empowEAR Audiology Podcast

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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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 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 27@gmail.com.
[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 gguignard@agbell.org. And then my personal email is ghguignard@gmail.com. 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, kristina.blaiser@isu.edu
[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 t