He sent us to, if we wanted to get extra learning, I think he also sent us to, at least for me, again, to do another course with the two or three week course with Dan Ling and George David said, I will send you anywhere. For you to talk about this unique clinic that you have here at the university of Akron, if you and Denise have a paper at any conference, anywhere in the United States, I will send you there.
[00:21:53] And he did. So at these conferences, we met so many people. We networked with people who were big in the field, other pediatric audiologists, other listening and spoken language specialists. So we continue to fine tune our craft to learn more about how do you do pediatric audiology? How do you do listening and spoken language?
[00:22:16] How do we more precisely fit hearing aids? Because this was before, still, before. Real ear measurements. You know, I travel with all these little screwdrivers in my purse because all that, the hearing aids had trimmer pots. And so you like put the hearing aid on your hearing aid stethoscope. I mean, we did have some, we could, of course do some measurements.
[00:22:36] We did that, but you put a lot of listening and, you know, . And I take a little screwdriver and I'm turning the trimmer pots to try and get a more refined signal based on how I was hearing it. And then, but the thing was being a pediatric audiologist. Is it's, it's a science of course. And it's really an art and it's a pediatric audiology, I think, is a calling.
[00:23:05] Right? I mean, that's why Carrie, you and I are still so close it. Isn't like, Oh, nice to see you go have a good life, honey. No, we're like. I'm in it with you, I'm in it with you for the long haul. And I have been since the beginning, and that's how I feel with the children I work with now. Not everyone. I mean, people move away, people move on, people go different, different pathways and that's completely fine.
[00:23:30] But so many we stay in touch with because it means everything. It's a calling. It's not a job. I mean, I would go home at night and ponder, what can I do for this child or this family? There's some missing something, something I'm missing. How can we move forward what's or to go home and just say, I need a glass of wine because this, I got the child into the clinic and they're doing so well.
[00:24:03] It's personal, everything that happens as a pediatric don't you feel that way? Carrie it's like personal. It really is. And I think your point about the, having those important mentors in your life and, and you were definitely one of those mentors in my life, and you talk about the, having those important people and, um, Colorado, like Marion Downs and.
[00:24:26] Christina Yoshinago-Itano and various other people and you were that person for me at the university of Akron when I was there. And I was so fortunate to have you as a professor because your broadcast, journalism really shine through and all that as far as presenting. Um, I think we got excited about learning.
[00:24:53] About pediatric audiology because your passion and your purpose shines through to everybody else that was learning from you. And I think you shine through to every international and national and local presentation that you do, people learn from you, and you're life long learning. And just you talking about different phases of.
[00:25:17] The terminology that you have used and going from a body aid to bilateral body aids to trim pots and ear level two now, cochlear implants level, hearing aids. It all has to do with lifelong learning. And I think, you know, you talk about at the beginning, Um, the little hair cells are doing pushups all the time because of what really?
[00:25:44] Oh, an amplifying, every single little hair cell with a little trimpots that we had to use, because that's all we had at the time, but now you, whatever I think of you and your presentations, I think. Nationally and internationally people think of you as it's all about the brain. So when you're talking about hearing, you've kind of evolved into it's all about the brain.
[00:26:09] So how did you get this idea of talking about the brain and not about the ears? Oh yeah. Well thank you. Cause this is, uh, an interesting backstory that, um, And we, we in audiology have always, we've had key courses in neurology, right. I neuroscience. So we've always known that the brain was the goal. Right.
[00:26:35] And, but we never talked about the brain. We never talked about the brain as, um, as, as the, as the target, the target was always the ear. And in fact, we talked about even we are training the ear, even auditory training was ear training. No, again, like the little eardrums are moving while they are, of course, but not like they, they're not volitionally.
[00:27:05] And we, um, So, so we, I Don Gans, who was my major advisor, because he was all about neurology and he, uh, he was thought at the very beginning of auditory brainstem testing, and he built this whole huge, you know, now you have ABR. It wasn't like a little teeny box on your computer sometimes. Well, it was like a whole room full of technology, um, to, to try and do ABR testing.
[00:27:35] So he did a lot of brain talk, but it was all the scientific data. It wasn't the practice one. And then I started reading more about. Um, uh, auditory perception and, um, auditory, um, you know, feedback and, um, also about, um, so you know what I do. So what am I I'm talking about? We have the brain we have, um, auditory.
[00:28:05] Isn't that funny? I can't find the word that I'm thinking of. It has to do with it's auditory. We're talking about Frank Musiek, auditory, not brain development.
[00:28:20] auditory processing, auditory process. And she has a little bit of downtime, auditory processing. So it was the auditory processing community, like a Gail Chermak, and. Frank Musiek, who really talked about the brain now, they weren't the only one, you know, even back in 1954, where you have Michael Beck and his initials.
[00:28:46] So books that were just amazing. And he talked about, um, central deafness. It was like a processing issue. So all of them, well, we've had conversations about the brain. Um, but we [00:29:00] persistent for the longest time in pretending that the ear was what there stood. In fact, we would say we're doing for speech perception.
[00:29:09] What's the speech perception of your right ear. What's the speech perception of your left ear? Like the ear perceived something, the ear perceives nothing. You know, the ear is the end organ that the sensory organ, the ear that, that received vibratory data from the environment like the eye is the pathway to the brain for optic wavelengths, but the eye doesn't interpret what the wavelengths mean.
[00:29:37] It's the brain that does. And the ear doesn't interpret the meaning of the vibrations. It's the brain that learns the meaning of about vibrations through exposure and practice and language. Um, so really the ear proceeds and nothing, the ear, nothing like the eye, nose and nothing. It's, it's the brain that knows, and that learns.
[00:30:00] So, um, I, I kept thinking about why, why. See then we get to the, uh, uh, when sometimes children were not wearing their hearing aids or parents, weren't putting hearing aids on their children. And as I've had conversations with parents, I realized, but they didn't understand that. Only purpose of technology is to gain auditory information through this damaged ear doorway, to the brain where knowledge can occur and learning and understanding can occur.
[00:30:36] And without the technology, there is no auditory understanding and auditory learning and it, it came to me and I can't, I'm sure I'm not the only one who thought this way. But it became very clear to me that we need a very clear client patient narrative that I find that the real hearing that occurs is in the brain.
[00:31:00] That's the purpose of the ear is to get information to the brain, but all the ear and the ear is an amazing organ. It is a phenomenal organ, like it doesn't know anything, right. It receives a vibration. So I found that once parents and teachers understood that if that technology was not fit early, if it was not worn at least 12 hours a day, if there was an auditory enrichment going through the technology to the brain, that child wouldn't know stuff.
[00:31:31] It would be denied language and knowledge and learning. And especially if the family's desired outcome was listening and spoken language. So over time, I guess, years I, I kept refining what this narrative would. Sounds like how we would talk about the sense organs. The six sense organs is doorways of capturing different types of environmental data.
[00:31:56] It's the brain, it's the brain, it's the brain. It's only the brain that can understand and learn it and know the meaning of that information. And so we audiologists are brain people. Our job is to grow and develop that auditory brain. And the way that grows and develops meant happens, right. By getting information to the brain.
[00:32:20] And if you have a doorway problem, a hearing loss, the only way to get information to the brain is technology. Right. That's the only way. And so, and adults brains too. I have it on good authority. So we can talk about the brain to everyone. If you have someone who's was developed around auditory information, but they're losing their doorway.
[00:32:44] We need to keep that auditory brain engaged. Enriched stimulated active. And that happens through technology. So gradually what's happening is, is, and I'm sure I know I'm not the only one who's thought about this. I mean, we, we all have that, but I think what I'm happy about is I hear my narrative echoed.
[00:33:08] All over the place. I hear the narrative here. What the brain, brain listening, brain science brain technology. I hear it echoed in and hearing aid companies and different technology companies. I hear other audiologists saying pediatric audiologist, clinical audiologist, rehab, audiologists, more and more.
[00:33:29] Sharing the brain narrative. And I'm thinking, especially now that we audiologists have such a critical role firing up the brain and developing the brain and keeping the brain going for people that we have to make sure that everyone knows that we have a. Critical quality of life, even quantity of life, expansive role, um, in, in working with individuals of all ages with hearing loss.
[00:34:00] Yeah. And I think, yeah, I always associate it's all about the brain. You know, the doors or the door, the ears are the doorway to the brain. And what growing the brain as your motto, like, I've heard it so many times from you, because that's your international and national platform. And even as a student at the university of Akron, you were talking about the brain at that point in time too, but it's such a great.
[00:34:28] Like you said counseling tool for not just, you know, for parents and for kids, but as you said, adult says, well, um, I know, you know, my whole cochlear implant story. I mean, initially when I got my cochlear implant, it sounded like beeps and chirps. My brain was interpreting that technology as beeps and chirps, but by.
[00:34:52] Putting on the technology and having that doorway opened and keep listening and doing auditory rehab with Denise Wray and growing. I was actually growing my auditory brain again. And so from an itty bitty, which we want any child. You've got as much access as possible, early on and grow that brain early on.
[00:35:17] We can still look, grow my brain when we're a little bit older too. So that's, what's so exciting about the brain and how we can. Lifelong learn about different strategies and keep evolving and how we learn and we teach and continue to grow and empower the people that we work with as pediatric and clinical audiologists, no matter what setting you you're kind of in today.
[00:35:46] So, um, yeah, I. I don't know. Is there anything else that you want to share as we kind of wrap up today? I just want to say you have been, and I don't think I showed this at the [00:36:00] beginning, but just about lifelong learning and kind of evolving. I know you knew me from. I want to say I was probably maybe seven or eight.
[00:36:11] I started coming to the university and it was actually another colleague of yours and mine now. Um, Lynn wood, who was, pediatric audiology at that time and Akron, and she was about to move to the Chicago area and our family needed another place to go. And she said, you have to go see dr. Carol Flexer at the university of Akron.
[00:36:40] So that was how we got plugged in. To my family from that age. And like I said, you been, you were there through my high school years. And then I got to go to the university of Akron for my graduate work. And then you've always been. A mentor to me, um, a presentation standpoint from a writing standpoint point from just a learning standpoint throughout all of these years.
[00:37:09] And, um, I truly enjoy every wine occasion that we get to have together as well, but I just wanted to plug that in because you've been that lifelong mentor for me. And I really appreciate all of that. No. Well, thank you. And you know, and I've, I learned from you to you from, from every encounter we've had from working with you and your family, seeing how, how you have progressed and, and your journey through, um, through early young childhood and teenage, and then into being a student.
[00:37:48] I mean, I've learned from you every step. By the way. And I just value our friendships just been priceless. And I, I have such fun. We have such fun when we write chapters together or we write articles together and present together. I mean, it's just been such a pleasure for me to have this sustained relationship and friendship.
[00:38:10] I mean, we are girlfriends as well as colleagues. It's just been wonderful. So thank you, Carrie. Yes. And I just want to say thank you again for being a part of this, empowEAR audiology podcast. I think this was a wonderful conversation and I hope that others will be able to learn from all of this.
[00:38:31] And I hope all of our listeners will download and share this podcast. And. Um, to all of my listeners, thank you for joining us today and please visit our website to get more information that transcript, but today's website for today's podcast will be on the website. And please remember to share with all of your friends and fellow audiologists and people within the field.
[00:38:57] So thank you again for being on this podcast and everybody have a great day. Thank you, Carrie. Bye. Bye. Bye. This has been a production of the 3C Digital Media Network.

Episode 4: empowEAR Audiology - Camille Warren

[00:00:00] Welcome to episode four of empowEAR Audiology with Dr. Carrie Spangler. 
[00:00:07]So welcome to the empowEAR Audiology podcast. My name is Dr. Carrie Spangler, and I am your host, a passionate audiologist with a lifelong journey living with hearing challenges in this vibrant hearing world. I wanted to have an empowering podcast for all of my listeners, whether you're a professional, a parent or an individual with hearing loss, or just want to be inspired. I am glad that you are here with us today. Don't forget to subscribe. So you don't miss an episode. 
So today I'm really excited to have one of Ohio's star parents on the podcast today. Camille Warren is here today and she is going to share a little bit about her own family journey, parenting children with hearing loss, as well as we plan to have a little conversation about the uncertainties of returning to school, whether that's in person, hybrid, remote. 
A whole mix of everything and what that means. Being a parent of children that do have hearing loss. So Camille, welcome to the podcast and thank you for being here today. 
Thanks for having me Carrie. So before we get started, I thought I was just kind of thinking how we have known each other for a long time. 
[00:01:34] Yeah, we have. And I'm trying to think of when we actually met. Well, as I, as I recall, that was, when you were serving as co chair of the new universal newborn hearing screenings subcommittee here in Ohio. And, somebody had suggested that I joined that subcommittee, as a parent, because there's a parent role in that subcommittee as well. 
[00:01:59] So I remember having conversations with you on the phone before my first meeting. And I think that's when we first talked. All right. So that was probably at least maybe 15 years ago. I don't think it was quite that long ago because yeah, because you're going to talk about right. I think that all three of my children with hearing loss had been born at that point. 
[00:02:23] And my youngest with hearing loss is now 10. So I would guess maybe. Nine years ago. Okay. Yeah. That makes sense. Time flies. And I just appreciate your positive and proactive voice in the state of Ohio because you've done so much for the newborn screening committee and also for advocating for newborn hearing screening for kids in Ohio. 
[00:02:49] Hopefully we'll be able to have some more movement with that in the future here. Once COVID settles down here. Right. 
[00:03:00] Camille, can you just share a little bit about yourself and your own family and your kids and kind of how you got to this leadership role of advocating for kids? Sure. I, yeah, I think that I sort of fell into it after I had my own kids who have hearing loss. 
[00:03:19]I have four children. the oldest three of whom are identified with moderate or moderately severe, depending on the kid, hearing loss. My oldest is Ellie and she is 17. And then I have Theresa and she is 13 and Toby is 10. And then I have a toddler, Bernadette. She is two.
So my oldest was identified when she passed her newborn screen and she was identified at three and a half with a moderate hearing loss. They identified it through just sort of a general preschool, screening that her private preschool brought somebody in to do hearing, hearing and speech screenings on the kids. And, so they happened to identify her through that. 
After she was identified, my next daughter was young. She was like six months old when my oldest was identified. And so she started going in every six months for, for hearing tests because of family history at that point. and she had also passed her newborn screen. She had some middle ear effusion as a little one. 
[00:04:31] And so she had, we didn't have a great test until she was about 13 months old after having PE tubes placed. So they put in tubes and then at 14 months, she tested with fine hearing. Her hearing was fine at 14 months old. And then we went six months later for a followup and she tested with a hearing loss at 20 months. 
So, somewhere between 14 and 20 months, she, she lost her hearing. And then my next child was born and he also passed his newborns, but he was a C-section and we were in the hospital for four days. And so they tested him four times. I didn't know, at the time, even, even a, you know, a seasoned parent who had been around this a few times. 
I didn't know that they weren't supposed to test four times. So, it took four. Attempts for him to pass his hearing screen. So we still, because of our strong family history, at that point, we went for, or a for an ABR one month, the full diagnostic testing at one month. and he did have a mild hearing loss at that point. 
So even though he passed his newborn screen, he probably shouldn't have, should have referred after the second testing really. And then he had a further progression of hearing loss at about age three. We went for audiology at about age three and he had progressed to the moderately severe range. 
So, those are my, those are my three kids with hearing loss. I also have the toddler, so because my kids have all been identified or have had progression within toddler range, we're keeping a close eye on. But so far, she seems to be progressing. Normally she passed her newborn screen. We did take her for a full diagnostic screen, full diagnostic tests anyway, because of my family history. 
And she also asked that and she's had a few, follow up audiograms as well that have also gone well, so, so far so good for her. Good. So you obviously have a lot of experience with having three out of your four kids, having some degree of hearing loss and neither one of your husband nor yourself had hearing loss. 
Correct. I actually have, a moderate hearing loss on one side and it occurred to me suddenly at age 30. My daughter had, had what is, I mean, it was never identified, but what was the suspected to be RSV? And, I also had a cold at the same time and I was so concerned about her, that I wasn't really worried about the fact that I suddenly couldn't hear.
[00:07:00] So I didn't follow up right away. as a, as an aside, if an adult ever has a sudden onset hearing loss, you should go to your ENT right away. but it's, it's a, it's a moderate loss. It's about approximately the same as. It looks very similar to my oldest daughter's, sort of cookie bite presentation. 
[00:07:20] So it's unknown as to whether mine is, is related to theirs. It looks so similar. Or if it's due to a, due to a viral, Yeah, but it's only one sided. Okay. Wow. So I'm sure though, with all of this going on on right now and the world, there's been a lot that has impacted, I think the world of, individuals who have hearings challenges, but it's a unilateral loss, maybe yourself as well as your, as well as your kids, but, I had the opportunity a couple of weeks ago to talk to an administrator at the national level Cheryl DeConde-Johnson. 
[00:08:01] And we had a lot of conversation about reopening of schools and then Tina Childress's and I had some conversations about, just adults in the world, who happened to be educational audiologist, and I feel anxiety about going back to school. So I'm. Curious to find out from you from a parent perspective. 
[00:08:24]and I'm sure your, your kids are talking to you about return to school. but before we talk about return, return to school, we all sat down and mowed. In Ohio. And so went to a quick online virtual platform. And I know all of our teachers are amazing in the fact that they could pivot so quick and try to make things happen when you're not used to teaching that way. 
[00:08:52]but it does pose a lot of. I think challenges, when we are talking about learning and accommodations. So was there anything that you learned or that kind of stuck out to you homeschooling your kid through this pandemic part of March through now? Right. So. It's back in March. I think the things that worked well for my, for my kids, a big plus was, getting the broad band system from the school. 
[00:09:27] And in order to use that, with online with zoom calls and things like that, that that really helped a lot as far as, Yeah, sort of cutting down on, on distractions and background noise and that sort of thing. I'm trying to think of each, each kid, you know, as, as the alternative to that, like distractions were really hard. 
[00:09:49] My role, especially really struggles with. You know, a zoom call that at the time had over 20 kids called into it and the teacher and she, if she was free kids engaged and would try and replicate things that they had been doing in the classroom, which was a great concept, but it was very hard for him to follow. 
[00:10:15] So she would do things like in the morning, she was. Question and then go around the room and ask all of the kids to answer the icebreaker, which sometimes was okay. And sometimes it was the kids build off of something that the previous student had said, and the conversation was really hard for him. 
[00:10:40] Grasp everything that had been said, hold onto all of that, that, that language information, and then build upon it in the moment that, that he was given. So that kind of thing was really difficult. even though he had been doing similar kind of icebreaker, get to know you get comfortable kind of. activities in the classroom all year long.
[00:11:04] So like in the classroom, he was comfortable with it. He could participate and it was fine, but when you put it online, it was just this whole other level. That was, that was hard for him. So that, that's the kind of thing that I would say was hard. when as time went on, the teachers got better and better at. 
[00:11:25] Muting and unmuting students as, as they, she needed to do order were to keep this whole room, this whole group of 20 plus ten-year-olds from, you know, making, making noises in the background. And so that got better and better. I think the combination of getting people as needed, to a certain extent, breaking down into smaller groups and also the use of the Roger system. 
[00:11:51] All of those things together, definitely helped him feel like he was in a place where he could participate better. Did the teachers do anything like in the zoom meetings as they went forward? I know you said they broke them into smaller groups and they were able to use the Roger system, but did they have any other, like maybe rules for those zoom or Google classroom that helped, you know, kids. 
[00:12:20] I think ways was, was there were supposed to as much as possible we'll have video on and have mics off. So you had to say something you were supposed to have your microphone off that would make it a little bit easier for her to manage the room that she wasn't constantly meeting people. I think that that, that definitely helped. 
[00:12:41]one other thing is an example, you know, talking about. Elementary school is very different than talking about high school. And I do think that there are challenges and on school that are, they're just different. she was planning on, you know, it's that time in the year that she had a certain book planned for a read aloud. 
[00:13:00] And so she did her read aloud over zoom, which is fine, but no was normally Toby would have been okay in the classroom without having a book to read himself. When you put it online, it was just one more step, more difficult. So we bought him a copy of the book and he was able to read as the teacher was reading, that kind of thing, it just became very obvious when and where, where he needed visual supports. 
[00:13:30] For the most part, it was things that were auditory only that he suddenly, you know, he over. Classroom. He might've been fine, but via zoom he needed, he needed some visual support as well. These are all good. I was writing down some of these notes because I think, whether a lot of schools, what was I going back either a hybrid model or, a virtual platform and we can take right. 
[00:14:00] This turnaround was really quickly even though in the spring and use it, as an advantage. Right, right. Yeah. The other thing that I will add that we are doing this here going forward. Again, specifically for Toby. And I think a lot of this is just because coming from the spring, he was the one that struggled with it. 
[00:14:22] The most, it was, it was different in high school. They were already used to doing a lot of things, self paced, and interacting with all of the apps that they needed to interact with that sort of thing. So like for my older kids, it was not as big of a deal, but for Toby, We are going to be, crafting for him a communication plan, which I don't know if you're familiar with in Ohio, that we have this, there's a document that was put out by, the, by OCALI they are the house, the document, they own the document. 
[00:14:55]and it takes you step by step through. A lot of different, parts of, of the day and all the different ways that you need to be able to communicate. And it writes down a plan so that you have, so that you've, you've hopefully thought through everything. So how is your student going to. Get the, the announcements from the PA, how is your student going to receive information? 
[00:15:20] If there's an emergency, how is your student going to, get, make sure that they have all the information they need for homework sort of thing. It really switched to step-by-step all the different ways that, that communication happens in the school. and it, and you draft a plan. so we're actually going to be working on that for two, for Toby, in order to hopefully help him have a little bit more of a smooth time. 
[00:15:45] As far as this, this communication needs go need to be going forward. Yeah, no, I think that's a, an excellent idea for parents to be aware of, especially because the accommodation that are in place for them currently might not be the accommodation that they need with the extra safety and health Precautions such as mask and distancing. 
[00:16:12]and, but for learning that are taking place right now, that really complicate, like you said, learning and especially, with interaction and, and the early grades as well. So yeah. So Camille, you talked a lot about remote learning, right? I think we have some really good tips about. What we could do if we end up pivoting back to that or with a hybrid model. 
[00:16:38] And then I love that point about having a communication plan that, OCALI has. and I I'll definitely link that after episode today. So people want to take a look at that. They can, revisit that information as well. that what I wanted to talk about next is just over the summer. Now that everybody's kind of been home and you've been able to, go back out a little bit safely. 
[00:17:05] Is there communication challenges in your everyday life with your kids that you've noticed? the first time. So we, we have been very cautious as a family as far as going out goes, we, we really took the stay at home order to heart and my kids have not. You know, even, even to this day have, have had sort of limited exposure. 
[00:17:28] I'm outside with the exception of going to parks and walks and, and things like that. but I do have a, have a memory that, and say it was in June, Ellie, my 17 year old and I both. Made an appointment to give blood. And when we got there, it was one of her first times really interacting with a lot of people in masks. 
[00:17:54]and she hadn't, she, she struggled with, with listening to the people at the check-in and understanding people as they were asking her, You know, health, real health questionnaires that are required before, before giving blood and things like that. and so that was sort of like I put in my head that this was going to be a problem, but that was the first time that I really.
[00:18:19] Observed it. and she knew also similarly than it was, she knew theoretically this was going to be an issue, but then to actually experience it, it's kind of a different thing. So yeah, no, and I kind of felt the same way Ellie. Did I remember. I knew it was going to be a problem, but until you put yourself in that situation and experience it for the first time, you're like, Oh wow, this, this is really hard. 
[00:18:47]and so I think I had gone to the grocery store and. It was just, it was a closed set of question, not even, I mean, that's a, that's a pretty open set of questions. As far as giving blood. This was like, are you paying by credit card? Or if you want paper or plastic. And, it was still, you know, that short amount of time, it took a lot more energy to. 
[00:19:11] Focus and pay attention and be an advocate and ask for repetition and that kind of a situation, which kind of brings me to the next topic that I wanted to ask you about is. First of all, do you know how your schools are opening and what you're considering? And, the second part of that would be, what do you think some of the challenges about reopening might be and what parents should be aware? 
[00:19:41] Sure. School district has actually not yet announced how they are going to open the first week. they are tying their plans very closely on a week by week basis to how our County is doing on our statewide. Map. So they, they code are each County by, by color so that if you're doing great, then you're a yellow. 
[00:20:08]and if you're not doing so great, then it goes to orange and then red and then purple. And so our school district has decided to tie themselves to that rating system, which is announced every week on a Thursday. And so based on each Thursday's rating, We'll determine how our school operates in the following week. 
[00:20:32]and this is their plan for the entire school year. So really know, much more than, you know, it, whoever knows, you know what I mean? It's kind of like, well, I think most it's all a. It's all Mirage anyways. Right? So whatever anybody ever, he knows what's going on, but we really don't know what's going to be happening so Thursday at any given week. 
[00:20:57] And so. It appears as though we are highly likely to start in an e-learning, manner. And then if things get better, we may be moving to hybrid. but things would have to be going really, really well for us to ever be all in. and that's kind of, kind of how they're. They're looking at doing it. So I just to be prepared to be e-learning, because they, they both want the two who are going to be returning to the, to the public school, both want to be in school. 
[00:21:32] So, I'm just hoping that at some point we will get to a point where we can go hybrid, So, yeah, the, the, my 10 year old and my 13 year old, will both be returning to either e-learning or hybrid. However, we start, and continue the school year at our, at our public school. my, the reason and the reason for that is that my, my 13 year old. 
[00:22:01]  She really wanted to return for band. she plays clarinet and she was very excited at the end of last year that she was placed into the highest band that she could be placed into. and she had worked very hard for that. And so because of her strong desire to return for band and also the eLearning platform like that online Academy, they call it if we had chosen only online, That would not have offered a foreign language, for middle schoolers. 
[00:22:30] Cause they consider that to me in an advanced class. So, so because of those two reasons she wanted to return to school. And then my, my son who's going into fifth grade is also identified as gifted and our school district is not doing any gifted intervention services via, the online only platform. 
[00:22:51] So in order to have him. Received gifted intervention. We, we opted for the in person. If it happens, I don't even know what to call it. Well, like you said, every Thursday, we will know. What really is a week by week plan is what it is, 
[00:23:16]your work area, the Columbus area, and getting to a level that they are able to go back hybrid or even, five days a week. do you have any. Thoughts about that? I mean, I know you talked about the communication plan and going through that a little more deeply in order to ensure that your kids. Accommodations and needs will be met, but is there anything that really off the top of the hat that you can think about as far as reopening and actually physically being back in school that creates either at a, I don't want to call it anxiety or I don't know, uncertainty as the parent. 
[00:24:04] So I think that the thing that everybody worries about, is always masks. and yeah, I've, I've done a lot of reading up on that's cause and, and research into types of masks and visual access masks and cloth masks and, and all of the different options. and I think what it really comes down to is that, It's going to have to be some, some level of trial on error. 
[00:24:31]I, I don't think that there is a single, a single solution as far as masks go that will help every student with a hearing loss. some students may prefer to have their teachers and peers and anybody that they communicate with. In a simple cloth mask or a disposable surgical mask, that does not attenuate the sound very much because there are, auditory learner and other students may really need to have that visual access that's given with a, a window mask or, Some kind of a face shield type mask. 
[00:25:18]but there's a lot of sound attenuation with those options. So it's really, unfortunately it seems to be at the moment, a big trade off, where there doesn't seem to be a whole lot of access both ways. so I. I'm hesitant to make a statement about what my kids will end up using, because I, I don't know. 
[00:25:40]we haven't tried enough different options. Enough different kinds of listening to figure that out. But I do suspect that the, the Roger system, the DM system will be more important than ever, because of the sound. Quality issues of masks. I agree a hundred percent. And even I could, you know, the peers who may have normal, no near no, my hearing, as well as the teachers are going to all. 
[00:26:19] Realize, I think the impact that hearing has an impact in the classroom, when you have muffled speech and, and, you know, communication is a two way street. So I think, yeah. Having an improved signal to noise ratio for all of our kids, whether you have hearing loss or not is going to be important at this point in time with everything going on.
[00:26:47] And then I, I hear about different schools who want to. Have less kids in a classroom. So they're using other spaces such as an art room or part of a gym to have a classroom, which again, changes the acoustics of the classroom, which makes it more difficult to hear when the sound bouncing around. So there's all these other like layers that kind of. 
[00:27:20] Come apart when you think about everything that goes into reopening schools, and even things like taking carpets and things out of room, which absorbs sound, but we want it to be clean. So there's like, like you said, there's not, it's going to be a trial and error with different types of accommodations and support. 
[00:27:44] So as we, we open schools again, Right. So, yeah, go ahead. I was just going to say no, I completely agree. And when you also think about, and again, I don't, I don't have a whole lot of in depth knowledge about what my district is doing, but I have seen plans from some districts that include things like, little. 
[00:28:08] Plexi glass dividers between desks and around desks. And just thinking about the number of hard surfaces there, and, and the reverberation in those rooms, it's, it's going to be challenging and perhaps the answer for all students, what will also help the students with, with hearing loss and that's more visual supports, and making sure. 
[00:28:32] The things that I asked for, for my kids, like announcements being written down, homework, being written down, things, not given only orally, but also visually may end up being more the norm for more students. and that, you know, that's not a bad thing. No, I agree. A hundred percent that we're going to see a lot more visual supports coming, just because of the nature of how the classrooms are going to have to be set up. 
[00:29:02] And then I've heard about classrooms having to go outside because it's better to be outside than inside. So I think that creates a whole another. A challenge if you're a spaced out and wind noise, and if you happen to be near a road and all of those other factors that go into being upside too. So they're going to be a lot to think about as we open and kind of be overwhelming, I think. 
[00:29:29] But, as a parent, is there anything that, because it's so overwhelming that you thought about that kind of calms you or different tips that. Might help other parents as they're going through this unknown unchartered territory. Yes, I do have a couple of tips that I can share. I'm glad I did is with things that we're talking about in my family and what we're trying to do. 
[00:29:56]the first one is practice, practice with your, your kids, making sure that they can put their masks on and off by themselves. Ideally. When you're wearing hearing aids or cochlear implants or, or glasses or all of those things putting on and off a mask is actually not that easy, you know? and so we've gone through. 
[00:30:22] Lots of different styles of masks and different, means of assessment. And, especially with my 10 year old, you know, he just, he, he wants to just throw it on and go, and we've had to make him slow down and find out, you know, which side is up, everything
is oriented correctly. He just throws that, that mask on, Because it just doesn't work if it's not on correctly. 
[00:30:49]so, you know, I would just say that's just sort of a simple thing, but practice putting on masks, taking them off to him off without getting them caught in hearing aids. last thing you want to do is go crawling around on hands and knees, looking for it, for hearing any of that just went flying across the room when you know, your child tore off their mask. 
[00:31:07]So that that's my first. That is a big bonus tip. Let me tell you, and then by express, but in a different way, it's also practice listening, practice, listening to people who are wearing masks, and. Practice your, your self advocacy skills, in different situations and with different people. So the way that that your child might need to self-advocate with the teacher would be different than having to self-advocate with a peer, or somebody in the office, or, you know, somebody in the cafeteria, if they're. 
[00:31:47] If, you know, in different, different situations, they need to be able to read that situation. And self-advocate appropriately, with adults and with other peers. And [00:32:00] that's really hard when you know, so much of your body language is expressed in your, in your facial expression. And that's also covered up. 
[00:32:09] So, you know, practice, reading, reading, people, practice, communicating. Practice self-advocacy. Those are all great tips as far as that can be used. I think again, online and in person and the mask, not as much in my online, which would be the bonus of being virtual compared to being in person. but even just, you know, that practice of listening. 
[00:32:40] Online and in person, is going to be important too. And I love the self advocacy skills. and you bring up a really good point about. Practicing their self advocacy skills with different people. because like you said, you're with your friends is a lot different than what you're learning in class. 
[00:33:01] And, who you're talking to in the office, is really important to advocate at, at those different ways as well. So, Kind of, as we wrap up, I wanted you to just share, I know you, heavily involved, I'm actively involved in Ohio hands and voices. Can you just share a little bit about your role with hands and voices? 
[00:33:25] And, these would be like, The tips that you shared today would be like awesome tips just to, I had him put on the website right now because I'm sure there's people open back up exactly what parents need to hear, that use some of that stress that they're probably experiencing right now. Sure. yeah, I am 12 with Ohio hands and voices. 
[00:33:49]Oh, her hands and voices is a parent led parent professional advocacy or parent professional, collaborative organization, [00:34:00] families who have children with hearing loss regardless of their mode of communication. So we support families who, Use a spoken language, families who use sign language, families who use, any combination of both and or cueuing.
[00:34:18]and we support them across all, times in their lives from the moment of identification all the way through transition, after high school. So we, we do that through kind of parent to parent mentoring and parent to parent support. We also do it through a, a program with advocacy in the schools that is called Astra, and that stands for advocacy support and training. 
[00:34:50] So we do trainings for parents and professionals, both. But specifically, our audience is generally geared towards parents who have children with hearing loss to help them through that IEP process, from, from, starting in preschool all the way through post secondary transition. So, so my role with Ohio Hands and Voices is that, I've been involved with them. 
[00:35:16] For eight or nine years. And I sit on the board of directors. I am past president, but I do not currently, hold a, position on steering. I am just a board member. and I. Volunteer also as an Astra advocate. So I also help families, who need a little bit of additional information or support or advocacy, through the IEP process. 
[00:35:45] So those are my hats that I wear with Ohio hands and voices. Thank you for all you do for parents. and for their kids, because I know parents. They need to have other parents that to talk to and relate to and know that there's somebody else in their shoes out there as they navigate the process. And like you said, from identification all the way through, I'm sure now with Ellie thinking about moving and transitioning to her next phase of life. 
[00:36:23] Hopefully with college and everything in the, in the future. that brings about another time where parents really want to have that support as well. So, thank you for all of that you do in Ohio. you have just been such an amazing, Positive proactive person. And I'm just glad that I had that, cross through newborn hearing screening and through other ways as well, with other adventures with Ellie, it's been really fun to get to know you and your family too. 
[00:37:01] So, I just want to say, thanks again for being on this. Episode. and now our listeners have gained a lot of insight and important takeaways as they navigate through these uncharted waters of going back to score, whether it's remote or a hybrid or in person. I will check out the episode summary, a link to Ohio hands and voices, and there I have some great family resources on that website. 
[00:37:30]that will help you as you start thinking about reopening or, continuing through this school year again. Thank you Camille for being here tonight and thank you listeners for joining me. Thanks, Carrie. I appreciate it. It's fun. This has been a production of the three C digital media network.

Episode 3: empowEAR Audiology - Dr. Tina Childress

[00:00:00] Welcome to episode three of EmpowEar Audiology with Dr. Carrie Spangler.
[00:00:16] Welcome to empower audiology podcast. My name is Dr. Carrie Spangler, and I am a passionate audologist, and I'm really excited to bring this podcast to you today. Today I have a great friend and colleague, on the podcast, Dr. Tina Childress, and she is going to take a second to introduce herself. So do that.
[00:00:41] Thank you for being on this. Podcast this morning, I'm excited to have you and excited to have a conversation this morning. Thanks, Carrie. It's so great to be here. So hi, everybody as Carrie mentioned, my name is Tina Childress. I live in Illinois. [00:01:00] I am also an educational audiologist. I am also a cochlear implant user.
[00:01:06] Like Carrie, our hearing histories are a bit different. I did not lose my hearing. Until I became an audiologist. So be careful out there. It might be contagious. No, I'm just kidding. Um, so I was actually, um, I had been practicing audiology for about nine months when I noticed that I had hearing loss and, um, over the next nine months I lost the rest of it due to auto immune inner ear disease.
[00:01:34] I used hearing aids. I used, you know, big boom in hearing and all the things. And then, um, decided to get my first cochlear implant in 2000. And I got my second cochlear implant in 2005 and it has definitely been a game changer. Funny, like getting into audiology. It all started, um, when I took a sign language class, so my first [00:02:00] major was actually engineering and I realized I don't like engineering.
[00:02:05] So I'm going to take a class that had nothing to do with that. And that was sign language. And then it introduced me to this field called communication disorders, which I had never heard about. Um, and in undergraduate classes, in both speech pathology and audiology, and I decided to go the audiology route and the rest is history.
[00:02:27] Um, for me learning sign language in the beginning was kind of a blessing. Um, I took that class, you know, and then introduced me to audiology. Um, I taught that class. So as a grad student, so it paid for like a year of my master's program. Um, my then boyfriend who's now my husband of 25 years took that class too.
[00:02:51] And so we've always signed with each other. And so then when I started losing my hearing, um, it was so nice to have almost kind of like this personal interpreter. Um, that came with me and, you know, to this day, you know, our family signs, I have two daughters, one is 18 and one is 13. Um, they both signed the first one is more fluent.
[00:03:15] The second one is typical. Second CODA. She’s kind of stubborn and not wanting to sign, but she can. Um, but our family has, you know, we have communication and all kinds of modalities. So, you know, Carrie and I were talking before this podcast and. You'll see a theme in my life. It's all about options. I'm not scattered, it's about options.
[00:03:38] And so I truly believe in that you need to find the right option for your situation. So for me, when my implants are off, that means signing. Um, you know, for me that means captions are on all the things in my house all the time. And you could see how that trickles down to my kids. Like, you know, when we were still [00:04:00] able to do like sleepovers and stuff like that, my kids who I like to call hard of listening, um, are the ones that telling the other kids to turn on the captioning because she's so used to that.
[00:04:11] And then all the kids are like, Hey, this is kind of cool. 
(Carrie) That's awesome. I just I've no, for this podcast too. We are trying to think about it. How you and I met. And I think it was at an EAA educational audiology association conference back in. Something nine. No, it was in New Orleans. That's right. So I think that was the first time that I had met you.
[00:04:42] And it was just so powerful to me, that other audiologists who also have a hearing journey. So, um, one thing that I wanted to share too, because of your cochlear implant journey, [00:05:00] you inspired me to go on that journey as well. And I had been thinking about a cochlear implant for a couple of years because my hearing was
[00:05:13] getting worse. And I was having more difficulty understanding and every opportunity I had to talk to an ENT or user or a cochlear implant audiologist, I took advantage of it. And last summer, when we were in Denver, I was still on that path of making an appointment and having a consult done. And you were such a huge support to me about that cochlear implant journey and what to expect.
[00:05:47] And even I remember our little group of cochlear implant audiologists on a private message. And I'm asking questions like, what questions should I be asking when I got there? [00:06:00] And all of you were so supportive, so it's helpful to have those people to support you. And I think that really goes into our next conversation.
[00:06:13] This is pandemic, right? I mean, what, in the situation right now of reopening schools and going to virtual learning and being deaf or hard of hearing, and it's presented with a lot of challenges that. I don't, you know, that we've always had, but are amplifed right now, so, um, Tina, do you want to talk a little bit about, um, how we kind of [00:06:43] Started collaborating about mask and face shield then. 
So, um, I talk about options, I guess I'm also a hoarder. And so I have had a conversation with another actually she's a deaf and hard of hearing, too, um, she is a [00:07:00] teacher for the deaf. And she also has bilateral cochlear implants. And so we had been talking about what we liked and what we didn't like about masks.
[00:07:09] And then, you know, when shields became an option, we were all excited because then we thought, Hey, finally, we're going to have something that provide our deaf and hard of hearing kids with visual access and keep people safe. Well, You know, long story short, we know that that kind of, um, opinion or perspective has changed a little bit.
[00:07:31] Um, so anyway, I was chatting with her and then that's when you started, you know, putting out the statement with the American cochlear implant Alliance and, you know, you have the, the position statement or the, uh, whatever the PDF that you did for the educational audiology association. And so we kind of brought you into the conversation because both the other teacher and I were really kind of trying to advocate for using more shields.
[00:08:00] [00:08:00] And then we realized that. You know, the three of us have our ideas, but we want to know what other people were also thinking. Just, you know, we were all, we were just, the three of us were in our little bubble and we wanted to see, well, what does everyone else say? So me who I am, I'm like, let's do a survey.
[00:08:20] So I created a Google form and, and, and the rest is history. So You know, we've looked at a variety of masks that had the clear window. We've looked at a variety of shields. And, um, we had hoped we were going to get a few more responses and I think that we have gotten, um, and I understand, you know, what's the summer people are kind of probably maybe tired.
[00:08:45] I'm thinking about this, you know, I was just thinking about the fact that maybe we should keep the questionnaire open because when we do go back to school, I think there might be a surge when people realize what works and what does not work. I agree [00:09:00] with you. Yeah. And so I loved your analogy that you shared.
[00:09:06] About shoes and mask and shields. Do you want to talk about that? Yeah. So again, when it comes to options, you know, everyone has their own tolerance for what style or features of a mask or shield that they like. Some people like air loops. Some people don't like for me, I don't like air loops because I've got my.
[00:09:29] glasses. And I've got my implants and I feel like my ears small and kind of pliable. So when I put the ear loops on everything yeah. Just falls off. But some people really do like them. You know, some people like to have masks that they can put on a baseball cap. You know, I don't wear a baseball cap, so that wouldn't work for me.
[00:09:50] So I have used this analogy of like shoes, you know, everybody has a different pair of shoes for different kind of, um, [00:10:00] situations like you would not wear like heels to go hiking in the woods. And, you know, maybe some people would, but you're not going to get very far, but you know, different people have different preferences for shoes.
[00:10:12] And I think. We're going to see that also with shields and masks. Um, I think I'm finding, you know, that people have multiple. Masks. Sometimes they're all the same style, just different colors. I have different master shields for different situations that I'm going to be going into. So the mask that I might use to go to the grocery store is going to be very different than the mask and shield that I will be using in my audiology office.
[00:10:42] Right. And so. Yeah, it's all about options and, and being prepared, you know, Carrie and I were talking that I think the hardest part of this whole pandemic is we don't know what we don't know. So how do you plan for something that you have [00:11:00] no idea how it's, you know, how the virus is going to react. And so again, it comes down to options, but.
[00:11:08] Knowing what the options are and knowing how to maximize that option for that situation. And, and really that comes down to knowledge is power. Right. And that's why, you know, I carry an eye and like other people have been so passionate about like educating other people and using our perspective. Um, you know, like Carrie and I talk about, you know, what it's like to have to listen to a computer all day.
[00:11:36] I mean, the whole zoom fatigue is so real and even more so, you know, for our students that are deaf or hard of hearing. Um, and so, you know, with this upcoming school year, some kids are going to be all virtual. Some kids are going to be in the classroom. So obviously there's not going to be one solution that's gonna work for all.
[00:11:57] So you gotta pick your shoes. [00:12:00] Yeah. It's almost like. We have to have a big recipe of different choices that. Out there. And like what you said, Tina, I think knowledge is power and being able to try out these different options that are out there and say, Hey, this one works really well for me, but this one doesn't work as well, 
[00:12:23] For me in this situation. So putting yourself out there and trying different things is really, I think, critical at this point in time. And you brought up a good point too, about, you know, we don't know what we don't know. And I think that goes back to. When you look at this pandemic, which is worldwide, but we're looking at it from reopening in the United States.
[00:12:49] There's not a one plan to reopen every school. Local school district is really lucky, could not their own plans for [00:13:00] reopening. And I think at the top of their list right now is if there be opening is how do we do busing and how do we. Make sure we have enough space to spread people out. So I think even though mask or face coverings are going to be required, I don't think the impact of how it's going to affect listeners, whether you have a hearing loss or not how much this is going to impact them.
[00:13:32] So I think being able to do this research ahead of time. It's really going to be helpful when schools do video, um, and know what their plans need to be. So if, if a school says, yes, you can wear a face shield. If you have physical distancing, we have tried out some face shields that might be good, or no, you can't use facial.
[00:13:55] Does that? All, these are some ideas, but clear my ass, [00:14:00] um, that would give some visual access. So. Um, I don't know. Do you want to say anything else about that? You know what I was just thinking about, you know, you and I have been concentrating a lot on educating other educational audiologists and teachers of the deaf and kind of spreading our, our message, but what you just said, just really kind of hit home that.
[00:14:26] Everyone is starting to realize how much harder it is to hear, and to listen, um, behind the masks and shields. You know, we were on a call yesterday where we were talking about, um, vocal fatigue, you know, our teachers that are going to be, you know, in the trenches, your voices are to get tired. You know, it's not going to be as easy to just take a sip of water as it was before.
[00:14:49] It's going to take a few more seconds. Cause you got to find a safe place. Take off your mask, put your mask back on, but I'm almost thinking, you know, some of the things that we've been thinking about, we need to start [00:15:00] reaching out to gen ed teachers too. Or, and, or we've just, we need to go straight to administration and let them know, Hey, you know why we know about some coats technologies that can help your teachers with their voices.
[00:15:14] We know some technologies can help your kids hear better. Um, even if they have normal hearing, I mean, in our area, the kids that are going to be like prioritized for going back to school are going to be kids on IEP and 504s, the kids that are English language learners. The kids that are getting free and reduced lunch.
[00:15:38] Those are like the, the groups that we're looking at. And for them, it's going to be the hardest for them to stay focused. Exactly. And we know from just a few studies that are out there, no matter if you're wearing a cloth mask or the paper, a surgical mask or a shield. The decibel level or [00:16:00] that loudness level, the clarity level is reduced. so about all, uh, younger grades who are learning literacy skills, phonics, and you need to hear high frequency, S an S H and T H and C H in order to.
[00:16:17] To develop those skills and you put that mask on and you've just filtered all those sounds right out. So I agree. I think this masking dilemma or masking face coverings is not just. It impacts us greatly because we really rely on a lot of the visual facial expression. But I kids with normal hearing, all of a sudden saying, I can't understand you either.
[00:16:46] And because you don't realize how much your face communicates right. So one thing I wanted to kind of go back to too is we've you said you're a hoarder of mask [00:17:00] and I keep buying mask like left and right. Different clearmask to try out. Um, what are some of the things that you've seen? And I was surveys.
[00:17:13] That really stand out as far as pluses and minuses for when you wanna buy your mask or when you want to buy your shield. Oh, that's a really, really tough question. Cause it's, it can be so individual. Right. So let's think about this. So retention, so people have different opinions about the ways they want to put on the mask.
[00:17:37] So again, like I said, some people like your loops and some people. Like the tie behind or the elastic band. So that's something to consider in the mask or the shield that you're going to buy. Um, you know, people are really concerned also about breathability, you know, like if you're going to wear, especially a mask that has the clear window [00:18:00] because it's plastic.
[00:18:02] or vinyl, the airflow was not going to be as efficient as, uh, an all cloth mask. Um, yeah. And you know, from what I've been reading that masks that are essentially cotton, um, you know, like two or three layers of cotton are the most breathable. So finding a mask that has, you know, cotton in it is pretty important.
[00:18:26] Um, people are also concerned about, um, how much the clear window might fog. So for me, I have found that the more rigid or the thicker vinyl or plastic stick works better for that, um, because it stays in its shape, whereas kind of like some people were using like shower, curtain, material, or something like that.
[00:18:48] But when it gets to. Wrinkly then it can create weird glares. And it's also kind of more prone to fogging versus like a really kind of solid kind of surface, [00:19:00] um, masks that don't sit flat on your nose, against your mouth. That kind of go jut out a little bit. And that can be accomplished. Pushed with the pattern of the mask.
[00:19:11] Like if there's darts, that's something I learned from the, um, the other teacher friend that I was talking about. Just the importance of having darts, because then it pulls the mask away from your face so that when you talk, the vinyl is touching your lips or like when you start breathing that you don't second, this plastic, um, what else.
[00:19:31] So for shields, um, in order to use shields in our area, it needs to extend below the chin and it needs to extend back. Um, one of the reasons that shields is not widely accepted and all situations is because there's still this open side. And if the purpose of the shield or the mask is to keep you from infecting others with respiratory droplets, [00:20:00] if you have it open, then that chance is still there.
[00:20:04] And so, um, you know, in our area, um, shields in some areas are going to be allowed, but you have to maintain the six feet of social distancing, right?
[00:20:19] Go ahead. Sorry, I didn't mean to interrupt you. I can't remember one mask that we haven't talked about, but I was thinking about if you are allowed to wear a shield to almost the Gator mask where, you know, you have the shear, but if you have to get closer, you could pull that up. It might help with. The retention piece.
[00:20:42] Um, and then you can pull it back down. So, um, that might be another option. If the schools are able to wear a shield, but they have to wear something when they're closer. I'm shaking my head because I was just thinking yesterday, [00:21:00] I need to get a Gator, which I don't, because that's just one more thing that we have to buy, but I've seen a lot of people say that, you know, for, for people that are deaf and hard of hearing, they liked the Gator because it pulls up from underneath and it does not affect their hearing aids or cochlear implants or glasses.
[00:21:19] It doesn't, you know, like pop them off. So yeah, I think you and I are going to be buying some Gators. I think so too. I actually have some, and I use them to keep my implant on my head when I work out. So it's been nice because you don't have to wear a mask when you're actively waking out, but then when I'm done, I can pull it down and it becomes a mask.
[00:21:43] That's brilliant. Right? We've become creative in this whole process as well. Don't we? Well, yeah. And that's, you know, like you talk about multi-use my husband asked to borrow one of my face shields, the one that has the [00:22:00] balaclava, or like the, you know, the cloth that goes down to the shoulders because he was going to be working with a, saw like a Woodstock and he didn't want saw in his face.
[00:22:10] So he asked to use my shield and it worked. And how do you like that one? I know it's called the humanity shield and I think some other companies might be coming out with something similar too, but it's that base yard with a little cloth. So it has a little more protection for droplets. I mean, there's really only two.
[00:22:33] Designs. And I've seen so far is that one. And then the Badger shield out of the university of Wisconsin that have, they basically take a shield and then they attach some kind of cloth to the bottom of it. Oh, that reminds me. I saw someone that they attach kind of like a, um, a scarf. Ah, yes, I think I saw that one too.
[00:22:55] Yeah. And so, um, those kinds of seem [00:23:00] to be the best of all worlds, um, because it does protect more so than having a totally open face shield. Um, some people like them and some people don't, you know, like one of the biggest complaints I think about these shields is that like, so if I'm, you know, I'm the person with hearing loss and if I'm wearing a face shield, But when I talk, the echo comes back so loud.
[00:23:25] Some people really don't like that. Um, some people, yeah, they just don't like the style. They're also a lot more expensive than just a traditional face shield, um, or even a mask. And so there've been, you know, like good and bad things about that. Um, but. To me, that design right now, you know, having some kind of face shield and having some kind of way to contain respiratory droplets with like a, a cloth kind of covering, um, is a good idea.
[00:24:00] [00:24:00] Um, we just need to figure out a way to make it, um, we need to make sure that it's reusable. So being able to like wash the cloth or something like that. And I, the one with a scarf, I think she put snaps on it. Yeah. But you could actually take off the scarf, right? Yeah. So it needs to be usable and we need to make it affordable for our schools because at the current pricing.
[00:24:26] And I get supply and demand. Um, the current pricing right now would make it kind of not possible. I mean, I know they're probably bulk discounts, but they're still pretty pricey for what they are and ordering for a limited number of people. But for like you said, a whole district, or that would not be feasible, I don't think.
[00:24:50] Yeah. And that's a whole thing too, right. That we're struggling with, like who, you know, it's been confusing because some of the language has kind of [00:25:00] suggested that the people that have an exception to wearing a mask are people that are deaf or hard of hearing. And it's like, no, it's the other way around.
[00:25:09] It's just the people that are talking to them, the people that are deaf or hard of hearing, which really means everyone else. Right, right. So the people, most of the people that I know that are getting these like clear mask or the mask with the clear windows are people that are deaf or hard of hearing.
[00:25:29] So think about that. It's a little bit backwards. It really is. But you know what? I think it kind of goes into. Being an advocate. Right? So when we think about reopening schools, parents, and, and people, you know, who work with deaf and hard of hearing, um, people like you and me, we want to know what does work and what options there are out there so that we can share that knowledge with.
[00:25:59] [00:26:00] Others. And I think that's with school right around the corner that some of the questions that I'm getting right now. Is Okay. We have these students which been talking about, but now what should we order? And I think that's kind of our going to be our next step and why the survey is so important, because like you said, um, You know, what, what shoe fits you might not fit me.
[00:26:27] And by having that knowledge out there and being able to rate, you know, someone might say, well, I don't, I like the ear loops. And you say, I don't like the ear loop. So let's find a mask that would not have your loop, so it would have your loop. So I think those are important. Things to have out there. So when we do go back and people do need to order something and they are in a bind, they have that information, right?
[00:26:55] Yeah. I know we had talked about, um, getting the [00:27:00] summaries from the responses and doing kind of like trends. You know, and I think that'll be important. You know, the other thing that I think it just occurred to me too. So like you and I have this power to help administration make a decision about what masks and shields to, to order based on our kind of perspective and our knowledge and things like that.
[00:27:26] I think we need to. So remember that we also need to ask the kids, like, don't assume that what we pick for them is going to be something that's going to work for them. You know, it's the same thing. When people give me an accommodation based on an assumption, but that's not really what I want for that situation.
[00:27:44] Um, if they gave me the wrong shoe and it didn't fit, the shoe did not fit or the shoe is ugly or the shoe doesn't match my clothes, whatever. But. Um, I mean, and that's hard, you know, like [00:28:00] things will become less expensive when you buy things in bulk. And, you know, I know that administration needs to make a decision, but understand that there may be some kind of outliers out there that, you know, if they have a sensory disorder, they may not be able to tolerate, you know, what another kid can tolerate.
[00:28:19] So again, finding the right shoe. Right. And I think having those options out there and having, I think we talked about different flexibility and guidance and contingency plans, right. So depending on how, you know, we're opening up and. The individuality of the student and what the accommodations of the student side is going to be really critical.
[00:28:45] And I think that's going to be a huge job as we start thinking, we are already thinking about schools and reaching out to parents and students now and saying, Hey, you know, how have you been doing in the [00:29:00] community? And what kind of accommodations have you used? As a student, if they're old enough to tell you or.
[00:29:09] As a parent and gathering that information now is going to be important to share with that educational team as we open back up again. Yeah. You know, it might be I'm thinking it might be good to target some of the administration, like, you know, within our group from like educational audiology, I think now would be a good time to start saying, Hey, did you know about this information?
[00:29:35] Because I understand. That too with hearing loss and, um, vision loss, being low incidents, you know, sometimes we're not even on some administration's radar, you know, one kid, you know, for three counties that has hearing loss. You know where we're not going to be on people's radar, but I don't think [00:30:00] it hurts.
[00:30:01] Um, but I think what is at the forefront is that everyone is struggling to hear behind masks and shields and everyone in all settings, you know, at the doctor's office, when you go to the grocery store, I school is going to be crazy. It really is. So as we kind of wanted it, the maybe leave out a positive creative kind of note with everything that's going on and maybe just kind of wrapping up with some different consideration that others might want to have as they be open.
[00:30:40] And I think you've said a couple of them, one being, I think. Again, we have to remember every student is individual and the accommodations or the shoe, um, might be different depending on how they're learning, whether it's in person hybrid, [00:31:00] remote situations, um, their shoes or their mask or their accommodations is going to be a lot different.
[00:31:08] What else do you think. I think everything is really different depending on your perspective, right? Like if you're a teacher right now, thinking about going to school, you know, you're gonna want to be thinking about how keep yourself safe, how to keep your students safe and still being able to teach. Um, I think I know I've talked about this before, but I'm really worried about vocal fatigue in our teachers.
[00:31:33] So definitely talk to your administration about like planned breaks. During the school day where you don't have to talk, um, you know, figure out a safe place to stay hydrated. Um, as I cough throughout most, every webinar that I go through, cause I drink so much coffee. Now I'm trying to drink water and it makes a big difference.
[00:31:54] Um, so you have that perspective, you know, from the teacher, um, you know, [00:32:00] from the student level, I, I think, you know, when we talk about shoes and contingency plans, Um, people need to think about how is a student going to get the best auditory access if they used the residual hearing, um, when they're online, how are they going to get auditory information?
[00:32:22] If they're in a classroom setting. And then the other thing we need to figure out is the transition going from both. Because, you know, we're going from basically going from virtual to in-person chances are that we're going to go from in-person back to virtual. So we do have to see, you know, we threw everything together and like a week in the spring, you know, and we were all kind of scrambling webcams were getting bought up headsets with boom microphones.
[00:32:50] Um, those situations need to be, you need to have a plan. Um, for those kinds of situations and for them, the students that maybe are more [00:33:00] visual, maybe they use sign language interpreters, or whatever, making sure that they have the technologies that, that they need, um, to get access with educational interpreters, um, you know, having a decent wifi connection.
[00:33:15] Um, things like that I think are really important. And I think we've done a pretty good job. I'm thinking about it since March, when it wasn't kind of so acute in terms of the need, um, And then, you know, like parents, if you're a parent and your kid is going virtual and you have to stay home with them, you know, thinking about how are you going to help them, you know, get on the computer, listen to what they're doing, you know, talk to your education audiologists.
[00:33:46] That's what we're there for. To make sure that, you know, we can connect your computer to your kids' technology, um, provided you with resources and things like that. So we talked about knowledge as power [00:34:00] and, you know, I think that's what this is all about right now. We're still, you know, creating knowledge and we're still soaking up knowledge right now.
[00:34:09] Right. And then, yeah, always going back to that student and asking them. What's working and what's not working. And I think educational audiologist and teachers of the deaf and parents can really help them navigate. And this is, I think one of the pluses of this is we are forcing our kids To be better advocates for themselves because they don't have a choice right now.
[00:34:36] And so I think, you know, whether it's, I can't understand because of a certain mask or a face covering two, what other technologies could we utilize in order to improve the signal to noise ratio? So you might have a user or a non-user of remote technology or microphones who now becomes a user because.
[00:35:00] [00:35:00] They have to advocate more and they are in a more compromised environment. So I'm hoping we'll see a lot more strong advocates of I could because of all of this too. Yeah. And I was just thinking too, that we also need to remember about mental health. You know, like these family is some of them, you know, they're in a trauma.
[00:35:23] Environment. And so some of these kids, it's going to be really, really hard. And I know that the teachers know this, but our kids that are deaf or hard of hearing also you know, some of them yeah, in this situation or even more isolated than they were before, but at the same time, I have known kids that have also thrived.
[00:35:45] Um, in this environment because they do have the ability to hook into their computer. I mean, the fact that you and I can just do like zoom at the drop of a hat and have visual access and [00:36:00] auditory access. You know, when we chat online and stuff like that, but there's something more powerful about like seeing your face and you know, and all of that.
[00:36:10] And for some of our kids, this has actually been a great thing. Like I know that I've been able to participate in meetings and I never would have done before if we weren't, if everybody didn't now have the infrastructure to do everything online. Exactly. And I think it. Forces you to get outside of your comfort zone sometimes.
[00:36:33] So I know just kind of going off of what you said. I mean, being a newer cochlear implant user, when we went online, I was only three months Post activation. So I was freaking out about my ability to participate in zoom calls and Google classroom, like all of these different platforms that were out there and how, how I was going to navigate it.
[00:37:00] [00:37:00] And, but honestly pushing me out of that comfort zone made me realize that, Oh, wait, I. Doing a little better than I thought I would. And, um, I'm going to figure it out, other accommodations that I need in order to make it happen. So I think it, I don't know, jump started me with some of my confidence with my cochlear implant.
[00:37:26] So that was a positive, I think that came out of going online. Absolutely. Yeah. And like, for me, it's like, I'm so tucking that for me, what, the hardest thing for me is not doing so much of an information dump because I need to realize that people aren't as scattered or have as many options as I have in my head for how to do things.
[00:37:53] But you know, like off the top of my head, I can figure out seven ways that you can access zoom with captioning. [00:38:00] You know, but not everybody knows that. So, you know, like I know that things that you and I have been working on and other things is making them in more like, um, Like chunks that are more palatable for people to be able to understand, which is why, you know, we'll do the surveys and summarize it and help people realize that, Oh yeah, you're not the only one thinking about that option or what works for you and what doesn't work for you.
[00:38:27] Right. That is definitely one of your huge strengths. Tina. I think everybody knows you by your apps and your, um, Connectivity and all of the resources, you, you always have them. And I'm amazed. I asked you a question and like two seconds later, you'd come up with a solution. I love it. And then the thing is just like that.
[00:38:53] Can spread, like then you will use that, you know, like I think about all the great stuff you do with the teens and [00:39:00] those teens are our future leaders and that deaf and hard of hearing community. Right. So we all have a, I think. Purpose within educational audiology, for sure. And I love that we are a community that shares all of our knowledge, because like you said, it's a ripple effect, so it's not, it's really the future that's benefiting from it.
[00:39:23] And that's what we want. We want all of our kids who are deaf and hard of hearing to have the same opportunities. As anyone else, and to be able to do whatever they want to do, but they need the tools or the shoes as we're calling them today, um, to be able to do that. So I think, you know, this is just a powerful conversation about the pandemic and what we are kind of thinking forward about.
[00:39:50] Going back to school, but Tina, I feel like maybe in a month or so we might have to have another conversation [00:40:00] because I think, you know, what we thinking about and thinking about what might work, some of them are definitely going to work, I have no doubt about it, but it's just the little, you know, extra pairs of shoes we might not, we might need to have, um, In order to make things happen.
[00:40:20] And we, we don't know what those are yet. No, because we have not had the situation where teachers and students have had to be in the classroom socially distanced and wearing masks or shields. So I agree. I think this is ever evolving and I'm thankful to have you on this journey with me. It's always so awesome to like bounce ideas off of you because.
[00:40:45] It does. And you know, it's so nice to have that village. I appreciate everything you do today. And I so appreciate you coming on to the podcast today. And I hope that this information is going to be helpful. [00:41:00] To all of our listeners as we open up the school year. And, um, Tina, I will probably be reaching back out to you to maybe do part of our episode today and just kind of, what did we learn from reopening and.
[00:41:16] What new tricks and shoes do we have out there. So before we log off today, I know Tina, you have a website and you have different, um, avenues that you have your name out there. You want to share that with our listeners so that they can get ahold of you. So you had talked about like maybe putting out like our written description and it's basically, um, so like, you know, yeah.
[00:41:43] We were talking about earlier, I have this name to like gather yeah. Information. And then my thing too is I make lists. Or like spreadsheets. So it got to the point where I now have to make a list of my lists. And [00:42:00] so what I will get to Carrie is that it's just a, it's a Google sheet that has all of the different resources that I've created over the years.
[00:42:11] And, um, I will get that to carry to spread, but just know that. Um, there are different things that I've created, like app lists, like lists for apps that. Work for Apple devices or Android devices, um, geared towards people that are deaf or hard of hearing. Um, another thing that's really popular is one on speech to text options.
[00:42:35] So, you know, how do you get captioning? Um, when you're on a zoom meeting, Um, how do you get captioning? If you go to the grocery store and you can't understand someone? Um, I co-created a knowledge base with, um, a friend that looks more kind of at like the college level or the work level, having access and those kinds of [00:43:00] situations.
[00:43:01] Um, I have a social bookmarking site that has just. Over a thousand links that I've been saving for 12 years. But what I like about that is that categorizes things. So in the time of this pandemic, anytime I've seen like a video or resource that I think is pretty cool, I added to that social bookmarking site.
[00:43:22] So I have all kinds of like video tutorials about access for zoom or Google meet or all of those kinds of things. So I know it's, if you do a deep dive, you'll go down this rabbit hole for, for hours, but I figure I'm already looking for this information, so I'm willing to share it and kind of help whittle it down by categorizing it.
[00:43:45] And we do appreciate it. Cause I know I go to your website and you have a Facebook page and find the resources that I need because you do go down a rabbit hole sometimes, but to have at least it categorized and know that [00:44:00] I'm not gonna start looking at, you know, the best way to make pasta when I'm trying to look at something, but hearing is a good thing, right?
[00:44:11] Yeah. Well, thank you again for coming out to the empowEAR podcast. And like I said, you will be invited back again, but part two as when we opened back up. Awesome. Thank you so much, Carrie, for this opportunity and thank you to everyone out there. That's there to support our kids and this time. Alright, thank you.
[00:44:34] This has been a production of the three C digital media network.

Episode 2: empowEAR Audiology - Dr. Cheryl DeConde Johnson

[00:00:00] Welcome to episode two of EmpowEAR Audiology with Dr. Carrie Spangler.
[00:00:16] Hi, welcome for the EmpowEAR Audiology podcast. My name is Dr. Carrie Spangler, and I am your host for this podcast. And today we have a guest on our podcast today, Dr. Cheryl DeConde Johnson, and I'm really excited to have her today as we are going to be talking a lot about the pandemic and educational audiology and how students with hearing challenges are going to be.
[00:00:43] Going back to school or learning remotely or learning from a hybrid approach. So there's a lot of different that are going to be coming forth this school year. So before we get started about talking about the unknown and uncharted territory, would you just take a second to introduce yourself and your background and 
[00:01:10] where you came from and how you are, and where you’re at today? Well, where I came from was Anchorage, Alaska. No, just kidding. That's where I was born and the air force base anyway. Um, yes, this is great to have a chance to chat about the coming. Um, I don't know what to say beyond chaos, but, um, just an unknown. But anyway, my background is varied and starting off as a parent and then in communication disorders, educational audiology, deaf education administration.
[00:01:48] And, so I sorta just view myself as an advocate and like Carrie and just very passionate about knowing we can do a better job and we just keep persisting. I used to call it when I worked in the schools, gentle harassment in that you just keep prodding the person, the, the issue, the school, the whatever in a nice way, but not.
[00:02:16] Not backing down because, um, you know, we have a role in advocacy and we want our kids to take that role on as they get older, really the younger, the better, but, um, there's just a lot of people that misunderstand and we still have a lot of work to, they do. And we all know that. Having rigid steering, hearing status.
[00:02:38] It's not the same as others. Shouldn't really packed what, what you're able to do when you grow up. So anyway, I have a grown daughter. Too. That's been kind of my, my impetus and continues to, um, guide and stimulate me with her own issues around access in, in employment. And certainly now under COVID that unique situations that arise with trying to make sure she has access to the students she works with in a, at a college.
[00:03:11] And can you tell me a little bit more about your role with hands and voices as well? You said, as you said, you're a parent and an advocate that way. And I think that's kind of how you got started with hands and voices. That's true. Um, probably back around 1990, um, when I was working at the Colorado department of education and with other parents, um, being a parent, I was always.
[00:03:39] Concerned and ensured that there were parents involved in whatever we were doing. And, um, you know, we've just got together a couple of parents and we're thinking, you know, we need to have more of an organized parent voice and started at that time was called the hearing impaired family support network in 1990.
[00:03:59] [00:04:00] And, um, it evolved, um, and we now have hands and voices in Colorado. Right? Take, we changed the name maybe around 1999. Yeah. I can't remember exactly when that happened and continued our work. Um, we were fortunate to get funding through the health department and the department of education. Both of whom believed a role of the parent was very important and did activities for parents and.
[00:04:27] Yeah, we just had great response all the way around. And eventually other States learned about the work and we started to grow and grow and grow and hands and voices is, um, a really strong voice for parents. And what it's intent is that has remained is two things. One it's. Primarily parents. So it's a parent driven organization and it's not about modality.
[00:04:55] It is about getting, let families think they, their children need to be successful. So when you take away the modality issue, parents are all on the same page. As they are as professionals, they all want the best for our kids, whatever path it takes to get them there. We want it, but the advocacy becomes a big part of it, but because we're still.
[00:05:19] Building awareness and making sure that that path is smooth enough for kids to be successful in and what a great organization for a time, like now when there's so much uncharted territory and. Hesitancy and in decisiveness about how we're going back and how do we support each other and learning from each other.
[00:05:42] And parents definitely need that kind of support right now, what to do and what ideas and creativity can we have in this moment. So. And I just wanted to take a second to just share a little bit about how I remember meeting you. And that was a long time ago, I think, at a Phonak brainstorming event when we were.
[00:06:11] Going to do the gap program guide to access planning. And we didn't have a name at that time, but they had brought some different people together. And I won't forget that. I remember knowing your name out there as like the. Person who was the educational audiologist. And I just aspired to be an educational audiologist like you and I, but your handbook at a conference when I was still a student, I'm glad to score and to, um, Be able to meet you.
[00:06:45] I was so excited and then it has been such a great relationship. And you have been an incredible mentor for me throughout. I think it's been almost 20 years. Oh my gosh. [00:07:00] Now that we've known each other and I know you have become my great roommate for conferences. So it's, um, I really appreciate our relationship, um, both personally and professionally.
[00:07:12] So we have a lot in common in different ways. That is very true. And I'm all I'm doing is getting you ready to take care of me in my old age. Wow. Kumbaya relationship. Oh, well I think. You know, the big topic, obviously from a national perspective is how was schools opening up? So there's so many decisions that have to be made by amended administrative perspective all the way down to.
[00:07:53] All all aspects of education and from health and safety to education and [00:08:00] accessibility. And I think that's where I really would like this conversation to go. The guy was, you know, what did we learn from. When we shut down and merge and how did we, you know, what kind of things really popped up because of the shutdown and students who are deaf and hard of hearing.
[00:08:20] And then maybe once we talk a little bit about that, we can talk about what are some challenges we might see opening schools back up again. So, do you have anything about what you learned when we shut down for remote learning and different things that really popped up? Um, actually I think there, we learned a lot, some of it even positive.
[00:08:44] I think the difficulty was how unprepared schools were to go to remote learning. Um, and I have taught at the graduate level remotely for 20 years. So I'm used to teaching online and I understand a lot of the nuances of teaching online, but when you're a classroom teacher and you're used to having in a classroom and suddenly you're thrust into an online situation, lessons are different.
[00:09:14] You're you have to be much more structured. Many teachers are able to what I say wing it. They don't have, you know, extensive lesson plans. Because they're just natural teachers, but when you change the environment, what used to come to you naturally now doesn't and you've got just in general students that have little support at home.
[00:09:38] You know, there's two sides of this. Really? The children need to be supported to be ready to learn in the home environment. Just like we get. In a classroom, you get your kids ready to learn. At the beginning of the day, who's going to do that at home. Sometimes there is somebody home. And actually when we first went to remote learning, many parents themselves were either working from home or where they worked was closed [00:10:00] down temporarily.
[00:10:00] So there were parents at home. Um, but then also the teachers had to get ready to, how do they. Um, structure lessons online. So yeah, I think there's huge variability in how it was conducted. I think teachers had little direction in what to do. Principals just said, figure something out and there's all, you know, there's some families that never connected to online learning in their schools and there's others who did, um, There were teachers who were contracted to school districts rather than being employees of school districts who couldn't get access to Google classroom or whatever format, because it all went through their district email.
[00:10:45] And I remember a teacher telling me the deaf ed teacher telling me the classroom teacher says, Oh, you just work on the IEP goals. They don't have anything to do with what we're teaching in class, which is 180 degrees from what our teachers [00:11:00] of the deaf know that what they're doing supports everyday learning, but they need to know how their instruction is going in the classroom to support that.
[00:11:09] So it, it showed the inequities. Are they inadequacies maybe if some of our communication and at the same time, um, maybe open some doors. I think parents came much more appreciative when I talked to early intervention providers, parents really had to do the intervention to now. So it wasn't the intervention coming from interventionists coming in the home and just modeling, which, you know, we typically would model and then have the parents.
[00:11:41] Do the same activities, but now the, there was not a lot of ways to model. So you had to really be able to instruct parents, coach them much more coaching. So that was, you know, some of the good things I was talking to the teacher of the deaf in a state who still has a self [00:12:00] contained classroom. And she said for the first time she felt like she had the time to have.
[00:12:07] The discussions that prep, the vocabulary, all of those things with her students, because she had the whole classroom without interruption. Whereas before, when she was teaching in the same classroom, kids were still coming in and out to go to various specials or whatever. She thought that the kids got….
[00:12:26] much more instruction because she had much more time to devote to a lesson, and still do individualization with her kids. So yeah, all kinds of things were learned and I'm hoping that when classes go back in the fall, teachers have had a lot, yeah. Have time to think about what worked and what didn't work and at school administrators to think about that so that, you know, we're past that sort of trial and errors stage and more into, okay, this is what worked, let's expand on that.
[00:12:56] And that the schools are putting more structure [00:13:00] into the online learning. Yeah. And I think when we shut down, we were kind of all thinking and two weeks or a month would open back up again and it would be back to normal. So that was, I think another, I guess, um, hurdle in all of this where teachers are like, well, I'm going to get through this little bit of online learning and then we'll be back in the classroom.
[00:13:26] And that. Didn't happen. And I don't know if that's going to happen in the fall as well. So, uh, with your, I guess, more national perspective and working with different States, what have you heard from different States about opening back up or their experiences with remote learning? Um, I think technology is, is definitely a huge challenge deciding which kids needed at [00:14:00] home, which kids wanted at home.
[00:14:02] Um, how do we. Demonstrate to parents that, um, demonstrate to parents that their, um, children may benefit and could even understand better, you know, getting into this hearing versus, um, audibility versus intelligibility. Um, sometimes I think kids themselves think, Oh, I'm doing good enough. Or parents feel like, you know, they're doing they're hearing well enough.
[00:14:28] Um, so. I don't know what's going to happen. I feel for teachers, um, I feel for all the parents who have to work and how their children are going to be supported to learn at home. Young children need structure, I believe. And they need the discussion that relates different concepts to everyday practice and to experience and how you take online learning and push, integrate experience with it so that it becomes more meaningful.
[00:15:03] Um, Teachers last spring who were managing their own children's online learning and teaching their students being on call almost 24 hours a day because suddenly they, their students could contact them. Um, it was totally different in it. I don't know what the fall is going to look like. They, you know, well, there's totally in the classroom, totally online, a hybrid.
[00:15:29] I think there's going to be a lot of hybrids because of physical distancing and the other things. Um, obviously the, the mask issue is a huge concern for accessibility for teachers and kids and how that's going to be dealt with. In the schools, you know, as we've taught shields seemed to be such a great solution, but yet there's reticence because of the fear that they're not going to be sufficient to, um, keep people safe from, from droplets.
[00:15:59] Um, [00:16:00] uh, here there's less emphasis on. Getting COVID from contact that yet, as I was saying in an earlier conversation, I had today with a very talking about classroom acoustics in a very bare classroom teacher commented below that's what costumes are going to look like when we go back in the fall, they're going to remove all the materials in the books and the things that made the classroom so alive.
[00:16:27] Aren't going to be there. So then you begin to wonder why kids are coming back. They're coming back to a shell of their education. Obviously they have peers and relationships, but I don't think we know that this is yet another stage in trying to bandaid in the spring, just to get something, going to support our children, to trying maybe some different things, but without.
[00:16:52] Sufficient direction. Um, I know there's teachers that are turning their basements into studios so that they can have a place that's quiet, that they can [00:17:00] teach and have all their materials and have a chalkboard or a Blackboard or something where they can illustrate and demonstrate. So I don't know. Yeah.
[00:17:09] I mean, teachers are amazing and the creativity and the way to. Fine solution because they do want what's best for the kids that they owed teaching. And that's why they got into teaching to begin with. Um, but I, I like to go back to some of these points that you brought up about the mask and the acoustics and physical distancing and listening to peers.
[00:17:34] And I know we have had some conversations and just a more personal level. And I've shared with you, just my own personal experiences of being out in the community and being cut off from communication. And I always viewed myself as someone that could overcome a lot of my human challenges with [00:18:00] my cochlear implant and hearing AIDS and getting closer to someone and watching you and, and using these different coping strategies and.
[00:18:10] And I think you have shared too, your daughter kind of has gone to some of the same similar experiences I have. All of a sudden we have mascot and the community, which we know is very important for everybody's health and safety and slowing the disease or coronavirus down, but it really presents with.
[00:18:33] For us, for those who are working with individuals who are deaf and hard of hearing with the balance between what is your right for communication with ADA and Ida and five Oh four and what we're dealing with with a pandemic that none of us have ever had to deal with before. So I guess that's. [00:19:00] Kind of where I wanted a conversation to go next with reopening of school, then knowing what the challenges will be for students with hearing loss, what are some things that maybe we can brainstorm that might be helpful in a trial and error way, knowing that what we know today might not be what we know tomorrow.
[00:19:23] Have you thought about that? Yes, but it's like, everything is complicated. We, I think people are learning how much visual access impacts communication. And it's not just kids who are deaf and hard of hearing kids with autism, with young kids, with other learning problems. They. Learn by the facial expression and the tone of the person speaking.
[00:19:53] They may not totally understand the words, but they get information from seeing the face. So it's not just   our deaf and hard of hearing children. It's a lot of young children and the dilemma is how to provide access. Within the constraints we have of the appropriate masking, shielding protection, whatever it's going to be and where it, like you said, where's the balance?
[00:20:21] What do we, what can we give up to find that balance? And I think we need to learn from the children themselves to some degree and. They, you know, have these conversations so that they really understand what COVID is, why we're doing this, what the risks are, um, how they learn and recognize that. Learning might be more challenging, but what, what could happen that would help if, if there's more pre-teaching, if there's a combination of online where you aren't close and you can, you know, like we are talking now, even in a school building, this could happen and then kids could come together.
[00:21:05] Um, so I think children might have some answers for us. That maybe we haven't considered, and they may have some ideas for us that we haven't thought about. And I think having them be part of the solution will help them understand just in life in general, it's a give and take. You don't always get your way.
[00:21:25] It's not always perfect, but in resiliency, you figure out a way. To work through that. And I think that could be an important lesson if it's handled right way that kids really have the opportunity need to discuss why this is why we're here, why we're doing this, what are the challenges? You know, I mentioned earlier, that'll Mo my mapping activity for some, some teens might be really fun and see what they come up with.
[00:21:54] Um, and maybe you can even do that kind of an activity online with a group of students. One of the. Challenges for our deaf and hard of hearing students is that online learning has been very isolating. And I think one of the other things to consider is how we can bring even in a school district. If kids are in different schools, is there a way we can bring them together on a regular basis so that they can have a cohort, a group of peers that they, um, have an activity that they do within can look forward to meeting maybe weekly.
[00:22:27] So maybe there's more. Um, need and opportunity online because we don't have to take you out of school. We don't have to drive them somewhere, but there is more opportunity to try and do more grouping of kids. Um, there's yeah. It's. It's hard. I think, um, we don't have a lot of answers and it's going to be still learning as you go.
[00:22:53] But I think there are some suggestions that, um, you know, we can talk about, um, [00:23:00] using, um, remote mic systems is absolutely critical if they're going to be in class and going to have a mask, we know that the masks muffled speech. If they have a mask, they really should have window masks of some kind so that they have some access to the face.
[00:23:16] Still believe shields is one way to go. Um, But at least by using remote mic, then the, and the thing that gets to the student. And especially when you talk about physical distancing, you know, I was talking to my daughter about how she was going to arrange some of her counseling at the college level, and she was going to do things outside so they could physically distance.
[00:23:39] Well, once you put somebody six feet away and they have a mask on, even if it's a clear mask, It's really hard to hear what they say. So you've just added now yet another variable by wanting to be outside. So it's really kind of really looking at the situation and we can look at this set framework under UDL universal design for learning, which looks at the student themselves and what they need, the environment that they're going to be in.
[00:24:09] The tasks that occur and then what tools are necessary in order to be accommodated in that situation. And maybe just a simple format like that with students to have involved them in this sort of analysis, and then help them come up with some solutions that might, um, might work for them. And if they don't work, they've tried it and they'll try something else.
[00:24:32] So that way it can be a really good learning experience. Yeah, no, I really like that. Process. And we always talk about wanting kids to be their best self advocates buckets. And I think this is an opportunity for us as educators is related service personnel who are working with deaf and hard of hearing to really.
[00:24:56] Focus in on the self advocacy skills, because with everything that's going on, I feel this population is early hit hard. Uh, and we don't really talk about that because we are, you know, this population is a smaller population, but I, I know there's a lot of. Tips for adults. Um, what you can do when your communication is compromised, but all of these steps aren't necessarily going to help our younger kids.
[00:25:28] So if you're not at a literate reading level yet, you're not going to benefit from the suggestion that CDC has said with captioning, we're writing things down. And so how do we kind of come to what you said, like meet in the middle. Um, with some of the safety and then the accommodation piece of all of this too.
[00:25:52] So, and then you did mention something about isolation too. Have you. Thought about when they go back to school again, that physical distancing and mask. If, if students are going to be required to wear a mask, and I know I've heard different things, they might have mask breaks depending on. Where they're at, but at that point, they're going to be further apart from each other.
[00:26:20] So, uh, and our lunchtime, that's going to be looking a lot different too, but I think so much of a bowing to school. And the reason we want kids to go back to school is because we want them to be in community with each other and they learn better that way. So how do we make sure that they're included that way?
[00:26:44] You know, I was watching a group of students, um, in a summer recreation program and in the town where I am. And, um, as part of the program, they've included COVID education. And these were kids probably from age five to 12, every single one wore a mask. And I began, you know, it occurs to me that. Do you want to be like everybody else?
[00:27:12] So if everybody's wearing a mask, you don't want to be the only one, not wearing a mask. So I don't think getting kids to wear a mask is going to be a problem. But I do think it is important to have times when they can remove the mask. And obviously eating will be one of them. Um, cause I think they need to learn what these.
[00:27:32] Covert accommodations are just in general, but I think kids are more resilient than we think. And, um, and I, I know there's social, the social pressure to be like, everybody else is great. And if it's just the role, you know, we've heard that, you know, well, you have to wear seatbelts. So we all wear our seatbelts.
[00:27:55] Um, and this is just the rule that we have for right now. And this is why, so. [00:28:00] I don't think the problem is going to be getting kids to wear masks. The problem is going to be communicating with the masks on, and I know of school districts where they have ordered clear masks for the entire elementary school population, because it's a school, that's a center based program for deaf and hard of hearing students at the elementary level.
[00:28:20] So, you know, I don't remember how many kids, 20, 25 kids they have, but spread out across grades. But, um, Yeah, that's just what the school decided they were going, going to do to honor communication access. But my, you know, not every school's there, it took some advocacy on the part of the teachers to make that, um, need known and they acted last spring so that they have the materials ready to go.
[00:28:48] When school opens in the fall, um, Yeah, there are shortages. So, you know, the ability to get things at the snap of a finger is just not going to be there. So, [00:29:00] um, the, the cleaning of the mask, cause I mean, there are kids that have other physical, um, Differences, um, with feeding and things like that. I mean that those severe needs kinds of kids have another set of another whole layer that is going to have to be addressed through special education.
[00:29:22] And, um, Know, they'll, it's just, then it's going to be more like, kind of the hospital situation where you're providing more care. Um, so it's different groups have, have I think different needs and are going to require different care. You know, we've heard about having kind of an isolation room at the school.
[00:29:41] So if a child comes to school and get sick, they have a place to go, you know, and these kids get sick. And if the parents are working half day home, Some somehow we're going to have to have things in place for families to have access to support services for those [00:30:00] situations. Right? Yeah. So another question I have, and I was wondering if you've talked to anyone since the hands and voices and being connected to different families, do any of the parents that you'd talked to, do they have an aid.
[00:30:19] Initial thoughts about whether they want their kids to go back to school or do they want them to do remote learning or hybrid? I mean, what are the thoughts about next steps or their choices? And when they're thinking about their own child with hearing loss, Um, I've not talked to that many specifically about going back to school, but I know that the accident issue is big.
[00:30:49] And, but I also know they realize that it's difficult decision and they, you know, want to have the, at least the clear masks. Used [00:31:00] by, you know, all kids and staff. Um, and I have heard a couple that said, you know, they've got family members with health issues and they just can't take the risk of having children back in school.
[00:31:11] And I think that's going to be true of everybody. We're going to have to have multiple options because of so many different risk issues and, you know, teachers who are at risk, what do we do when you're a teacher of the deaf. May, you know, had an autoimmune disease or something that they're compromised and, and can't be back in the classroom and there's going to be staffing issues around that.
[00:31:35] So you, you know, you don't have that many teachers of the deaf, how are you going to juggle? So I think there's a lot of decisions from both parents, from teachers, um, about how, how to make it safe to go back. Um, and so they're, you know, those are situations that. You know, families may just choose to keep their kids in remote.
[00:31:56] Education. I think some families are so fearful and again, so many families have family members with some kind of health issue that they just feel safer having the kids at home, whether we'll see some sharing of kids with parents that are working and go to a friend's house, some of the part of the day for their school.
[00:32:19] I don't know. I don't know how those things will pan out, but, um, I think at time will tell when kids start going. Yeah. Back to school. If the numbers start changing and we may have to pivot really quickly in some areas where the numbers are high in other States, if the numbers are really, really low, maybe families will feel safer.
[00:32:41] About sending their kids back to school, but I think we just have to continue to be creative. Um, and, and, you know, again, that access issue is always, always paramount. Yeah. So as we kind of wrap up, I mean, we've talked a lot and I think our conversation could go on and on and on, because like you said, We're going to have to have plan a, B, C, D E, depending on the pivot point that we're at and how things change or new information comes about.
[00:33:19] If we have a hot spot or if a kid goes back to school and they realize like, I, this, even with the accommodations and supports that we're able to meet in the middle with, it's still not going to work out. Can we. Go back to virtual learning. And if we go back to virtual learning, what are the supports that we need there as well?
[00:33:40] So I think there's so many different moving parts. It's really hard to overwhelming really to wrap your head around. But I would love to just from our discussion, be able to maybe at least leave with some. Five tips or something that we know [00:34:00] right now would be helpful for professionals who are working with deaf and hard of hearing parents.
[00:34:08] So even students, themselves who might be listening today, what kinds of things maybe we could give us tips, uh, for reentering or however they're going back to school. Can you think of brainstorms, some temps that we could use? I have a couple. And then we'll let you add, um, access to peers, figuring out how to remotely.
[00:34:39] Have bring kids together and create some social interactions, um, using technology and making sure there's technology support for, for families at home. When, you know, we know that, you know, if you've got three kids in your family and they're all online learning at the same time, the bandwidth issues. 
[00:35:00] So how do we support technology?
[00:35:04] Um, And then the other one that I keep talking about is make sure there's visual access available in good lighting and, you know, just, just give teachers some tips. And I'm sure they're learning that now as they go into online education in a more formal way, how you get ready to accommodate your students, but then also what do we tell parents to get your child ready to learn?
[00:35:28] So that. Um, when kids do come to the table to learn, it can be active. I think so having very structured individual lesson plans so that we, um, keep kids stimulated. One of the things that we heard I heard last spring is the kids were getting bored of online education and, um, that's. That's a fact that, you know, we have to deal with, especially if they're going to increase the number of hours, the kids.
[00:35:59] Have to be online. So there's a couple of, what do you think? I think, um, one of the things that you mentioned earlier, the students need to be part of this solution. So I think that is another really important part that we don't want to forget about because they have a lot of good ideas and they're living it every day and what we might think.
[00:36:24] Might not really impact them or something that is impacting them. We might not have thought about. So, and I think, again, this is another opportunity for us to build up their self advocacy skills and their self determination skills. And we always talk about that, and this is a real life. Opportunity to be creative and set goals and try them out and they don't work.
[00:36:53] What else can we do to make it work and coming up with a lot of solutions that way. So I think working really, again, thinking about that whole team, but making sure that student is, is the cornerstone of that team. Excellent. Yes. Yes. So they quit. I had a lot of good conversation about the pandemic and all of these unchartered waters that are coming up and I'm hoping as schools open up, maybe we can have another conversation because I think.
[00:37:34] When they do open up, we're going to have another eye opening, but what additional challenges that we haven't considered yet, and some additional solution that we haven't considered yet, and being able to come back around and talk about what worked and what didn't work and what can we try next to make sure that our students who are deaf and hard of hearing get the best access that they can given.
[00:38:03] The time that we're in right now. So I forgot to mention something that I would like to say. And that is the use of classroom, audio distribution systems for all children. When we think about a teacher masked and then the distance, um, and then the teacher trying to project their voice louder for kids to be able to hear there's going to be difficulty on the student and.
[00:38:31] With his speech intelligibility and voice fatigue on the part of the teacher, who's trying to project their voice. And one of the recommendations that I'd like to see is that all this is not for deaf and hard of hearing students. This is for all kids that they have access in their classrooms to a CAD system.
[00:38:52] And obviously if there is a deaf or hard of hearing students who uses FM. It would need to be able to be compatible. So you'd have to look at the manufacturer and some things like that. But anyway, I just, and especially if they're going to do more outside work, um, I think there's been a lot of talk about opening up and being outside more for classes, which is great, but that just adds another variable to the difficulty understanding what the teacher's saying.
[00:39:20] Right. And just to add onto that, if we are going to be physical distancing more, we might be setting up classrooms in a more, not acoustic environment, such as a GM or a common space that doesn't happen. You know, walls. So having a good signal to noise ratio is going to be really critical. Like you said, for all kids and our teacher, they're really going to be appreciating having that extra voice as well.
[00:39:51] So another more global tip for education. Yep. Access to auditory  information is really important. And I think what is it? 70% of what kids learn is through listening. So we want to make sure that they have the best access that they can when they're in that learning environment. So well, shale, I just want to say thank you for coming on today to the podcast.
[00:40:23] And I hope all of our listeners learned something or were inspired and had some different brainstorming ideas that are coming about for them as their own districts open up, because I know everybody seems to be having a different plan as they open up. And there's a lot of. Way and challenges as we do open up.
[00:40:46] So I think we just need to stay positive and be creative and be able to support one another so that when we do open up. Well all there together to figure this out. And I think we do need to do part two, come a couple months from now and say, Oh my gosh, that was the worst idea there ever was. And look at, we learned, well, I going to be inviting you back for part two.
[00:41:17] As we opened back up and figured out what we learned and what we need to do, definitely. Great. Well, thank you. It's been delightful. Well, thank you. So have a great evening. This has been a production of the 3C Digital Media Network. .

Episode 1: empowEar Audiology - Dr. Carrie Spangler

[00:00:00] Welcome to episode one of empowEAR Audiology with Dr. Carrie Spangler.
[00:00:16] Thank you for joining me and my first at the show podcast for empowear audiology. Again, my name is Dr. Carrie Spangler, and I am your host and I'm a passionate audiologist with a personal hearing journey. And I hope you subscribe today. So you don't miss any of the upcoming episodes from different professionals.
[00:00:37] and individuals with personal journeys related to hearing challenges. But today I really wanted to take a deeper dive into my own personal journey of living with hearing loss as this is really the reason that I wanted to start this podcast is because of my own personal journey.
[00:01:01] I have been empowered by many individuals along my life. And I wanted to share that with you and hopefully challenge each of you along the way. But as a kickoff podcast, I hope this will inspire and motivate each and every one of you as listeners, whether you have a direct or indirect relationship to the world of hearing loss and audiology.
[00:01:27] So I'm really taking a deeper dive into my own personal life of living with hearing loss. Of course I can't cover everything. That would be a long, long podcast , but I hope that you will be able to experience my way of emotions and experiences, both good and bad, and you can use these as learning tools and motivation and whether whatever journey that you might be.Experiencing right now.
[00:02:00] So I hope you've fit into my shoes for this podcast. You learn and you gain a little insight into my own into my world and understand a little deeper of why I really am excited about empowear audiology as a podcast. So I truly believe that all of us was created, but a purpose on this earth.
[00:02:25] I believe that honestly, I was born with a hearing loss for a very good reason, and it led me to the field of audiology so that I would be able to share professional expertise intertwined with all of the personal experiences. So, this was really was not an accident. It was purposely created for me, but I have a long journey of how I came to accept my hearing loss and be okay with who I am.
[00:03:05] I love this quote from Rick Warren. He wrote the book purpose driven life in 2002. And he says that character is both developed and revealed by test and all of life is a test. So I ask all of you as listeners. What are the tests that you are faced with in your own life? I really challenge each of you to reflect back on your own life test and see how they challenge your own character as a human living on them.
[00:03:40] So to start with this podcast and my life's journey, I think the only way to start this is just where I came from. And that was my parents, Mike and Pat. And Mike and Pat, they met at Kent state university in the late sixties. They were both in education. They happily married and they both started off working as teachers and they decided to build a home.
[00:04:10] And a few years later they would decide it was time to start a family. So the first born was actually due on December 25th, Merry Christmas. And, Mike, Dad, was a dedicated wrestler and dedicated coach. So, four days before due date and December 21st, , Mike was at a big wrestling tournament and, and that particular day, their firstborn decided that it was time to enter it into the world.
[00:04:47] So I can only imagine what Pat was feeling, that frustration before cell phones were. I imagine trying to get a hold of the Mike at a school on a Saturday to say, get to the hospital. You are about to have a baby. So, December 21st, Carrie Lynn entered the world. However, not without causing anxiety.
[00:05:17] The placenta had broken away too soon. Lack of oxygen and emergency caesarean was necessary. Apgar scores were low and it was just a big scare for anyone, especially new parents. The doctors later caution my parents about the side effects of lack of oxygen, mainly mental and developmental delays. But there was really no way to tell the extent of the damage right away.
[00:05:51] And hearing loss was not one of those side effects that was mentioned to my parents. So at each pediatrician appointment questions were asked by the doctor about feeding and sleeping , and crawling and walking and speech and language development and just overall health in general. And overall, I was meeting quite a few of these important milestone, but I was definitely not meeting the speech milestone because I was doing so many of the other milestones.
[00:06:24] It was the assumption of many doctors that everything was okay. That hearing all or hearing nothing philosophy was really believed at that point in time. However, my mom had a gut feeling from the beginning that there was something quite not right with my hearing. And that gut feeling actually began in the hospital and she remembers the phone ringing.
[00:06:52] And at that time it was a corded phone with a rotary dial and it had a very loud ring and she remembers the phone ringing and me not startling. And that's where that first gut feeling about my hearing developed.  At each pediatrician visit, she would inquire and express her concern about hearing and speech development.
[00:07:21] And the doctors would do what we call as audiologist, a paper crinkle test, or the clap test. And I would turn my head. And the doctors would say, Oh, you're over protective parents. Or, your child's a late bloomer. And so as parents, when you have several different pediatric pediatrician telling you that you begin to think, Oh, maybe they're right.
[00:07:54] And of course, as a parent, you don't want anything to be wrong with your perfect child. Why would you not want to believe them? Let’s fast forward, four years.  This happy go lucky child named Carrie was developing great with fine and gross motor skills. She was always smiling. She slept extremely well.
[00:08:20] She was actually surprisingly social. However, there was one major concern. No one could quite understand what she was saying. So at that point in time, my mom had enrolled me into a story hour at the public library. And when the kids enjoyed the story time, the parents had an adult parenting education hour.
[00:08:46] During this one particular story time, a speech language pathologist was talking about speech and language milestones, and she was just going over those different mile milestones and different red flags started to go off in my mom's head.  Afterward she spoke with the speech language pathologist and the speech language pathologist said, well, if you, if you have concerns and rightfully so at the age of four, you really need to have her hearing tested.
[00:09:26] And my mom has said, well, I've taken her to the doctor and the speech pathologist luckily expanded on what a hearing test was. And my mom went home that day and searched the phone book and actually called the local health department to find out where to take me. So at my first appointment for a hearing test, I, at this point in time, I was four years old.
[00:09:53] Being able to do a conditioned play task, or I raised my hand.  I was able to understand that. And what did you, what did the audiologist find out? She found out that I had a mild sloping, profound, bilateral hearing loss in both ears. So as a child at the age of four, I do remember getting fit with my first pair of hearing aids.
[00:10:22] And I remember getting the earmolds made. And at that point in time, it was a liquid and powder mix that the audiologist would mix together and form that pink material and they squirted it into my ears. And I remember the audiologist talking to my parents and I had this pink stuff in my ears mold impression material. 
[00:10:48] And I could just remember that I was moving back and forth. And then I remember going back a few weeks later and being fitted for the first time with my hearing aids. And while going down the hallway and hearing my footsteps for the first time. So that was really as a four year old, an exciting day, for me as anything new and different and being the center of attention would be for anybody.
[00:11:15] Little did I know about the experiences that my parents had and the other side of the fence. They were so good at pretending that everything was normal and that this was just the normal part of a four year old life. And I do appreciate that because they had the highest expectation for me. But on the flip side, I am I guess, uh, kind of sad that they did not have anyone else along their parenting journey that they could talk to and really know that they weren't alone in this process.
[00:12:00] Fast forward, just a little bit. And, I'm kind of getting ahead of myself, but I wanted to share a little bit of this, so that you have a background, but a few years ago, as an audiologist, now I had the opportunity to just share my personal journey and really this wasn't something that my mom and I talked about a lot, or that family talked about a lot.
[00:12:26] And so I wanted to know from my mom. What was she feeling along this parenting journey? Because I'd never really thought to ask about it. We just kind of went through life as any family kind of does every day. You know, you get through the day and we'll get busy and you just do your best to raise kids.
[00:12:52] Because I was doing this presentation, I decided that I would ask my mom to write down some of the feelings that she had. And so I thought I would use the grief cycle, which some of you might know was originally defined to explain the emotion that someone goes through when they lose a loved one.
[00:13:15] But the models also applies to a loss of a job, a divorce or other life altering events. So the cycle includes denial and anger. And bargaining and depression and acceptance. And so I'll share later on how, even though that this model actually fits a lot of what I felt growing up with hearing loss and think all of us go through different levels of emotions and own life when we go through difficult times or we lose someone or we're going through a diagnosis that we don't know about where any kind of event, but I wanted my mom to really think about these different stages and see if that model fit her journey as a parent. So back to my mom, I had written down those different key points of the Kubler-Ross model.
[00:14:18] She said, let me think about it and I will get back. She have the chance to think about it? She just started writing down everything that she felt. Honestly had about 10 pages that she wrote down about that. And it just was shows how important it is to be connected with others who are in the shoes and had the chance to share what your feelings are.
[00:14:51]. At some point, I want to have my parents on this podcast so they can share their own feelings. But I wanted to  summarize just a little bit about my mom's feelings through the parenting process so that you can get a better understanding of the importance of empowear audiology. Empowering those that we work with and that we see on a daily basis and the parents and the kids and the consumers and ourselves as professionals, we need to be empowered.
[00:15:29] So the first cycle it's denial and my mom wrote that for that denial it's part of the cycle. Felt that she ignored her gut feeling. She knew that there wasn't something right. And she allowed doctors to convince her that their perfect newborn was well. And so that was kind of that denial part of the cycle that she really felt dealing with.
[00:16:07] With the hearing and the hearing loss and the next part of the cycle is anger, the anger or the first reaction, really, when she found out, she thought to herself, you know what, we did everything right. And you want your child experience to be perfect. She thought like, Oh, all of my other friends, I have perfect first child experience. Why didn't we? And they just really, as parents felt inadequate to do with a child with a hearing loss because they didn't,  know nothing about it. So what are you supposed to do? They thought for themselves and that really manifested into anger, and that part of their cycle of that grief cycle.
[00:17:04] So the next section or the next part of that grief cycle is bargaining and she felt like she could say, “You know, we work really hard. Yeah. If we go to therapy all the time. If we put all of our effort into this, the hearing loss and the issues go along with it, will go away? So kind of like that, dear God bargaining.
[00:17:40] If we do this, will you make this all better? And then the next part of that cycle is depression. So my mom reports feeling powerless and overwhelmed and frustrated and guilty at times when I was challenged. So I'm feeling alone and not having that support. And they didn't know anybody else at that point in time who was going through this type of an experience.
[00:18:09] And then the last part of that cycle. Is accepted. And, she really talks about realizing that, Hey, hearing aids and therapy are not a quick fix. And coming to terms that every new experience, whether it's a cap or a sport or swimming would always involve some kind of unique modifications or accommodations for me.
[00:18:40] So my mom also talks about the cycles and that you don't, you can skip cycles, you can cycle through several different times and she reports and, and really shares that she cycled through these stages [00:19:00] several times throughout my life. And what I think. Is really, I'm trying to think of the word, that last part of acceptance or that the most powerful part of acceptance is that she really could accept my hearing loss when I was okay in my own skin.
[00:19:29] So, she's felt like she cycled through the stages of grief. Until I truly accepted my hearing loss, which for me, I would say I didn't truly accept my hearing loss until I decided to go into the field of audiology. I just want to say that I am thankful that God chose Mike and Pat as my own parents, because they truly loved and they supported, they encouraged, and cared for me and, and the greatest way possible. So, I just want to say that I would not be who I am today without they're continuing support. And even today I, depend on their support to get me, through different stages of my, of my own life, going through parenting and everything else that we all go through on a daily basis.
[00:20:36] But. Again, I kind of want to reflect back on that quote that Rick Warren and his book, the purpose driven life says, and he say that character is both developed and revealed by test and all of life is a test that I certainly put my parents through a challenging life test. So I'm going to kind of switch gears a little bit, and I want to share just a little bit about my own personal experiences of growing up.
[00:21:06] With hearing loss and just give you just a peek into my authentic look of my own life. I think you will see that the grief cycle, that I really did take baby steps to be. Becoming competent and to becoming an advocate and I think you will see this through different podcast. When I talk about different topics that my emotions that time might have seemed like gasoline and they were dangerous and destructive and not other times in that cycle. I carried myself with much confidence and acceptance. So I do love quotes. And so you're going to hear different quotes and different podcasts depending on what the topic is. And I love Helen Keller's quotes. And one of her quotes about character is, she said my character continues to develop through trial and suffering the soul strengthened and success achieved.
[00:22:18] I love keeping that quote at the forefront, because sometimes we have the fall and we have to fall hard in order to be, to, to go up and to be strengthened. And to know that success is ahead of us. So to give everybody a little framework about my early education years, I basically wasn't as you know, identified until age four.
[00:22:45] And by the time I got my hearing aids, everything set up and in the therapy, I was ready to start kindergarten and my school district hadn't had a lot of experience of dealing with a child with hearing loss. So. My mom signed me up for kindergarten and we decided to see, let's see how she goes, uh, how she does and at that point in time.
[00:23:17] So any of you who work in the schools and know how involved IEPs are, they can be 20, 30, 40 pages long when I was. Going to elementary school and middle school. I had a one page IEP. So at that point in time, really I was on an IEP for speech sounds. So I think I was working on every single speech sound there is to work on because no one could understand what I was saying.
[00:23:53] So that was the basic of my IEP at that point in time. So another thing that growing up through school and going to public school is that I didn't have an educational audiologist or a teacher of the deaf on my team. So. My teachers didn't really understand a lot about my hearing and my hearing loss and different accommodations that needed to happen in my classroom.
[00:24:33] And on the flip side, I didn't know a lot about my own hearing loss and how to advocate for myself. So there was a lot of times going through school that I probably got out or didn't understand something. Right. And we  didn't really look at the foundation of why that was happening. So I could remember back in fourth grade and I was tall so I was seated in the back of the room, so I wouldn't block anybody else. I'm sitting in front of me. And I remember the teacher walking around the room, while giving spelling tests. And I had the hardest time with that because I really relied on being able to see someone's face when they were talking, but I really didn't know how to express myself that way.
[00:25:52] So instead of raising my hand and asking for a repetition, I decided that I would just glance over at the kid sitting next to me to see what that spelling word was that I missed. And I wasn't cheating. I just didn't hear the word, but the kid is sitting next to me immediately raised his hand and called on the teacher and said that I was cheating.
[00:26:26] So I actually got sent down to the principal's office for cheating on a spelling test. And I just remember being devastated and, and really not knowing how to explain it, but I felt like I was the person to blame. So that was just one of those reflections of going through elementary school and not knowing enough about why I had to wear hearing aids and what my hearing challenges were in order to advocate for my own self.
[00:27:04] So, as a professional, these early self-advocacy or early challenges or barriers that I had really gave me an opportunity now as an educational audiologist to reflect down some of these difficult situations. And, I didn't realize that others didn't hear like me. I just assumed that we were all in the same boat and there are so many tools and guides out there right now to help professionals with this topic directly to help our kids directly and also to share with families. So,I think even though these were tough challenges for me and that hearing technology, wasn't that great at that point in time as it is today. All of those exceptions now give me insight to working with families and with the students every single day.
[00:28:15] So I really, what, who encourage, whether you are, consumer with hearing loss, whether are a student with hearing loss, whether you're a parent who has a child with hearing loss. So, or a professional who works with individuals with hearing loss, building self esteem and competence and knowledge advocacy is really important to do. So let's go circle back around and I'm going to fast forward through a few, more years to the middle school years. And I'm sure all of you guys can think back to middle school or junior high and have some unpleasant memories of those years, because it's just a tough time, no matter who you are. 
[00:29:10] For me, I felt like it was even more amplified due to having braces and horrible hair and wearing hearing aids and having an accent, which is my deaf speech and having trouble, especially in crowds and social gathering, keeping up with everyone. So this is probably the first time that I've felt like I entered into [00:29:53] what we call the Kubler Ross grief cycle for the first time. So, so like I said, we'd [00:30:00] come together as a group of middle school, adolescents, and you just really want to be part of the group but I always, at that point in time like I was floating around on the outside because communication and connecting was really difficult for me.
[00:30:22] So I went through this very strong period of anger and bargaining and depression during that part of my life. I wanted to bargain with the God. You know, if I do really good on my test, my hearing aid, I won't need them anymore and you know. I will be a good person for the rest of my life [00:30:50] if I don't need to wear my hearing aid anymore. It was just really difficult as [00:31:00] a middle schooler who has a disability and being the one and only. That was one of those difficult years. You didn't really want to talk to your parents about it cause you didn't want them to worry. And I didn't really have any friends I could talk to about it because they all had normal hearing and really wouldn't understand what I was going through.
[00:31:29] So it's just one of those cycles, that grief cycle that was really difficult at times. So as an educational audiologist today, I'm able to reflect back on those feelings. I realize like there's actually research and data behind what I was feeling and you know, communication and communication barriers [00:32:00] are universal among all people who have hearing challenges.
[00:32:06] And a child or a student with hearing loss is going to have difficulty interacting in a spontaneous way when in a cafeteria or a gym. And all of it was different social situations. So there was kind of these other host of secondary problems that can arise when you're feeling on the outskirts.
[00:32:37] So even though it was really difficult in that time, now that I am in the field, I feel like I can really reflect back on that difficult time and create it for good. So do you do a podcast? I can't wait to share with you about the [00:33:00] importance of peer connections and peer mentorship, because it really, as a professional, my experiences growing up and during my middle school years really was a driving force for what I am passionate about.
[00:33:19] Today let's fast forward a few more years to my high school years. I would say high school I felt a little more confident in who I was. We got through that awkward tween, early teen years. The boys are starting to get a little bit taller than the girls and my hair was a little bit better. I got my braces off, so I was feeling a little bit more confident about myself.
[00:33:49] I was part of the volleyball team. I was part of the basketball team. I had a built in network group of friends who honestly, [00:34:00] these strong friendships have continued until today. So I'm, friends with a lot of my high school friends today, which is great to look back on and be able to share all of those great memories with, but I still would say that during high school, I was not a hundred percent comfortable in my shoes as a teenager wearing hearing aids.
[00:34:24] I still, at this point in my life had never met anyone else with hearing loss or who were hearing aids. When I was a senior and getting ready to go to prom, I was still so self conscious about wearing my hearing aids and I didn't want others to see them, even though they knew I wore them. For prom, the [00:34:53] popular hairdo was called an updo. So your hearing aids, would show [00:35:00] if you had your hair in this hairstyle. And I remember my mom and I getting in an argument about whether or not I was going to be wearing my hearing aids to prom. I won that argument and I did not wear my hearing aids to prom. And I know that I did not have the greatest time because I couldn't hear but my hair looked really nice. I was just really self-conscious [00:35:42] phase of my life, where I was not comfortable in my own skin with wearing hearing aids and that transferred all the way through high school as an educational audiologist and [00:36:00] professional. Now I'm really shameful and embarrassed to say this, but I, it took me a long time to get to acceptance of who I was with a hearing loss.
[00:36:17] So let's fast forward a few more years. Let's fast forward a couple more years to college. I had no idea what I wanted to go into. When I first applied to college, I knew that I liked people. I knew I wanted to be in a helping profession. So it was actually my clinical audiologist at the time who asked me [00:36:45] Hey, what are you thinking about going into when I was going for just a yearly checkup and I had answered, I wasn't really sure, but I had been accepted to bowling green state [00:37:00] university in Ohio, and I was going in undecided in health professions. And so she went on to say, have you ever thought about audiology as a profession?
[00:37:13] And honestly that thought had never really crossed my mind, but my thoughts started turning just a little bit at that appointment. So to make a long story short, this was a major pivot point in my life and led me into the field of audiology. So in future podcast, I am excited to be able to thread in some of these tidbits that I shared with you today, and my personal experiences into the interviews with professionals and others who have a personal journey with audiology, with hearing challenges with this walks, these types of walks of life.
[00:38:06] So I'm going to just wrap up now. And I am going to circle back over to Rick Warren's quote from the purpose driven life. That character is both developed and revealed by test and all of life is a test. So I know I have had a lot of tests in my life to get to the place where I am and to have found acceptance. To be able to live well with my hearing loss.
[00:38:35] I still today. And as you will see in future podcasts, I go through ups and downs. So if I face new situations, new challenges, this is why I am so excited to bring to you empower ear audiology as a podcast. So as a passionate audiologist with a personal journey, I  cannot wait to share more with all of you and have conversations with experts who are personally and professionally invested in the world of hearing and hearing loss and hearing challenges. So again, subscribe today and I can't wait to bring more podcasts to each and every one of you. If you have a comment or a suggestion or want to hear about something, please reach out to me.
[00:39:33] And I can't wait to hear what your feedback is. Thank you. This has been a production of the 3C digital media network. 
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Episode 0: Intro PreEpisode - Dr. Carrie Spangler

[00:00:00] Hello everyone! Welcome to the introductory podcast for empowEAR Audiology. I am your host, Dr. Carrie Spangler, an educational audiologist with over 20 years of experience, and an individual who has hearing loss and has lived with hearing loss her whole life in this vibrant hearing world. I am so excited to venture on this podcast journey and hope that all of you as listeners will venture on this journey with me becoming empowered.
[00:00:51] We are all a product of the experiences that we have in our life, whether they are positive or negative experiences. One of my greatest strengths and my greatest challenges has been my own personal journey. Living with hearing loss in this hearing world. When you're going through the moment of ups and downs, it's hard to recognize in that moment, what might evolve if you would've told me in my tween and my teen years that I would become an audiologist, I would have never believed you.
[00:01:32] Thankfully those seeds were planted and watered along the way. And I was steered into the field of audiology being empoweared. When I was trying to come up with a name for this podcast, I wanted the name to be bold, inspirational, and say something about the focus is as I started brainstorming different topics. Possible people I might want to interview in the future and I realized how many ways and people make up my life puzzle. it's the different pieces of my own personal family, friend and community experiences better with the pieces of my professional learning, teaching research and technology. That has empowered me over my lifetime. I have some of my best ideas and practices by having conversations with others, sharing stories, sharing knowledge. So why not have conversations with Carrie in the upcoming episodes? I hope that you will hear from leaders in the field of audiology, speech, language pathology, educators of the deaf and hard of hearing otolaryngologist, hearing technology experts, families who have children who are deaf or hard of hearing, and those who walk in the shoes of hearing challenges daily. I also plan on intertwining my own personal hearing loss journey, living with hearing aids, getting a cochlear implant, accommodation that have been used along the way, personal and professional stories, challenges, and barriers that I have overcome.
[00:03:34] It is my goal to bring to you experts who have empoweared me and the hearing loss field, as well as those who have braved the daily hearing challenges and empower others to do the same. I hope all of you will subscribe today and get notifications. I've released episodes every other week and the first episode, I will be taking a deeper dive into my own personal healing journey to unravel different points that led me into the field of cardiology.
[00:04:12] I hope that you would join me. This has been a production of the 3C Digital Media Network. 3C Digital Media Network is a company focusing on connecting world and innovative ideas to enhance individual communication for all who want to be to improve how they think live and express themselves.
[00:04:39] Again, I hope you will join me in my first episode. And I look forward to sharing more stories with all of you. Have a great day. 
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