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 48: empowEAR Audiology - Rebecca Alexander

Announcer: [00:00:00] Welcome to episode 48 of empowEar Audiology with Dr. Carrie Spangler.

Carrie: [00:00:15] Welcome to the empowEAR  Audiology Podcast, which is part of the 3C Digital Media Network. My name is Dr. Carrie Spangler and I am your host. I am a passionate audiologist with a lifelong journey of living with hearing challenges in this vibrant hearing world. This podcast is for professionals, parents, individuals with hearing challenges and those who want to be inspired. Thank you for listening and I hope you will subscribe, invite others to listen and leave me a positive review. I also wanted to invite all of you to visit and engage in the conversation and the empowEAR Audiology Facebook group. Transcripts for each episode can be found at www dot 3 the number three C Digital Media network dot com under the empowerEAR Podcast tab. Now let's get started with today's episode. Welcome to the empowEAR Audiology podcast. I am really excited today to have a special guest with me and I'm going to read a little about my guest and then I will introduce her. So today I have with me Rebecca Alexander and she is a psychotherapist, an extreme athlete and an activist. She grew up in north Northern California, and she holds two master's degrees from Columbia University. She currently lives in New York City. She is the author of the book Not Fade Away. And she was born with Usher Syndrome Type three. In this book, she shares an incredible story and meditates on what she's lost from the sound of a whisper to seeing a sky full of stars and what she has found with others, a profound sense of gratitude for everything. She has a joy in the simple pleasures of life. So, Rebecca, thank you for being a part of the podcast today.

Rebecca: [00:02:24] Thank you for having me. I'm glad to be here.

Carrie: [00:02:27] Well, I just want to take this opportunity to share the first time I met you. And I don't know, I don't think you really met me, but I saw you at a conference in Massachusetts, and you were the keynote at the Clarke mainstream conference, and you just shared your story. You were so authentic and real, and I was just so grateful to have heard you at that point in time. And I don't know if you remember, but at that conference, there was probably several hundred attendees there, and there was one girl who and her mom, and she raised her hand and she shared with the entire conference that she had recently been diagnosed with Ushers. And I remember you graciously going over to her and you just stood face to face with her and you had this conversation of support and empathy and gave her this big hug. And I thought, wow, I don't think there was a dry eye in the whole audience that day. But at that point I thought, you are truly a person that listens and you make that person, whoever you're with, make them feel like the most important person in the world at the moment. So thank you for who you are, and I'm so excited to have a conversation with you.

Rebecca: [00:03:54] Thank you. Yeah. I mean, that was a really mean. Of course I remember it. I don't think it's something you could forget, but I think sometimes when we're out here and these days with social media and all these different outlets, people lose sight of the fact that we're all human beings, that we have real lives and real stories and real emotions. And so being at that conference, this was before COVID, I believe. So even just being able to be there with someone with a girl and her mom not that long after her diagnosis, I think the emotions were still very raw. And so I really appreciated their standing up and even being willing to share with with me and also the group.

Carrie: [00:04:37] Right. And then I got to reconnect with you just a couple of months ago, and then I officially got to introduce myself to you. And you were a panelist for the American Cochlear Implant Alliance. And that's when I thought, Hey, I'm going to see if she would be willing to be on the podcast today. So thank you for joining.

Rebecca: [00:05:00] Absolutely. I think it was all kind of came in full circle.

Carrie: [00:05:04] It did. It did before COVID and right after COVID, right when we could get back together again.

Rebecca: [00:05:11] Yeah, Yeah.

Carrie: [00:05:13] So I know you have I read your book and I think I laughed, I cried. I could empathize. I had some empathy for parts of the book because I share some of the similar journey as you did. But I thought I would ask you what just prompted you to write this amazing book?

Rebecca: [00:05:35] Yeah. So, you know, it's interesting. There is a definitely a process to it. I mean, some years before I actually wrote it, I was approached by an agent, a literary agent who had seen an article that was written about me for New York magazine, and it was called Going Deaf and Blind in a City of Noise and Lights. And so I think it was a sort of a provocative story about living with the condition that causes progressive deaf blindness and being in a very chaotic, noisy city because I'm in New York City. And so when he first approached me, I thought, what possibly do I have to say that anybody cares to listen to or read about? And what I realized over some time. So I said, I don't really know that that's such a good idea. I think I was 28 when he addressed me and it was about writing a memoir, and I felt I felt like people would think, Really, you're 28 and you think you can write a memoir. But some years later, we there was a story about a spin a thon that we did to raise money for Usher Syndrome research because I was a fitness instructor for many years and he saw the article about me in the New York Times, I think the Style section, and approached me again and said, Now, would you be willing? So I think what was most important about writing this book for me is that in my own process of coming to terms with a condition that causes progressive deaf blindness, I read so many other people's memoirs and people who had very different life experiences than I did, but I always found that there was something in their writing or their experience that resonated with me.

Rebecca: [00:07:19] And to my knowledge, there was nobody that had written a book about living with Usher syndrome in a personal way that wasn't a clinical book. And so it was very cathartic to be able to write this and to sort of speak my truth and to sit down and really put everything into one place. It was definitely a very therapeutic experience, so I am glad that I did it.

Carrie: [00:07:45] Well, I am glad to. And I just wanted to share. When I was reading your book, I made me think of a quote that Brene’ Brown has, and she said, One day you will tell your story of how you overcame what you went through and it will be someone else's survival guide. So when I think when I read your book, I'm like someone else, you know, is going to read that and be able to have that as a survival guide. So all of your courageous remarks and being able to share personally, I think will help others along the way with that. Would you mind sharing a little bit about your childhood events that led up to the diagnosis?

Rebecca: [00:08:27] Yeah. So, you know, everybody has somewhat of a different process of being diagnosed with Usher syndrome. Now, these days, genetic testing can really detect Usher syndrome before there's any physical presentation. But when I was growing up, they didn't yet genetically test for it. And not only that, it was something that for us, we thought that I had some cookie bite of hearing loss because of frequent ear infections. There was just a lot of information and things that were happening that we didn't pick up on. And so it was really kind of like an experiential thing. And by the time I got to the sixth grade, I was having difficulty seeing the blackboard at school and I thought I needed glasses. And my dad took me to the doctor, to an optometrist. His equipment wasn't sophisticated enough to identify what he saw in the back of my eye. So he sent us to an ophthalmologist and we went to several in the Bay Area in California, and they all confirmed that I had retinitis pigmentosa or RP, which is what causes tunnel vision and blindness. And so initially for people who are early in the onset of RP, they experience night blindness and difficulty in certain parts of their vision, whether it's directly below them or in their periphery. And so as a 12 year old, when I was diagnosed with RP, what we thought was just RP at the time, basically I knew that if I went into a movie theater, I had to grab someone's arm.

Rebecca: [00:10:09] I knew that if the dogs were below me that I might trip over them or the dishwasher was open. But at that time I think I heard the word blindness. But for a 12 year old, it's really difficult for you to wrap your head around what that even means. So it wasn't until I was at the University of Michigan, I was a sophomore, and I woke up one morning with really loud ringing tinnitus in my ears and it didn't go away. After a couple of weeks. So I went and was evaluated by an Otolaryngologist and they said, Rebecca, you don't just have RP You have something called Usher syndrome. We've never seen it as it presents itself in you. But because you have both progressive vision and hearing loss, it can't be anything else. So when I was first diagnosed. Usher syndrome. Type three didn't even exist. It hadn't yet even been identified. And it was my own family's bloodwork that we sent to these researchers in Helsinki, Finland. We were the missing link to being able to identify this third type of Usher syndrome. So yeah, I think that a lot of the work and the experiences I had are what have led to a lot more information for families who have been diagnosed with Usher Syndrome Type III. Because when I was growing up, I'm 43 years old, it wasn't that long ago we didn't have any of the information that we do now.

Carrie: [00:11:40] Right. Wow. And then I know you mentioned that you have the hearing loss as well. When did you first notice that you noticed the vision around 12 and then the hearing loss when.

Rebecca: [00:11:55] So, you know, the the the the actual timeline and my memory are a little off. So I'll do my best to try to remember. But my mom is probably still the best one to account for this. But when I was younger, we would watch television and I would always watch out of the side of my left eye. And so we thought it was just kind of a quirk that I would watch TV with my head cocked sideways and nobody really understood why. We just thought it was a funny tic that I had. And what we came to find out over the years is that my left ear was always my stronger ear. And so I created this coping strategy, this compensation, by caulking  my left ear forward so that I would be able to hear the TV better. And it took us some time to figure that out. Again, I had some hearing loss with what an audiologist called a cookie bite of hearing loss when I was younger. And so we didn't know that there was any connection between the two. We thought that that was likely why? So I was given hearing aids. Even when I think I was in middle school or high school, I definitely had a hearing aid that I wore in high school in one ear for my AP history class because my teacher mumbled. But I remember the first time I was given hearing aids, which I never wore. I remember putting them in and hearing the fibers of the rug below me and feeling like I was hearing way too much. Like there are things that I didn't want to hear. And I think that there was also this aspect of feeling very self conscious of not wanting to have to wear hearing aids or to have a hearing loss. So it was this gradual period of time where I think Usher syndrome may be between my parents or something had been maybe mentioned, but never really discussed in full until I went to the otolaryngologist at the University of Michigan and I got that official diagnosis.

Carrie: [00:14:02] And after you got that official diagnosis, when did you feel like you recognized the gravity of what they said to you?

Rebecca: [00:14:15] You know, it's interesting because for so many of us, when you get really what is and remember, I'm a psychotherapist, it is a traumatic diagnosis. And it's not something even at 19 that I could really wrap my head around. So I was told that I was going deaf and blind. What does that even look like? I mean, the only person that I knew who was deaf blind was Helen Keller. And that wasn't my life. That wasn't how I was raised. I was raised in a hearing sighted family. And so it happened to be close to it must have been about 20 maybe, but it happened to be around the time that like the year before I before I turned 21. And so in my mind, I thought after I got this diagnosis, if I could make myself as physically perfect and academically perfect as possible, nobody would know that there was anything wrong with me. So I developed somewhat of a maladaptive coping strategy or developed an eating disorder because here I was given this megabyte of information that I couldn't wrap my head around. It was something that was completely out of my control. Not only do I have this, but we've never seen it as it presents itself in you. So we can't tell you what your progression is going to be like. We can't tell you how this is going to play out. But all I know is that I felt very out of control, whether I was able to recognize it or not. And so I created or came up with some superficial way of feeling like I had some sense of control in my life. And that was by being hyper focused on how much I exercised and how much I ate and how much I studied, the things that I felt were really tangible that I could somehow count or measure in some way.

Carrie: [00:16:02] Wow. And did that have a, I don't know, help you decide what you were going to go into at that point in time? Did you know you wanted to be a psychotherapist or did that evolve?

Rebecca: [00:16:19] Yeah, it definitely evolved when when I was diagnosed with RP. at 12, it was around the same time that my parents had recently separated, separated and divorced, and they sent me to see a therapist. Now I saw the therapist. My brothers didn't and I don't. I think I knew that it was I didn't really know why I was going. I certainly didn't want to talk about anything. And so but I think that that exposure likely was good for me. And so I think there have been all of these this confluence of different experiences that I've had over my life that have really kind of led me in the direction of being a psychotherapist. When you have a condition like this, it requires you to do a lot of self reflection. It requires you to go inward in a lot of ways that you might otherwise not have to, and to try to figure out what your identity is and who you are. So, yeah, there's a lot of different reasons why I became a psychotherapist, but also with a condition like this, it's important for me to be in a quiet room with one or two or just a small group of people to be able to focus and hear and follow the conversation so well. So it seemed like a good decision for me also in terms of my long term career goals.

Carrie: [00:17:42] Yeah. And in your book, you. Talked about there was I want to read directly what you said in the book because it was about kind of your emotions and challenges. And you talk about how I don't feel like the cards I've been dealt are unfair. I don't think life is that complicated. And I know that pity is a trap that will deplete my self-esteem and take away time that I don't have to waste. I choose instead to be grateful, to be happy with what I have today and to be optimistic about tomorrow. It's a conscious choice that one has to take effort to do. I feel like this can be really hard to do just day to day to have a conscious choice to to make the most of what you have. What do you do to help with that choice every day?

Rebecca: [00:18:38] So I think that what happens is that we feel like we've learned that we're supposed to be pursuing happiness and success and fulfillment and we don't make room or allow for ourselves to feel the emotions that come with being human, whatever it is that we're dealing with. When people say things like, I don't know why God did this to me, or they have all these different feelings around, or trying to wrap their head around how they ended up with the diagnosis, whatever, whatever it may be. In my case, it's Usher syndrome. And I just don't think at that complicated. It's a genetic disorder that I have. I think that people have a very unrealistic view on what life is supposed to look like. And it's not their fault. It's what we've learned through our society and culture and maybe our parents. But I think that the way that I'm able to be as optimistic or present as I am is that I allow myself to feel my emotions. I allow myself to cry. I have days where I don't feel that great, where I feel sort of down, where I feel less hopeful. But it's not because something has totally gone wrong and all of a sudden I've lost my way. It's that that's a part of being human. And I think that we have a lot of intolerance for being uncomfortable or feeling sad or even feeling some feel some depression. And we actually have to allow ourselves to sit with it, to develop tolerance for it, and to try to understand why we may be feeling the way that we're feeling instead of trying to figure out how to get ourselves out of it, because it's only in trying to get yourself out of it that you perpetuate that cycle of feeling unfulfilled and unhappy.

Carrie: [00:20:25] Yeah, I think you're right. A lot of times people get uncomfortable and then as humans, we just want we don't want to bother someone else with how we feel. And like you said, it probably stops you from accepting some of the things about yourself too, if you don't feel them.

Rebecca: [00:20:43] Yeah. Yeah.

Carrie: [00:20:46] Well, actually. Oh, go ahead.

Rebecca: [00:20:49] Well, I also think that sometimes when we feel uncomfortable because we live in this time and place now where we have so many outlets to not have to be present, you can go on any number of different platforms of social media and distract yourself. And what we have a tendency to do when we feel uncomfortable is maybe we shop or we look at what everybody else is doing that we're not, or maybe we drink or we use substances or we binge on activity. We do anything we can do not have to sit with ourselves and feel. And that, I think, is something that's difficult to develop when you have all of these very easy distractions. So yeah, that's a little bit more of my 2 cents on that issue.

Carrie: [00:21:34] Yeah, that's a good viewpoint though, and I like what you said about making that conscious choice and it does take a lot of effort every single day to make that choice to. Another thing that you said, and it was about you coming home from cane training and you sat in your book, you put fact disabilities require help fact I hate help and that the disabilities weren't going to change so I was going to have to. What does that mean to you?

Rebecca: [00:22:09] Yeah. So, you know, I think one of the hardest things for anybody, whether you have a disability or not, is asking for help. And it's not just asking for help. It's recognizing that you need help. And I think that we are raised to develop a sense of independence, to feel like we can do it on our own. We don't need anybody that we raise our children to become as independent as possible. And yet the most productive and successful communities are communities that rely on interdependence, meaning that we rely on each other to make sure that people are able to get from one place to the next. So we're able to be aware of the things that are going on in our community, that we help each other to be able to live productive lives. And so I think when you have a disability, you feel like a burden. Oftentimes, many people with disabilities, I think this feeling of not wanting to be a burden is pervasive in their lives, and it's important for people with disabilities to also understand that you have a very active and meaningful role in your family and friends lives too, and you need to recognize that. And the other thing is, is that developing the comfort and ability to ask for help is not a way of saying, I can't do it. It's a way of saying, I want to do this, but I need help in achieving this goal. And I think that what we forget is that when you ask someone for help, you're not saying, Will you do this for me? You're engendering in them this feeling for them that they matter and that they're needed. And as humans, I think there is nothing. We want to know more in this life than that we matter and that we're needed. And it's important to think about what you elicit in someone else when you do ask them to help you.

Carrie: [00:24:12] That's great and I do agree. I think people they want to help others. So if you can get past and this is just my perception, too, sometimes it's hard for me to just say, hey, you know, I have I have a hearing loss. So you kind of have that part that you have to get over on your own end of just even sharing and disclosing that information in order to get the help that you need.

Rebecca: [00:24:40] Well, and the interesting thing is, as a psychotherapist, and I think you can appreciate this, is that I sometimes have people come into my office. We're talking about things that they have a lot of shame around or a lot of really deep seated feelings about. And so they speak more softly or they may mumble. They don't want to hear themselves even say these things out loud. And now during the summer, when the air conditioning is on, it's a whole other ballgame of like, you know, I need you not only to speak up, but. So this is it's hard when someone is in this very vulnerable position as someone with a hearing loss, having to say, I know how difficult this is for you to share and I really appreciate your vulnerability. But in order for me to be able to help you, I also need you to speak up. And and so I often will have to say that to people. And more than anything, I don't want them to have to change their tone because I understand how vulnerable they are being in that moment. But if I'm going to be able to help them and really hear them and support them, I can't do that if I didn't hear what they just said.

Carrie: [00:25:51] Which is a great segway into my next question I wanted to ask was in 2013, you got a message that you might qualify for a cochlear implant. What can you share a little bit about that cochlear implant journey?

Rebecca: [00:26:09] Yeah, so I didn't get a message that I might qualify. I got a message that I did qualify. And the reason why I make that distinction is because, again, there was no real trajectory for me of knowing what my hearing loss would be like. And I was very fortunate to be raised with relatively normal hearing so that I could develop speech. But we didn't know. I never thought that I would ever get to a point where my hearing loss would be significant enough that I would need to get a cochlear implant. I went through so many hearing aids, I can't even begin to remember all the different ones that I had. And I got to a point where I had different hearing aids for different environments. And so I think you know very well what that experience is like. But so when I found out that I was a candidate, I'd been tested before, and a lot of my decision to get tested was mostly to have my friends get off my back of like, see, I'm not a candidate. And when I found out I was it turns out that the threshold had been lowered in terms of what insurance would cover. But my right ear, which was always my non-dominant ear, it could pick up environmental sounds, but it could never really discriminate. It was more decorative. I could wear earrings on my right ear, but I never really used it. I never used it for the phone. Nobody ever sat or walked on my right side. So that ear became a candidate. I think I had, let's say, with a hearing aid. I think I had 28% discrimination.

Rebecca: [00:27:45] And without a hearing aid in the sound booth, I had 26% discrimination. So the hearing aid was doing very little to help me. And so a lot of people find out they're a candidate and they mull over it and they think about it and they worry about it. And I wanted to be proactive. I really was able to recognize that my hearing loss and having a microphone that I would use at times in noisy environments was exhausting. And I don't think that we realize how exhausting it is. Sometimes when you live with a hearing loss and you don't do the things that are necessary to help improve the quality of your life. And so it was a huge fear of mine, and I allowed myself to mourn and cry before I had that surgery because it was never a place I ever imagined I would be. But I will tell you that after having the surgery and a lot of listening therapy later, my my life improved dramatically. And it was the best decision I could have made. And so many people wait, I think because they're waiting for stem cell research to happen, for your hair growth, to be able to regenerate hearing. And that's a long ways away. I'm encouraged by all of the research that's out there. But in the meantime, your life is really being affected by not being able to hear. So for me, it was the best decision I could have made. I think about a year later in a sound booth, I was testing between sentences and quiet or noise and words somewhere between like 92 and 98%.

Carrie: [00:29:26] Right?

Rebecca: [00:29:26] And it was dramatic. It was life changing.

Carrie: [00:29:29] I had to go from 28% to 90% in sentences is a big jump. Yeah. Do you remember what it was like when you first got activated?

Rebecca: [00:29:44] Yeah, I have the videos too, but I do. I mean, I knew that it was going to be weird. I'd been prepared. People had told me that it's a process, a journey, and all the things that people tell you, but until you actually experience it firsthand, you can't possibly imagine what it's going to sound like. And I just remember being turned on and I thought that like the tinnitus in my head was like speaking. When someone was speaking, it sounded like this very high pitch. It was confusing. And so but it did it took time. I had 16 electrodes, you know, I got Advanced Bionics and going through each of those electrodes, at first you get turned on slowly but surely. But it was a very bizarre experience. And my first instinct was like, Oh my God, what the heck have I done? And I think someone told me that maybe I would feel that way. But again, until you actually experience it. But from the day that I was activated to the next day, even when I went for my second mapping, I noticed that there was a shift and even improvement how quickly my brain was adapting to this new way of hearing.

Carrie: [00:31:02] I would say the same thing. Right. When I got activated, I was like, What the heck did I just do? I felt like I was hearing beeps and chirps and whistles, and that was about it. And I thought my my hearing aid was like squealing or something, But it was actually the beeps that were I was hearing with the cochlear implant.

Rebecca: [00:31:23] Right. And that was my experience too, because, you know, we hear all the higher frequencies first. And I remember my best friend was there in the room and the audiologist and their voices sounded exactly the same, like there was no difference between her voice and his voice. And the only way I can describe it and it still doesn't do it justice, is I remember it sounded like this.

Rebecca: [00:31:46] Hi, how are you? What are you going to do today?

Rebecca: [00:31:50] It sounded like a word processor. It sounded very high pitched. It was just it was very overwhelming.

Carrie: [00:31:57] And so then you wore both for a while, your hearing aid and a cochlear implant. And how did you feel? Were you able to integrate both the signals together?

Rebecca: [00:32:09] Yeah, I mean, the hearing aid I wore was a different company then, so Advanced Bionics know they're under Sunnova, which is the same umbrella as Phonak. And I had a Phonak hearing aid, but I'd become so accustomed to using this other hearing aid that I think I was able as much as I possibly could, able to integrate the two. But all of the sudden I started relying on my right ear that I'd never done. I think I was 33 or 34 when I'd been implanted in my first ear on my right side, and everyone had always walked on my left side, sat on my left side. They were used to having to be on my left. And so there was this whole, like migration of everyone having to move to my right side and having to switch that up. And so now it's amazing that I ever even forget or lose sight of the fact that this has not always been the case, that my right ear really was not very usable until I was well into my thirties. And so it's pretty remarkable. Yeah.

Carrie: [00:33:18] That your brain can take that information that hasn't really had much benefit and make sense of it. Yeah. And then you ended up getting a second implant too. How did that happen?

Rebecca: [00:33:30] So my left ear was not a candidate and I tested it every year when I went back for my mapping and my annual mapping and testing, and by 2017, my left ear had become a candidate. And it was something that I knew was going to happen at some point. I tried using my left ear with just a hearing aid and not my cochlear implant. I had friends speak to me and with me reading their lips and also covering their mouths. I really wanted to get a sense of where I thought my hearing was, and it was something I think that there was something that felt more final about getting my second cochlear implant because it was like that last bit of hearing, natural hearing that I had. But again, once I got my second cochlear implant, after three months sentences and quiet, I was at 100%. I mean, I didn't wait to get my ear implanted. I know that now the implants or MRI compatible, my implants are not. But if I'd waited for an MRI compatible cochlear implant, I would have not missed out on some very crucial years of my life, both personally and professionally. So I think that it was the best decision I could have made and to have more of that stereo surround sound. And remember, when you're losing your vision, you do need everything else you can have to help you gather information from your environment. So I didn't write.

Carrie: [00:34:59] Well, I guess it's a blessing. And the fact that there's so much research and advancements in hearing technology in order to give more hearing that for individuals that need it. So and then assistive technology and everything else to.

Rebecca: [00:35:19] Yep. Yeah.

Carrie: [00:35:21] And you also mentioned in your book, too, that as a psychotherapist, you have seen some individuals who are deaf and hard of hearing. Do you think those individuals seek you out because of your own personal journey too or how how did they find you?

Rebecca: [00:35:40] Yes, I do think that for any of us, one of the things that's most difficult for people living with Usher syndrome or living with a hearing loss or whatever it is that we face, it's the wanting to go and see a therapist where you don't have to explain all of the nuances of living with hearing loss or vision loss or cancer, whatever your circumstances might be, to be able to have a therapist who either specializes in whatever it is that you're dealing with or who has firsthand personal experience, can be relieving. It can be very meaningful because there are so many things that you don't have to explain. They get it in a way that somebody else wouldn't. And I think that my own frustration when you're a therapist, it means that you yourself ethically have to be in therapy. I've been in therapy for a gazillion years. It's been one of the best things I could have done and have done for myself because it allows me to practice self care and be self reflective and hold myself accountable instead of projecting my feelings onto everybody else. But it's also been frustrating because there have been many times where I feel like I'm paying someone to listen to me, educate them about living with hearing loss or living with vision loss. And so when you can bypass that step by seeing someone who has that specialty, that expertise or the personal experience, there's nothing like it. It almost feels like a sigh of relief because you can get to the real heart of the issues that you're dealing with and not have to deal with all of the psychoeducation around living with a hearing loss or vision loss.

Carrie: [00:37:28] Yeah. And for individuals who don't have hearing or vision loss, it's really hard to put yourself in those shoes.

Rebecca: [00:37:36] Yeah, Yeah. But there are also people who are fully sighted and fully hearing who seek me out because they see that I'm contending with something or living with something that they feel is something they couldn't ever imagine living with, and that maybe there's more information or insight or self awareness that I have just from dealing with something like this that they could learn from. So it's interesting.

Carrie: [00:38:04] That it is. And they're like a story about a significant challenge that you've had. And how did you overcome that? You have so much grit and determination and your book and what you share, but there's something that really sticks out in your mind.

Rebecca: [00:38:23] So it's interesting because we talk so much about overcoming our fears or overcoming certain obstacles. And I really try to bring it back to encouraging people to live with obstacles, to live with adversity instead of always trying to overcome it. There are definitely goals we need to set to overcome our fears, but the fears may never go away. It may the first six or seven, eight times I use my cane, I cried. And again, as I've said, living in New York City, using a blind person's cane and walking down the street doesn't draw that much attention. It doesn't look that unusual, which is fortunate. But there's the practice of needing to be uncomfortable, of needing to be afraid and still do whatever it is that you feel afraid of on even a daily basis or consistently so that it's not just that you're overcoming that fear, you're able to live with it. Because I think that we all feel like we have to set these goals to overcome our challenges and be able to move on to the next, bigger and better thing. And yet there are a lot of things that we may not be able to overcome that we may have to simply live with. So I think for me, the biggest obstacle that I still face is dealing with the inaccessibility of so many different types of technology and programs of having to constantly educate people about the importance of making information accessible and that it's not a privilege. It's a right for people who have hearing loss or vision loss to be able to have access to the same information that other people who are not hearing impaired or hard of hearing or low vision or blind that they don't even have to think about. So I'd say that that is something stands out to me. Climbing a mountain, swimming from Alcatraz to shore. Those are things that I can totally do, and I have the spirit to really challenge myself. But dealing with these things on a day to day basis is the most exhausting. That's what I think is my biggest obstacle that I challenge myself with every day.

Carrie: [00:40:46] Yeah, I love your comment about living with the adversity and instead of overcoming that and yeah, you also have some very humorous stories too. Do you feel like humor plays a positive role in living with adversity?

Rebecca: [00:41:05] So humor, I think, is at the core of our existence. When you live through so many different either traumatic events or heavy circumstances, it is so important for us to have humility and also to have humor because so many of the things that we face in our lives we don't have control over, and we try so hard to have some semblance of control of certainty. And yet life is very unpredictable and very uncertain no matter how hard we try. And if I were to just allow myself to fall into this hole of going going deaf and blind and how heavy this is, there's tremendous humor that comes with it. There's tremendous humor that comes with dealing with a condition that is so uncomfortable and and yet it's also hysterical. And I've shared many stories, but one of which that I can think of off the top of my head is when I was presenting for the Alexander Graham Bell Foundation, they were giving an award to someone and I was presenting the award when they brought me backstage and it was really loud and really dark and they said, You hold here, we'll come get you when it's your time to come out and we'll we'll guide you onto the stage.

Rebecca: [00:42:31] So it's completely dark and I feel that there's someone next to me. And so I didn't want to be rude. I wanted to engage in conversation I couldn't really hear because of how noisy it was. But I think I was just making small talk. Someone came to pick me up and said, okay, it's time to go on stage. And I put my hand on that person's arm and said, It was nice chatting with you. But when I put my hand on that person's arm, I realized that I had been speaking to a statue the entire time. And, you know, if I were to allow that to really bring me down, I can't believe I was talking to the statue like, it's hilarious, right? I was so caught up in the fact that I didn't want to be rude or offensive to someone that I just started talking to who I what I thought was a person. But it was nobody. It was just a statue. And so there's so many things that happen that are. Or humorous and you have to really allow yourself to laugh.

Carrie: [00:43:27] That is a good one. Talking to the statue, they probably said all nice things back to you.

Rebecca: [00:43:32] Right. It was a riveting conversation.

Carrie: [00:43:36] I love it. Yes. I find humor to be something that's important for me, too, because I do a lot of things very similar to that, where I mishear things or, you know, the things and I say something and I and I'm like, I don't think that was the right thing to say back.

Rebecca: [00:43:56] Right, Right.

Carrie: [00:43:58] But you have to laugh or it will eat you up, right?

Rebecca: [00:44:03] Yeah, definitely.

Carrie: [00:44:06] And the other there's one other kind of question that I thought I would ask would be. I think as humans, we naturally want to be in community with other people and it's just kind of part of who we are. And in your book, you share a lot about different significant people in your life, your family, your friends, coworkers. Have you. How has that been with you? How have people been able to influence and support you?

Rebecca: [00:44:38] It's so important for us to have a community, even if it's a small group of people that you rely on to just laugh with or to cry with or to feel like you can really speak openly with. And so for me, I really, really treasure my friendships, my relationships, because these are the people who know me better than anyone. I have people in my life who have known me way before my diagnosis, and I have people who I've only more recently met who have only known me with my disability. And so it runs the gamut in terms of the types of relationships that I've curated. But I think part of what's so important about us having community and having people in our lives is that it helps us maintain perspective. And it's also important for us to remember that what we go through may be very acute and specific to our lives, but everybody has something. And there are plenty of fully able bodied, fully sighted, fully hearing people that I work with in my practice. And you could not pay me $1,000,000 to trade places with them for various reasons. Maybe it's because they don't have a strong support system. But you need to be able to foster that yourself, to develop a support system for yourself and to support other people as well. The people who are in your support system that again, that interdependence is so, so crucial to our existence because. We all want to know that we're not alone. And even if somebody can't relate to what you're going through, they can be there with you. And that, I think, is far more important and it makes it more enjoyable and more interesting to have people to be there along the way with you.

Carrie: [00:46:29] Yeah, definitely. Having that village around you is important.

Rebecca: [00:46:34] Huge. Yeah.

Carrie: [00:46:36] Many of the listeners for this podcast are hearing care professionals, their parents who have children, who may be deaf or hard of hearing, or they're adults who are deaf and hard of hearing, and many may be dealing with a new diagnosis or might not have come to acceptance or I don't want to say acceptance, but you know what I mean. Of their hearing challenges. Do you have any takeaways that you can share with the audience about that kind of coming to acceptance or dealing with whatever adversity you have?

Rebecca: [00:47:14] Yeah. you Know, I think that particularly for parents and caregivers of kids or loved ones who have a hearing loss. Oftentimes we do take on this caregiver role, and it's so important for caregivers to recognize that they have needs, too, and that they need to take care of themselves. People who are caregivers by nature feel a sense of fulfillment by helping other people. But when you do that and you don't take time for yourself or recognize your own needs, we have a tendency to develop resentment towards the people we help, and the resentment that we feel is actually not towards the people we are helping or loved ones is actually towards ourselves for not being able to have either the strength or the wherewithal to say, I need to do something for myself or I need to take care of myself. It sort of becomes self-fulfilling. So I think that for parents and caregivers or loved ones, you need to make sure that you're really addressing your needs to that someone, the person with the hearing loss or whatever the situation is, becomes the identified patient. And that is where codependency lies. And so you really need to take care of yourself.

Rebecca: [00:48:28] For clinicians, I think sometimes you work day in and day out on the same issues of dealing with hearing loss, of doing the hearing tests, of fitting people with hearing aids, and having to deal with all of the growing pains of adapting to your new hearing device and everything. And we lose some of our humanity, understandably, because either were exposed to it all the time and it's something that becomes second nature to us. But you have to remember that when a person comes into your office, being able to hear is very much intrinsically linked with our competence and our ability to feel whole. And so we have to remember that people come into you and they actually are very vulnerable. They may be a difficult patient, they may they may cry, they may have any number of different responses to hearing test or being fine tuned, and you have to try to be present for them and understand that this is a very emotional experience. It's not just a clinical experience of of being tuned up. So I think the humanity and maintaining your ability to have compassion is difficult, but so important.

Carrie: [00:49:46] And there's a great take aways for families and also clinicians who are dealing with or, you know, experiencing this professionally on a daily basis, too. Is there anything, Rebecca, that I didn't ask you that you wanted to share today?

Rebecca: [00:50:03] Well, I would love to hear from your audience. I mean, they can certainly reach out to me on Instagram or Facebook or TikTok or Twitter at reb_alexander I'm sure you will include that.

Carrie: [00:50:19] I will. I will put that in the show notes for you and for us. And they can get connected with you that way, too.

Rebecca: [00:50:26] Yeah, because I think that there's a lot of questions that may come up for people and I'm happy to answer them. But I think that what's most important for people to know is that they're not alone. You know, we all go through this and it can feel very isolating and lonely, particularly when you're dealing with a hearing loss. And it's so important for people to know that they're not alone, that as difficult as it may be, there are other people who really understand and go through what you go through. And it's not to diminish your experience, but it's to let you know that there are a lot of people out there that you can relate to and develop relationships with who will really be able to see you and understand you. And so I think that's important.

Carrie: [00:51:07] I do, too. And your profession as a psychotherapist and you talked about getting help and when needed to is probably another great point for people.

Rebecca: [00:51:18] Yeah, I think that there's a lot of stigma around seeing a therapist or even potentially taking a patient if you need to. And I think it's important for us to try to break down some of that stigma because the stigma that people feel is actually only inhibiting them. And it's it's important, I think, for people to really recognize not what everybody else thinks or what they think other people will think, but what they need, what is in their own best interest in order to take best care of themselves.

Carrie: [00:51:53] Yeah. Well, Rebecca, I want to thank you so much for being open and willing to be a storyteller of your own life, because I am grateful that I had the opportunity to meet you and connect with you a couple of different times, and that we have a common connection of being deaf and actually going on the cochlear implant journey later on in life as well. But you are definitely an inspiration to me and I know you will be an inspiration to all of our listeners as well. I will link up your social media site as well as the book Not Fade Away, because I feel that you share so much in that book that listeners would really appreciate reading it. So thank you again for being a part of today's podcast.

Rebecca: [00:52:39] Thank you for inviting me. I'm glad to be a part of it.

Carrie: [00:52:42] All right, listeners know if you enjoyed the podcast. Please share this with others. I hope that you engage with me on the Facebook page. Transcripts for this episode are also available on the 3C Digital Media Network website, and thanks for spending time listening today.

Announcer: [00:53:00] This has been a production of the 3C Digital Media Network.

Episode 47: empowEAR Audiology - Jodi Cutler

Announcer: [00:00:00] Welcome to episode 47 of Empower Audiology with Dr. Carrie Spangler.

Carrie: [00:00:16] Hello, listeners. This podcast is a little different from my other podcasts as it is a remix of the Facebook Live event with Jodi Cutler. This conversation was too good to not put out to all of you. For those of you who do not know Jodi, Jodi is amazing. She is a mother, public speaker, writer and now movie producer. She has an adult son who has a cochlear implant and has been able to use her own personal parenting journey to help many others. In this podcast episode, you are going to hear about the exciting news of Rally  Caps book turned to movie. Jodi takes us behind the scenes as Rally Caps was selected for the 31st Heartland International Film Festival in Indiana from October 10th through the 16th, 2022. For me, as an individual who has a cochlear implant and wears a hearing aid, just seeing the movie poster with Lucas, one of the main characters wearing a cochlear implant gives me a sense of excitement and belonging. Representation does matter. Take a listen to this amazing conversation with Jodi Cutler. I think we are going live. Welcome, Jodi Cutler. Thank you for joining me this morning. At least morning for me. And I have my morning coffee with the EmpowEAR Audiology Facebook Live group and this is part of 3C Digital Media Network. I am so excited to have you this morning and afternoon for you.

Jodi: [00:02:05] I'm so excited to see you because I love you and I wanted to talk to you.

Carrie: [00:02:10] I know it's been a while since you were on your baseball spree going across the country to different baseball field, but now you have some even more exciting news, don't you?

Jodi: [00:02:24] I do. I have a lot of exciting news. When I was.

Carrie: [00:02:28] When I was excited to find out more. What? So what? What do you have to share with me this morning?

Jodi: [00:02:37] Okay. First of all, for people who haven't been following the situation, I met Carrie during. Well, first I met Carrie during a zoom for the American Cochlear Implant Alliance. Tuesday talk. And I researched Carrie because she was the person who was a moderator and I, like, fell in love with her and everything that she does. So I stalked I stalker her and. And when we had to go to do the Cleveland Guardians Rally Caps Hearing Loss Awareness Day event, I reached out to her and we were able to collaborate and work together. And she's like, amazing. So I have real love for Carrie, which is why I'm excited to talk to you about Rally Caps, because back when we were in post-production and, you know, we had no idea how we were, how it was going to move forward and how it was going to play out. We were accepted to the Heartland International Film Festival in Indianapolis, Indiana, and it's like, go time, big time. So.

Carrie: [00:03:44] Well, so yeah, so that is so exciting. And just to kind of back up a little bit, Rally Caps is kind of a fusion from a book that you and your dad wrote. Correct?

Jodi: [00:03:55] Yes. My my dad and I worked together to write this book. I have been living in Tuscany for the past 25 years. So I was writing parts of the book in Tuscany and he was editing, modifying, adding parts of the book in West Palm Beach. And there was an exchange. And then finally we were able to finish the book and complete it. My dad had a story to tell about anxiety and getting hit by a baseball bat when he was young. And I had a story to tell because I wanted my son to see himself represented in literature as a child with a cochlear implant who uses listening and spoken language. Because until then I had not found that representation for my son. And I'm obsessed with reading.

Carrie: [00:04:46] Well, and I think it's so important for individuals to be able to see themselves and be represented in literature. And now you have a movie to share as well. So how did you decide that this book needed to become a movie?

Jodi: [00:05:04] My dad has a very determined personality, and from the moment the book was published, he continuously said The book needs to become a movie, and he made it his life ambition and goal to make Rally Caps the book into Rally Caps, the movie. He found Lee Cipolla, who is our multitalented, unbelievable work ethic, phenomenal director who took our book and transformed it into a screenplay, that is. Okay. It's better than the book. I know that you're not supposed to say that, but I love what he did with the screenplay. He's so talented. And. And I was so grateful because he consistently collaborated with my dad and me to. To make sure that we were on board with everything that was being done. I was totally against the idea of making it a movie, because when my dad came to me and said Lee was ready to go, I was like, Dad, it's March. I'm in Italy 2020. We're having a serious lockdown. Covid is happening. Nobody's making a movie right now. And he said, Yeah, we're going to make the movie. And I'm like, okay, Dad. And then and then, you know, your past and time went on and we kept making the screenplay even better and stronger. And then we had I mean, because I was involved, even though I was a little hesitant, my dad will never let me forget that fact.

Jodi: [00:06:35] And that's okay because he's right. I can admit what I'm wrong. And and so we had a table read, and at the table read I met Carson Minniear, who's our superstar. He's so cute and just asked amazing questions and was really talented. I started to see the other actors that were going to be involved in the movie. James Lowe, who plays Coach Ball game. I mean, he plays Coach Ballgame. He is Coach Ballgame. He's phenomenal. Like, I mean, you just melt when you see him and then that's how it started. So we were a small indie film, and then Amy Williams, our producer, was like Lee. I think it's really important to have Judd Hirsch and Amy Smart in this movie because I really believe that they would be exceptional. And so Lee was like, Yeah, that sounds really good. So Amy Williams made that happen, and suddenly our small indie film became. The bigger and more important and the fact that Judd Hirsch and Amy Smart are in the movie, and aside from the fact that they're exceptional professionals and unbelievable actors, their names are going to bring even more awareness to the representation that we are trying to make more visible.

Carrie: [00:08:03] Mm hmm. And you have a couple of characters in the movie who themselves live their life as an individual with cochlear implants or who is deaf and hard of hearing. Can you share a little bit more about those characters?

Jodi: [00:08:19] I will say this. When I found out about my son's profound hearing loss bilaterally sensorineural in Italy, in Italian, and I didn't speak the language. I was a little lost. I mean, I was determined. But but to help him learn to listen and speak. But I was a little lost because I couldn't talk to anybody, really. And in Italy, I didn't have a lot of resources. So the first time I went back to the United States, I went to a bookshop and I was looking through books on hearing loss. And I found Choices in Deafness and in choices and choices in deafness. There was the story of Curtis Pride, and when I read his story, I sat down next to the bookshelf and started crying. So for me, Curtis Pride has always had an important place in my personal journey. At another point in time, my father, who lives in West Palm Beach, near where Curtis lives, heard about a wiffle ball tournament that Curtis was having. And he went to participate because, you know, my mom and my dad were on the other side of the world. And it's you feel helpless to do anything because, you know, so he wanted to to feel like he could contribute and do something.

Jodi: [00:09:39] He went to umpire at this tournament and they became friends. So years later, when we were starting to cast the characters for the my son, who was going to be my my son's character, the child with a cochlear implant. My dad reached out to Curtis, and Curtis has two children, Colton Pride and Noel Pride. Colton, who plays Lucas, has single sided deafness and Noelle has bilateral sensorineural profound hearing loss like my son. So I had always wanted to to cast a deaf character, to play the role of Lucas and. Both me and my dad and everyone was so excited because we were able to have another character with hearing loss with cochlear implants in the film. So we have a boy and a girl and. Additionally, Curtis Pride himself has a cameo and delivers an important message. And for those of you who see the movie, wait till the credits at the end. Don't be getting up and leaving because there's another part that you're going to want to see when the credits roll. And I just the fact that it went full circle with Curtis Pride and and how I live that moment personally was just another Rally Cap's miracle that occurred.

Carrie: [00:11:02] Yeah, that is amazing. That, like, you had that incident in the bookstore where you read about him and then come come full circle and both of his kids that in the Rally Caps movie and they're just so good They're so good.

Jodi: [00:11:19] I know such beautiful people. I mean, they're so sensitive and intelligent and they're just and fun. They're a lot of fun. We had a lot of fun making Rally Caps at camps Gattaca in New York. I'm not going to lie. Like.

Carrie: [00:11:33] Amazing And yeah, so I know. So you got the movie produced and how did Ralley Caps get picked for the The Heartland Movie Festival?

Jodi: [00:11:49] I guess I I'm like Jodie, who raised a child with hearing loss and was a teacher and has helped people in Italy who have their own journeys in deafness. I have had no experience in my entire life with filmmaking, so becoming a producer has been a step by step learning experience. One of our producers, William Garcia, who was working on budget and a lot of the elements, he'd be like shooting acronyms and stuff. And I'd be like, Okay, I need you to explain that. I didn't understand anything. And then Catherine Borda, who is like taking care of all of the details and special effects and color and sound and score that I have no clue about. It's been a learning process. So in terms of the festival, all I know is that we submitted the film and they said, You've been accepted to the official selection. And I'm like, Woo hoo! And Lee and Kathy are like, Oh my God, that's amazing. But they had like. It's 25 days to finish. Finish the movie because we were in post-production.

Carrie: [00:12:58] That is awesome. 

Carrie: [00:13:26] So if people want to watch this movie, how are they able to stream it or see it?

Jodi: [00:13:35] Well, we are premiering in Indianapolis on October 8th, and we are premiering in a theater called the Toby Newfields at 5:15 p.m.. If you live near Indianapolis, we're going to have a really good time at our premiere. Like everybody's coming except for Amy and Judd. They are not coming to the premiere, but all the kids are going to be there. We are planning a lot. We're trying to get involved with all of the associations in Indianapolis who I've learned that most of the people responsible within the associations are parents themselves. So there's this huge cohesive unit in Indianapolis that has like been unbelievable for me to work with them. So the Toby you can order ticket for the the premiere the next day. The ninth is another screening in person and that is at the Glendale Glendale 12 at 7 p.m.. You can order both of those tickets through Heartland International Film Festival. And we also have the opportunity to watch the movie virtually. There is a link to be able to reserve, a link to be able to watch it virtually. Those are limited. There is only a certain amount of virtual links. So anybody watching if you want to see the movie. Right now. As far as I know, this is the only chance.

Jodi: [00:15:06] Obviously, our hope is that a streamer distributor will pick the movie up after this festival. But for now, we're taking it step by step. Everyone has been so incredibly supportive. I just if I can, I'd love to give a shout out to Phonak and Advanced Bionics who have partnered with us. Their main goal in partnering with this movie has been to make as many people mainstream aware of. Cochlear implants, what they do for our kids, hearing aids, how hearing technology and devices like the Roger ON. Allow for more accessibility and more inclusion in mainstream lifestyle. And through the movie, we are trying to make sure that all hearing technology is very visible because what we all want to do is smash negative stigma regarding hearing loss. We're tired of our kids having to explain themselves constantly. We want people to look at a hearing aid and a cochlear implant and be like, Oh, they're just like Lucas. Or Oh, they're just like Nicki, So they don't need to go into this explanation about their hearing loss before people are able to know who they are as individuals. And this is what our real goal is for Rally Caps.

Carrie: [00:16:26] And I love the poster too. With you can see Lucas and his cochlear implant and a vibrant blue color. And that is just so amazing to have that representation just even visually. But I can't wait to see the movie as well to have that representation. Thank you. Is there anything else I should ask you or that you want to talk about with the movie as we're live this morning?

Jodi: [00:16:52] I just. I could talk for hours and hours. It's like I just wanted to I kind of want to add something that that I had this conversation a couple of days ago because I'm moving to the United States. A lot of people who are from my forum are coming to visit me to say goodbye, who I've met virtually. And because of COVID, we haven't been able to have our usual Congresses. So everybody can meet in person and people are coming to visit One of the people who came to visit is a woman who had profound was born with profound hearing loss, wore hearing aids for her entire life until she was 50. When she was 50, she decided to get a cochlear implant. And what was really interesting is that she was because a lot of you with the forum, you help them and then they pay it forward and help other people who are nervous about cochlear implants because we're always scared of the unknown. So the more known we make it, the easier it is to make a decision. She was like, Jodi, I have people come to me who are about to get married and they're like, Should I have a cochlear implant before I get married or after I get married? And she goes, Jodi The cochlear implant changed my life. It helped the real me come out of my shell because I, I didn't feel isolated. I felt more secure that I could hear things around me and. I became a new Maria Luisa. Like now I drive places. I go on trips alone. I, I started working. So she goes, make sure you get that cochlear implant before you get married, because the dynamic of your relationship could change when you go from someone who is a little bit more dependent to a person who becomes totally independent and starts making decisions on her own. And I just I thought that that that blew me away. I just thought that I wanted to share that because it happened a couple of days ago and it's still going around in my head.

Carrie: [00:19:00] But. But because of all of your sharing and willingness to share about your own journey and then the Rally Caps and now the movie, it really opens up opportunities for people to have a conversation and like you said, smash stigma and make it something that's mainstream and out there and that these kids are amazing kids no matter what. They just have amazing technology on their heads that helps them listen and talk. And that is kind of, I think, the message that is really positive for Rally. Caps.

Jodi: [00:19:36] And another thing that I've loved since we started sharing is that parents are contacting me and they're asking me how they can have virtual watch parties so that they can get as many people involved as possible. While we have this window of opportunity to see the movie, like one of our actors’ principals where he goes to school, wants to have a huge watch party for the whole school. So, I mean, literally people are taking advantage of this opportunity to try to spread as much awareness as possible in this moment that we have. And my hope is that people love the movie so that it just explodes from here because there's there are so many ways that we can reach an incredible amount of people with this information to spread awareness.

Carrie: [00:20:26] And so I know we have this window of opportunity to watch it right now, But what is your hope after the film festival is over? 

Jodi: [00:20:38]When the film Festival is over, I'm going to my new place in West Palm Beach, getting my kids situated and set up. And my hope is that within that period of 15 days, everything explodes and we have an opportunity to to discuss with a distributor, talk to a streamer, to get it to as many people as possible, as quickly as possible and as internationally as possible. Because as you well know, we are a global community. In the past I know the deaf community has been strong, has been visible in the media, has had an incredible voice. What I have realized, and I can attest to is that our community, which is just another shade of hearing loss and deaf, including the listening and spoken language aspects or even bilingual communication. And, you know, there are parents who make choices in deafness to to use sign language and and and to use spoken language. But we have a powerful community that is dying to be represented, and that is not just in the United States, that is internationally. And I'm looking forward to the entire experience.

Carrie: [00:21:57] Well, Jodi, I just want to say you said you loved me at the beginning. And I just want to say that I love you just as much as I love you. I just love everything you do. And you have such an open heart and willing to share. And you are just. And by like, that's all I can say is you are on fire and you are making such a difference.

Jodi: [00:22:20] I need to say one thing to the people who watch you like Carrie is amazing. And there were moments during the Rally, during the Rally Caps, hearing Loss Awareness Day events. And because we did everything in such a short amount of time and I don't know, she must have sensed that I was losing my mind. She would send me these like these affirmations, daily affirmations that were they were so, so kind. And I just there have been so many people who have been present and I so appreciated you just being kind, like, for no reason. And that's what's been happening with Rally Caps. We have been experiencing kindness, generosity, love, miracles. And I just hope that that continues.

Carrie: [00:23:06] And I'm sure it will. So thanks again for joining me and live this morning. I'm hoping that we didn't have too many glitches with the Internet connection. But after this, we will share this with others who weren't able to join us live this morning and put links to the Rally Caps movie in the comments so that if people want to either attend in person or virtually they have the information that they need to do that.

Jodi: [00:23:38] So thank you again. Thank you so much. I love you. Have a great day.

Announcer: [00:23:43] This has been a production of the three C Digital Media Network.

Episode 46: empowEAR Audiology - Dr. Uma Soman

Announcer: [00:00:00] Welcome to episode 46 of Empower Audiology with Dr. Carrie Spangler.

Carrie: [00:00:16] Welcome to the EmpowEAR Audiology podcast, which is part of the 3C Digital Media Network. My name is Dr. Carrie Spangler and I am your host. I am a passionate audiologist with a lifelong journey of living, with hearing challenges in this vibrant hearing world. This podcast is for professionals, parents, individuals with hearing challenges and those who want to be inspired. Thank you for listening and I hope you will subscribe or invite others to listen and leave me a positive review. I also wanted to invite all of you to visit and engage in the conversation and the EmpowEAR Audiology Facebook Group. Transcripts for each episode can be found at www3 the number three C Digital Media Network dot com under the EmpowEAR Audiology Podcast tab. Now let's get started with today's episode.

Announcer: [00:01:22] Hi. I wanted to take a moment to let you guys know about Carrie’'s new webinar. She has created a wonderful new webinar in collaboration with 3C Digital Media Network titled Back to School Optimizing the Learning Environment for Students Who Are Deaf or Hard of Hearing. It is an amazingly informative webinar with many helpful resources. You can go to 3C Digital Media Network dot com courses to access it, and from now until September 16th, we have a back to school promotion for 30% off all webinars. So I encourage you to check it out and take advantage of this offer before it expires. Now back to the episode.

Carrie: [00:02:00] Welcome to the empowEAR Audiology podcast. Thanks for joining us today and I have a special guest with me today and I'm going to give you a little introduction. But my guest, I have Dr. Uma Soman with me today, and she is a teacher of the deaf or hard of hearing and a listening and spoken language specialist, auditory verbal educator. Over the last 20 years, Dr. Soman has worked directly with children, their families and their educational teams in a variety of settings. She has also worked with graduate students and mentored professionals pursuing their listening and spoken language specialist certification. Currently, she serves in two roles the first as a co-founder and director of professional development at Listening Together, a nonprofit organization that advances the education and rehabilitation of children who are deaf and hard of hearing through parent empowerment, professional development and public awareness around the world. The second, as an assistant professor in the Communication Disorders and Deaf Education Department at Fontbonne University in St Louis and both of these roles, Dr. Selman works to prepare teachers, speech language pathologists and audiologists to work with with children who are deaf and hard of hearing and their families in a variety of settings. Dr. Soman has served on several boards, including the Option Schools Board and the AG Bell Academy, for listening and spoken language. So welcome, Dr. Soman.

Uma: [00:03:40] Thank you, Carrie, for that lovely introduction. And please just call me Uma.

Carrie: [00:03:45] I will. But it's so great to have you here. And I was so excited when I had the opportunity to actually meet you in person in May in Washington, D.C., at the cochlear implant conference.

Uma: [00:04:00] Yes. I mean, I have known of you and maybe we've interacted, but we had never met in person. So that was fantastic.

Carrie: [00:04:08] It was. And then I said, How would you like to join me on the empowEAR Audiology podcast? And you graciously said, Yes. So thank you for joining today.

Uma: [00:04:19] Thank you for inviting me.

Carrie: [00:04:21] I always like to ask my guest, how did you get to the point where you're at as far as a teacher of the deaf and just kind of was there something that spurred you into the field?

Uma: [00:04:36] So, you know, as I was preparing the questions. What I wanted to share today on your podcast, the word that kept coming up over and over was this. theme of Opportunity. So I got into this field. Initially by just dumb luck happenstance. My younger sister was diagnosed with bilateral, profound hearing loss many, many years ago. We were living in the Middle East at the time we moved to India. Given the services or lack of services, I should say for a very young child, my mother became a teacher of the deaf. My sister started receiving, listening and spoken language intervention from somebody who was trained by somebody who was trained by somebody by Dan Ling. Right. So this just the opportunity. So I've been going to listening and spoken language interventions since I was eight years old. There happened to be people on my mother's side of the family who are deep in education and teaching. So that path sort of just opened up in front of me and I happen to be decent at it. And I was again opportunity. I had the opportunity to train at one of the best possible programs in India in the field of deaf education. Over there I met a mentor who directed me to the Clarke School for the Deaf Program in Northampton, Massachusetts, for my master's. I got the opportunity to intern at Clarke Jacksonville. I got the opportunity to get a job there. Then through, like a recommendation, an opportunity to work at Vanderbilt, an opportunity to pursue a Ph.D. as a National Leadership Consortium and Sensory Disabilities Fellow. The opportunities have been endless, leading all the way up to what I'm doing today at Listening Together, as well as for fun on university.

Carrie: [00:06:51] Wow. I love how your personal story and experiences really created a lot of opportunities for you, and kuddos to you for taking so many opportunities too, because sometimes people are afraid of change and to take opportunities. And obviously that is not something you're scared of.

Uma: [00:07:14] No. And it takes intentional choosing a yes to something is a no to something else, and it takes hard work. The opportunity is just the beginning. What you do with it is what matters.

Carrie: [00:07:27] Mm hmm. Well, I'm glad you are good at saying your best Yes. And your best No’s along the way, which I have a feeling has a lot to do with your nonprofit organization that you and a colleague had started called Listening Together. I would love to hear more about your mission for Listening Together and what you guys do.

Speaker4: [00:07:54] Sure. So back in late 2016, just as I was finishing my PhD at Vanderbilt University, Ahladhini Rao Dugar and I started working together on this passion project that would eventually evolve into listening together. And we both grew up in India with family members who were deaf or hard of hearing. And we were quite familiar with the disparities in outcomes for children who are deaf and hard of hearing in India and the Indian subcontinent in general. Children and families who have resources and to some extent luck in finding the right professionals do well. And those who either don't have the resources or are aren't in a geographic location that has professionals or are working with professionals who are still running off of old methods. Outdated training have different outcomes. And at that point in our careers, both Ahladhini and I were at a point where we were ready to figure out what was our opportunity to give back, to share what we had learned so we could contribute to the process of making the difference. In no way were we thinking, Oh, we're going to fix this, or we've learned things in the quote unquote West that we are going to bring to India. It was always a what can we do with our knowledge to support what is happening that is relevant, realistic for the populations that we will be in contact with, for the communities of parents and professionals. So this sort of grew from working with one family. And by the middle, early 2018, I want to say Uma Medadidi, another parent, not another parent, a parent of a bilateral implant user, joined us and a team of the three of us formed the Listening Together nonprofit organization. Our mission has always been to support children, families and the professionals who work with them. And eventually we came to this statement of we want to transform lives of children who are deaf and hard of hearing around the world through parent empowerment, professional development and public awareness. We truly envision a world where financial restrictions and geographic constraints don't determine a child's outcomes, and every activity we do is towards this work of transformation.

Carrie: [00:10:41] Now, what a great mission. And the fact that you have lived in India and you've been there, I'm sure gives you so much insight into what you're currently doing, even though you want to make an impact across the world. But it sounds like it started because of everything that you've already experienced personally as a family and then with others who are India, too.

Uma: [00:11:06] Absolutely. And I would say that we don't claim to know what the ground reality is, but at least we feel we know the questions we need to ask because we're not on the ground every day. So partnering with people on the ground, understanding their day to day facilitators and challenges and successes and barriers. And we speak the language. We have a sense of the culture. And that, I would say, is a plus.

Carrie: [00:11:39] For sure. You mentioned that you have some different components of the program as well. So what kind of or types of programs do you offer through listening together?

Uma: [00:11:52] So our primary audience is families of children who are deaf and hard of hearing. As well as the variety of professionals who support these families. Again, notice that I'm not saying we work with children because that's not the focus. We work with families. We empower families and caregivers to support the development of their children, to engage in interprofessional collaboration. So that's one aspect, the parent empowerment piece. We've done it sometimes through individual coaching, but almost always the model has when group parent coaching, developing materials or resources or talks everything virtually. We don't have a brick and mortar anything in the world and connecting families with each other, connecting them with the supports within their communities is part of the Parent Empowerment Program. I mean, it's easy to talk the talk. The parents are the experts on the child and the parents and the leaders of this team. But what does that mean? How do we get parents to be able to do that? Is the focus of the Parent Empowerment Program. The professional development piece, and we actually call it the listening and spoken language professional enrichment program, because almost everyone we work with has a background or degree in a field related to working with children who are deaf and hard of hearing, either as an SLP or audiology or as a teacher. And the goal there, again, is to take the skills they currently have and enrich their knowledge and skills so that not only are they learning the latest evidence based practices, but learning how to implement them. Keeping the family at the center of all of this, always because the models have been the models in India in particular are a little bit different, influenced by culture, social norms of how a parent and professional interacts with the power dynamic is, and so on and so forth.

Uma: [00:14:14] So professional development is about addressing the building capacity within the knowledge, the skills, as well as the attitudes and the dispositions. We really want to see parents and professionals working in collaboration to best support the child. So we have these two sort of separate tracks and then we have the public awareness piece. And that to me is sort of our everybody together kind of track. And under that we released a children's book. We have our free webinars that are open to parents and professionals. To the best of my knowledge, when we first started these webinars, it was one of the maybe the only but definitely one of few platforms where information, the same information was being shared with parents and professionals. So just that bringing everyone together, understanding perspectives, it's not us versus them, but all of us together. Thus the Listening Together together piece matters a lot to us. We offer these programs in English, obviously, but also in several regional languages. So in the past or even now, the webinars are offered in English on one day and Hindi same content in Hindi on the next day. We've done professional development courses where if we have enough for a group of people, then we run the same course into different languages. And anybody is welcome to come to any people are welcome to come to both if that is how they want to participate. Right now I'm trying to model where I teach in English on Saturday and then we have quote unquote office hours on Monday in either Hindi or Marathi. And that's an experiment. I'm curious to see how that goes in ensuring that, again, opportunity people have the opportunity to get this information and develop their skills.

Carrie: [00:16:26] That I get why you say listening together because the parent and professional pieces or family and professional pitches so important to help that child. So talking about opportunities to how do people find out about the different courses or webinars or opportunities that you have?

Uma: [00:16:48] So our social media is our best starting point, but what we have discovered so we'll post on our Facebook page, we'll post on our Instagram page, we'll post on our LinkedIn page. Those are our most active where people will find us. But we also have WhatsApp groups, which WhatsApp is a text app and we have a parent group, we have a professional group and we are finding out that through the sharing of these WhatsApp messages and groups is also another way that people are finding us.

Carrie: [00:17:26] That's the great idea to have that group so people can continue the conversation of the webinar or whatever being shared. Is there anything about all this, about Listening Together that you wanted to share that I didn't ask you about?

Uma: [00:17:44] I think just just from a personal point of view, it's been a. A long time ago, I thought my career was headed in a certain direction and I was going to get my PhD, be a researcher, or be in an administrative role. The whole idea of the nonprofit and the impact it can have and the investment we are making is a big one. So I didn't talk a lot about this, but our financial model is essentially take what you need, give what you can. All services to families are provided for free because again, we don't want financial constraints to be a factor. All services or trainings to professionals have a fee but have generous scholarships because again, we think we are making an investment in this human capital that is going to transform not just the lives of the children they work with, but the the landscape for what is possible for kids who are deaf and hard of hearing. So just that investment and the transformation is an exceptionally exciting part of it. Our priorities for the coming years are increasing access, building capacity and fostering leadership because we know that leaders come in all forms and from all walks of life, and I think that's where the transformation will happen.

Carrie: [00:19:20] Well, thanks for that vision of Listening Together and everything that both of you have put into the nonprofit. Because, like you said, you're building human capital in so many different ways and also influencing the professionals along the way, too. So thank you for that.

Uma: [00:19:39] Thank you.

Carrie: [00:19:40] And I was going to switch gears a little bit with your other role that you have in your life. And I think it's a great topic because we are getting ready to transition into another academic school year, which is hard to believe. And we know that students who are deaf and hard of hearing and whether it's an early intervention or a school age, really require some specialized professionals and support along the way. So I would love to take a deeper dive into your role as a teacher of the deaf and also as a professor, and kind of talk about talk about that. So maybe to get started just for by listeners, can you just share about the role of the teacher of the deaf and hard of hearing and how that might have changed over the over the years, too?

Uma: [00:20:34] Sure. Sure. So. I mean, it should come as no surprise to anyone that children who are deaf and hard of hearing and their educational trajectories and opportunities have changed over the last 20, 30 years. When I started in this field 20 years ago this year, it was. Mainstreaming was a goal, but it was not uncommon for children to start in schools for the deaf and then have the goal of mainstreaming. During my time in this field, we've gone from children, come to schools for the deaf to early intervention, happens in the home, and then there are some children who never come to a specialized program. They just go directly into the general education setting. And even if they're, quote unquote, caught up at three. They still have to keep making progress to keep up with all the language, academic, social demands of what it takes to learn in the school. And it is important that a specialized professional is there to support them, not to say that they will always need help, but to monitor their progress to make sure they're not falling behind. So I think fundamentally the rule, the way it has changed is it used to be that students would come to the teacher.

Uma: [00:22:11] And now the teacher is going to the students. And don't get me wrong, there are still teachers of the deaf in programs like option schools where children are coming to them. But that's a model that has changed over the years. We used to have K through 12 programs for the deaf and now they're shrinking and shrinking and shrinking to the point it's going to be early intervention and early childhood with specialized programs for the deaf designed specifically for children who have additional challenges. So in some ways, a teacher of the deaf and all of these roles still exist. But the way the role is changing is it used to be that the teacher of the deaf was teaching kids to. Speak. And now the teacher of the deaf is still doing that. But hearing technology is also helping them to learn to listen and learn through listening as well as really be a part of the general education sector. So to me it comes down to. How are teachers who are itinerants now supporting children not just survive but thrive in an inclusive setting, facilitating inclusion.

Uma: [00:23:37] If a just say an outside, a general ed teacher would say to you, what if you had to give an elevator speech about a teacher of the deaf? What would you say? How would you explain that?

Carrie: [00:23:53] Yes, what a great question. I should have definitely rehearsed this. And I'm going to make all of my students rehearse this as they prepare for job interviews. Okay. So if I were talking to a general education teacher with my role as a teacher of the deaf is which is different than that of a speech language pathologist and that of a special educator. I would say as a teacher of the deaf, I have specialized knowledge and skills in helping children develop listening and spoken language, particularly within the context of developing, reading, writing and academic skills. I am also someone who can help them develop their self advocacy skills and social skills so that we are on the path to leading productive as independent as possible lives post high school.

Carrie: [00:24:49] Wow. That was a great elevator speech.

Uma: [00:24:52] I'm glad this is being recorded because part of me is like, Oh, I want the script for this.

Carrie: [00:24:59] Now we can just pull that little piece out and then we can have elevator speeches for teachers of the deaf and hard of hearing.

Uma: [00:25:07] Yeah, yeah, yeah. And it is a unique role, which is different than that of a speech language pathologist or a special educator. And I've been very lucky to work on teams where all three of these professions were working together, bringing their unique perspectives to support a child.

Carrie: [00:25:28] Mm hmm. Yeah. And just being in the schools, as well as an audiologist of some districts that we go into. And there possibly would only be one or two kids. And if they haven't had that experience before, they are not questioning, but they want to know exactly what is the role and how do they serve that student so that they can have the build the capacity too.

Uma: [00:25:56] Absolutely. And there is a new position statement by counsel for Exceptional Children's DCDD. I think that's still their name, the department, not department division of Communication Disorders and deafness about the role of the teacher of the deaf and the contribution that they make. So if listeners are interested, check it out.

Carrie: [00:26:20] Definitely. And we can even post that or link that in the show notes to so people can take a look at that. I know you have your role at Fontbonne as a professor too. And so I thought I would ask you, what are some of the requirements and curriculum focus for becoming a teacher of the deaf or hard of hearing?

Uma [00:26:40] Sure. So at Fontbonne and Fontbonne has been doing this for a long time, preparing teachers and SLPs who specialize in working with children for deaf and hard of hearing. We currently have to accept the Office of Special Education Projects funded grants where teachers and speech language pathologists interested in specializing in either working in early intervention or as itinerants receive tuition funding to do this. So let me just plug the grants right there at the top.

Carrie [00:27:16] I'm a huge plug because I'm sure we're going to get into shortages later on, too. So what an opportunity again, opportunity for someone who's interested to gain more knowledge.

Uma: [00:27:29] Absolutely. So depending on the program you're in, either your focus is early intervention or your focus is inclusive settings. So itinerant, itinerant, teaching kinds of situations. But both grants the interdisciplinary preparation of teachers of the Deaf and SLPs to provide early intervention as well as the Fontbonne Northeast Interdisciplinary Preparation Project. Our focused on making sure that people are graduating with skills to work in one of these settings with specialized knowledge and skills. So what do you need in terms of background? A bachelor's degree is important. People coming into the speech language pathology program are often coming in with a bachelor's in communication disorders. People coming into the deaf education program are often coming in with a bachelor's in education or related field. I want to encourage everyone listening to know that you don't need a degree in education or speech language pathology is not required to start this. There are other ways of considering entering the field, but a bachelor's degree would be the first step. We have the grant has allowed scholars to join us remotely. So we have several students this year as well as last year. Who are not local to St.Louis. They live where they work. And they get to participate as they are working as teachers. So that would be the two key aspects of the program and the program focus ranges, right? So you're going to learn about auditory development and language development and literacy development, but you're also going to learn about how to work in interdisciplinary teams, how to engage in collaboration. And I think that is a pretty unique feature of what the Fontbonne program focuses on. The interdisciplinary piece almost all classes are taken with teachers and SLPs in the same room, understanding each other's roles, learning from each other.

Carrie: [00:29:59] And you said this is grant funded, right? Right now. How many? So my first question is, how many years have you guys been able to do this? And then second would be, how many students do you typically accept every year?

Uma: [00:30:14] Okay. Good questions. And how many years have we been able to do this? Fontbonne has a long history of being federally funded. The early intervention grant is on its second iteration. The Fontbonne Northeast Collaborative is also on its second iteration. I mean, knock on wood. But we've had success with receiving grants to support trainees. How many students? The largest class we used to be limited by how many clinic placements, our school field placements we could manage. But if you are remote, as long as we find a good placement for you where you will have supervision and and so on and so forth. We are not limited by numbers as such as we were before. We do have I believe it's we have funding for 32 scholars in each grant. And those numbers might be a little bit off, but I can look them up over the period of four years. So we're not getting 32 people one time and taking them through four years, but like eight, eight and eight or something like that.

Carrie: [00:31:31] Okay. And then when they finish the training requirement, they would then have a master's in deaf education.

Uma: [00:31:40] Yes, yes. Masters of Arts in deaf education or early intervention. And if they're a speech language pathologists, they would have a parallel master's.

Carrie: [00:31:51] Wow, that's great. And we can definitely link information about that as well. So another opportunity to. Absolutely.

Uma: [00:32:01] And anyone listening, if you are thinking, hmm, I wonder if this is for me, just reach out to us. We'll figure it out. We have a student this year from a completely different part of the world who is managing the program well. So if you want to be a teacher of the deaf or a speech language pathologist, we'll figure out a way to help you do that.

Carrie: [00:32:24]  Wow. So the speech language pathologist that they would end up with a master's in speech language pathology then, but with the focus on working with deaf and hard of hearing.

Uma [00:32:33] Absolutely.

Carrie: [00:32:34] Hmm. That's always good to know as a specialty professional, too. Well, I wanted to talk a little bit about the shortages. Do you see just from your experiences over your 20 years of being a teacher of the deaf, have you seen the shortages and.

Uma [00:32:54] Absolutely.

Carrie: [00:32:55] What can be done about it?

Uma: [00:32:57] So, I mean, I knew you were going to ask this question, so I went and pulled some data. According to the US Department's listing of teacher shortages in 2018. 19 out of the 43, states or territories are reporting a critical shortage for special education teachers in general. Of those nine states specified that the shortage is for students who are deaf and hard of hearing. I think there is a couple factors to consider. One is. Deafness is a low incidence disability, right? So there and like you said, you go to schools and there's maybe one or two kids. It is unlikely that a school with the budgets being cut and the teacher pay the way it is, can afford to hire one teacher for one student. So we're not seeing a lot of people enter the profession. That is number one for the shortage. The work is not easy in the current climate. Teachers aren't being supported the way they need to be to continue to do the work they are. And this is all teachers. I'm making the blanket statement. We could be supporting our teachers more in a variety of ways.

Uma: [00:34:18] I think that's what has created this shortage. But there are programs around the country that are not only training new teachers to enter the field, but are also creating some alternative pathways. So you might already be a teacher working in an adjacent field, and you can then add this certification to make a somewhat of a lateral move. So you're bringing your existing experience and expertise and adding this on to support children. I think the only way forward is through and we have to understand and address the shortage issue and come up with a variety of ways to continue to support children. I think the pandemic and the tele education, tele intervention piece really helped open up some opportunities and stop people from dismissing tele delivery as a last resort kind of model. So maybe that brings about some changes in the coming years, decades that there continues to be a shortage. And we need to have more professionals trained to do this because like I said, a teacher of the deaf is not the same as a speech language pathologist or a special educator.

Carrie: [00:35:46] Mm hmm. Yeah. And it's great that you at Fontbonne have an opportunity to offer the virtual, because I feel like there's not a lot of universities in the country that offer a program that is specialized in deaf education, or it's a program that might not be serving a lot of kids in a mainstream setting. It may be more focused on serving students who are in a school for the deaf or something like that.

Uma: [00:36:17] So. Right. And it's my intention. I mean, our faculty. Even our faculty is remote. Like, I live in Illinois and teach at a university in St Louis, Missouri. Our other faculty member lives in Massachusetts and is teaching in the program. So it's not as a as a reaction to something. This was an intentional design to meet more people where they are to reach a wider group of people.

Carrie: [00:36:47] So this is kind of changing just a little bit, but not too much. And it kind of gets into maybe. Um, supervision, but more into the real life of being in the schools with whether you're in early intervention or in a school age. But how do you teach or how would a specialty professional like a teacher of the deaf or hard of hearing, integrate themselves into that educational team?

Uma: [00:37:17] So again, another great question. I think the IEP is the IEP meeting, the individualized education program meeting for any child is a good starting point. If everybody on the team has done their job the way they should. By the end of this meeting, we have identified a child's needs and a child's strengths and what the child needs to work on and who will work on it and when and how. So in most situations, an IEP provides a blueprint or roadmap for how each specialty professional is going to contribute to the child's development. And then you might have an intern or an itinerant doing a 30 minute pullout or a 20 minute consultation or a 15 minute push in. And the service delivery models vary. But what we do with our time with the child and the teacher and the peers is, again, what matters. So the the theory part of this is, oh, the IEP tells you how you integrate into this team. But the real world, the soft skills part, is essentially all about interdisciplinary practice. So when I was at Vanderbilt University at the Mama Lere hearing school and we were just seeing this need for kids with CIs in rural counties around Nashville who needed support at school and they didn't have features of the deaf. So people in administration put a lot of faith in me and said. Go take a look, see what we can do. And I was doing outreach without really knowing what it was that I needed to do. And it turns out it is as simple as really listening to the teachers, understanding what their needs are, what their challenges are, and knowing that you are there to support them, support the child, and not there to tell them how to do their job or judge them or evaluate them on on any of that. So the IEP tells us where we need to be and what we need to work on. But our interdisciplinary skills help us do that job. Mm hmm. Which is, again, why I think it's pretty phenomenal that on Fontbonne has brands where one of the focus area is interdisciplinary work.

Carrie: [00:39:51] And you had real world experience of just going out to some rural area outside of Nashville and figuring it out, which probably helps that bring that experience to you as a professor, too.

Uma: [00:40:06] Yeah, yeah. It helps to really keep being present and sharing what you can offer. I did an in-service at 2:30 in the middle of the night for a kid I work with in North India like a month ago. And I was like, Thank goodness I've done this enough times because otherwise doing this at 2:30 in the morning, in the middle of the night would be a little bit challenging. But that's what it is, right? You want to start a conversation? This kid coming into your class is not a problem, is not someone to pity, is not someone to just pass along. This is a kid with potential who will learn and the strategies you use to teach. This one child will probably benefit ten others in the class. And once you establish that, then it's so much easier to work together.

Carrie: [00:40:57] It is. Which kind of segues into another great question that I have for you is we talked a lot about the teachers, but how do you build capacity for students who who are deaf and hard of hearing and to have those self determination and advocacy skills as a teacher of the deaf or hard of hearing?

Uma: [00:41:17] So that's a great question, Carrie. And I think it starts even before you get to the student, right? The child is going to take their cues about their identity, their self image from what the parents are modeling. So I think it starts with how do I, as a teacher of the deaf, support the parents, empower the parents to take charge, to lead, to share their desired outcomes and guide the team on this path. The child is going to pick up their cues from them. And I have a cut this out if we run out of time. But I'll give you a short story. I work with a group of kids when they were in preschool. And as a preschool teacher, you talk to the parents a lot because there's a lot to discuss every day. And I remember very distinctly thinking, wow, I have three different families to describe and look at their child using three very different sets of words. One would say, I have a child with profound hearing loss and wears cochlear implants? One would say, I have a child who is deaf. So with her cochlear implants, she's like hearing. And another would say, yeah, my daughter has a hearing problem. She needs hearing aids. Happenstance. I ended up working with these kids on social skills and the social skills group when they were in third grade. So I had worked with them when they were three and four, and now I was working with them when they were in second and third grade. And lo and behold, these were the words that they were using to describe themselves. Right. And I'm thinking, Oh. It's not. I can't intervene. I can. But intervening now is going to lead to a certain path. Whereas if I had intervened or talked or had a conversation about the word choice and the attitude that families were conveying to their children about their hearing loss of their deafness. Where would we. Where would we be today?

Carrie: [00:43:34] Hmm?

Uma: [00:43:35] So that has always stayed with me and I have made significant changes having learned from that experience and how I talk to children and families. One of the things that I have changed pretty drastically in the recent years is talking to the child about the fact that they have an IEP coming up and sometimes it starts very small. It's like, Oh, we're going to have a meeting, mom is going to be there and Dad is going to be there, and I'm going to be there. And you list all the team members. Mm hmm. But hopefully you progress it to say we're having a meeting. What should we discuss? And just recently, one of the kids that I worked with a long time was just I was so impressed. He said, Well, reading and writing is going, okay, that's not a problem. I could use some help with writing, so some time for that would be good. And then recess is still tricky. I think I need some help from the social worker. Well, okay. Do I even have to be at this meeting, or should we just say that this is done?

Carrie: [00:44:47] That's so insightful that the the student was able to see, okay, these are my strengths, this is where I could use some help and be able to ask for that and articulate it.

Uma: [00:45:00] Absolutely. And this is not a traditionally superstar student, right? This is a student with significant challenges and significant delays. And when we started, the student had no idea what it meant when I said, what's going well at school? What do you need help with? And it took us a few years, but we've definitely built up some self-advocacy and self determination skills.

Carrie: [00:45:25] Right, which is probably for a lot of itinerant teachers. One of the plusses of the job, to be able to have that continuing relationship over the years with students and a joy for you to be able to see the progress that they do make.

Uma: [00:45:39] Absolutely. So when we did. Sorry, I'm changing topics a little bit, but we did a survey of itinerant teachers, which is what we presented at the Cochlear Implant Alliance Conference and in our pilot group, which was about 60 teachers. Teachers said they spend anywhere from 20 to 40% of their time with the child on self-advocacy skills.

Carrie: [00:46:04] Mm hmm.

Uma: [00:46:05] So that continues to be a big part of what it is that we do.

Carrie: [00:46:08] Right. And it's an important part because it's a life skill that they're going to need no matter what phase of their life they're in. If they're getting a job, going to school, being in the community, they have to know more about themselves in order to be self-determined, to ask for the services and supports that they will need in the future.

Uma: [00:46:29] Absolutely. And you know, Carrie, I mean, again, it's been an honor and privilege to have interactions with adults who are living this right. Adults like you, adults like my sister who are deaf, who are hard of hearing and are navigating life because their deafness isn't going to stop them from doing anything. Maybe there is a different way of doing something, but that doesn't mean they can't do it. There's no reason to stop for any reason. And I feel like. I came into this field knowing that the child sitting in front of me today or this year is going to be an adult one day, and I need to always keep that in mind. This is not about passing fourth grade or learning trigonometry. This is about living life. And whatever I am doing should contribute to a good life.

Carrie: [00:47:31] I love that. It's a great opportunity.

Uma [00:47:36] Yes. I'm telling you that word. I mean, as cheesy as it sounds, when I was looking through these questions, I mean, there's this word that keeps coming up. Maybe there's something there.

Carrie: [00:47:49] There is something there for sure. Is there anything that I didn't ask you that you wanted to share today?

Uma: [00:47:58] No. I just want to share that being a teacher of the deaf is a really fun, joyous. Calling an opportunity. And those interested should really consider exploring what this path is and how you can contribute to the lives of children who are deaf and hard of hearing.

Carrie: [00:48:22] And if listeners would like to reach out to you, how can they get ahold of you?

Uma [00:48:27] So I am on social media under my name, Uma Soman. Almost all of my social media is professionally focused, so you can find me on Facebook or LinkedIn. And you can also write to me via email. I am Uma.soman@listeningtogether.com or I am at usoman@fontbonne.edu. Reach out if you want to learn more about anything that I shared today or just want to chat about any of these topics.

Carrie: [00:49:01] Well, I want to thank you today for the opportunity to interview you and the EmpowEAR Audiology podcast. I can just see your passion for what you do, just shine through. And it really does with Llistening Together nonprofit. And then those students that have the opportunity to have you as a professor are really in for a great treat because I'm sure they see your passion shine through as well and become a better professional because of you. So thank you for all that you do, and thank you for being a guest today.

Uma: [00:49:36] Thank you, Carrie for inviting me and creating this platform to share information.

Carrie: [00:49:42] All right. And thank you listeners for listening to the EmpowEAR Audiology podcast. If you like this show, please share with others. And if you can take the time to give a five star review, I would appreciate that so others can find it and enjoy listening as well. Thank you.

Speaker1: [00:50:00] This has been a production of the 3C Digital Media Network.

Episode 45: empowEAR Audiology - Dr. Ivette Cejas

Announcer: [00:00:00] Welcome to episode 45 of Empower Audiology with Dr. Carrie Spangler.
Carrie: [00:00:15] Welcome to the Empower Your Ideology podcast, which is part of the three C Digital Media Network. My name is Dr. Carrie Spangler and I am your host. I am a passionate audiologist with a lifelong journey of living, with hearing challenges in this vibrant hearing world. This podcast is for professionals, parents, individuals with hearing challenges and those who want to be inspired. Thank you for listening and I hope you will subscribe, invite others to listen and leave me a positive review. I also wanted to invite all of you to visit and engage in the conversation and the EmpowEAR Audiology Facebook Group. Transcripts for each episode can be found at www3 the number three C Digital Media Network dot com under the EmpowerEAR Audiology Podcast tab. Now let's get started with today's episode. Today I have Dr. Ivette Cejas with me. She is an associate professor at the University of Miami Institute and Director of Family Support Services at the University of Miami Children's Hearing Program. She is a licensed psychologist in the state of Florida and is a well-known researcher in the area of pediatric hearing loss. She specializes in psycho educational evaluations for deaf or hard of hearing children, as well as mental health therapy for this population. She is on the board of directors of AG Bell and is a member of the American Cochlear Implant Alliance. So thank you for Ivette joining me today.
Ivette: [00:02:07] Yes, thank you so much, Carrie, for the special invitation. I'm super excited to be part of the podcast.
Carrie: [00:02:14] Well, I had an opportunity to hear you speak at the recent American Cochlear Implant Alliance conference back in May of 2022. And I was just so intrigued by the different topics of research that you are involved with, including language and academic achievement for children who are deaf and hard of hearing, especially those with cochlear implants and also the societal cost of that severe to profound hearing loss. So I was excited that we were both at the A.G. Bell reopening event in Washington, D.C., and a common colleague, Jordan McNair, said, I need to know you. So I'm glad he connected us.
Ivette: [00:03:02] Yes. I think we all work in a very small circle, so I'm super excited that Jordan introduced me to you and that I can kind of expand a little bit more about the important work that we're doing as part of the Children's Hearing Program at UL, at UT Health , but also just about topics that don't typically get discussed in the deaf and hard of hearing population.
Carrie: [00:03:26] Which is a great segway into my next question, because I always like to ask professionals about their back story and you being a psychologist and getting interested in the deaf and hard of hearing population. I would love if you could share a little bit about that.
Ivette: [00:03:45] Yeah. So I always say that kind of fell on my plate. I always knew I wanted to work with children and families. I was definitely always interested in special needs populations and more of pediatric psychology. So I did a lot of work with children with chronic medical conditions, whether diabetes, cystic fibrosis and cancer. And I was kind of just as most people looking for a job in between undergrad and graduate school. And I ended up working as part of a research lab that was doing research on children with cochlear implants. And it was an immediate connection. I had so many questions. I wanted to see how I can help this very unique population of kids. And so I kind of started just doing some research in the area and then realized that there was also a very much clinical need in this population and that a lot of psychologists don't know how to work with deaf and hard of hearing children or adolescents. And so I started to carve out in my graduate training, still doing pediatric psychology, but then working with this very unique population. And my love and passion just continued to grow from there. And I found a very unique niche in my training to be able to provide a little bit more of that clinical need for this group.
Carrie: [00:05:18] That's amazing because I, I agree that we need to have this other perspective when we're working with families and children who do have cochlear implants. Because although the cochlear implants are medically very extraordinary and they're very scientific, scientific, but there's also a lot of other factors that go into working with this population. So to get us started with our listeners. Can you just share a little bit about maybe the landscape of children with cochlear implants and kind of the statistics that you see?
Ivette: [00:06:00] Yeah. So cochlear implants are an amazing technology that, you know, the criteria and candidacy obviously is expanding very, very quickly. But typically, right, we kind of refer children who have a bilateral severe to profound hearing loss, who really aren't benefiting from using hearing aids to kind of do a comprehensive evaluation to see if their cochlear implant, you know, a candidate obviously with the family's choice involved and with the the the that unique partnership between the clinic as well as the family to see if that's the right choice for them. Obviously. Now it's also being recommended for single sided deafness as long as the children are older than five years old. So even in my lifetime and I always say I'm not very old, I've seen drastic changes in one, how they look, how they function, but also just who are candidates. And I think it's just something where, you know, if families have a doubt, if they're interested, I always just recommend that they seek an evaluation, find a pediatric program that is willing to listen to your your concerns, what you want, your goals for the child. And if it's something the family would like to pursue, then it really has amazing benefits and improving the access to their auditory environment. That could really kind of help in terms of the development of listening and spoken language.
Ivette: [00:07:30] But the harder part is that a lot of children that are born with hearing loss are born to hearing parents and to over 95%. Right. I would say I know they say 90%, but really it is higher up there. And this is where it really becomes challenging for parents because it's something very new. They don't know what to expect. Children, you know, are difficult in general. Right. First time parents, I remember the first time I was a parent, I'm like, I really wish I had a manual. I had all of these articles and all of these things that I could do and I read, but there really isn't no true preparation to becoming a parent. So I always say, imagine what that's like when then you have a child that has some other developmental disorder or some other medical condition, right? It brings on a whole other kind of stress into the family. And that's why I think it's so important to have more psychologists, more social workers, more mental health providers that are helping to guide the families in knowing what to do, what are those next steps and how we can help them cope with sometimes the unknown that comes with this hearing loss diagnosis.
Carrie: [00:08:39] Yeah. And like you said, there's really a multitude of factors that goes into the success of, you know, children who have cochlear implants from the age of diagnosis to the age of implantation to the intervention that happens afterward. But I know that you've done and then, like you said, that any kind of co-morbid conditions, too, but you've done a lot from a psychologist perspective and the focus of family and parenting as it relates to children who are deaf and hard of hearing. So can you share a little bit more or take a deeper dive into your research with families and some of those predictors of post implant success?
Ivette : [00:09:27] Yeah. So I always say usually when I'm in conferences, I'm a little bit of the unicorn right in the audience, right? So we always expect that these national cochlear implant conferences or any deaf and hard of hearing conference, we always see, right audiologists, our educators, our speech and language therapists. But then usually I'm kind of the psychologist in the room, or now it's kind of a handful of us. And that's amazing to see that even in my career, I'm seeing to see more people who are interested in learning about the topic. And so one of the things that I've kind of done throughout my career is to really emphasize the whole child and the whole child's development. We're not just talking about hearing, we're not just talking about language, but how all of those things can really affect that parent child relationship or how it could affect a child's social skills. Right. And how they develop in those areas, their emotional functioning, their quality of life. And so I've seen a lot of gaps in those areas. Right? I've seen a lot of gaps where we don't really have validated tools. We don't have really good instruments to help us track these areas.
Ivette: [00:10:39] We're great tracking speech and language skills. We're great about looking at auditory development post implementation, but sometimes those things do not connect, right? Our best performers sometimes are still struggling socially. Our best performers sometimes are still struggling academically. And so I in my career have wanted to look at those things and find out what can we do? Why is there still so much variability in performance when we look at this population of cochlear implant recipients, is there something right that can lead us to do something differently in terms of intervention? And so those are some of the questions that I started to ask and started to uncover because I know as a group that they do well. Right. But still, there's still a subset of these kids that are not even though they're being implanted earlier, even though they're receiving all the interventions that we think could benefit them. And so I wanted to kind of start to ask, answer some of those questions to see what we could be doing in both the clinical side, but also the educator side into improving those outcomes for those children.
Carrie: [00:11:47] And what have you found? I know that you. One of the big things that you've looked at is parenting stress. And you kind of alluded to that earlier. As a parent, even as a first time parent, we don't have a manual. We we don't really know what we're getting into until you actually have a child of your own and then you add, you know, another unknown on top of it. So what have you found in your research with parenting, stress and children who are deaf and hard of hearing?
Speaker3: [00:12:22] Yeah. So I always, you know, parenting, stress, like I said, even somebody with a lot of training or. I thought I had a lot of training. Right? Developmental training. I knew exactly what to do. When I had my first baby. I probably looked like a deer with the headlights. I was unsure. I was afraid. You're nervous, you're happy. You have all of these emotions. And I always tell parents you're not alone in that. Right. And, you know, the literature really has found that if we look at general parenting stress, our parents of children with hearing loss are no different. So general stressors, we are all stressed as parents. It is what it is. Right? But the unique part that we've started to find in my research is that there is higher reports of condition or what we say, context, specific stressors related to hearing loss that we do not obviously see in a hearing population. And so what we found is that those are more predictive or more related to a parent self efficacy, which is parent, which is basically how confident you feel in your skill set. Parent Right. So we see that that parenting stress is related to parental self efficacy, but all of that, more importantly, is related to child a child's communication or a child's language development. And so that's where right that started to catch my attention where okay, these parents, right. If they're more stressed, they're less confident in their skills. And if they're less confident in their skills, they're less involved. And if they're less involved, we know that that has a direct effect on a child's development. And that's why we really need to be doing better about helping parents when they start to feel right, scared when they start to feel that they're not equipped with the right skills or when they're really feeling high levels of stress.
Ivette: [00:14:13] So that way we can do something to help in terms of that that their child's overall development. So one of the studies that we recently published in the Journal of Otology and Neuropsychology was part of the childhood development after cochlear implantation study. The CDCI study is some people call or maybe the CDCI study and that actually that study is kind of like a hallmark of my career. I started to work on that study when I was still an undergrad before I had graduated, and that study is the one who sparked my interest to go into this career. And I've been able to work on that project through right undergrad, through graduate school, and then as an actual investigator on the project. And we followed 188 children with cochlear implants from before they received their implant all the way to several years after. And that's the study that we found that parents who reported higher levels of stress reported lower perceptions of self efficacy and involvement. And this was after kind of controlling for things like age at activation, parent education, all of these variables that we know could affect outcomes. So in itself, after controlling for other key variables that we know still parental self efficacy and parenting stress were still affecting child's spoken language development, which as a psychologist and as someone who's working as part of an implant team, I started to realize, okay, we should really start to be assessing this in our clinical sample. That way, when we start to see that these things are on the rise, we can kind of help families before it becomes to a clinical level that we know could really affect the child's outcomes.
Carrie: [00:16:00] Wow to get 188 families is amazing to you to be able to follow because that's a pretty large population when you think about how small the population really is for, you know, children with cochlear implants. But you mentioned the self efficacy and measuring that for parents. Is there a and have you worked on a tool to help clinicians and researchers to look at that with families?
Ivette: [00:16:27] Yeah. So actually the tool that I use to look at parental self efficacy and involvement was called the SPISE, and it's the scale of parental involvement and self efficacy by one of my colleagues, Jean Desjardin. And she developed that tool, which I have found very useful. And, and it has some information just to kind of even guide intervention. So you can kind of see where parents are feeling that they need a little bit more support. And so for my you know, for the audience, right, if you're an educator, if you're a speech and language pathologist or an LSL specialist, they really find this helpful because it's not just identifying areas, but it's giving you targets for what you could do. And even for my parents, my families, that they don't realize the areas are struggling. But then you have a measure to say, let's kind of use this to monitor what areas maybe you need a little bit more help with. So I tend to use the SPISE for self efficacy and involvement. And then in the study I was referring to, I used the family stress scale for parenting stress, but that scale was actually developed many years ago before I was even in the field.
Ivette: [00:17:35] And so I found that even though it was helpful because of the population that we're serving, I actually developed a specific parenting stress measure for cochlear implants for parents of cochlear implant users. And so that's one that I did recently develop and validate, and that was published in the Journal of Pediatric Psychology. And that's because I really started to see again with the research that it's not just general stress, it's stress related to cochlear implants specifically that was really being a stronger predictor. So I wanted to develop something using the current day practices, right, to make sure that I was using something that was applicable for the entire cochlear implant population and parents. So we recently did involve develop that and validate that. And that's a free screening tool that anyone is available open to, to, to using. And we're in the process of actually translating it in Spanish and validating it that way. We can also use it with our Spanish speaking population.
Carrie: [00:18:39] That is great. Well, at the end, in the show notes, we're definitely put a link so people can access that tool as well. When you were developing that tool specific for stresses for parenting, for kids with cochlear implants, what were some of the main stressors that stood out in this for this parental, you know, population?
Ivette [00:19:03] Yeah. So, you know, it's not surprising even when we see it. And what was more surprising to me is that the top stressors don't change much from early childhood to school age. I expected that there was going to be a bigger shift or difference. But, you know, the as in early childhood, the main stressors were being a language teacher for your child's educational concerns and safety. Those were the key ones. In addition to financial stressors, which actually is a common stressor across any parent, whether you have hearing loss, a child with hearing loss or not. But those were the main stressors when you go to the school age population, some of those change in the top five in terms of where they are from number one to number three. But the added ones are more of, you know, your child spending time away from home, being with peers. And so that starts to kind of creep in a little bit as parents become more concerned as the child goes away from the household. But being a little bit more independent and then not knowing if their child's ready to advocate for themselves or if the child's ready to to kind of manage their, let's say, their devices independently or if their child is going to lose the device. That became one of the top stressors later on of the device breaking and or their child losing the losing the implant.
Carrie: [00:20:30] Yeah. I could see how many of those starters would be at the for a lot of our families, too. So from your perspective, too, you talked about, you know, families that have higher self-efficacy skills that kind of translates in the child having better own advocacy skills as well as maybe language skills and social skills and things like that. Have you found some good tips or tools to help increase self-efficacy to skills, or is that kind of individual?
Ivette [00:21:10] Yeah. I mean, in general, the biggest thing I always say is, you know, we're very hard on ourselves as parents. It is what it is, right? It's the hardest it's the most rewarding job you have. But it is among the hardest job. Right, that you have. And so I always tell the parents that I'm working with, stop comparing yourself to others. Stop comparing yourself to the family that maybe you wait, that you you met in the waiting room. Right. We got to take all of our positives and realize that we're all unique. Our children are unique, but we're also as parents, we have different styles. And that is what works for one family is not another. So that's probably the number one recommendation I give. And also, you know, the importance the importance of positive self-talk. Right? We always remember every mistake we made, maybe something we shouldn't have done, but we fail to realize all the amazing things that we do right for our children and all of the wonderful things that they are doing, too. So when we can use positive self-talk and give ourselves a pat in the back, that is really important to developing your self esteem, which is going to affect your self efficacy. When we talk about that confidence and that confidence of, of, of the skills that you have as a parent, I also always said make sure you're setting realistic and attainable goals. Right? The same thing you say. Let's say you're a speech language pathologist or you're an educational specialist. Right. We got to set attainable goals for our children right in the IEP process, but we don't really do that to ourselves as a parent.
Ivette [00:22:47] So we say, make sure you're picking a goal that you feel like you can reach, right? We don't want to set a goal that then you're not going to reach because life happens and that's okay. You want to pick simple, attainable goals and that is really huge. Also, make sure you're looking at the bigger picture. You know, we kind of sometimes are so, so specific and we're thinking way too much, too much in the future, and that's okay. And we want to look at bigger picture in terms of growth. So I always recommend that and let's reframe the obstacles, right? Life has obstacles, life has speed bumps, and that's okay. But we need to reframe them because even when they do happen, you're going to learn from it and that might help you accomplish another goal in the future. So I would say those are probably the main general kind of goals or tips that I have when you're kind of a parent that's struggling in terms of believing in yourself. And the number one thing is believe in yourself because I know you can do it and every day is not perfect, but that's what we learn. And make sure, of course, that you're finding attending some social activities, some groups finding opportunities for you to share stories with other parents that are experiencing the same things. I would say that's really, really important, not just for self efficacy, but just helping overall mental health and increasing your positive mental health.
Carrie: [00:24:13] They're all great tips for all of us, but especially, you know, having that believing in yourself and being able to connect with others. Have you seen and I'm just going to ask this and I don't know, but have you seen any correlation between parents who have higher self-efficacy skills and themselves and their children then like later on as they get into school age? Did you see a positive shift that way? Because I know kids who are one and only in a school or a district because they might be the only child with a cochlear implant or hearing challenges. They can sometimes have lower self esteem or motivation. Do you see any correlation between the parenting part and the child part?
Ivette : [00:25:05] Yeah, absolutely. And this is more just thinking about the general psychology literature. Is that how we behave, how we function as a parent directly affects our kids. Right. So this is why it's important. And I always say if you are struggling as a parent, don't be afraid to ask for help. Right. Ask one of your providers, ask your your your PCP, your physician for help, because parents who are more anxious have children who have experienced more anxiety. So the same thing when we think about the positive skills. If you're a confident parent and you kind of are not one that's afraid to try new things, guess what? Your kid is going to do the same thing. They're not going to be afraid of trying things. And that's a very important skill for our kids with hearing loss of we have to teach them that we all make mistakes and everything is not going to come out of our words perfectly or we might not maybe make the best choices. And so sharing those same opportunities with your kids is really, really important, as well as just using a lot of emotional vocabulary, right? We don't do that. But that's something I'm very, I think, conscious of, even with my own children, of if they notice that I'm not in a good mood, I'm like, Yeah, it's talking about those things of why Mommy felt this way, or maybe why Mommy reacted in a certain way. And also just to share with them that it's okay to try things and it's okay if you you make a mistake. And all of those things I do think are really important, especially for our population, because it is a little bit more harder for them. And I think that the more that parents can share with them their confidence and their self esteem, then the higher the chance that the kids will also have those skills as they're growing up.
Carrie: [00:26:59] Yeah, that makes a lot of sense because I could, like you said, have a harder time with that and that incidental learning is harder, which all of that kind of translates into the pragmatics and emotional development. So to be able to teach our kids some of that vocabulary and talking them through those moments, they they learn to develop those skills as well. So I know you're pretty unique down in Miami. And you said that usually at conferences you'll be the only psychologist there, one of the only few. And how how do you expand you everywhere? What advice do you give to different centers?
Ivette: [00:27:46] Yeah. So that is probably one of the most common questions I asked, like, how can we clone you? Or can we take you? Can we take you with us? You know, and I'm super proud of of of what I kind of have been able to accomplish in a short amount of time and in being the field. And I've been, you know, as a faculty member with the University of Miami going on 12 years. But, you know, my interest, right, of of noticing that there actually was an auditory oral preschool across the medical campus that no psychologist was going into. I wanted to walk through that door and I was bold enough to walk in and say, hey, I'm a psychologist, can I help out? And it really started from there. So I always say, if you have a trainee that's interested, take them, take them into your clinic. And that's actually what I'm doing is I've been very lucky that as a faculty member I do have access to psychology trainees and so I have practicum students. I now accept also pediatric psychology interns into our department in our program so I can train them in hearing loss and all of the things that actually we don't get specific training as a psychologist, but then they have the right tools in their toolbox. So if they interact with that population and wherever they they end up, then they'll know what to do. Right. I say, I always tell them, you might not know everything you need to do, but at least if you know the right first steps or who to reach out to, then you're in a better place. And to. One of the things that I've done, too, is, is making more connections with my community and community psychologists, because I can't see everybody myself.
Ivette: [00:29:36] But, you know, I've started to kind of reduce some of that stigma of what it is to provide mental health services for this population. And so what I do is as much as I can go out and present at different conferences, whether it's cochlear implants or educator conferences that are very rewarding. And I've been able I recently came back from one in Indianapolis. I did one in Indiana, all of those. Right, to kind of also help educators and people that are more likely going to interact with this population, making sure they feel comfortable in assessing and getting these kids to the right place. So if you're interested, I'm always willing to kind of have those conversations. How do you start it off? Like I started myself, but now there's myself and I was able to hire another psychologist on the team. So now there's two. Plus, I was able to start off with a part time social worker, and now I showed the benefit to our chairman and to our department. And so now I have a full time social worker. So same thing with our educational specialist. And so sometimes we start small and you got to capture data and show the benefits and how you're helping those families. So that way you can expand your program. So it's not easy at first, but it's really rewarding. And if you track your data and track the benefits in terms of the outcomes of the families and children you serve, I promise you're going to able to to expand them, to be able to really offer this comprehensive and multidisciplinary team to all the families you serve, whether you're in clinical practice or whether you're in a school setting.
Carrie: [00:31:21] That's great. Yes, I, I know that I work with a lot of school psychologists and they always comment that this was definitely not an area that they received a lot of training and a background in. And when they do have a student who is deaf or hard of hearing, they don't always know what tools to utilize to assess and help make a plan.
Ivette: [00:31:49] Yes. So if any administrators are out there, you know, from the educational system, I am willing to do trainings for your school psychologist. I always find that it is a very difficult area and sometimes I'm surprised when I review reports and maybe I don't agree, but I can't blame my school psychologist because like I said, even as a clinical psychologist, I did not get any specific training. So we need to be offering school psychologists, educators the training so they can really use the right tools and assessments to be monitoring progress in this population.
Carrie: [00:32:27] And do you have certain tools that you point or resources that you typically point to school psychologist or the clinical psychologist to if they are going to be working with this population?
Ivette: [00:32:42] Yeah. So I mean, definitely when we're talking about, you know, the psycho educational evaluations to kind of see how our children are functioning, you know, depending on the child, how they're doing, you know, we might want to do non verbal IQ measures like a LITER, right? But then that's not always appropriate because our kids are expected to function in a mainstream setting. And so that's not sometimes very useful in saying how our kids are going to do. So then I will do more of your traditional WISC assessment. And so sometimes you need to know how to interpret both of those to kind of know what kind of goals for that child for academic performance. My you know, my preference is still using the Wechsler the WYAT in looking at how those kids are doing. And then depending on that, I do use a range of self report or parent and teacher report forms that are really helpful. And my, my, my approach is that I shouldn't be comparing them to a deaf and hard of hearing population. I should be comparing them to hearing children because that is the expectation of a large population of our children. Like you mentioned earlier, they're in the mainstream class. And so we need to make sure that we can get them functioning like that. And if they're not, what are those additional maybe positive behavioral supports that we can incorporate in into schools that's going to help them? So I like to use the BASC. I like to sometimes add and look at executive functioning since that is one of our areas that our kids struggle in terms of their working memory, their processing speed. But what I'm finding is that these things are not being assessed in a in a in a way that we know how to identify it early and we end up being a little bit more reactive. And so we're waiting to our kids struggle before we intervene when really we should be tapping this a lot earlier. So that way they're not at the point where then they're struggling or doing poorly academically before we intervene.
Carrie [00:34:48] Yeah, that's a great point because I feel like a lot of our kids who are deaf and hard of hearing, especially if they've had the early intervention, the receptive and expressive skills look really good, but they have that swiss cheese of having different, you know, executive functioning skills that are lacking and things like that that maybe we're not taking a deeper dive into. And that is why they might not be progressing at the rate that we that they might be able to at the potential that they might be able to.
Ivette : [00:35:20] Absolutely. You know, I think sometimes. Right. We are not setting high enough standards for our kids. And they they should be performing. They can do it. And so I think the field has definitely moved from so much of the focus of the auditory piece and the language piece, which we've done a lot better about. But now we really need to be focusing on more of these functional outcomes, like I say, and looking at academically and their transition to being independent adults and all of these things that are really, really important. And the earlier we start to have those conversations and helping our children, the better that they're going to do in the long run.
Carrie: [00:36:01] Yes. That's that's all good information. So from a psychologist lens. Do you have like five main takeaways that you would like to share with our listeners today if they. I don't know. I just feel like this need to be such a part of every cochlear implant team and community like the whole child, like you said, educationally, community, parenting, you know, home as well as the cochlear implant team. So I was I thought I would ask you if you have some takeaways that might be helpful for our listeners.
Ivette [00:36:37] Yeah, well, that's a that's a tough one. But let's see. So I'm going to give a I'll try it out. But I think my biggest one is, if you are, let's say, as part of a team, a clinical team or an educator team at school, don't let the administrators tell you you can't have access to all of these professionals. There is a way. Maybe it is not a full time person, right? Maybe it is working with another department or another division. But I would say do not give up in terms of getting these qualified professionals and these multidisciplinary professionals. Right. We all need to make sure that if your child if you're you're working with a with a family has hearing loss or if you're a parent of a child with hearing loss, that you have access to all of these professionals and providers if you need it. It doesn't mean you always need to have the psychologist, but or a social worker or educator. But there might be stages and times that you need them and you should be able to have access, so don't give up on it. And so if you're an educator, don't be afraid to ask your administrator for them. And if you're a parent and need access, don't be afraid to talk to your provider, your team.
Ivette: [00:37:53] Right. You're hearing loss team and say, I need help with these areas. Who can you get me in touch with in the in the field? And so I think that would be my biggest one of we need to be asking for more and it is possible don't be afraid to ask for things because if you don't ask for it, it's never going to happen. And I was surprised. I'm going to say I was surprised of how quickly I was able to get these people. Once you show the true benefit, get those patient anecdotal right quotes of how helpful those team members are. So that way you have that for the future to make a case for maybe having somebody more full time. For my educators out there, you know, my school psychologist is if you don't feel comfortable or feel like you don't have the training is to ask for that. There are people out there, there are more than me right out there and that we could do some of these trainings, even though we might be in a different state. We can now use what we've all learned due to COVID. That's the positive part of COVID, is that we've all done very well about doing Zoom trainings. And so now you have more access right into people around the nation, around the world that maybe could provide some of this training.
Ivette: [00:39:08] So we're doing a better job about monitoring these kids. And for my families out there is to realize you're not alone, realize how amazing you are. You are a champion for your children. And we've got to believe more in ourselves and know that you're there and you're doing the best that you can. And if you need help, don't be afraid to ask for it. There is somebody there who's gone through your experience. You're not alone in this journey and speak up because I am sure that you're amazing audiologists. You're amazing hearing health providers. The team that you're working with could put you in contact with someone that will help guide you if you need that support. And there's a lot of organizations out there, right? There's a lot of Hands and Voices. There's AG Bell, there's the American Cochlear Implant Alliance, where if you can't find a provider in your area because it could happen, then we could still link you up with one of these amazing organizations that have parent groups and different resources that you could have to your disposal to help navigate what you're going through, because there's a lot of really, really nice resources out there.
Carrie : [00:40:28] But there are there are great tips for both families, education specialist and then clinical providers as well. Is there anything that I didn't ask you that you were like, I really want to share about this with my research or my clinical experience?
Ivette : [00:40:49] You know, I think you I mean, I think you pretty much covered it. I probably can just stay here talking to you for like hours. But I think the main thing is, you know, we have to stop using mental health and as a stigma. Right. There's a lot of that in out there. There's a lot of stress. Right. That that just is part of living in our community, living our society. And luckily, we have a lot more resources out there. So I think everybody if there's one thing I want to get out there is that, again, like I've said, you're not alone. There's a lot of people experiencing it and there's ups and downs, right? That happens. And we want to make sure that we're talking more about these areas. So that way parents know what to do, providers know what to do. And I'm just happy that that my research. Right. Has started to just open up some of those conversations. And so I love to hear, you know, when I go to these conferences, it's I'm not the only one talking about these things anymore. And that's great to me. That's that's really important to see or to just see the the interest about these areas. And the more we talk about it, the better we're going to be able to do to be able to identify who really needs help in terms of these areas. And also then that's going to lead to more effective interventions that are available out there. So I really, really appreciate, Carrie, you inviting me to kind of talk about these things. And I'm happy to to provide more for listeners if they're if they're interested in reading a little bit more about my work.
Carrie: [00:42:30] And if they are interested, how do they get ahold of you?
Ivette: [00:42:34] Yeah. So let's see. So probably the best way is, I guess my email address and I promise to try and respond as quickly as I can. But if you're interested in any of the articles or chapters that I've written on some of these topics, I'm more than happy to share. So my email addresses, I say this and I'll spell that out. That is I as in ice cream C as in cat E as an elephant J As in Jack A as an apple and S as in Sam at med which is m e d dot Miami dot edu. So you can feel free to reach out there. I also, you know, do a lot with from my academic side on Twitter. So I do have Twitter. I think it's Ivette Cejas pretty easy just my name out there and so feel free to kind of reach out. We also have an Instagram page for our children's hearing program that we actually post different topics about these things and mental health tips and LSL tips so that Instagram account for our U. Health Children's Hearing program is @ children's hearing program.
Ivette: [00:43:49] So very simple. And so you can reach out in any of those ways if you have a question or you're interested in any of our resources. And then, of course, I know the listeners are from everywhere, but if you're interested in reaching out to our actual UHealth children's hearing program for an appointment or anything along those lines, we actually are very fortunate that we have a nice organization that we could we have a hearing aid loaner bank. So if you can't afford hearing aids, we have a cochlear implant loaner bank. If you cannot afford your repairs through our children's hearing program and we actually help to sometimes do pro bono cochlear implant surgeries if you cannot afford it and you don't have insurance through our children's hearing programs. So if you're interested in an appointment to kind of see if you're a candidate and not sure if you can afford it, don't be afraid to call us. It is at 305-243-1110. And we will make sure that we can get you resources so that you can get the hearing care that you need.
Carrie: [00:45:00] Wow. That is amazing. Thank you for sharing all of that. And I will make sure that I link some of your contact information in the show notes so people can also just click on that and be able to reach out to you as well. But I want to say thank you. And that, again, for being part of the EmpowEAR Audiology podcast. Your perspective as a psychologist is so important for the whole child and for the whole team and and family. And it's such an important part of probably one of the most important parts of that cochlear implant process is how do we emotionally deal with some of the stressors that really do come up along the way with our families. And then again, that translates to our kids and we want to have successful kids as well. So thank you again for sharing all of your research and your knowledge and your updated of the different surveys that you have for stressors that people can utilize those in their own practice and hopefully build some very effective self efficacy skills and help families that way as well. So again, thank you for being a part of it today and I appreciate you coming on.
Ivette: [00:46:19] Thank you so much, Carrie.
 [00:46:21] This has been a production of the Three C Digital Media Network.

Episode 44: empowEAR Audiology - Lynn Wood

[00:00:00] Announcer: Welcome to episode 44 of empowEAR Audiology with Dr. Carrie Spangler.
[00:00:16] Carrie: Welcome to the empowEAR Audiology podcast, which is part of the 3C Digital Media Network. My name is Dr. Carrie Spangler, and I am your host. I am a passionate audiologist with a lifelong journey of living with hearing challenges in this vibrant hearing world. This podcast is for professionals, parents, individuals with hearing challenges and those who want to be inspired.
[00:00:45] Thank you for listening and I hope you will subscribe, invite others to listen and leave me a positive review. I also wanted to invite all of you to visit and engage in the conversation on the empowEAR Audiology Facebook group.Ttranscripts for each episode can be found at www dot three, the number three, C digital media network dot com under the empowEAR podcast tab.
[00:01:19] Now let's get started with today's episode. Welcome to the empowEAR Audiology podcast. I am really excited today to have a guest with me, who I have actually known for quite some time. And we're gonna get into that today in the podcast. But before I have her come on, I'm gonna read a little bio.
[00:01:40] And today I have Lynn wood with me. She is a listening and spoken language specialist, certified auditory verbal therapist. And she is nationally recognized. With over 35 years of experience, she is an audiologist by degree and specializes in pediatric listening and spoken language auditory verbal therapy, post cochlear implant, auditory rehab for adults and kids and therapy for individuals with auditory processing needs.
[00:02:12] Lynn is the founder of the Auditory Verbal Center of Wheaton, Illinois, and was one of the first audiologists to open a practice devoted, exclusively to auditory rehabilitation. Lynn author's evidence based LSL resources, including Listen with Lynn which is her online store that offers downloadable tools, games, and activities for children, their families, and the professionals who guide them.
[00:02:42] Lynn, welcome to the empowEAR Audiology podcast
[00:02:44] Lynn: Thank you, Carrie. Thanks for having me. It was fun. Reminiscing, a little bit about our past a few minutes ago. So I'm happy to chat with you and your audience today.
[00:02:58] Carrie: Yes. Well, thanks for being here. And I thought since you brought up my past we were talking a little bit before we went live today about the long history that we have together and that you had lived in Ohio for some time where I live and I thought it would be fun for our audience to.
[00:03:19] Hear a little bit about our memory lane that we have together. Do you wanna start
[00:03:23] Lynn: Sure, sure, sure. I actually, maybe I'll back up a little bit about my history and then how I actually met you. So I am a graduate of the University of Akron with a degree in audiology and one of my early jobs after, after graduating with my master's was at Lichfield rehab center.
[00:03:43] and that's where I met Carrie and her mom. The very first time I know I was involved with your dad. I know your parents were both so great advocates for you, but it's been a long time. We don't want anybody to add up the years there or whatever like that, but just a couple minutes ago, Carrie, it was so fun.
[00:04:00] You actually pulled out a folder with your name with records that I had tested your hearing change, your hearing aids give you all sorts of resources. So that's part, I didn't remember from what you had said, but you know, I, I do remember meeting you at Litchfield rehab center and I forgot how old you were.
[00:04:22] I did know that you had a bilateral hearing loss. I remember testing you. And I was so surprised to see, honestly, your precipitous high frequency hearing loss, how it really sloped down. And I think I'd mostly seen the kind of configuration probably back in textbooks then. So and it's sort of, I remember you were diagnosed a little late.
[00:04:44] If I remember what four or five. I was four. It's no wonder. Four that I'm sure you were bright, like you are now. And even with a speech and language delay, just that good, low frequency hearing could really fool a lot of people, I guess, type of thing. But we were just looking at a couple of your audiograms and I know I talked about the Ling five sound tasks.
[00:05:08] if people even remember what that was. Before that's when Dan was still living and before we had the capacity to get out to even that S and things like that. But I remember talking to your parents about changing your hearing aids, and I'm almost sure we went ahead and gave you acoustically tuned ear molds.
[00:05:27] I don't think you had those ones were libby horns. so I don't know if those were what. The Libby horns or continuous flow adapters were available then. But I do remember after we saw in your audiogram, after making some changes, changing your hearing aids, we could access more of the high frequencies.
[00:05:48] what above a thousand, 2000 there for you, and I'm sure. I always say every DB counts so I'm sure. What was what you needed and things like that. So, but yeah, I, I, I remember you much more as a professional than a lot of those little glimpses when you were little, but what, what happened was I was your audiologist.
[00:06:08] And then my husband and I moved to Chicago, we were transferred with his job. And at that time I sent you then to the University of Akron and Carol Flexer became your audiologist and the rest is history. You guys and us and things like that. So, yeah. Yeah. It's something you wanna add all that or how your life would.
[00:06:32] Different. If you had not met Carol, when you think of all the little elements, they're all meant to be,
[00:06:39] Carrie: they are yes. Full circle. I'm sure when you saw this 12 or 13 year old teenager, who probably wasn't the happiest to be there. you never thought you would be during a podcast with her how many years later?
[00:06:57] Lynn: no kidding. Actually, the older I get, the more strange things I never thought I would do that type of thing, so yeah. Yeah. It's really fun. No, but Carrie, I, I do remember your family. I remember you guys just being. Just like I said, your parents were such good advocates for you and things like that. So not the details, but I remember globally and you have a brother, right.
[00:07:22] That right? I do. I have
[00:07:23] Carrie: a younger brother who was about three and a half years younger than I was. So he might have been tagging along that day too.
[00:07:30] Lynn: Yeah. I'm not sure. Right. Exactly. Exactly. So I, was there anything else you want me to share about that? But I, I do feel, I hopefully made a difference because I remember after going over, I dunno if it's the first time I tested your hearing or whatever, but I remember talking to your mom.
[00:07:46] I think it was, I don't know if your dad was there, but about speech acoustics and about the speech banana and explaining what you were able to hear based on your low frequency hearing and what you were missing based on your high frequency hearing. And I, it was like a light bulb went on for your mom. I mean, she was.
[00:08:09] I don't know where you got your audiology before that services, but it like clicked. It was like, oh, this all makes sense. And I do remember even talking about like, like I said, a little while, no wonder, we didn't know that Carrie had a hearing in loss when she was younger type of thing, but I remember your parents were really thrilled that you were able to course get more hearing based on, you know, improving your, your hearing aids and things like that.
[00:08:34] And I don't. If you wanna share something, you said, I sent you a cute little letter.
[00:08:40] Carrie: oh, you did. So it was funny going through all of the different paperwork and seeing the familiar sounds audiogram and you had it highlighted and for my mom with a, all the good information on there of what I could hear and what I couldn't hear.
[00:08:57] And then, like you said, we decided to try some different hearing aids since the ones that I was wearing, weren't really doing anything. And you know, of course the technology wasn't able to do a lot at that point in time either, but you had written a, a handwritten letter that was just saying, you know, I'm very excited about your new hearing aids and I hope there is helpful as they appear to my office.
[00:09:25] And then you talked about some enclosed information, including. See the handout on Ling five sound test, and how you were able to hear some of these sounds and how optimal hearing aid fittings would allow all of the threshold to be in or above the speech banana range and saying that you would see me in two weeks.
[00:09:47] So,
[00:09:48] Lynn: right. I'm just relieved that as you re you read that it's things that I would probably say again, so. Wasn't wrong back in the day. I'm still, I've still learning and have learned a lot since then, but right. And a lot of like have
[00:10:02] Carrie: changed since then. Right. But then I love the fact that you gave my mom.
[00:10:07] It was a 1986 spring and summer publication for the AG Bell Association. So mm-hmm, , she had some different things start in here. So I wonder if she ended up ordering different publication that happened to be in there. So I'm still looking Dan Ling book in here and that was starred. So she, maybe she did.
[00:10:29] She got the Dan Ling Book.
[00:10:33] Lynn: Yeah, I was a big fan of AG Bell and still am so,
[00:10:37] Carrie: right. Yes. So, and I know we just saw each other virtually for the virtual conference that they have going on and they're still, I, so it's been exactly a history, but going back to just a little bit backwards again, how did you end up finding the field of audiology?
[00:10:59] Lynn: Okay. Hmm. Well, I didn't really set out to be an audiologist or of course, an auditory verbal therapist. I went to the University of Akron, like we talked about and I, a friend at I think it was the lunch area. I forget the cafeteria happened to mention a friend of friends that she was taking a class called intro to speech disorders.
[00:11:22] It sounded so interesting. I signed up for that course. I think it was the next quarter or semester. And I was hooked. I took that class. Didn't know where it was gonna lead, but I changed all my classes, my sciences, everything to, to steer me to speech and hearing at that point type of thing. But I guess if I could go a little deeper than that.
[00:11:44] So I was in the field. I think at that time I was probably thinking more of speech pathology. but I was working at the speech and hearing clinic as a student there at the university and the family that we both know had a toddler with a profound hearing loss. And that mom asked my clinic supervisor if I would work with their daughter to help her learn listening and spoken language.
[00:12:10] But my supervisor who I remember as clear as day told me that children who were deaf and hard of hearing could not learn to listen and speak. And the family was probably in denial. What is the most surprising about that story To me is I was a student and I ignored my supervisor. I don't even know how that transpired, but I put my faith in this family who in turn.
[00:12:36] Introduced me to pioneers of auditory verbal Doreen Pollock and Helen Bebe. So, you know, I'm down that path and the next Carol Flexer comes the university with her background in pediatrics and auditory verbal. And Carol then became my undergraduate professor, my graduate professor and my clinical supervisor and my friend, like she is yours today type of thing.
[00:13:00] But that really took me down the track of, you know, I don't think, I would've been able to tell you probably any of those things about the speech banana on and on like that down the line a few years without her input, because it was a lot different than I has was learning before she arrived. But yeah, I was.
[00:13:19] Carol's graduate assistant for two years. And then she really took me under her wings. I'm sure. When I was at Litchfield rehab where I saw you early in my career, she was my CFY supervisor. And then I was ready to sit for the auditory verbal certification exam. The very first time was offered in 1994. So yeah, so, you know, It's not the path that I would've ever dreamed of.
[00:13:44] I don't know what I would've done, but I'm sure this is what, you know, I, I love what I do and I'm passionate about it, but I'm just thankful for all the professionals, the families that I've been able to stand on their shoulders and all that knowledge that I've learned over the years, I feel like I've been able to pass along to countless family.
[00:14:04] Today and, you know, over the years and things like that. So I love a good story and how things start and where you end up.
[00:14:12] Carrie: right. Yeah. So it sounded like Dr. Flexer came to the University of Akron at just a pivotal point in your, exactly, exactly audiology career path
[00:14:23] Lynn: path. Right. Right. I know. When I first started working with her, I was also working in something called deaf nursery.
[00:14:33] And I don't wanna get into all that, but my experience with deaf nursery and then when Carol was my supervisor, they were very different approaches. I mean, just not using hearing at all type of thing. so and at that time also the university, the sort of the other people like my supervisor didn't think what was happening was go was possible.
[00:14:54] so. Shortly. He had more children that came to the clinic, just even the little bit of time that I was there. And of course, audit university of Akron known as a fabulous auditory verbal and audiology program. So, yeah. Yeah. And I had other great professors too type of thing, but yeah.
[00:15:11] Carrie: That is yeah.
[00:15:12] Exciting to hear that background backstory and to see that , you're still very invested in the field, especially rehab or, you know, listening and spoken language. Sure. audiology part as well. Right. And which is kind of brings me to my next question, because I think a lot of audiologists think about going into more a clinic.
[00:15:37] You know, working with, you know, cochlear implant, assistive technology, hearing, hearing aids, that kind of thing. But don't really think about the rehab aspect of audiology. And when I was reading your bio for all of our listeners, I mentioned that you were one of the first audiologists to really have a practice devoted to auditory rehab.
[00:16:00] Can you share just a little. Bit more about what you do as a rehab audiologist and how that's, how you kind of steer that way instead of more on that clinical side. Sure,
[00:16:13] Lynn: sure. I'll be, that's a whole story how I got involved that way, but I'll just really brief. I moved from Akron, Ohio to Chicago area.
[00:16:22] I started out in a clinic as a clinical audiologist. but I had done privately and at the hospital, auditory rehab, auditory verbal therapy in Ohio. And I thought, how will I ever start this in Illinois? So I really didn't even that wasn't even on my radar down. I'll skip to ad basically I ended up picking up many children.
[00:16:45] I was working at, I was, I had a two year old, but I was working part-time as an audiologist. I started seeing kids at my kitchen table, actually, Dan Ling, Mary Erb, I sent me kids and then I started diagnosing a few kids in my practice. And in no time I was. When I was at the clinic, only testing kids, I saw for therapy and I was stretched too thin.
[00:17:09] I wasn't really helping them. And we were at a, again, Dan Ling a conference here in Chicago. Dan Ling spoke and parents came with me afterwards and said, we need you to be full-time with our kids. And I took that big leap of faith and started off in my own type of thing. So, and it was a, you know, I was first working out of my home before we built, you know, where I am now and things like that.
[00:17:36] So, but that's sort of how I got started, but I think you wanted to know how, how audiologists maybe made that transition or what the difference is, but. I guess audiologists, as you know, specialize in diagnosis, hearing problems, you know, balance problems, but auditory rehab falls under that umbrella too.
[00:17:56] But honestly, clinical audiologists really don't have the time or the materials necessary in, in a clinic situation or hospital to provide auditory rehab. So and I guess I'd have to say most of the people. Over the years that I've seen adults that seek auditory rehab are usually discouraged or upset or depressed.
[00:18:21] A lot of them thought the cochlear implant. If that's what it was, was gonna be the last step in their journey. And they were all set and the information that was able to be provided to them in the clinic situation just really wasn't enough. A quote that I've quoted for years and I've told families was from Dr.
[00:18:37] Richard Miyamoto. He's from Indianapolis, an early implant surgeon. He would say cochlea implants are cochlear implant. Success is 10% the cochlea implant and 90% the user's input, which would be auditory rehab, or 10% hardware and 90% software. Have you heard that quote before Carrie? I have not
[00:19:01] Carrie: heard that quote directly, but I 100% agree with it.
[00:19:05] Lynn: exactly. So, and you can extrapolate that to somebody getting hearing aids, but the same thing I've used that with families of little children. So you can hang hearing aids on a child's ear, but if you don't do anything with them, it's not gonna make any difference or whatever. But so anyhow, those are the people that have come to see me.
[00:19:25] Those are people that aren't happy, they're discouraged or whatever like that. but you know, people find out that auditory rehab does enhance their ability to enjoy social events, understand conversations, many use the phone. Listen, enjoy music. I know you got rehab right after you got your implant. I
[00:19:44] Carrie: did with Dr.
[00:19:45] Dr Denise Wray, who is another common
[00:19:48] Lynn: friend colleague. Yes, exactly. A good, good professor of mine, too. Type of thing, a clinic supervisor. But I would say still to this day. Many people asked me why auditor auditory rehab was not recommended for them, why they got implanted and then why they have to sort of do the search and find out, you know, the hard way I actually spoke at our ALDA meeting, which is a cochlear implant club here in Chicago a couple weeks ago.
[00:20:18] And so, but the people didn't know that was possible. And. Had a lot of questions cuz people are happier once they find out and you know, their life is easier once we can work with some of those skills. so I would have to say auditory rehab is a underutilized service and things like that. So I, I know you alluded to me being an auditory rehab audiologist.
[00:20:43] And I sort of wanted to say real quick. If I could sidetrack a minute a real good friend of mine Karen Rockwell Vivian, I don't know if you know who that is. She's been gone about 10 years. She was much younger than she should have been, but she was also an audiologist by degree that practiced auditory verbal therapy in California.
[00:21:03] And we met at an auditory verbal international conference years ago. and Karen was using the term auditory or rehab audiologist. And that really clicked. We were doing basically the same thing, audiologist, but then, you know, especially with that. So that's where really I came up with that term. I don't know if too many other people use it, but it does.
[00:21:26] Show re an audiologist by training, but what I'm really doing type of thing. And just a little tidbit, Karen, for all the people that are certified LSL specialists. Now it was really Karen. She was a huge pioneer in the auditory verbal international certification that led to the AG Bell certifications now so she I, I was able to work with her eight years.
[00:21:52] Two, two terms on the certification council were auditory, verbal international, but just, I can. Hard hardly say, sorry, what that is about without I'm sorry. I thought that was turned off without bringing her up type of thing. So yeah. Yeah. If that actually that was an auditory verbal therapist calling me
[00:22:15] Carrie: on the mind.
[00:22:16] Right?
[00:22:18] Lynn: Exactly. Some if that answered your question, but that's it
[00:22:21] Carrie: does, but I think in our, you know, audiology world, Profession. That is definitely an under we, we don't put. As a very important part of the process. It's not stressed as much. And, you know, being on the patient side as well as the professional side, especially in the last couple of years and going through the cochlea implant process myself.
[00:22:50] What you just said about adults and, and needing to, you know, have that offered to them. And, and I think expected of them, if they're going through the cochlear implant process it almost should just be mandatory in this sense, right. To help because it is like learning a new language. When you get a cochlear implant, it sounds so different than what you know, acoustic sounds like.
[00:23:17] Right. And I could see how you would get discouraged or upset or mad or depressed if you didn't have someone coaching you along the way to go through. Right. That listening process of to get right, you know, to good use of, of
[00:23:36] Lynn: an implant. And truly what I said, most of the people that come are coming because they're frustrated.
[00:23:44] Mm-hmm, , they're not happy, but oh my goodness. There. Even in, you know, because I understand like the auditory hierarchy and how to make things very acoustically different in one session, I can give them very acoustically different things to listen to, and they usually can count the beats or tell the different duration.
[00:24:05] And there are like, oh, I can hear mm-hmm I can hear with this type of thing, not that they're anywhere, but. Some people really only need a couple sessions to get them on the path. Some people have a lot of questions that in a clinic situation, you don't have time to answer. or part of it can be some people really need They're I usually, I always ask for if possible, significant others to come and have them come with us and they learn, oh, how do you use clear speech, how to change the environment.
[00:24:37] So there's so much counseling involved besides. The we'll say exercises and training. We do. So, you know, I, I think auditory rehab is the co it's the device, it's the counseling, it's the auditory training. It's what are the situations in changing the environment? And then the people that they talk to, is it the listener?
[00:24:58] Is it the speaker, things like that. So, it's actually a lot of fun and it's so fun to see. Improve because the technology for example is awesome. Once you tap into it and maximize it., it's really cool. It's really fun. Exactly.
[00:25:15] Carrie: Yeah. Well, I'm so glad you have a passion for it, and you've been able to grow your practice so much over the years.
[00:25:23] Lynn: Thanks. And
[00:25:24] Carrie: you do have your own practice, like you've mentioned before. And you mentioned that you do auditory verbal therapy, you do auditory rehab and you do auditory processing therapy. Are you able to explain to the listeners a little bit, like maybe the difference between those three types of therapies?
[00:25:42] Lynn:
[00:25:43] Sure. Sure. Exactly. So auditory verbal therapy I'd say is the heart of my practice and I've centered or specialized that for about 35 years. It's family centered therapy or caregivers and listen and spoken language or LSL is the approach that I use that focuses on teaching children who are deaf or hard of hearing to listen and talk.
[00:26:07] And. and it's based on auditory, verbal practice. So we guide and coach families to help them teach the children to listen. And. So that's very simple type of thing. Mm-hmm that auditory rehab is what we just talked about, and that is for, or to improve communication ability of those who usually adults who've lost their hearing or become hard of hearing once they develop spoken language.
[00:26:38] So auditory verbal, we call prelingual before speech. Auditory rehab is they had something and lost it post speech, but that's also common for maybe a child or, or an older child or teenager who has maybe has a precipitous hearing loss or gets implanted at 10 or 12. They have language. So that is the.
[00:27:01] Type of thing. And then auditory processing therapy. So we hear a lot about that. I know you're in the school. So you hear much about that. So the sessions target and remediate, like the impaired auditory skills, I try to teach compensatory strategies, assist families and teachers in managing Auditory processing disorders.
[00:27:24] Many times, those are individuals who are later elementary, middle school kids. We've already had their hearing tested. We make sure their hearing's tested to rule out hearing loss. They have a whole auditory processing battery of tests and comprehensive medical and educational history. And then once
[00:27:45] Auditory processing diagnosis is confirmed. Then we can begin hear hearing therapy. And what I'd say is a little bit different over with experienced so many providers that provide auditory processing therapy, really focus on visual strategies to compensate. They say, oh, you can't do this very well. Well, here's some visual things that you can compensate.
[00:28:11] I have found a lot of success is really working on and building their auditory skills. Mm-hmm I use similar strategies that I do in auditory, verbal practice. And quite honestly, I've had excellent outcomes with that. So yeah, I mean, it's lots times auditory discrimination, auditory memory, lots of things.
[00:28:30] But way back when I knew that I could not do any everything I could not, nobody can be a test here and be a clinical audiologist do with that technology and do therapy. So I have chosen to specialize in those three areas and it's worked .
[00:28:47] Carrie: Yeah, it definitely has. And I'm sure, you know, you've seen. many leaps and bounds in the last 30 some years, too, with how you provide therapy.
[00:29:00] And like you said, everything's always been auditory, but you probably see a big difference now with the technology piece and, and how the outcomes happen to be
[00:29:11] Lynn: mm-hmm yeah, I'm actually really glad that I was in the era that I was able. Work on spoken language before implants. Of course, I love everything about the great hearing technology, but I feel.
[00:29:26] My skills are, I don't know, deeper because I had to squeak everything out of every little decible and parents had to work so hard. And yeah, that was difficult. We have so many successful people like you and things like that. But I do when I mentor some younger people in the field and they have, I don't know what to do with this child.
[00:29:48] We're waiting for a cochlear implant and it's like, wait, there's so much that you could do. But that, you know, I think that. Some of that helps with wisdom and
[00:29:58] Carrie: right. You know, and like you said, every little decibel can count. Right.
[00:30:03] Lynn: right. Right. Exactly. Exactly.
[00:30:06] Carrie: What would it look like now if for your auditory verbal practice, if a family comes to you and how does that, you know, set up look
[00:30:18] Carrie: Look, do they come to, to your kitchen table? And
[00:30:22] Lynn: no no, no, that doesn't no. Yeah. So basically when I see families now So are we talking about, well, we're talking about children,
[00:30:32] Carrie: right? Yeah. Like a, like a new, like babies infants toddlers.
[00:30:37] Lynn: Sure. Yeah. Okay. Okay. Well, first of all, it's a lot of fun. We do a lot of playing.
[00:30:42] So it is very much play based, but we have very strong goals that we write and, and things that I sort of be beyond the scope, but I guess I would say. When children get a little bit older preschoolers, they're always surprised when they find out at some point that, oh, auditory verbal therapy is Lynn's job, not just a play date.
[00:31:02] so, you know, it's a lot of fun, but what I really do is, so if you would have somebody, you know, I have a child come to me. I always partner with the child's team of professionals. So that would be since I don't do the testing, their pediatric audiologist, any medical specialists. Other interventions as the child get a little bit older preschool and school aged teachers.
[00:31:26] And then we, you know, I work with them through the, through if it's the diagnosis, if it's the fitting of the advanced hearing technology and work with them through that journey of learning to listen and talk. So the team is a big part of auditory verbal therapy. And then I guess maybe the biggest, I don't know if you'd say that would be coaching the families.
[00:31:48] I coach families, how to be their child's first and best teacher. There's nothing that happens magical in one hour of seeing a little a week. It's all about what happens at home. So my job is to guide and coach them. So families and caregivers attend the sessions and we work closely together. I model listening and spoken language strategies and techniques, and then how to incorporate them into daily activities to build listening and spoken language skills.
[00:32:18] Now, of course, that gets more specific with older children. And I don't always start with children that are babies. I may have from lots of different reasons, maybe a third grader come, but they still need to work on auditory skills. Pivotal is the parent or caregivers always involved type of thing.
[00:32:38] And then I support families. You. They may be gone from here years ago, but they can always call me or talk to me or, you know, I I'm, I'm in touch with a lot of families and kids and things like that for years that attended therapy, just like you and me. right. I actually have a, a sort of a fun story to share about that.
[00:32:59] If, if you have
[00:33:00] Carrie: a second. Yeah. I would love to hear it
[00:33:01] Lynn: Okay. Okay. So I started seeing a little girl Megan, about when she was under two, she was from Wheaton here. I didn't tell you about my office. I'll need to tell you that. But started seeing Megan and kept in touch with her for all these years.
[00:33:15] She's in her early thirties now. And to my surprise, Megan and her fiance, Sam got on zoom with me a couple A year and a half ago. And to my surprise, very much surprise. They asked if I would get ordained and marry them. and I was like, marry you but Stan made a big, wonderful point then thank me and said if it wasn't for Megan, I guess meeting me, but whoever learning to listen and talk.
[00:33:45] They would never be together. so their wedding was in April. It was beautiful and it was a privilege. And so I married Megan and Sam. So I guess you could talk about, talk about supporting families. That's sort of through right there, type of thing. So, yeah, yeah, yeah. And then you asked. Another big part of my practice, especially today is teletherapy.
[00:34:11] Carrie: Oh yes. I was gonna ask about that too
[00:34:12] Lynn: Right. So I have provided teletherapy for a long time. For years. I first started with families. I saw in my practice and then they moved. So I sort of continued them sort of before teletherapy was, was popular or whatever, but then. You know, I've seen some for teletherapy, but then once a pandemic, of course, like everybody else, I saw all my families and adults remotely, and I feel like teletherapy really has creates an opportunity to maximize for children, their hearing in their own environment and build confidence and understanding.
[00:34:49] I'm sort of like a little bird on the wall , you know, that the, the families have to work with their child and we go over those things. Before our session and things like that. But the interesting thing is after the pandemic started letting up a lot of my people came back and I started seeing them in person.
[00:35:08] But do you know, almost everybody. Almost everybody has now chosen to go back to teletherapy and it's effective. I mean, when I think so I live in Chicago land, which is, you know, an area that people have to drive. Think of the times the parents, you're not getting your toddler ready in the car. You're not driving.
[00:35:28] There's a lot of stress involved in that. . And then, like I said, it works really good because I'm in their own home environment and things like that. And you know, I'm doing adults the same way over teletherapy. In fact, a couple months ago, I started with an 89 year old woman who recently got implanted and she has mobility issues.
[00:35:48] So when her daughter called me and things like that, we talked about teletherapy. So now her daughter goes to her home signs on and we connect online and teletherapy is perfect, you know, and I believe it's here to stay. I feel that is really going to be a The wave of the future and it is already type of thing.
[00:36:08] But that lady who I spoke of, she was one of the ones that parent, the daughter called and said, mom can't hear anything. She's been implant six months. She has no idea what's going on. They used a whiteboard to connect with her and my goodness. There were a few things we did that first session. One of the things was very basic.
[00:36:31] What we do with babies, take a listing, walk around your house, see if you can hear the water running, you know, on and on like that. So from one session, can't hear anything to that next session. The daughter filed up. She, she goes, oh, I hear everything. I hear the microwave. I hear, I, my daughter, we get in the car, I hear the blinker of the turn signal.
[00:36:54] and the refrigerator and, you know, on and on like that. So it just shows just with the right coaching and expectations, lots a lot can be done and things like that. So. Wow. Yeah. Was there something else you wanted to ask me about? Oh, no. I, I mean, I'm glad you
[00:37:11] Carrie: brought up the teletherapy because I feel like.
[00:37:15] For your specialty of a listening and spoken language specialist. There's not that many of you, there needs to be more right. And like you said, people will drive for hours if they have to, in order to see someone. So to be able to do that type of therapy remotely, as well as in person has probably opened up the doors for, you know, the consumers or families to take advantage of it.
[00:37:43] Lynn: Right. That's what I said. I mean, Really things are so much easier than I used to be. And I don't need to be like the old, but when you asked me, when I first moved to Illinois, my first two patients, Dan Ling sent one, and they were from way Southern Illinois. They would come on Friday night, stay at a hotel near me.
[00:38:02] I'd see him that evening, Friday night for a little bit and they'd come. And I, I think I saw him for like three hours Saturday morning, and then they'd get back and drive and then. I had another little girl that moved from Denver had done auditory verbal. And she lived in Wisconsin, which is of course, north of Chicago here.
[00:38:20] And she would, parents would drive her down after school. So people will do whatever they can to make, to work with their child. And that's how then when I started getting more local kids, it was not very long of time at all. That I knew I really needed to, like you said, there's a huge need still today and thankful there's about a thousand LSL certified people.
[00:38:43] I think that's in the United States. I'm trying to remember the statistics, but. Is getting better.
[00:38:48] Carrie: It is getting better. But when you think about the number of kids with implants and, and, and then if you count the adult population that needs to have, or should have some of the auditory rehab, then that is another person that can provide that tool.
[00:39:07] Exactly.
[00:39:08] Lynn: Exactly. Exactly.
[00:39:11] Carrie: So one other kind of switching gears a little bit, I know that you are very creative and you are very artistic and you have great ideas as well. And no, you do. I, I know you've always have these incredible resources and tools and in 2019 you launched what is called Listen with Lynn.
[00:39:35] Do you mind sharing with the audience a little bit about Listen with Lynn.
[00:39:40] Lynn: Sure, sure. I'd love to, I'm passionate about that too. So I feel Listen with Lynn is their resources or materials that combine my love for knowledge and research and my passion for listening and spoken language outcomes.
[00:39:56] And I have felt like you said, beyond my love of therapy, I do have. affinity for resource design. I'm able to do actually a lot of parent coaching and professional coaching with my resources. They always include a, a page or so of, of information, about language or something about teaching children with hearing loss skills.
[00:40:18] I have listed and spoken language tips and things like that. So it's not. Here's a game downloaded, do it. I feel like I can hopefully make a difference that way, but you know, back in the day I would use pages. We take coloring books and we color coloring books, pages for rehab materials, or we'd cut up pictures for magazines, just very archaic.
[00:40:41] But then I started creating resources over the years for my own. I've said for years, man, I'd love to share these resources, you know, with other people. So like you said, finally, the end of 2019, I launched listen with Lynn and I my resources are a lot of games, some tools, activities. My favorite probably are my self-advocacy resources.
[00:41:05] People. Mostly school, age providers teaching the deaf or whatever, love those. And what's what makes it my favorite. There's a lot of strategies, but my scenarios and situations are taken from real kids. I've seen for therapy. So it's not just I've made them up or whatever like that. But I do have things for adult cochlear implant rehab.
[00:41:26] I have some things for babies. Things like that, but all the materials or families of babies which I'm gonna get into more, but the materials are downloadable. And they're designed to compliment early intervention, auditory, verbal therapy, auditory processing, a lot. A lot of school aged are school based teachers of the deaf and listening and spoken language therapists have really jumped on the bandwagon.
[00:41:52] And it seems like once they find it, they come back for more. So I guess it's going well type of thing.
[00:41:58] Carrie: So that's good so that people can find it on your website. Correct.
[00:42:03] Lynn: Well, they can find a link from my website, right? And that you can go to listenwithlynn.com and you can get to my website. But my, I actually, there are five different platforms where you can.
[00:42:15] Get some of my resources. Do you want me to go over that? Yeah,
[00:42:18] Carrie: sure. Go ahead. I'm sorry. Listeners will want to hear where,
[00:42:21] Lynn: where they can get him. So Listen with Lynn is the name of my store. I'm teachers pay teachers. And I just wanna tell you, teachers pay teachers is way beyond what it sounds. There's lots of other teachers of the deaf and audiologists
[00:42:37] Mental health counselors, OTs, everything on there, but it's a great platform. So all my resources are on there. I have quite a few resources on Karen Anderson's success or supporting success for children with hearing loss site. She has a relatively new teachers takeout toolbox . You could go see a couple resources.
[00:42:58] You go to the listening room sponsored by advanced bios and phone. . And then if you're a member of the online Itinerant professional academy, which is a you're part of the professional academy, there is a membership fee, but she has a number of my resources that if you're a member, then you can just use online with your, your patients, your students, and the fifth place is vocal vision is a teletherapy practice that does provide lots of teletherapy services.
[00:43:30] Through for schools, with teachers of the deaf and hard of hearing and my resources are out in their toolbox. So if you're part of that, you grab a lot of those as well type of thing. So,
[00:43:41] Carrie: yeah. Yeah. Well, I know that. People in the schools, especially appreciate having those resources. I know I have purchased some through teachers pay teachers because you don't have time to make them either.
[00:43:55] Right. So to have someone that has the creativity and is willing to share their there resources with others is really appreciated.
[00:44:04] Lynn: right. Yeah. I usually say, you know, your goals, you know what you're working on. Then you go and you pick wisely resources that will do that. And it makes your job a lot easier.
[00:44:15] You could spend more time doing the therapy or the education that you need to do. And I'm real cognizant, you know, seeing multiple kids, you know, in one day, a lot of times it's great to use one resource that you can level up and down for different families. So a lot of the things that I create work well for that.
[00:44:35] Carrie: Yeah. So, yeah. Yeah. Well, thanks for, for doing all that. And then sure. I guess kind of, as we wrap up a little bit today, is there anything that I didn't ask you that you were hoping I would ask you?
[00:44:48] Lynn: not really, I can talk about anything, so, no, but anybody's welcome to contact me afterwards. If they have something they wanna ask me or, or, you know, talk about or, you know, and is the best
[00:45:03] Carrie: is the best way to.
[00:45:04] Go to your website then to get
[00:45:06] Lynn: a hold of you. Sure. Yeah. There's a contact area there that works out. Good. I'm pretty active on social media. I have a pretty busy Facebook page. I know a lot of people I I'm on Instagram too, but I'm Facebook is my main so it's, I think it's Lynn A wood. LSL auditory verbal therapist or something.
[00:45:25] I'm sure you can find that. Okay. So that's a good way to get ahold of me. Exactly.
[00:45:30] Carrie: Yes. And I can link that up in the show notes as well with your website. I appreciate that. That would be helpful, but I just wanna say thank you for being a guest today on the empowEAR audiology podcast, it was so much fun to go down memory lane and think back to when you met me and just, I think everything happens for a reason and to be able to think about.
[00:45:57] How, like you said, my parents journey and, and their support along the way was huge, but also the village that surrounded them and the different people that they met along that journey and path to raise me was an integral part of where I am today. So I just wanna say thanks to you from a, a long time ago, being an important
[00:46:23] Person in my life and my family's life to before you moved out of Ohio and then it's so much fun to come back as a a professional and to be reconnected with people who were very important in raising me and being that village around me.
[00:46:42] Lynn: That's wonderful. I'm thankful to be a small part of your story.
[00:46:46] And of course your success and care. I couldn't be more proud of you from where I met you and what you're doing now and your impact on others and things like that. So, thanks for inviting me to part of your podcast. I happen to think, as you were talking, you should have your mom and dad as guests on the podcast and what they, your mom will like, oh my gosh, Lynn, but you know, they have a whole other side of this journey, but yes, it's been a
[00:47:11] Joy to spend time with you here and to be your friend. So I appreciate that, Carrie.
[00:47:16] Carrie: Well, thank you. And thank you listeners for taking a listen to the empowerEAR Audiology podcast. If you like this podcast, please be sure to share with others and make sure that you like the page and you don't miss an episode and come back next time.
[00:47:35] Announcer: This has been a production of the 3C Digital Media Network.

Episode 43: empowEAR Audiology - Dr.  Johnnie Sexton

[00:00:00] Announcer: Welcome to episode 43 of empowEAR Audiology with Dr. Carrie Spangler.
[00:00:16] Carrie: Welcome to the empowEAR Audiology podcast, which is part of the 3C Digital Media Network. My name is Dr. Carrie Spangler, and I am your host. I am a passionate audiologist with a lifelong journey of living with hearing challenges in this vibrant hearing world. This podcast is for professionals, parents, individuals with hearing challenges and those who want to be inspired.
[00:00:45] Thank you for listening and I hope you will subscribe, invite others to listen and leave me a positive review. I also wanted to invite all of you to visit and engage in the conversation on the empowEAR Audiology Facebook group. Transcripts for each episode can be found at www dot three, the number three, C digital media network dot com under the empowEAR podcast tab.
[00:01:18] Now let's get started with today's episode. Hello listeners. I am really looking forward to today's interview. And I will be speaking with Dr. Johnnie Sexton, who is an audiologist, and has worked with children who are deaf and hard of hearing for over four decades. He received his bachelor of science and master of science degrees from East Carolina university and his a AuD degree.
[00:01:50] From AT Still University, Arizona Health Sciences. Dr. Sexton has focused throughout his career on pediatric educational audiology service development, implementation, and management, and served on a team to design the early intervention system for audiology in North Carolina, including the newborn hearing screening program from 1999 to 2001.
[00:02:18] He has devoted his energy in recent years to redefining counseling for families with children who have hearing challenges and the professionals who provide services for them. He created the nonprofit agency, the CARE project, serving as executive director for the advancement of family, professional and pre-professional training opportunities and emotional adjustment counseling.
[00:02:47] The CARE project has become a national standard for family engagement, for the unique family retreat experiences, which provide emotional support and education for family empowerment. Dr. Sexton works with the state newborn hearing screening programs across the country to provide family retreats in all states in the United States.
[00:03:11] Throughout his career. Dr. Sexton has been very involved in state licensure under five governors in North Carolina with a clear focus on making sure that the consumer of speech and hearing services are protected from unethical and illegal practice. The North Carolina Speech, Hearing and language association has twice awarded Dr.
[00:03:34] Sexton, the state clinical achievement award in 1996 for his pioneering work in educational audiology and in 2017 for his pioneering work in emotional support for families through the nonprofit foundation who started the CARE project. Dr. Sexton also owns a private practice specializing in educational audiology services and educational sign language interpreting services, title John E.
[00:04:05] Sexton and associate incorporated. This JESA a is 35 years old and employees, 15 audiologists who live in regions across the state of North Carolina. And they served two thirds of North Carolina school systems and many charter schools. From January 1st, 2018 through January of 2021. Dr. Sexton has served as the co-chair of the North Carolina, early hearing detection and intervention advisory board, which oversees the newborn hearing screening program in all birthing hospitals in North Carolina and early intervention services for children, birth to three and continues to serve as a board member.
[00:04:48] In 2018, he was named the number one Audiology practitioner of the year in the United States by the Focus on People awards, he has been nominated twice for the National Antonio Maxon award of excellence. Which honors an individual who has made outstanding contribution to achieving excellence and early hearing detection and intervention program naturally, or in a particular state or region.
[00:05:16] I am excited, but all of you listeners to meet Dr. Johnnie Sexton today and hear about the CARE project and educational Audiology services. All right. Welcome Dr. Johnnie Sexton to the empowEAR Audiology podcast. I'm glad to have you.
[00:05:37] Johnnie: Thank you so much. It's a pleasure and an honor to be here with you, Dr.
[00:05:41] Spangler. I appreciate it.
[00:05:43] Carrie: Well, good. I am really excited for this conversation today, but I always like to start out a conversation if we've known each other for a little bit kind of reflecting back on when we first met. And I don't know if you remember this, but I think the first time I've might have met you.
[00:06:02] You were presenting at what is called OSPEAC, which is our Ohio school, speech pathology and educational audiology coalition conference in Columbus and the CARE project, which we're gonna be talking about today. So I don't know if you remember me there, but that's the first time I remember meeting you
[00:06:23] Johnnie: personally.
[00:06:25] Yes. You know, Ohio has been so gracious and kind to me, period. But, but especially when I started the care project and, and I've single out one person in particular, Dr. Gail Whitelaw was very gracious to, to have me come. I was invited to speak at that conference. And I do remember meeting you and many people that day.
[00:06:47] It was, it was the packed house as I recall. So
[00:06:51] Carrie: yes, it was. And then we also had a great dinner one night. After that with Gail Whitelaw, I think it was her husband and one of our grad students. And you were there for the CARE project. We were having our campUS event. Yes. And I think it worked out that we got to connect.
[00:07:10] But yeah, so we've actually known each other for quite some time when we think back on it. I also like to ask my guest, how did you get into the field of audiology? Because I feel like this, one of those things, people either have a backstory about, or they just happen to fall into it. Do you have a backstory?
[00:07:31] Johnnie: Well, I, I have yes. I have two versions of the backstory. I'll be brief, but you know, I was born in rural Eastern North Carolina in the 1950s and there, as, as anyone knows the history of education, there were no services available for any child with a challenge in any local community. And the family that lived across from us had a little boy born, literally about the same time who was profoundly deaf.
[00:08:02] And, you know, coincidentally, we both were named Johnnie. But our families knew each other. Well, our mothers worked together at the local sewing factory. So there was an awareness created in our little tiny town of the impact of deafness on a child and a family. And so when little Johnny Ray turned six, I guess it was at the time, the only education that was available for him was to go to the state school for the deaf which was probably 300 miles away.
[00:08:41] So the good news is that, that, that there was an option. And of course I'll say the not so good news is that the option required the child to live away from home, starting at age six mm-hmm that stayed with me and in some place in my head, it lingered. So as I grew up and went off to college I never heard of audiology.
[00:09:03] It was a pretty young profession back then. And so was going to be a business major. After one semester of classes, I, I wanted to work with people. I wanted to be people oriented. So I kind of dove into psychology, which led me to eventually it led me to the introductory course. In, in communication sciences and disorders.
[00:09:29] And I just had this aha moment that I might have found my home . And there was a preschool class on campus in the same building where I was taking classes in college, a preschool class for children who were deaf and hard of hearing birth to five. So I started volunteering there. So that's a long way to say.
[00:09:50] You know, I, I found my way with a little bit of a, a, a memory from the past and it, it, it became the platform for my career. And, and, and by that, I mean I was driven to try to create access to service. Mm-hmm for all families. Because where I grew up, there was nothing at the time. I proudly say that my hometown and county like all school systems hopefully across the country they have services.
[00:10:20] So children, you know, are able to go to the local schools and stay at home with their families. And I, I enough about that. So that's how I kind of stumbled my way into audiology.
[00:10:33] Carrie: Well, that is a great story. And I love the, how you said, you know, little Johnny six, you know, when you met him at six before that and how that kind of stuck with you, which kind of makes a great segue into, like you said, your lifetime career of helping families and children, especially on that emotional journey.
[00:10:55] for families who have children with hearing loss. So I wanted to dive deeper into the CARE project and how that has made an impact on not only in your own community, but throughout the United States. So for our listeners, would you be able to share kind of a 360 degree view of what the CARE project is?
[00:11:19] Johnnie: Sure. I'll try. So after 30 years of, of practice and 30 years of working with families, you know, I audiologists traditionally think of working with patients or clients. My path put me in touch with families. Well, before I even finished my master's degree in audiology. So I, I had lots of moms and dads talking to me about their journeys and what it was like.
[00:11:42] And there was a common thread that resonated with me throughout, and it was lack of emotional support for families. They, they felt that they were not getting emotional support. They were getting information and they were getting a bit of a unilateral communication from most professionals. Not all, you know, I'm not at all disparaging colleagues but, but they just felt like they weren't getting that.
[00:12:12] So I was Driven to see what I could do about that. And I spent a year, I call it a year of wandering in the desert. Trying to figure that out. And I remember networking and talking with people and trying to involve even some of my staff. And a dear friend and colleague who is a licensed counselor, sat with me one day talking about it.
[00:12:36] And he said, no one knows what you want to do, but you it's in your head. You need to get past your desire to manage by inclusion in terms of other people and get, get going on your own. So I did, I had dinner with A colleague who was the chair of the program over at East Carolina university, where I had graduated from and telling him about it.
[00:13:05] And he said, well, you know, we have seed grants. Why don't we help you get started? Wow. I mean, I've never written a grant at that point and I didn't know what I was doing, but I just did it. And that gave us a little bit of a kickstart. It helped me begin to get the word out. My husband and I were living on Baldhead Island at the time, which is a, a, a wonderful little paradise with no bridge and no cars.
[00:13:30] And it's a small community. So the mayor's wife we were friends heard that we were trying to get something started for families and she offered an idea. And I always give her credit for this. Why don't you bring families together here? Like we do already for wounded warriors programming and let them have a retreat, let them come together.
[00:13:55] Let them network bond, and gosh, that, that was. Immediately the answer I was seeking that I didn't know I was looking for, and that is what can we do? We can bring them together. And that literally, that, that laid the foundation for what we've done all these years since. So we started having family retreats pretty quickly our North Carolina EDHI program reached out and said, we've, we've heard what you're doing.
[00:14:22] We wanna partner with you. We want to help you do this. So that gave us a statewide platform and we started doing. We literally traveled from town to town, like the old pony express and, and met with families in local communities. I heard about this group called EHDI on a national level. So I started getting involved with EHDI on a national level and started talking to people across the country, in different states about what we were doing.
[00:14:50] And everybody was just so excited and, and reinforcing. So that led me to then try to write grants because every state EHDI coordinator that was interested in what we did said the same thing to me. Well, you know, Johnnie, we don't have any money, but we love what you're talking about. So I decided that I would find money.
[00:15:12] So I got a, I was shocked and thrilled to get a grant from a private foundation. The Oticon Foundation in Denmark I'd done some consulting for them. They were excited about what I was doing with the CARE project. And that gave me the opportunity then to call the state EHDI coordinators across the country and say, Hey.
[00:15:32] I want to come talk to your people and they're we have no money, Johnnie. Well, guess what I do. So I started traveling across the country, you know, sharing the information and the plan and, and that built some, some wonderful support for, for what we, you know, do and, and have done. I then got a grant to.
[00:15:54] Do family retreats across the country, the Oberkotter Foundation. So graciously, they believed in us, they graciously funded us for a three year period. So we partnered potentially we are partners with every state in the United States and US territories to provide not just. The family retreat experience, because I have been so fortunate to evolve what we do to provide multiple opportunities multiple agendas so that families can cycle back through and continue to learn and grow and experience things.
[00:16:26] It also evolved into professional sensitivity training. So I've done a ton of workshops for groups of professionals across the country, not just audiologists, but all professionals who work with families and it focuses on the family's emotional journey. And I evolve that into focusing on my, my new tagline is changing the culture of communication.
[00:16:51] We have to learn to talk differently to each other, to be more sensitive and, and to give each other, an opportunity to be partners in the plans for the child that we're working with. So that is a, I guess, a, a thumbnail sketch of the CARE project, where we were and where we are today. A a, a, an added note when the pandemic hit.
[00:17:13] I sat, I sat at my desk for a month. Very sad because I though, What are we gonna do now? But we, my, my trustee working partner Laura Pike, who is the mother of a deaf child she and her husband are amazing. They've been involved with the CARE project for years. We just sat, sat on the phone and, and I said, I have things in my head.
[00:17:37] I need to say out loud, And Laura said, well, I'll write them down. And at the end of that meeting, I said, these are our new projects. We're going virtual. So we, we converted everything to a virtual platform. I rebranded it and called them learning virtual learning experiences for both families and professionals.
[00:17:57] So that, that has served us well for the past two and a half years.
[00:18:01] Carrie: Good. Wow. You have a lot to, to unpack, I think for the, the CARE project, which, which was exciting. So I guess kind of going back when you said you got the Oticon Grant and you were able to go to different states and say, Hey, you know, we can offer this CARE project.
[00:18:22] What would you say? What would you say to states, like if they have never heard of the CARE project, how would you have just described that to, to a state?
[00:18:32] Johnnie: Well, because I had been involved with NCHAM and the EHDI organization on a national level. I became very familiar with how their funding works.
[00:18:46] I wasn't seeking their funding, but I've been told that I was in the right place at the right time, because all of a sudden there was a requirement that a part of the funding be spent on family support and family engagement and states, even if they had not heard of us with a, even a conversation, they.
[00:19:09] were quick to realize that that's what we do. So I describe what we do and, and everybody agreed that it was definitely family support and that I had approached it in a unique manner and they wanted to work together. It, it was, it was very organic. It was very organic. It just evolved. You know, on parallel tracks and then fast forward in the, in the last, I don't know, two to three years that mandate to use funds through EHDI programs for family support, you know, has grown.
[00:19:43] So we are we're in a, I call it a budget cycle along with EHDI program. So we know that and anyone involved with EHDI knows that the grant year, I think runs from Let's see July one through. No, no, no. It ends March 31st, every year. So they, they get their approvals and their fundings let's say in the summer, and then they can start planning for things through next spring so that that's served.
[00:20:11] We, and we're we're on, on par in many states for a multiyear project. Like the state of Oklahoma, we're the, we're working with them now for the next, I think four years.
[00:20:22] Carrie: Okay. That's great. So if a state decides, Hey, we wanna partner with you for the family engagement and family support, especially through EHDI What does that look like for families?
[00:20:38] If you would have a family retreat, I guess like pre pandemic kind of family retreat, what does that look like for the CARE project?
[00:20:47] Johnnie: Well it, and we even wrote a manual, so we have a manual it's pretty detailed and scares people sometimes. But we form a planning team with the state Eddie program and, you know, it can be EHDI or other agencies, but we form a planning team and we are.
[00:21:03] The managers of the team, we are we can provide resources, but we look to the in-state partners to make sure that we're meeting the needs of the families in their state. Now, there is certainly a list of generic needs across all families. But when we, we like to make sure that a, a retreat, we have an agenda Then first we have families arrive on Fridays.
[00:21:26] Get settled in on Friday evenings. We may even have a, a social activity on a Friday evening, but we are up early on Saturday morning. We recruit volunteers. We have a childcare team. I know we did one in Ohio right before the pandemic hit and we had some amazing volunteers from the, not only the professional community, but the student community in, in Ohio.
[00:21:50] So we have childcare ready to role First thing that morning and parents are then, and I say, this positively, they're separated from their children because the first half of that day is devoted to the parents. and their emotional journeys. And I lead that, you know, it, it's very much asking every person in the room to tell us about their own journey, their family, their challenges and their successes.
[00:22:19] You know, I, I've learned along the way to focus on not just what's going on, that you're potentially grieving over, but what, what can you celebrate each day with your child and your family? And, and so we spend a lot of time that first day on that in the afternoon we have so, and we have our meals together.
[00:22:38] So in the afternoon we break, we have breakout groups. So, you know, parents will separate from their parent partners and go into separate groups so that they can talk individually about their emotional journey. And it, you know, it's pretty amazing and very cathartic I'm told by parents to be able to go into a separate room away from their parent partner and say anything they wanna say out loud with no judgment.
[00:23:05] And they've got people in the room with them who. Able to do the same thing and, and they network, they bond, you know, friendships have been made, gosh, that are still in place all the way back to our first retreat in 2011, I think it is. We also set up an opportunity on that Saturday afternoon to film parent stories and journeys.
[00:23:26] We have my, my dear husband, Xris Kessler is a filmmaker and an artist. And so he comes with. We set up in a private area. Parents are given an appointment time so that they have privacy. And, and it's a safe space and I'm there with them to not interview them, but to. Give them I guess a launchpad and be there for them if they need me.
[00:23:49] And they we've had some beautiful and very emotional stories shared we have a YouTube channel and you can go watch many of them there. So at the end of the day on Saturday, we come together for a wonderful meal together. Maybe some activity sometimes if the weathers permits we'll have s'mores.
[00:24:08] You know, out by little campfire we've, we've had retreats in hotels. And so with parent supervision, if there's a swimming pool there, you know, gosh, we've had some of the most fun times with the families all together, their kids playing in the pool and they're, they're comparing their devices. They're looking at what they each use to be more waterproof.
[00:24:31] It's just another bonding experience. Again, very organic. Sunday, we offer more informational sessions for parents. So we've often had audiology 101, you know, this is the audiogram. These are, are our terms that you may have heard, but didn't understand because parents will tell us all, you just use all these words and these acronyms and, and, and I don't know what they mean.
[00:24:57] So we tried to give them. We try to empower them and give them information so that they can go back home and advocate even better for their child and their family. We've had communication options as, as a session we've had one, a favorite is having a panel with young people who are deaf and hard of hearing.
[00:25:16] And they share their journeys. We've had parents. Of those same kids present, and then they share their journeys and the parents that we have in the audience you know, they're, they're fresher on their journeys and, and there's some, there's some beautiful synergy that, that you can witness with all that going on in the same room.
[00:25:34] Carrie: Wow. Yeah, I'm sure it's a very emotional couple of days that yes, families are involved in and, and all of the volunteers as well. Do you have a particular like story or anything that you can share? I know you've met so many families along the way, but anything that stands out from one of your retreats, that would be significant.
[00:25:59] Johnnie: I have to say that early on and, and they're all. Beautiful stories to me, you know, and I'm how fortunate I am that they're comfortable sharing that in front of me. I mean, I, I am so blessed that they, that we bonded. But I I'll say. There's one family. And it was the first family that we ever interviewed.
[00:26:20] And maybe it was because it was the first, but you know, a mom and dad sat down in front of the camera. Their child was seven years old by then. And the mom had never allow herself to grieve. She is the their amazing parents, they just jumped into action, advocate mode. They talked about that, you know, there was no question.
[00:26:52] We just, we gotta go, we gotta deal with this, but never allow themselves that moment or moments to open up with their emotions and so on that day, and you can see it on the YouTube channel on that day. Dear sweet Robin Hosley let it, it just all came out and she just was able to process and even begin maybe an, a new phase of healing that she didn't even realize she needed to do.
[00:27:26] and we've seen that time and time again, that all, all I ever say that we do is as a part of the CARE project is we give an opportunity for people to come together. And we set the table for parents to join us. And we, we, we are there to facilitate and help and they do all the work. You know, they, the, the sharing, those stories, their own journeys and Robin Hasley was the first and her husband Mark Hasley did the same thing.
[00:27:56] He was there with her and they both were able to just let it go. Now the beautiful thing I've seen and I'm so happy to share is that that set of parents and every set of parents, since then they evolve into parent leaders for the care project. They don't want to go home and sit there and go, okay. I feel better.
[00:28:18] They wanna do more for their own community and they want to do more for organizing retreats. I've had one parent. Laura Hughes over in the Western part of North Carolina gets so involved. And so she in turn wanted to be involved in, in a, a CARE, a retreat. So she actually went out and did site visits and prepared the most brilliant comprehensive report I've ever read on, you know, choices.
[00:28:47] And, and, and she was a leader in that. So. There's a, there's a side benefit to bringing people together, parents together, families together in that they evolve. Same thing happens for the kids. You know, they never forget their experiences. When they come to a retreat, we had a family fun day, which is one of our newer events in June here on the coast at Wrightsville beach park, we put little signs out on the road.
[00:29:14] We have over a hundred people come. It was beautiful and magical, but. All of a sudden, I see a young woman standing in the, the periphery of the tent. looking at me and smiling, and she had a friend with her. And I looked and I looked and I looked and I went, oh my God, it was one of our little CARE project kids from years ago.
[00:29:36] ah, and she, it just graduated from college and she was at the beach with her friends and she saw the CARE project sign and she said, I had to drive till I found you. And there were a lot of tears that day, but. It was a beautiful experience to see that it impacts children as well as the parents. Yeah.
[00:29:58] Carrie: What a ripple effect that it really does create. It seems, it seems. Yes. Yeah. So I, I wish my parents would've had that opportunity to network with other parents and, and they were so alone in the whole process and kinda like you. As you explained the one family that just kind of got it all out because she had an opportunity and you had set the table for that family to be able to express their emotions and be with others in the same way.
[00:30:30] And they just didn't have that opportunity early on to, to meet anyone. So I'm sure it would've been very beneficial for them
[00:30:38] Johnnie: too. well, we'll, we'll, we'll go forward and do all we can while we can. So. Exactly.
[00:30:45] Carrie: And I know you also go to different states and conferences and you educate professionals too.
[00:30:53] What does that kind of look like for your presentations and getting professionals on board with this?
[00:31:00] Johnnie: Thank you for that question. I will say first it keeps evolving because I am on a journey of lifelong learning too. So when I started doing that, I have to give credit a speech pathologist at Cook children's hospital over in Fort Worth, Texas, I think called me and she said we want you to do a, a workshop on empathy.
[00:31:23] And I, you know, I, I never say no, I've just said. Sure.
[00:31:31] And I had started doing workshops that really focused on the emotional journey of families. A part of that of course, is talking about the journey and the grieving. Then I would move on to, I used to use and still do some, some clips from our filmed parent journeys. Mm. To give insight to professionals, because I've said from day one, With the CARE project.
[00:31:55] We hear things from parents that none of us here in a clinical setting or in a school setting or in a professional setting, they don't tend to just open up. So when you're hearing about their day, their week, their month, their life, and it's a very emotional, you know, conversation. It's extremely educational for professionals.
[00:32:18] I've never had one professional colleagues say, well that I didn't want that, that didn't do anything for me. It opens up our minds. So I evolved that to, I, I mentioned earlier, you know, changing the culture of communication and how can we do that? So when I'm talking with professionals more and more, I've included now a whole segment on empathy.
[00:32:42] And it really is basic. It's like, do you have it? Do you know, you have it? How do you know you have it? And let's talk about it. Which has led me to, to, you know, there there's a whole new focus. It shouldn't be new, but it is. In our professions for diversity equity and inclusion . So I talk about things like unconscious bias.
[00:33:03] I even developed an unconscious biased exercise tool in 2020. That's being used now in places around the country. It's not that it's the big deal. It is something that causes people to reflect. So at the bottom of everything with professionals is having them look inward. Giving them an opportunity to find some emotions in themselves that will help them identify with those parents.
[00:33:28] I ask every professional in every workshop to pause with me and take five minutes and think of an event in their own lives. That was an emotional experience. I I've called it grief, but I I've. I've evolved that term to emotional surprises. You know, grief is pretty heavy and dark seeming and is associated with many things and it is an accurate term, but emotional surprises seems to help people wrap their minds around it a little quicker.
[00:34:00] So I asked them to think about that and we, it, it is mind boggling to hear the stories that professionals have graciously shared with me and the audience. Deep within their own emotional journeys themselves. And so at the end of that, I just say, I hope that you are now able to put your shoes, your feet in the shoes of the parents that you work with.
[00:34:26] So when you look at the parent or the child or the patient, they're a human being sitting in front of you with an emotional journey going on and let's be more sensitive to that and figure out how we can communicate differently. One thing I did, I think this is the fifth year now. I created a new experience called the parent professional collaborative.
[00:34:46] I wanted to bring parents together with, with professionals. And we, we did it in person for several years. To give them an opportunity in a child free environment to communi learn how to communicate better with each other and have a greater understanding.
[00:35:02] Carrie: yeah, those are all great ideas.
[00:35:04] I think I remember when you came for the professional CARE project workshop that you did. I. I remember having a very emotional experience there. And I think just, you know, some of the ideas you brought up and, and thinking about it from my own perspective too, was another way to bring that emotional surprises to the table.
[00:35:29] Johnnie: Absolutely. And you bring, you, you bring a very unique perspective because you grew up with hearing loss and, and you and your family face the very issues that we're trying to focus on. And then you became this amazing audiologist. So you've got a, a wonderfully unique perspective. .
[00:35:49] Carrie: Yes. So a lot of times some of the things that you go through end up being, you know, things that propel you into the, into the future and I let you apply what you learned or didn't have access to, like you said you know, learning from that little boy and what he went through to be able to.
[00:36:08] support emotional journeys with families in the future, even though you didn't know that when you were six years old, that that was gonna be happen.
[00:36:16] Johnnie: Absolutely.
[00:36:17] Carrie: Absolutely. . Oh, but is there anything about the CARE project that I didn't ask you that you wanted to share before I asked you a little bit about educational audiology?
[00:36:30] Johnnie: I think we covered it pretty well. You know, I, I hope that we are, are fortunate to keep growing and, and serving. We've had support from surprising places and some very appreciated organizations companies. I, I think one thing that was so unique, we had the funding and, and we were asked to go to Guam.
[00:36:52] So I sent a team of six people from the United States. And, and, and they went and spent time there and, and brought the CARE project all the way to the other side of the world. So we're, we're hopefully at we're, we're, we're here. If anyone needs us and wants us, we'll keep our partnerships going and growing.
[00:37:09] And and through the virtual platform, even if we return to in person, we're able to reach people everywhere. So that that's, I guess that's the, the final note is that we hope we keep growing and, and helping people well, good.
[00:37:24] Carrie: Yes. Cause it, it needs to be happening all over the world so that the silver lining in the virtual platform.
[00:37:33] Changing gears a little bit. I wanted to ask you a little bit about educational audiology, because I know that is near and dear to me in my own professional live, but you have a private practice that specializes in educational Audiology. You've been doing it for multiple years. Can you share a little bit about your practice and how that works in North Carolina?
[00:37:57] Johnnie: Absolutely. It was another one of those accidental things that happened early in my life. I mentioned the preschool class that I volunteered in as an undergraduate. I was able to cover a, a part-time position as a public school speech therapist before I went to grad school in audiology, which gave me a real sense of the public schools.
[00:38:20] I fell in love with the school environment. I graduated. I finished my master's degree in audiology at the point in time where a, a federal grant had been funded. Actually the, the, the chairperson of our department at East Carolina university had written a grant to establish something called Project Ears.
[00:38:41] And it was a mobile hearing test center assigned to 17 school districts in southeastern North Carolina. One of my dearest friends and colleagues had been hired to direct it. She is an audiologist Dr. Pat Chase. And she reached out to me and she hired me and one other, one of my classmates.
[00:39:05] To join her. So there we were with this responsibility to create the model for educational audiology in the public schools in North Carolina in the late seventies, it was pretty remarkable at the time. It was like, oh great. I have a job. Yay. But we traveled, we went to schools I think it was 7,700 square miles.
[00:39:27] And the thing that was so personal for me is that it was the region in the state where I grew up. So re remember my comment about access to service. there, I am along with my team creating access to service in my hometown, in my home county and in that region. So it, it meant the world to me. Two years into the grant
[00:39:51] we the funding ended, so we had, we lost our jobs, you know, never imagined losing my job, but I did. And there were no obvious choices at the time for me without maybe relocating or whatever. So I was approached by a company that sold equipment to schools for kids and people doing testing, FM equipment, tympanometers.
[00:40:19] Audiometers what have you. And I was hired to become a salesperson and consultant. Now I bring that up. The five year, period of time I was with that company. It was at least five years. My whole world changed and I saw technology in development before it even came into the world, I learned so much, I was sent around the world to learn things that I never dreamed of.
[00:40:47] And so during that period of time, the schools that we served with project years, the directors kept calling me and saying we really miss the services. So one lady, who's a dear friend and she and her husband are still in my life. Linda Beman called me to come to Duplan county schools and sit with her.
[00:41:08] And she said, you know, Johnny, I can't hire you because the legislature won't allow us to create new jobs right now, but I can contract with you. And I didn't know what that was. but that sweet friend showed me what to do. So I got several school contracts enough to quit my job and start my practice.
[00:41:29] And, and here 35 years now of John Sexton and Associates and we, we grew word of mouth. You know, a, a, another huge blessing I advertising and you work in the public school arena, you know, it, it's not the same thing. It's not like you're selling mayonnaise or hot dogs , you know, it's a very personalized service.
[00:41:53] It's a very unique service and in North Carolina, while we recognized the importance of it back then, there no new jobs were being created. Now the good news is that there were several programs created in house, in several counties in our state that have grown and they've done great, but we are a pretty rural state and that's I think, common across the country.
[00:42:19] And so we are able to provide educational audiology consulting servic anywhere in North Carolina. We've I have 15 audiologists now on staff and they live in regions. I even have done some things virtually because of distance. So we try to be there for these school systems. You know, if you can't have access to the service, then you're, you're in trouble in lots of ways with parents.
[00:42:48] they deserve the service. The kids deserve the service. What are we gonna do? So we really have dedicated ourselves and our team to being educational audiologists. We don't do anything else. We work the school calendar. The school year, we operate in the name of the school system. We, not that there's anything wrong with it, but we don't sell products.
[00:43:06] We don't dispense heairng aids. We are purists. You know, we are educational audiologists and we get up every day and we get in our cars and with portable equipment, you know, we're able to, to do what needs to be done. And we're, it keeps evolving. You know, now we have access to the statewide data system online.
[00:43:24] So we're, we're truly a part of the team. We're a part of IEPs. My wonderful staff has created some advocacy training for kids. And so we've grown our role and in some counties we started with one day a week and now we're there five days a week because there's a need, you know, I always laugh.
[00:43:42] There was, I won't named the county, but when I was starting my practice, I called one county director and she said, oh, we don't have any deaf kids here. And I'm like, Really?
[00:43:55] Two years' later. I've heard that before two years later, she called me. She says, you know what? A parent has threatened to sue us and we need you. So anyway it's been an amazing organic path. I hate to keep using that word, but we just work hard at what we do every day. And we get calls every year to come help more schools.
[00:44:13] We're now working with charter schools and private schools. We are in one we're in 70 of 100 counties in North Carolina.
[00:44:20] Carrie: Wow. That's amazing.
[00:44:23] Johnnie: It's it? 35 years, but I, I, gosh, we'll just keep doing it. We'll just keep
[00:44:27] Carrie: doing it. Right. And how do your 15 educational audiologists do you guys network? Do you get together so that everybody's on the same page about services and supports.
[00:44:39] Johnnie: Yes, absolutely. We have a good cohesive group. We communicate of course, very often via email. And we can each reach out to each other with cell phones and texting and another silver lining to the pandemic. I started having virtual meetings you know, getting together when you've gotta drive four hours to get to a meeting.
[00:45:00] Yeah. You know, nobody, no, everybody did it, but now we don't have to. So we meet virtually the staff loves it because we can meet monthly if we want to. Everybody can network share. If anyone has a question, midweek, they send an email out to the whole group. They can get amazing feedback. So there's a good network and bonding you know, amongst the staff.
[00:45:23] Carrie: That's that's great. So. You know, I know a lot of states don't have support or maybe they only have support like you said, in the more urban areas where there's a big city and they are able to hire their own educational audiologist. Do you have suggestions from your wealth of experience of how other states may advocate to have services?
[00:45:53] Johnnie: I think the most important advocacy tool is what's legally required. Okay. If anybody starts debating and discussing, you know, we have, IDEA a you know, we have state licensure there's statements in federal and even some state legislation that will show clearly who does what. I've had over the years, not so much anymore because I've fought hard.
[00:46:21] I've advocated hard for educational audiologists to have a place. We used to have this, this, you know, gray line between, well, the teacher of the deaf can do that. And I'm like, no, they can't. And here's why. And here I have handouts. Now that show, you know, the, the responsibilities and roles above, because we, we value teachers of the deaf.
[00:46:44] But they're not supposed to be selecting and fitting FM equipment. Right. But they have, it's just a matter of advocating positively advocating with hardcore information. You know, don't, you can't have an emotional conversation with you need this, and I don't know why you have to say here's the federal regulation here's IDEA.
[00:47:07] And I even have it carved out. And this is what it states about. Audiology, you know, who can do what? I've had another recommendation is make sure you develop great relationships. Don't burn a bridge, you know, the relationships I've had from the beginning of my career are still in place today. And my example is at the Department of Education in North Carolina, the, the, the head person over all special education had me write a memo for her to send to all school systems that clearly states who does what.
[00:47:44] And so we value the roles of all of the team members, but educational audiology is a required service. And when I work with parents, I am not shy about telling them you deserve this for your child and you need to request it. And if you're denied it, then you need to demand it. and I give them the tools too.
[00:48:07] Carrie: right. No, that is very helpful. And. It shouldn't depend on what a child's zip code is, whether or not they get services. So, you know, like you said, IDEA clearly spells out what our role is and a child deserves to have those services in the public schools.
[00:48:29] Johnnie: And the, the, I I'll just reiterate one more time build relationships because now in North Carolina, if a school system calls the department of education they recommend that they call us.
[00:48:43] That's great. You know, it, it, it, it, it took, you know, 35 years of building it, but, you know, we we've really tried to educate school staff school, personnel, directors across the state. And, and I, I'm proud of 'em. They all clearly understand for the most part, you know, what they need and how to go about getting it.
[00:49:02] Carrie: Good. Good. Well, that's quite impressive that to be able to cover two thirds of this state of North Carolina with educational audiology, and hopefully the other third is covered because they are bigger districts and yes,
[00:49:17] Johnnie: they, they have in-house programs and a final, just a, a final recommendation to any audiologist.
[00:49:24] But I'm speaking to my colleagues in educational audiology. Get become active in not only professional associations, but one of the greatest learning experiences for me that serves me well to this day is I became involved with state licensure. I was the first educational audiologist appointed to the state licensure board in it.
[00:49:48] No, no offense to colleagues, but it was always been predominantly hospital and university audiology. And I love my colleagues, but the perspective of educational audiology and the public school setting was never represented. And I think it needs to be that diverse. You know, we need to understand from a licensure standpoint, because licensure is in place to protect consumers, right?
[00:50:10] Let us have a voice in that as well.
[00:50:13] Carrie: Yeah, that's funny you say that, cuz right now I'm on a state licensure board and congratulations. I think I, yeah, and I've been on there for quite some years now, but I don't think any other educational audiologist has been appointed before I have been on the board and it does bring a whole different perspective.
[00:50:33] Like you said, protecting consumers. And those are the children in the schools who are deaf and hard of hearing. So that it's, it's been a good perspective. Is there anything next for you you've, you've done so much. Do you have anything next that you wanna share?
[00:50:50] Johnnie: So this is I, I, I, this is a positive next.
[00:50:56] I'm at an age I'll be 67 soon. The important next steps for the care project and for my practice is to create a transition plan. I don't want anything I've ever done to stop. If I stop breathing, that sounds morbid, but if I'm gone tomorrow, I don't want this work to stop because I truly believe that because of all the wonderful people who have joined in and helped us move forward, I believe there's value in having it continue.
[00:51:31] And so I'm talking with younger generation audiologists on my staff. I'm talking with a variety of people, you know, in the CARE project world, I, I want to have a, a transition plan and I hope I plan, I don't want to ever stop working. And my parents are 92. So, you know, genetics may be on my side and I'll be around for a much longer time.
[00:51:54] But I think stepping outside of that, The most important thing I can work on now is a transition plan. So the CARE project lives on. And so does my practice.
[00:52:05] Carrie: Yeah, well, that's a great next step and probably brings up a little bit more time for you as well so you can enjoy some travel and other things.
[00:52:15] Sure. Now that things are opening up, but, well, Johnnie, I just wanna say thank you for being a part of the empowerEAR Audiology podcast today. I really do appreciate you sharing about the care project and educational audiology and you have. So much for the field of, of educational audiology and pediatric audiology
[00:52:36] And I just wanna say thank you for all of your insight and program development that you have been involved with over the years. Well,
[00:52:45] Johnnie: thank you for inviting me is again, a pleasure and an honor. You're one of my heroes, so it's a, a, a, a special honor to be with you and be invited by you to join you on your podcast.
[00:52:56] So thank. Well, thank you.
[00:52:58] Carrie: And thank you listeners for tuning in today. If you wanna get a hold of Dr. Johnnie Sexton, I will put some contact information in the show notes that you can reach out to him. I will also link to the YouTube channel and the CARE project that he referenced today in the podcast.
[00:53:17] And thank you for listening and have a great day.
[00:53:21] Announcer: This has been a production of the 3C Digital Media Network.

Episode 42: empowEAR Audiology - Dr. Jessica Hoefler

[00:00:00] Announcer: Welcome to episode 42 of empowEAR Audiology with Dr. Carrie Spangler.
[00:00:16] Carrie: Welcome to the empowEAR Audiology podcast, which is part of the 3C Digital Media Network. My name is Dr. Carrie Spangler, and I am your host. I am a passionate audiologist with a lifelong journey of living with hearing challenges in this vibrant hearing world. This podcast is for professionals, parents, individuals with hearing challenges and those who want to be inspired.
[00:00:45] Thank you for listening and I hope you will subscribe, invite others to listen and leave me a positive review. I also wanted to invite all of you to visit and engage in the conversation on the empowEAR Audiology Facebook group. Transcripts for each episode can be found at www dot three, the number three, C digital media network dot com under the empowEAR podcast tab.
[00:01:19] Now let's get started with today's episode. Again, welcome to the empowerEAR Audiology podcast. Before we begin today, I wanted to. All of you who join me for each and every episode release. I love hearing from each of you. And I want you to reach out to me if you have any ideas about topics and people who are empowering, as it relates to hearing differences and challenges.
[00:01:48] Part of being empowered in life is being able to share authentic stories of hurt, healing, and hope. Speaking of empowering, today's guest is one of the most influential individuals that I know. And I am blessed that we are colleagues, friends, and coworkers. In this episode, Dr. Hoefler will share about her journey.
[00:02:14] of becoming an audiologist and how her life experiences have led her to a life passion of unlocking representation through literacy for every child through her nonprofit called Piper's Key. Before I introduce all of you to Dr. Jessica Hoefler, I wanted to share a little bio. Dr Hoefler received a Bachelor of Arts degree from the Ohio State University in speech and hearing sciences followed by her doctorate of Audiology from the university of Akron through the Northeast Ohio, AuD consortium.
[00:02:54] During her time at NOAC, she completed different rotations through the field of audiology, including the Cleveland Clinic, Akron public schools, and the Cleveland department of Veteran Affairs. She started out in the world of private, private practice and then joined the Summit Educational Service Center.
[00:03:15] About six years ago as an educational audiologist, she has a passion to help individuals with hearing loss. Her goal for all students is to ensure not only access to their instruction, but also guide them to be successful advocates for their hearing and listening needs. Whether it is teaching them how to use their personal hearing assistive technology or understanding their hearing loss.
[00:03:42] She loves watching her students grow and advocate for themselves in the classroom. When she's not working, she enjoys spending time with her husband, family, friends, and running with their dog. Maddie. She has two amazing daughters, Quinn rose, who is a spunky and smart five year old and Piper Grace, who is a gorgeous and fierce angel in heaven.
[00:04:08] They just welcomed their newest addition to their family. Leo. Jessica welcome to the podcast. Welcome Jessica to the empowEAR Audiology podcast. Thanks for being here.
[00:04:24] Jessica: Of course. Thank you so much for having me.
[00:04:27] Carrie: Well, I this is a different kind of podcast, because I get to interview a good friend of mine and an an audiologist.
[00:04:35] And because I, whenever I have an audiologist on the podcast, I always like to find out from them. How did you get into the field? Do you have a story behind that? Yeah.
[00:04:45] Jessica: So, you know, honestly it's not a very cool one, but I started in journalism and then just randomly switched to communications and then realized I actually liked the.
[00:05:00] Helping people end up things. So it just kind of switched. And I really didn't like oral exams. So speech was not in the, you know, works for me and I love the ears and I love working with kids. So now being in the schools with you is just so much fun and I've, I've really found my passion in it. So yeah, I'm where I'm meant to be.
[00:05:24] But my story wasn't as cool. no,
[00:05:28] Carrie: that's okay. Some people have some like backstory of why they got into it and they met someone or whatever, but that's great. And I know today I wanted our audience to really hear about your story about Piper’s Key and how it came to fruition, because it is a story that walks through many life emotions, including.
[00:05:51] And struggle. So I know I'm probably gonna need to grab some Kleenex here, but would you be able to just walk us through the backstory of Piper's Key?
[00:06:02] Jessica: Yes. So Piper's key is my love for my daughter, Piper, who passed away in May of 2020 from spinal muscular atrophy type zero (SMA type 0). She, when she was born, we discovered.
[00:06:19] She was unable to breathe, move, walk, anything that would muscle function she would ever have. She couldn't swallow anything. So she was immediately put on life support and taken to the NICU. And ironically, I actually do think she would've had hearing loss too. She was given Gentamycin immediately, since they didn't know what neurological disease she had at the time.
[00:06:41] But when they found out of her muscular issues. She was diagnosed with the rarest form of spinal muscular atrophy. And for those that may not know, I like to kind of compare it to it's pretty much the pediatric form of ALS. So they slowly lose all muscle function and basically are trapped in their body.
[00:07:03] So after 27 days, my husband and I made that painstaking decision to remove life support. And we were able to remove life support at Akron Children's in the outside right next to a beaming hydrangea bush and the sun was pointing down on her. And so she just had a beautiful end of. But we often call that our opportunity to unlock her from her body.
[00:07:32] So we gave her the key that ultimately freed her. And so I knew when she passed, I needed to find a way to help her live on, like, I wanted a way to parent her still. I didn't know what that would look like, but I'm just, that's who I am. I like to create and give back. And I also knew that with my profession, I could kind of mend.
[00:07:53] join both of them together. And not only be able to honor my daughter, but be able to every day through my work, provide some support. So Piper's Key is my love language. Like I said to Piper and we gift inclusive books to children with disabilities that represent themselves. Right now, most of our books are children's books, but we're really trying to start to focus on middle school and even get up to high school.
[00:08:20] And our whole goal is just that every child is able to see themselves in a book. So our motto is we're unlocking representation for every child.
[00:08:31] Carrie: That is amazing to be able to have that hope come out of something that you said was so painstaking in the process, how did you get the idea for creating the idea of inclusion and books.
[00:08:49] Jessica: So a lot of it, I'm going to say to you too, and talking to you I knew I wanted to do something that was empowering. I didn't want to focus on the grief. So many of the stories I heard and the people that do honor their children, it's wonderful, but they do focus so much on that sadness and support there, which is so needed.
[00:09:09] But I didn't wanna do that. Because I have a five year old now. Well, she's now five. She was three at the time. And I wanted to give something that she could say her name, Piper's name proudly. So I just thought of the inclusion. I thought of the kids that we work with on a daily basis and what we do. And so much of what I learned through you was that empowerment, that ownership, that self advocacy and what better way to do it in the first media device, every child gets and that's through a book.
[00:09:36] So it is the first thing they touch. The first thing they hold as far you know, learning media, reading, developing. And so why not see yourself in that book? And I noticed how empowering it for siblings and parents too, to learn how to talk about it. It's almost like, okay, I can, I can talk about this disability in, in a positive way and not be afraid of it.
[00:10:02] And if Piper was here, she would've had a huge amount of self-concept issues that she would've had to work through with all of the disabilities she would've been living.
[00:10:13] Carrie: Yeah, that's great about the different books. And like you said kids love to see themselves represented in, in books and to be able to share that gift with with others is amazing.
[00:10:25] I remember
[00:10:25] when now Piper’s Key is a 501c three nonprofit. Official organization. And I remember the day that you got your letter in the mail was significance around that can you, can you share?
[00:10:38] Jessica: that day was huge. So again, everything that happened with Piper was like right at the start of the pandemic. So everything was at a shutdown.
[00:10:49] We all know like the government and getting things was at a, such a snail pace. . And so I was prepped that I, I launched Piper's key on her first birthday, which was April 23rd, 2021. And I had filed for the 501c3, but I was warned that it would be probably a few years before it would be looked at the IRS wasn't touching that stuff at the moment.
[00:11:13] And they even have a disclaimer on the website that was like, we're not looking at 501c3 applications at this time. And Randomly on, on a day in July, I found out I was pregnant with our now rainbow. It was terrifying because we were not trying, we were wanting to adopt actually to avoid the genetic heartbreak that we had with Piper.
[00:11:36] Because she, we did have a 25% chance of it happening again. And I opened the mail after finding out and also being absolutely horrified and terrified. And I just get. Little envelope from heaven. That was Piper's status. And her 501c3 for Piper's Key. So it was almost like she was saying, Hey, Nope, I'm watching my little brother here.
[00:11:59] He is. And this is my little gift. So in July 2021, we got our 501c3 status, which was such an amazing thing. And we weren't supposed to, so that was even cooler. So.
[00:12:12] Carrie: Yeah, I would say that's definitely some Divine Intervention there for absolutely your family. And yeah. So kind of thinking about pipe is key and many of our listeners for empower your audiology are audiologists and teachers of the deaf or speech language pathologist, we parents, and other related service professionals who may be working with children with many different differences.
[00:12:38] How can the get it, you know, share Piper’s Key or, you know, what is the process there for getting some inclusive books?
[00:12:48] Jessica: Absolutely. So like I said, when I started this, obviously we don't, we're all disability. So I really try to focus on every type of disability from the most severe, multiple disability children, all the way down to maybe someone just working on speech and language from a very mild standpoint, they're just maybe a little behind.
[00:13:08] But hearing loss, being a huge passion of mine, I often say like, oh, someone will email me and say, do you have any books on hearing loss? And I'm like, do I have books on hearing loss? I have this whole library that I kind of hoard for all of us to kind of use. So if they have a student, so any audiologists out there, parents of a child with hearing loss or teachers of the deaf and hard of hearing,
[00:13:29] I would encourage you to reach out to Piper's key and visit our website. Piper key.com. and I will just mail you a book. You just gimme the details. We have books on hearing aids. We have books on bimodal children. We have books on cochelear implants. The process of cochlear implants.
[00:13:48] We have Baha books. We have books for older. We have books for younger. And so just a huge plethora of books. We also do have books available for those kids that are maybe not auditory oral and focus more on the ASL aspect too. So, you know, I really do want to keep that option open. But you know, that I would just encourage to use this resource, cuz I want them in the hands of as many kids as possible.
[00:14:13] And again, particularly those kids with hearing loss because that's the second passion of mine. So.
[00:14:19] Carrie: Yeah, I love how you were able to blend. Piper's Key your personal purpose with your personal passion of audiology too. So it's, it's a beautiful thing. Fun.
[00:14:32] Jessica: yeah. I love giving them to my students and that's, I think been a really fun part is when I get a new student or a parent or I hear about it, I get to hand them that book personally, otherwise a lot of the books just get mailed, so I don't get to see them open it.
[00:14:47] Or they're at the hospital being given out by physicians, which is a huge honor, but again, I don't get to see that face. So it's really fun being the audiologist that gets to hand them the book. And then when they see the devices on these characters, it's, it's so empowering. So I'd encourage everybody listening to definitely reach out.
[00:15:05] Cause again, no cost, just something I will mail to you.
[00:15:10] Carrie: Yeah. And that part of it. So no cost? How do you. How are you able to get these books and mail them for no cost?
[00:15:22] Jessica: Yeah. So again, because we're a 501c3 now we are completely funded through donations. So a lot of our donations are anyone that just can gift online.
[00:15:33] You can, we have a PayPal account as well, but we also do a ton of fundraisers. Now I'm in Northeast, Ohio. You know, a lot of them are local in town, but we've had so much support from my community in Hudson, Ohio that have just embraced us and given that way we have done like other kinds of fundraisers online, Facebook, if you wanna even just contribute in a small way, it does pay big forward is linking on Amazon smile.
[00:16:01] You can link a charity and we are on there as well. And so I think it's. 0.05% of that purchase goes to Piper's key. However, I will tell you if you purchase like me on Amazon, it adds up and it means something. So anyway, there's so many ways to give and we're constantly growing, but you can get a tax write off and tax deductible donation online as well through my website.
[00:16:31] Carrie: great. Yes. So I know that you have actually gotten reached out to, from organizations and different groups too, to sponsor you.
[00:16:43] Jessica: Yes. That's been really fun. We've definitely had support through some preschool parent organizations that have really wanted to like kind of embrace Piper's Key and use.
[00:16:54] As their charity of choice. We had in the winter months we had Krampus, he donated there's a Krampus character. And if anyone's heard of the German folklore, he's kind of the antithesis of Santa Claus. But anyway, nonetheless, even though he scares children, they donated a hundred percent of their proceeds to Piper's key.
[00:17:17] And that was huge. I mean, it's just their, the people that organized that. The Ohio Krampus society were just so fantastic and generous. So that's one way. And then we also are looking into grants and opportunities that way to provide that funding. A lot of the authors because their parents or professionals in the industry, or even children.
[00:17:38] We'll donate books too, and I'm able to get them at an easier cheaper rate, which is nice when I'm buying bulk, because I'm just making sure that these get into the hands of as many kids as possible. So to date, I know we're rounding the corner to over 5,000 books I've been given, which has been really cool to think about they're just constantly flying off the shelves and I'm getting more and more orders and yeah, I love it.
[00:18:03] So again, emailing me. It is no cost. I will mail it out a hundred percent because all the money about 95% of it goes directly to the books. The other 5% just go to stickers and bookmarks and postage.
[00:18:17] Carrie: All right. That's amazing. And almost 5,000 books have been given, which is a, a huge milestone. I think another thing that you have told me about because of Piper Key that you didn't really expect was some additional community reach.
[00:18:34] And one of those endeavors being the mini libraries that are in outside locations. Can you share a little bit about that?
[00:18:42] Jessica: Yeah, that's been really fun. So one of the projects that I'm starting to really enjoy is trying to go into the communities and seeing if we can set up many little libraries, those free inclusive libraries that you see around towns.
[00:18:58] And I want the libraries to really be focused on that kindness, inclusivity for children with disabilities. And we have set one up at one of the elementary schools that I work work at. And then I also just set one up where Piper is buried at her resting place and that one's more grief focused, so it's not necessarily on disabilities, but nonetheless it's a inclusive book box that can anyone can grab and use just to again, get access to that.
[00:19:26] And so my goal would be to also set them up in communities. So I Tried to let people know that I know if they want to do that at their, in their town contact Piper's Key and we'll work with you to try to see how to get that rolling. There's lots of ways to do it. With the box at the cemetery, we actually had a wonderful Eagle scout do it, and she built the whole thing.
[00:19:46] It's amazing. And yes, SHEdid it. So it was really cool that it was a female Eagle scout. And I know we want to set some up in the around town and Hudson as well. And also at Summit Educational service center. We were talking about that too. So for the following, year just to make sure we spread that.
[00:20:07] Carrie: Yeah, just a great, I guess byproduct of Piper Key to yeah. Serve in the community that way as well. So, Jessica, do you have any future goals or thoughts about Piper's Key and next steps
[00:20:22] Jessica: Yeah. So it's funny. I say that Piper's key, even though right now I have this perfect little mission statement.
[00:20:31] I've always said, it's now I'm hearing like so many whispers. Like if I wanted to, I could really take this off and, you know, I really want it to be something that people lean on, but I do want it to evolve. I've said if Piper was here, she'd be growing up and going through different stages. So I've even met with an adult disability organization and trying to see how we could support there.
[00:20:53] We, it might be through books. It might be through a library for adults. But either way, I kind of just see it moving through the motions as the Piper was here and growing up too. So it's not just for children. That's why I do encourage that anyone that has a child of any age with a disability reach out, because I'd like to do my research and try to find.
[00:21:15] Some avenue to support them and empower that, that individual. But yeah, I, I wish I could say I knew where it was going and my goals are that we just continue to make progress in getting kids, confident, families, confident. I think that's a huge one. And I'm just gonna let it continue to go where it needs to go.
[00:21:34] I never saw it going as far as it's going right now. And so I'm really encouraged to watch It kind of fly. And again, the fact that I get emergent with educational audiology and with my profession and see these kids that I see every day enjoy it is just, it's a blessing and something I never really even thought of.
[00:21:58] Carrie: Yeah. And I would have to say, you know, from my standpoint, too, just being able to give books to kids too, I see the, their face light up and they're excited and they're just clutching their book and they're like, we can take it home with us. They're so excited that is theirs. And, and they can keep it and share it with their classmates and, and things like that.
[00:22:18] So really seeing themselves in books is so important. Mm-hmm. I agree. Is there anything that I didn't get to ask you that you wanna share about Piper's key?
[00:22:31] Jessica: You know, honestly, I think the biggest thing is just know that this is a resource out there. I've had some professionals hesitant. They don't wanna necessarily take the resources away from me, but that's the point.
[00:22:43] The point is to mail it to kids. And so. You are hesitant to give it directly to a family. If, if there's an audiologist or teacher of the deaf out there listening right now that maybe doesn't want to provide that child's information, you can do what we do Carrie and that is just, I'll send you a box of books and you can give them to your kids that way, if you'd rather hand them out themselves and, and give them that way, otherwise parents again, reach out.
[00:23:12] So I want this resource to be available. Take advantage. I've got lots of books. We continue to grow. The authors that I have for hearing loss are just so phenomenal. Their parents with such passion, their kids with such passion. And so yeah, let's get these in their hands.
[00:23:31] Carrie: Yeah. And if people do wanna order books, can you share a little bit about navigating your website and what your website's address is?
[00:23:40] Jessica: Absolutely. So my we address is www.Piperskey.com. And when you go to the website you're gonna go to donate to the. And then send a child a book. I do have a lot of my books listed on the website that you can kind of comb through. But I often say because it's constantly evolving, that's not all my books.
[00:24:02] So that will, when you type in the information, it will email me directly and I'll get more information, just really make sure I match the appropriate book to that child. So really it's just email me out that way. If you'd rather email me directly and not go through the website. My emails, Piperkey 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 t