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 40: empowEAR Audiology - Matt Hay

[00:00:00] Announcer: Welcome to episode 40 of empowEAR Audiology with Dr. Carrie Spangler.
[00:00:15] Carrie: Welcome to the empowEAR Audiology podcast, which is part of the 3C Digital Media Network. My name is Dr. Carrie Spangler and I am your host. I am a passionate audiologist with a lifelong journey of living with hearing challenges and this vibrant hearing world. This podcast is for professionals, parents, individuals, with your own challenges and those who want to be inspired.
[00:00:44] Thank you for listening, and I hope you will subscribe, invite others to listen and leave me a positive review. I also wanted to invite all of you to visit and engage in the conversation on the empowEAR Audiology Facebook group. Transcripts for each episode can be found at www dot three, the number three, C digital media network dot com under the empowEAR podcast tab.
[00:01:18] Now let's get started with today's episode. Welcome to the empowEAR Audiology podcast. I'm really excited today to introduce my guest, Matt Hay. And I'm going to give a little background about Matt for all of you today. And then we'll get into, I have a, some of the question and answer of everything that he has to say.
[00:01:41] And I'm just going to read his bio up on his website. Matt was a sophomore in college when he finds out that he is going to lose his hearing because through the early years of his diagnosis and denial, but as his hearing aids get bigger and bigger, Matt realizes he wants to capture the sound that is slipping away.
[00:02:03] His girlfriend voice, the click of her heels, and especially the songs of the invincible youth. Matt starts listening to music with a new appreciation, truly studying it he curates a soundtrack for the rest of it. Between each song, there is a coming of age story about freedom, tragedy and falling in love.
[00:02:27] When maps hearing eventually fades to nothing, the silent soundtrack in his head takes on a role he never imagined the audience for his story of overcoming the physical, mental, and emotional challenges always changes, but his authentic delivery never dies. He shares his message and hopes Someone from ever, ever feeling as last helpless and alone, as he did the day he woke up death, the day sound became only a memory.
[00:02:59] So with that introduction, I know we're going to have an amazing conversation today that is going to be uplifting and really about overcoming obstacles. So Matt welcome.
[00:03:11] Matt: Well, thank you very much. I, I hear you say all of that just now as an intro, which was, I know where you got that, but I think I'm also the guy
[00:03:20] There's dishwasher broke this morning and was annoyed that I have to hand wash utensils. So you know, a lot of different facets at play there.
[00:03:29] Carrie: Yeah. Well, thank you for being a part of this. I know. I'm excited cause I felt like just in the past, maybe three or four months, I pathjs keep intersecting, whether it's through social media or a couple of other networking opportunities and I'm excited to actually get to meet you virtually in person and and get to know you a little bit better.
[00:03:53] So can you just start out a little bit of just reviewing a little bit of your story for an audience today?
[00:04:01] Matt: Sure. And I I'm particularly grateful to be here because like you said, you and I have had some parallel paths. But you come at this from the perspective of the perspective of a doctor of audiology.
[00:04:15] And I came from it from the perspective of a guy that just failed a lot, trying to hear it better. And wish I had met you and your colleagues you know, years sooner. So it's, it's pretty surreal and, and humbling for me to be a part of a conversation with so many professionals that do this. So I I'm 45 now and I was diagnosed.
[00:04:35] I started losing my hearing my sophomore year of college at Indiana University, which would have been 97, 1997. And when you're 17, I guess, 18, 19 years old, your sophomore year of college, not a whole lot of people are losing their hearing. So it was kind of a weird experience. I didn't know exactly where to go or what to do.
[00:04:53] . And I'm very, very fortunate that when my parents finally talked to me and to seeing a hearing care professional I saw someone who made no effort to sell me a hearing aid. They made an effort to treat me and treat whole me. And they said, based on the outcome of what we're saying, we're not sure we can help you.
[00:05:16] So before we make any assumptions, we think you need to see an ENT. And so I saw an ENT who got me set up for an MRI and was diagnosed with bilateral acoustic neuromas which is fancy talk for, I had two marble size benign tumors on my hearing nerves. And I don't think it wasn't until recently that I realized how lucky I was to have a hearing care professional will say, I think you need more help because they could have easily fit me for an in the canal aid.
[00:05:48] Ah, I've just been hearing care. I can legit save lives. So based on the results of that, that MRI, I was diagnosed with neurofibromatosis specifically NF2 to which at first you've probably never heard of outside of maybe one day, one chapter of a book in grad school. But neurofibromatosis is a disorder that causes nerves to grow our tumors, to grow on any nerve in your body.
[00:06:17] They grow on the sheath that surrounds your nerve, which is like if you've ever plugged in a cable and it feels like rubber or the cable inside is actually electrical, just like a nerve. And it's covered with a rubber coating. That's just like your nerves are the same way. And so I have a tumor that could grow anywhere on any of those nerves.
[00:06:36] And I have several dozen, but the two most distinguishable were on my hearing or. And over the next 10 years just like my doctor said would probably happen. I ended up losing my hearing because of those nerves, those tumors.
[00:06:51] Carrie: So after you found out when you were 18 or 19 and you started going through the process with your ENT, at what point did it got to the point where they needed to do surgery and how did that process go for you?
[00:07:08] Matt: But I think, and I didn't realize this at the time either, but when you get, whether it's hearing loss or vision or any sort of physical ailment that you, once you kind of realize, Hey, this is going to be around, this is something I have to deal with. There's a grieving process. And I was oblivious to that.
[00:07:28] And I didn't know I was going through it at the time, but you know, you just, same thing. You go through this denial, you go through a negotiation, you go through an acceptance And I, I spent years in the denial of, Hey, this is going to happen to me, even though my hearing scores were basically saying that this is not whether or not it's going to happen, it's happening right now.
[00:07:48] And so my hearing aids got bigger and bigger and we eventually got to a point where we said, okay, we know I'm going to lose my hearing because my nerves are no longer going to work, which is, you know, I couldn't get a hearing aid to help with that. You can't even get a cochlear implant to help with that.
[00:08:05] And I said, we have, we're going to have to remove the larger of those tumors. And there's a relatively at the time had just been approved by the FDA, a device called an auditory brainstem implant. That, I mean, literally it looks like a CI, but it bypasses all of your natural hearing and they sewed 12 electrodes directly onto your brainstem.
[00:08:26] And some really smart people say, we think that's the part of your brain that processes sound and. So they implant that and it takes eight weeks for them to turn it back on and because they have to wait for it to heal. And you just hope that those are the 12 electrodes work. In the meantime, you know, brain surgery just by itself is no casual thing.
[00:08:49] And I woke up with facial paralysis and couldn't walk and had double vision. And so it was kind of like, all right, I was really worried about my hearing, but I have a whole lot of other stuff. Like I can't get out of bed and I can't move my legs. So you start to learn to take things one at a time. And as I worked on that, we kept waiting and hoping when they do turn that implant on that, it's going to sound okay.
[00:09:13] And fast-forward day, weeks later, they, they turn it on. And this is at the House Ear Institute in Los Angeles. And they said with an auditory brainstem implant, you're probably just going to hear life sounds, which is like oven timers or police. But when you now have been deaf for a few months oven timers and police sirens sounds like Beethoven, right?
[00:09:35] I mean, I would love to hear it often times. So they turned it on and it did exactly what they said. It was just all buzzing. And I could hear shoes on the floor, but I couldn't distinguish that between somebody saying hello. And so though I was so grateful that it worked and that lasted for about an hour and then I wanted to sound better.
[00:09:56] So I very quickly moved from, oh, I'm so glad this worked too. It's not good enough. It's not good enough.
[00:10:04] Carrie: Yeah. So about how long did it take for you? I guess, can we go back a little bit about the after the surgery? You said you had the double vision, you had, you weren't able to walk you dizzy, all of those different components.
[00:10:21] What did you have to do to get yourself walking again and being able to see again, I mean, I'm sure at this point, hearing was not even something that you were very concerned or you you're concerned, but life things were happening to you.
[00:10:37] Matt: It really did come down to priorities of what do I need to do to get through today.
[00:10:43] And your world goes from being, you know, this big, to this big, like what is you know, with the facial paralysis, the first thing I need to be able to do is swallow so I can eat. And then how do I blink so that my eye doesn't get red and irritable and damaged. And so it's kind of funny. Do you think I have this invasive brain surgery and the things that I'm working on right now are swallowing and blinking, which are certainly things.
[00:11:10] I took for granted before. And so you work on that and then you start thinking, all right, well, now that I can eat, I want to be able to move. And at first it was out of bed and into a wheelchair. And then after a few weeks of rehab, you can move your feet. And I said, okay, now I can be in a wheelchair and kind of get around on my own.
[00:11:33] But now I want to walk. So I moved from few weeks of a wheelchair, a few weeks into a walker, then a few weeks on a cane. And it just the important thing for me, and unfortunately I've always been very goal oriented, was to celebrate, identify like small measurable goals. And then celebrate those small measurable wins.
[00:11:55] So by that, I mean, moving to a walker was a huge deal. So, so what if I was at deaf 24 year old using a walker with little tennis balls and I was in a long-term care facility and I was the only one they were under 60. And you could focus on that part and say, well, this kind of stinks. Cause my friends are all at the bars in Chicago watching the Cubs game or whatever.
[00:12:18] And here I am on a walker. It was important for me to celebrate small wins and recognize that I moved from a wheelchair to a walker in two weeks. And we didn't know if I would ever be able to do that. Recognizing those successes are enough to say, okay, well now my goal is going to be to get from a walker to a cane.
[00:12:40] And then once I can do, that's how I'm going to fill my time and occupied my mental focus because eight weeks from now, I hope I'm going to have my hearing back. So I think a lesson I learned very quickly was measurable progress today. I took two steps with a walker, you know, the next day I took four and celebrating that.
[00:13:01] So that was enough to kind of carry me to a point that I was on a cane and very unsteady without a cane when they went to turn my implant on. And I think I had learned some good lessons through that process because instead of being very frustrated right out of the gate with the fact that things didn't sound as well as I hoped.
[00:13:20] And I think anybody that gets fitted for a hearing aid probably goes through the same thing of like things sound different, or I don't like the way, you know, whatever sounds versus what it used to being able to say, okay, well, this is what it sounds like today, and I'm going to work at it and I'm going to wear it and I'm going to practice with it.
[00:13:39] And then maybe not today, maybe not tomorrow, maybe not next week, but soon I'm going to get another test. And it's going to show that I have improved. And even if that's a little bit that's enough of a carrot on a stick to keep me moving forward and working harder
[00:13:56] Carrie: I mean, for me, for the cochlear implant, I remember someone telling me who had gotten a cochlear implant before say think of your activation day as your worst hearing day ever.
[00:14:06] Yeah.
[00:14:06] Matt: Yes expectation management is key. Yeah, it is. It is.
[00:14:12] Carrie: You have a lot of grit and determination for going through, and I love your analogy, like celebrating the small steps along the way, and having a, you know, those small goals. Who helped you with that mindset. Did you have people surrounding you that would like those people who kept cheering you on to that next step?
[00:14:39] Matt: So I'm very fortunate to have a mom and dad that backed me up in everything that I did growing up to, so I guess sort of. Set the table for that. Yeah. My dad taught wood shop in his mentality and everything was just work hard, work, hard, work hard. My mom taught kindergarten and her mentality was just be kind to be kind, be kind.
[00:15:01] That's a pretty good combination of work hard and be kind. I wasn't married at the time, but was dating my now wife of 19 years and having her there and her patience and understanding. But it's also easy when you have all of this happen to you with health stuff and it's okay to get self-involved because there is a little bit of like self preservation.
[00:15:26] So I think I learned the hard way of, well, I know I learned through a lot of failure. This is again, whether it's hearing loss or any other physical or emotional or mental thing you're trying to overcome is. If you're fortunate enough to be surrounded by people that are there to support you, give them a lot of patience because there's no, they're never going to be able to understand what you go through.
[00:15:51] And I remember being so frustrated and saying like, you just don't get it. You don't understand why this is hard, why it's exhausting, why it's lonely, why can be surrounded by this support and still feel totally on my own and alone. That's not their fault. So having patience and a little bit of grace with them and recognizing they're doing the best they can, and then doing your best to communicate and maybe what you're going through.
[00:16:21] And they're likely going to give you the same kind of patience and grace and say, all right, he's snapped at me about this. And all I'm trying to do is help get him into the door. And I remember coming home on a walker to my mom's. And she's got knickknack stuff, everywhere, kindergarten teachers, right.
[00:16:39] Woodent necklace and like little like decorative stuff everywhere. And I walked in and I tripped over the welcome rug that had some kind of like feather little saying. And then I turned to unhooked from the rug and I knocked over like a wooden cat's Meow village that she has on. When I turned to fix that my arm got caught on the coat rack that she had next to.
[00:17:01] No, I don't. I was just like, I felt like a Saturday night live skit and I'm only six feet into the house. But all she wanted to do was make me feel at home and welcome. And so I think some of that that determination, it was certainly challenged. But a lot of them came from the upbringing, but to just having patience with the people around you and.
[00:17:25] Doing your best to over communicate where you're coming from. There I know that I say all that as if it's that easy, because I'm still not very good at it. And I've been working on it for 45 years. But I feel like the times where it got really hard, if I stepped back and said, well, am I explaining to them whether it's my doctor or my girlfriend at the time, or my parents am I explaining to them why I'm so frustrated because sometimes, and here's an example of that is that I was in physical rehab and I had a therapist who just had me riding an exercise bike, and I thought there's so much I can't do.
[00:18:04] Why am I just sitting on a bike? And so once I explained that to her, she explained why I was doing that. And then the next day we mixed in some stuff was like a medicine ball. And I was happier because I felt like I was doing a thing. She was happier because she knew that she was challenging me and engaging me, which is what a good physical therapist to do.
[00:18:26] But it all came back to me, not communicating well enough. And I think when you improve that communication, you start to see some better outcomes and it's a lot easier to be gritty. And it's a lot easier to persevere when you see, okay, well this week I'm better than I was last week. Yeah,
[00:18:44] Carrie: no, those are all good things.
[00:18:45] And it is, it's hard for people who are not living with, you know, hearing challenges that hearing loss to understand the everyday challenges of communication. Yeah. And even you can't, they're not in your shoes. One question I have for you is I know. Auditory brainstem implant. So pretty rare. It's not as common as like a cochlear implant.
[00:19:12] Did you have anyone in your life that had gone through the, the auditory brainstem implant process that you were able to talk to reach out to?
[00:19:25] Matt: So that is a great question because this was been around 2004 and I tried, I mean, when I was diagnosed with NF, I went on the Netscape navigator ended N you know, they, you couldn't Google something because Google didn't exist.
[00:19:39] So I Netscape and, and there were no hits, I mean,imagein going online now and Googling something and not even getting like, sorry, the internet has no answers. And so when I did the same thing with an ABI. There were people still, maybe like AOL messenger was just sort of starting. And so my hospital, the ENT in LA tried to connect me with somebody and their experience, I think in life was very different than mine.
[00:20:09] And they only had really negative things to share, which kind of made me feel worse. And I felt very alone. And I, in you, you mentioned this in the intro, that experience of losing my hearing and just wanting so badly to be able to tell us, have somebody say, here's the part that really stinks.
[00:20:28] Here's the part that's hard. That gets better. And here's the part that's great. I, I just wanted to get input and I had nowhere to turn for that. And I think it, that was a pretty fundamental change for my kind of long-term goals in life is I thought, Hey, wouldn't it be great. To help people not feel the way that I feel right now.
[00:20:51] And I had no idea how I was going to do that. And it took me 20 years to figure out how I was going to do that. But in the back of my mind, it was always how this was one of the scariest times of my life. What if I could for a living do something that helped other people not feel and share the scariest time of my life and have them experience the same thing.
[00:21:12] So I didn't know what to expect. And I think because of that and, and this is anecdotal and I, you, you, you only get one chance to live life. So I don't know for sure, but it took me decades to seek out professional help to get better with my hearing. And I don't know if that was time that I needed, I've had my implant for 18 years now.
[00:21:35] I don't know if I could have improved in those first 10 years, because there's a lot of your brains relearning to process sound. But I didn't make any effort. You know, I mentioned before they turned it on and I heard noises, I, and everything sounded like gravel trucks. Everything sounded like wadding up aluminum foil.
[00:21:53] Somebody would say hello, when it sounded like wadding up aluminum foil in two beats. And then everybody said, well, Hey, that's pretty good because we didn't know if the ABI would work at all. And I think I got a little bit lazy because everybody was telling me I was doing well with it. And so I had no standard to measure myself by and I, I quit trying for about a decade.
[00:22:17] I quit trying. And then my kids were born and I couldn't, it was a scary feeling because if one of my kids said, Hey, dad, help or something. I didn't know why it's only one sided. Now I'm still deaf on this side. You can't tell where sounds coming from you. Can't tell, who's asking for that. And that's that was the motivation I needed to be like, all right, I got, I, I need to give this a real chance.
[00:22:45] And so that's when the music aspect started coming into play, as I started using sort of self prescribed music therapy. And and that helped a little bit too of, you know, I listened to a lot of beetles before I lost my hearing. And so I started listening to Beatles again. And even though I didn't sound anywhere near the same, I slowly started picking up things like, Hey Jude, or, you know, the refrains or chords from let it be.
[00:23:12] And I think it acted as a bit of a Rosetta stone for my brain of, oh, well, your ABI has been telling us things, sound this way. But now we remember from in Bloomington and your dorm room listening to this song. So now my brain's going to tell me ABI that things actually are supposed to sound in this play. And I, I kind of envisioned this like argument between my brain and my implant.
[00:23:36] And over time, my brain started winning those just from muscle memory of this is the way that song used to sound. And so I really credit music taking from my sort of my hint recognition scores, kind of a universal understanding of speech understanding my HINT scores went from the mid thirties to the mid sixties, but it took me close to 15 years to get there.
[00:23:59] And I credited music for that progress. I just wish I had had somebody say sooner, you know, there's things out there that could help you beyond. Kind of existing in the world.
[00:24:12] Carrie: And I know I'm kind of getting ahead of myself too, but recently you've also participated in some more like one-on-one therapy for auditory listening.
[00:24:23] Can you share a little bit about that?
[00:24:26] Matt: Sure. And this is, this was I don't know, serendipity is a great words, unexpected gifts, right? You'd think that I would have learned from not getting better over 10 years not to get lazy, but that's exactly what happened. My HINT scores went from 30 to 60 and I said, and everybody, my audiologist said, wow, that's great for an auditory brainstem implant.
[00:24:47] And so I got lazy again. And so for the next three or four years, I stayed right there, but I was, I couldn't use the phone. Things still sounded very robotic and muffled. But I could tell the difference between the way my son said, Hey dad and Louie, my daughter would say, hi dad, it's Maddie. Like that was enough for me.
[00:25:07] And I got lazy as I continued to kind of flow through that, I was like, dude, is this really all I ever, like, I don't want to be able to, am I not going to use the phone ever again? Around that time technology with, you know, the video calling that we're using now, I use Otter live transcript, live transcription, and I started having these other things.
[00:25:28] And I was like, gosh, I feel like I'm almost there and understanding what people are saying based on what I see and read. So I got a little bit more motivated and I work in audiology care now and had seen a name of somebody working in auditory processing disorder training, which I had never heard of.
[00:25:46] But I sell a, a dryer for hearables and I thought, well, this person seems to be very involved in the audiology community. I'll call out, I'll reach out to her and maybe I can sell her something. So I reached out to a woman in Australia. We didn't, we hadn't placed any devices in Australia. So there's a woman by the name of Angela Alexandra.
[00:26:05] And I called her 100% with the goal of selling her a Redux drying system. And she made it clear out of the gate that that's not what she did. She focused on more of this thing called the auditory processing and I nodded and acted like I knew exactly what she was talking about. And somewhere in that 90 minute sales call and it ended up being like a terrible sales call cause she had no interest in buying.
[00:26:33] The conversation became much more about brain, the way my brain processes sound through an ABI and how unique that was. And also how the industry is starting to learn. And science is starting to learn about how integral the brain is in hearing. You know, we think we hear with your ears, but yours don't really do anything except pass along vibrations to your brain and your brain.
[00:26:59] So you actually hear with an Angela said, Hey, I would like to study you. And so I agreed at this point just because she's a better salesperson than I am, and she talked me into it. And the outcome of that was we started meeting for a couple of hours a week. And this was just last year. And in one year of having a professional say, I'm going to help you, not with life sounds and not with song lyrics, but I'm going to focus on individual sounds of words, which I learned to call them phonemes, which audiologists know, but most, most normal people though And we've.
[00:27:35] So it was everything from down to, without seeing these speak, we're going to work on the sound of ma versus NA or PA. I mean, the idea of me trying to identify the P sound it was just like, there's just no way I can do this. And so we went through the testing and I failed miserably and we did it the following week and I failed miserably.
[00:27:57] And somewhere over the course of the next 10 weeks, I started failing less miserably and less miserably to a point where I was very genuinely hearing the sounds that she was making and my HINT scores keep in mind, it took 16 or 17 years to go from zero to 60%. It took a one year of that auditory processing training to go from 60 to 90.
[00:28:25] And I don't, this is anecdotal. So I don't want to pretend like you're going to see a 30 percentage point increase in a year. I don't know if that's great. I don't know if it's bad. I don't know. I just know that's the experience that I had. And there were a lot of lessons for me there because one step I need to stop being lazy and accepting it wherever I am that let other people define this is good.
[00:28:51] Like I need to be the one that defines is this good enough for me? And the value of seeking professional help. And this is really kind of sports analogy. I'm very analogy driven with the sports analogy of coaching is great. During COVID my son and I tried to take up. Well, I thought I'm going to wait to take a lesson until I get good enough.
[00:29:13] And then the lesson will be helpful. And so every day, five days a week, I would go out without a lesson and started out terrible and never got better. I was just practicing bad habits. I didn't know what I was doing. And I, the idea of wait until you're good to get a lesson is just ridiculous. I got better in one 30 minute lesson than I did in 30 days.
[00:29:35] They're trying to do it on my own. And that if I'm so willing to, and that's pretty accepted in sports, why in the world would I do that with my hearing? And so I, I credit Angela and the work that we did together, it was me finally saying, okay, I'm going to get a hearing coach. And and she's going to help me, even if she doesn't, if I don't get better.
[00:29:57] She can give me some good habits and good things to work on. I did get better, but that was just a lucky fortunate outcome that wasn't even the goal.
[00:30:06] Carrie: Yeah. Your point is well taken, I think. And I'm just gonna speak from my own personal experience of going through the cochlear implant process and being an audiologist.
[00:30:17] I don't think we, and I'm just going to say audiology world in general does a really good job with that post implant coaching, auditory rehab as a, you know, much needed part of it. And, and I don't want to say everyone, but I just want to say, like, we, we talk about APPs. So we talk about, you know, listening to an audio book on, you know, or whatever it happens to be.
[00:30:49] But I would say there was a lot of value for me having a real person. I have what you call an auditory, a coach to that I went to, to help me make sense of, I want to say almost like learning a new language because you're listening to such a different signal than an acoustic signal. And your brain has no idea what it's listening, for.
[00:31:14] And by having someone who's benchmarking you, they can say, look, you started out like what you said. Look I, I would bomb to this, but now look where you're at. And it gives you motivation to be like, all right, I can do this. I can, I have somebody that's keeping me accountable, motivating me to take that next step.
[00:31:36] And that letting someone else define what good is having, you know you do that,
[00:31:43] Matt: And you're you're, that has been my experience as well. Is that because you live your hearing every day. So even if you have bad hearing, you're living your bad hearing every day. So if it does get better, it doesn't happen, you know, in an instant.
[00:31:58] So it's hard to recognize, oh, this got better. You know, even with vision, you can be like, well, I can read that better, or I can see that sign now, but with hearing it's you can't think, oh, well I hear that bird a little bit more clearly. Or so having those objective measures and having something on written down to say, did you know that even four weeks ago you were here and now you're here?
[00:32:22] It can be it's rewarding. It makes you feel good. And like, you know, like if you're dieting and you never see that you lose weight, if that's your goal, it's hard to say I'm going to keep doing this, but there's a reason there's reasons scales exist. Right? I mean weight Watchers has scales for a reason. There, this is the same way let's measure and show you the change that we're making.
[00:32:42] And in the point you make is about, and I don't know if lack of support is, is the right phrase, but I know I sought out help. I mean, I was actively looking for help and there was a CD rom now like, oh, Hey, here's a CD rom, well, Phil Nicholson didn't win the masters because of a CD rom, you know, you, you, you need that engagement.
[00:33:07] You need something that's constantly being adapted to you. I think I love the growth of the CI cochlear implant in the community for people to choose that path. And I work with an organization in Indianapolis called the St. Joseph Institute for the day. And the Indianapolis community is fortunate to have a great cochlear implant program with IU health and Riley children's hospital.
[00:33:31] So there are a lot of kids in Indiana at as young as 18 months that are getting these implants. And there's the, I think this assumption that they've been fixed, you know, like, Hey, we fixed that problem. And then they get into kindergarten and they're nowhere near ready. They're not on par with listening and spoken language with their peers.
[00:33:53] So what St Joe's does, is there a school dedicated to helping kids that get implanted in early age, prepare for mainstream education? And so I see the work that they do all the time and think, gosh, without the support, you have somebody that has all of these amazing tools and nobody ever showed them the right way to use them.
[00:34:15] You're like, all right, well, you got the nail in the hole, right. But you used a screwdriver to bang it in. You got a hammer there that would have worked great. If only someone had taken the time to show you how to use the tools that you have. And that's an area we'd love to see, continue to grow, because I don't know that the long-term solution is there's an app for that, or there's a CD rom for that, right?
[00:34:37] Yeah. You're right.
[00:34:38] Carrie: One thing that you said too is you did, you know, you said your HINT scores improved then, and you were happy about having someone coach you. What did you notice about your everyday life? Were there some things within your environment that you were like, I can hear better in this setting?
[00:35:01] Or what are some of those discoveries that you had?
[00:35:05] Matt: So there, I'm glad you asked that because I just made them point about how. Because you live with everyday, it's hard to notice the change. So even going through the coaching, it was still, I wasn't really trying to identify a change, so I didn't know that it was happening.
[00:35:23] And I mentioned working with Dr. Alexander and one of the things that she would ask at the beginning of our therapy sessions was, did you notice a change this week or did they notice anything new this week? Which was great because sometimes the answer was no. And I, and to create an environment where I was comfortable saying, no, I didn't notice a change that that's healthy.
[00:35:46] I mean, it's, if we have that kind of being able to be that honest and not say, make something up, but it also forced me to be more mindful of what did I notice? And I mentioned the Beatles earlier. So I use that as an example, I have the same 60 S I have a 66 song playlist, and I add about two songs a year to that, but it's mostly songs
[00:36:07] Then I listened to a lot before I lost hearing and then songs that helped me as I was trying to recover. And there's a line that the Beatless line that says for, for a long time, I thought it was mother Mary comforts me and I was driving into work and it, and it said it's mother Mary comes to me and I hadn't heard the T in, comes to me in 20 years.
[00:36:31] And I remember rewinding and listening to it over and over again, you know, rewinding so old school, but backing up and listen to it over and over again. And it like, it was so clearly mother Mary comes to me that I was excited to tell her I heard a new line in the song and, and there's no way that's coincidence because there's no way I heard a distinctly T sound the same month that we were working on identifying the phoneme T.
[00:37:01] Yeah. And I think that the brain got lazy, like I said, had just gotten lazy and it wasn't, it wasn't listening for. And so when I heard it in a real world environment and something that I've been listening to over and over again, it was a very objective way for me to say that's gotten better. Ah that's and I, my wife and two other friends both commented that my, they could tell a difference in my speech.
[00:37:29] And I think it was because I was ennunciating letters that I had gotten a little bit lazy with. Like even now, and I said, I had gotten. It's very common for people to pronounce better. That's B E D D E R. And so even just little things like making sure I'm saying, using a T and better or a pen, I write with a pen, you know, but I, I, I, my daughter puts a pin in her hair.
[00:37:56] And so just identifying those different sounds people that are been around me almost every day for decades could notice that my speech or that may speech was a little bit more clear.
[00:38:08] Carrie: That's exciting. Those are all huge. I mean, there's small steps, but they're huge in the big picture, which is exciting.
[00:38:15] One question I have for you. As you had said, you never, you know, we didn't have Google and you'd never met anybody else with a auditory brainstem implant. And the person that you did connect with, didn't have a good experience now that you're kind of out there and people know who you are and you have been publicly sharing your story.
[00:38:40] Have you been able to meet or mentor anyone that is thinking about getting an auditory brain stem implant or who has gotten one and be able to coach them a little bit through the process?
[00:38:54] Matt: So yeah, the sort of answer to that is yes, certainly. And it is something I I feel a very heavy sense of responsibility because I'm not a doctor and I don't, I want to make sure people are aware that my experience is my experience.
[00:39:13] My experience is not the way it works or what their experience will be. It's kind of a weird way of losing my hearing. I, I, I don't know that I was the most empathetic person in the world before. Losing my hearing probably made me a little bit more empathetic and understanding that what you're going through was is difficult for you because it's you, and it's your life and your experience.
[00:39:36] I try to be more mindful of that. And I don't think I did very well with that 10 years ago. And so I do share my experience and tried to go back to what I said earlier, which is, I want to share with you the parts that were really, really hard because I don't want to pretend like I don't want you to look at my eight year 18 with hundreds and hundreds and hundreds of hours of effort and think that's day one.
[00:40:06] So that expectation management is a big part of it. So I wouldn't know. What's hard. And when I say hard, I mean, physically, mentally, emotionally where I failed like that, you know, I'm being short with friends and family or the first year after I was just spoke with someone this morning at 10:00 AM who's as a family member of getting an implant in March.
[00:40:28] And I said, one of the regrets that I have is, and I couldn't move my half of my face. I have a little bit of that movement back, but I still can't feel this side of my face. And I've had a dozen eye surgeries and have my tear duct is plugged and I have a platinum weight and my eyelid and I didn't allow a picture taken of me for a year and I didn't go out and do anything for a year.
[00:40:51] And my poor wife here, you were dating, we're now married and mid twenties in Chicago and the whole world's happening around us. And. I didn't go anywhere because I didn't want anybody to see me what I felt. I felt like I looked bad and felt bad. And the progress that I have made since then I know I, I miss and I wished that I had that first year to be able to come compare myself against, to say, okay, I might be frustrated with something today, but look how far I've come.
[00:41:22] And so my advice to her, for her family member was even if you just keep them to yourself that first year is going to be the worst. Like you said, day one is the hard is the worst hearing day. Make note of that, you know, be aware of what you can and can't hear whether you journal it or a photograph.
[00:41:41] Because it was, it gets better. It's encouraging to be able to look back at that day. I also tell them what's great about it because it's, I don't, I try to be a pretty good glass, half full person. So I tried to balance the expectation management with, you know, what, even if I mean, cause there was a summer where I couldn't hear anything and my wife and I had to work out a system where, when she would come home from work and I was home on disability, she would have to turn on and we agreed that she would flick the lights on and off as soon as she got in, because she would scare the tar out of me when I'd be sitting down, watching TV on closed caption and she would appear or throw a pillow at me being able to hear her footsteps, even if I didn't recognize they were footsteps, but the thump, thump, thump of heels on hardwood or oven timer.
[00:42:28] I burned a lot of pizzas that summer because I would forget. And I wouldn't notice until I would smell it or see the smoke.. Being able to hear those things is a huge deal is a huge deal. So just recognizing this kind of goes back to the small wins thing, recognizing that even if it's not what you think it's going to be on day one, there are still things out of the gate they're going to be better than where you were before.
[00:42:54] So yes, I do have those opportunities and it's something that I take very, very seriously because I know just how much I needed that. And I don't want to give anybody false hope, but I also want them to know that there are things that it's like anything else in life, you know, the, some parts hard, the some parts easier.
[00:43:14] So much of what I've experienced now with. There's a phrase that I love is the difference between a problem and an opportunity is your perspective. And so anytime I face a problem, whether it's hearing or NF related, I think, okay, that's not going to change. What can change is how I look at this? So am I looking at this as a problem, or can I shift and look at this as an opportunity?
[00:43:38] And that's really, really hard. But being like, I, I try to help other people think of looking at it that way, knowing that they're going to fail at it all the time, just like I do. But if you succeed at it even once a day that's progress. Well, I
[00:43:56] Carrie: just want to thank you by sharing your story with others, because I know from my perspective too, As an audiologist going through the cochlear implant process, it was still the people that had gone through the process personally, before me that were my sounding board that were my motivation that shared the ups and downs with me, which, you know, a surgeon or an audiologist or anybody else on that medical team, unless they happen to have an implant, they don't know.
[00:44:36] So it's people like you who are vulnerable and willing to be. Out there and share you a story that's really going to help someone else who is going through the same thing. So thank you for that. I just thought well,
[00:44:51] Matt: and I, I feel like I shouldn't say the exact same thing back to you because your patients in your community probably doesn't realize how, and I know you're going to like blush or say, oh no, but they don't realize how lucky they are to have you because I know your training and I know your background and I know the people that you work with and, and it's, it's sort of this best of the best of people that I admire in the industry.
[00:45:16] But you have such a unique perspective to offer your patients of having your doctorate, having the experience. But then on top of that, also being somebody who is out looking for stories to share, because you don't get anything out of this, you know, you, you, we, we, neither of us get anything out of this other thing, If there's somebody that can listen to this and have a better experience, then you and I win.
[00:45:43] That's the pay off here. That's, that's not a terribly common approach. And so I I'm, I'm very appreciative of you. You know, whether it's having me or anybody else on, because I agree the, I hope and think these stories can help. I
[00:46:01] Carrie: agree. And thank you for that too, but I feel the same about you that you've made such an impact too, and people are lucky to come in contact with you.
[00:46:10] One thing that I, before we kind of close up too, is that you have done a lot to raise awareness about the hearing loss and NF2 have to by competing and some very. Oh, what should I say? Challenging events, such as marathons and the iron man. Can you share a little bit about how you are raising awareness and other ways?
[00:46:35] Matt: Sure. So there was not, I mean, I'm guessing a lot of people listening to this have never heard of neurofibromatosis and it's actually not that rare at all. It just lacked some, some marketing support. I mean, for there's a lot of people that will phrase it differently, but I work in sales and marketing, so I kind of view it as a marketing thing.
[00:46:54] And I, I just thought if, if I sought out this information in 20 years ago, couldn't find it, there are other people must be as well. So what can I do? Well, we want medicine to treat this that doesn't exist so we can start raising money. Well what can you to do, to raise money. My, I credit my wife because when she and I were dating.
[00:47:16] I was in rehab. She was living with my parents coming to visit me and rehab each day. And so she decided to run a marathon and raise money for NF. Which is you pretty much have to marry the person who moves in with your parents and starts raising money and running a marathon for the disorder. They put you in the hospital.
[00:47:37] And so then the competitive side of me was like, well, if she ran one, then my goal, when I get out of this bed and moved from that wheelchair to walker, to cane a finish line, they literal and figurative finish line for me would be run a marathon with her. So we did that. We had a great experience.
[00:47:54] And so it just kept becoming, what more can we do? What more can we do? So I ran a couple of marathons and then I was just at a point in my life where. I needed some wins, you know, I just NF not just the hearing, but all the other physical aspects of with, I couldn't continue doing the job that I had effectively I couldn't travel and do everything I was doing because of the health-related things.
[00:48:19] And so I just needed a win and I thought, well, I can't do a lot of things that even toddlers can do. So what's something hard that I can do. And I decided, Hey, I'll have out an Ironman. And so I went to look at the day one that there's the 36 week training program for the iron man. I looked at week one and it took me 10 weeks.
[00:48:40] I had to do a 10 week training program to get in. Good enough shape to finish week one of the 36 week Ironman. And so I was able to finish that I did not win. I didn't, I didn't podium finish. But 15 hours and changed later finished an Ironman and then thought, okay, I needed that for we, we raised a lot of money.
[00:49:02] We raised some awareness, but more importantly, I just needed that win of saying, okay, yes, there are a bunch of things I can't do. And I can focus on all of that and get really down. But I just proved to myself that I can do this thing, that a lot of my friends who are out there winning at things can't do.
[00:49:23] And, and I needed that for myself. And that was really kind of a big moment for me. To get the courage and confidence to start getting more involved in hearing care, kind of led me eventually to Redux and where we're now drawing cochlear implants and an auditory brainstem implants and hearing aids for a thousand patients every day.
[00:49:47] Wow.
[00:49:48] Carrie: That is so motivating. And like you said, those wins are important and in all of our lives too, but it sounds like you and your wife have such an incredible relationship that it kind of captured the eyes and ears of Hollywood as well. Could you share just a little bit about that sneak peak?
[00:50:08] Matt: The do I, I would, I would, I would love to be on a fly on a wall and have my wife share her perspective, everything that I just shared and see, see how closely that was aligned.
[00:50:18] We what. That's certainly the last few years have been challenging for a lot of reasons for folks. One benefit it gave me if working from home is I've been doing a lot more writing for Redux and copywriting and article writing and sort of reignited my joy for being able to do that.
[00:50:36] So I started writing stories about my own experience, some of the challenges of being in a relationship with that hearing and then the joys of being in a relationship with that hearing, you know, and then started telling stories too, for my kids, if like how we met or writing about the Ironman and I put all of those together and a good lesson again in failure.
[00:50:59] I submitted those the 19th publisher that I submitted that to, to be clear 18. No thanks. No, thanks. No Thanks. Nothing. And I have my final draft due to McMellon and St. Martin's press agreed to publish my memoir which even sounds goofy to say out loud. So I'm six weeks away from having that due to them.
[00:51:22] So that's been pretty exciting. And then somewhere through all of that a story similar to what we're doing was published by NPR and through a comedy of errors that somehow ended up on the, in front of Channing Tatum who said, yeah, okay, this is a movie I need to make. So that doesn't mean the movie's going to happen because there's a lot of people involved.
[00:51:44] But right now I technically would be breaking a contract if you, and I decided to make a movie about my hearing loss experience, because Channing owns the right to that. All of that is just crazy because I'm still the guy who tried to fix a dishwasher and failed this morning. But it, it is, it's also very rewarding because it wasn't doesn't feel like that long ago.
[00:52:10] I was the guy who wouldn't let anybody take his picture and didn't want to leave the house because I wasn't comfortable with who I was. And I didn't want people to see me the way I was. So this is really kind of an evolution of accepting who I am and saying, okay, I have these limitations, but where can I still succeed?
[00:52:34] Where can I still make an impact? And then focusing on those things that I could do, I could still write, I can still try to make somebody laugh. And by focusing and really going all in on those things. All this sort of crazy book, movie stuff. Even the job I have now with Redux in working the calling on audiologists and failing to sell to Angela Alexander all of those things are just outcomes of me trying to help people that deal with NF or deal with hearing loss function a little bit better, or manage their lives a little bit better.
[00:53:10] So that's pretty rewarding. Wow.
[00:53:13] Carrie: Yeah, you are definitely a very empowering person and motivating person. And I'm so excited that I had the opportunity that I could work interview you today for this podcast too. Is there anything that you want to share with the audience before we close today that I didn't ask you about.
[00:53:35] Matt: The the only, and this was, I got sidetracked and thinking about something else, but a lesson, another lesson I wish I had learned sooner, and we don't need to go into a bunch of detail on this, but the importance of self advocacy. And, and I, maybe this comes with age, but for a long time, I looked at my doctors and thought they know best and they know a lot, but they don't necessarily know best.
[00:54:01] And they might, but it's okay to question that it's okay to question your audiologist. And if you have in medical professional, who doesn't like being questioned, maybe that's not the right fit. Even, even seeking out that kind of help, nobody was ever came. Nobody ever came to me and said, Hey, we have this training that can help you.
[00:54:20] It took me advocating for myself and going out and seeking that help. And I just wish I had known that sooner that it's okay to question your medical provider, I mean, in a, in a polite professional way or to ask why, and it's okay to interview five different audiologists and find out the one that you think best meets your needs.
[00:54:44] I wish I had known that I could self-advocate a little bit sooner. Because one, it will help make sure you're comfortable with the carrier getting, but I have found I'm more successful in the outcomes that I have if I feel some ownership in them. And it was just like, if you get your first car and you have to buy it, you're going to be a little bit more careful with it.
[00:55:05] Versus if your parents just give you their old Dodge minivan, Having that ownership of your care was, was very impactful for me. And as soon as that I realized, Hey, I'm, I'm the one, this is my body. And I'm, I can be involved in the decisions. That was very empowering for me. And I think that's another reason why I had seen better outcomes since then.
[00:55:29] So I guess I could, I want to unofficially give people permission to say, you know, you're in charge of you and if you, if you're going to just wait for like something to happen, it probably won't. So do your research and go out and ask those questions. And it's just I know from my, you know, my anecdotal experience of one, that's made a big impact.
[00:55:55] Yeah, that's very
[00:55:55] Carrie: good advice. But whether it's a, an adult or a parent or who is advocating for their child and either way asking questions and being curious and finding the right fit is, is really important too. Well, Matt, I just want to say thank you, but being at the empowerAudiology podcast I would definitely link up your social media to the show notes today.
[00:56:20] So people want to read more about your story or hear the NPR podcast, or I'm gonna find you different ways. They'll be able to find you. So again, Matt, thank you for being a part of this today.
[00:56:33] Matt: Well, thank you, Carrie.
This has been a production of the 3C Digital Media Network.

Episode 39: empowEAR Audiology - Gayla Guignard

[00:00:00] Announcer: Welcome to episode 39 of empowEAR Audiology with Dr. Carrie Spangler.
[00:00:16] Carrie: Welcome to the empowEAR Audiology podcast, which is part of the 3C Digital Media Network. My name is Dr. Carrie Spangler, and I am your host. I am a passionate audiologist with a lifelong journey of living with hearing challenges in this vibrant hearing world. This podcast is for professionals, parents, individuals, with your own challenges and those who want to be inspired.
[00:00:45] Thank you for listening, and I hope you will subscribe, invite others to listen and leave me a positive review. I also wanted to invite all of you to visit and engage in the conversation on the empowEAR Audiology Facebook group. Transcripts for each episode can be found at www dot three, the number three, C digital media network dot com under the empowEAR podcast tab.
[00:01:19] Now let's get started with today's episode. Welcome to the empowEAR Audiology podcast. My name is Dr. Carrie Spangler, and I am so excited today to introduce my guest Gayla Guignard. And she is the AG Bell Chief Strategy and Programs officer. She has a history. And I'm going to share a little bit about that as the founding director of Indiana Center for deaf and hard of hearing education.
[00:01:47] And she spent several years at the Indiana’s early hearing detection and intervention coordinator data also. So does AG Bell’s chief program officer from 2003- 2007. And she worked with children, families, undergraduate and graduate students at the university of Tennessee from 1991 to 2003. Gayla was a consultant with the national center and hearing assessment and management from 2007 to 2013. Gayla is an audiologist, a speech language pathologist, and a certified listening and spoken language professional.
[00:02:25] She received her bachelor's degree from Purdue university and two master's degrees from the university of Tennessee. So welcome Gayla to the empowEar Audiology podcast. Thank you for joining
[00:02:38] Gayla: us. Thank you, Carrie. And so great to be here with you.
[00:02:43] Carrie: Well, I'm excited to have this conversation today for all of our listeners about leadership and everything that you are so involved in, but before we go down that path, do you want to go back in history about when we met?
[00:02:59] Gayla: Oh, that sounds good. I remember exactly when we met. So. You and I met in 2012 at the ag bell convention that happened in Scottsdale, Arizona. And we met at the hotel. You were with our mutual colleague and friend Cheryl Johnson. And it was so fun. And she said, the two of you want to know each other.
[00:03:23] So we met, but I had known about you because of the great work you were doing in Ohio. Probably, I mean, several years before that. So it was really great to finally get to meet you and over time to get to know you a bit better and a bit better, and just delighted to have this time to spend with you today.
[00:03:42] So thanks
[00:03:43] Carrie: for you to be here today. I always like to ask my guests too who are in the fields. How did you get here? How did you get into speech pathology and audiology?
[00:03:58] Gayla: You know, that's a story that I sometimes think changes because the older I get, the more, when I look back, I realize the different influences on my own life, in, in my decisions and sort of my, my paths.
[00:04:12] And I've had several, but. I when I went to Purdue, I initially went and thought I wanted to be a social worker and, and sort of realized that I wanted to do something that where the training felt more specific. And one thing led to another, and I ended up choosing speech language pathology, and then really got bitten by audiology during my senior year at Purdue and said, I want to do this.
[00:04:43] And so I became an audiologist after I received my first master's degree in audiology at the University of Tennessee. I ended up deciding when I was there that I thought eventually I would want to specialize in teaching children who are deaf or hard of hearing to listen and talk. So I thought that was amazing as well.
[00:05:04] It felt like a really good fit for me. And then I ended up getting a second master's in speech language pathology, because I thought that will help me be better at my job and will help me understand some of the questions that were in my mind. And so that was good, but really I got interested in speech and hearing issues because I had a little sister who stuttered.
[00:05:24] And it was so interesting because when my family got help for her, we were simply told because there are five children in your family and she's the youngest she's stuttering because she can't get a word in edgewise at your family table. And so everybody needs to stop and listen to her and give her an opportunity to have a conversational turn.
[00:05:48] And that's what we did that worked
[00:05:53] Oh, when I, when I saw this as an, as another option in terms of the career field, when I was leaving this, this thought that I was going to be a social worker to, to doing something else. I remember that. And how impactful, just that professional advice was on my family. And I, I really have never looked back.
[00:06:11] I've only been really grateful for the career that I chose.
[00:06:15] Carrie: Yeah, I'm always so interested in how people get involved and there's usually something in their past, like you said, their family that really steers them into our field.
[00:06:25] Gayla: well, and here's another funny story. So I grew up in the, in a small town of 9,000 in the middle of a corn field in Indiana called Greencastle.
[00:06:35] And in Greencastle, Indiana, I was part of a really loving close-knit community. Many of whom were my family members. My mother was one of 17 and I have 76 first cousins between both sides of the family. So I grew up with a lot of brothers and sisters and cousins in, we would put on little productions, like singing, or do a play.
[00:06:58] There wasn't a lot to do when you lived out in the middle of the cornfield. And so we had to be really creative. We talked and talked and talked. Then I, I definitely had the reputation of being the talker. So it also made a lot of sense that I would go into a field where I would help people become more effective at talking.
[00:07:19] So anyway,
[00:07:21] Carrie: oh, I love that. And then you landed. At AG bell as the chief strategy and programs officer, I know you had a lot of things that kind of led up to that place, but can you just share a little bit now about your role there?
[00:07:38] Gayla: Sure. Well, I I've actually been with AG bell twice. I do love that organization and know it really well, obviously, but I first went to AG bell back in 2003 and I, I took that opportunity at that time because I had worked at the university of Tennessee for many years, about 13 years and love the work of teaching children, the joy of teaching children to listen and talk and working.
[00:08:07] In partnership with their families to make that happen and working with graduate students, teaching them how to teach children to listen and talk. I loved it, but I wanted to see if I could impact for good. More children, whose whose families wanted them to listen and talk and more families. And I felt that if I took a position at AG Bell, I would be able to do that.
[00:08:28] And so that's really how I came to AG Bell. The first time I would have stayed, but I had a young daughter with some special needs at that time and we just really needed to be closer to family. And so we moved back to my home state and of Indiana. And then eventually just made our way back to Tennessee.
[00:08:50] And we sorta had this Indiana, Tennessee, DC sort of triangle thing going on, but I love all three and the things that happen in each one. But essentially I came back to AG Bell when there was an opportunity in 2015, because it really is a professional home for me and, and really has my heart in terms of the mission.
[00:09:14] And the impact that AG Bell has on families lives. So. I I've had a lot of experience with systems change and I've had a lot of experience with difficult and hard conversations at a fairly high level in terms of trying to make change happen when people didn't necessarily all want to see the change happen.
[00:09:36] And. And so I think that that has uniquely qualified me for that position, especially the chief strategy officer piece at AG Bell. So, and I didn't mention, you know, you know, I've been with AG Bell back at AG Bell since 2015 and in my. Role part of what I do is work with people all over the world.
[00:09:56] And that has really, really been just enjoyable and fun and a joy for me to see other professionals develop as leaders to make change happen, where they are. That is like one of the most exciting things for me is as much as I love working with children in families, parents I also really, really love working with professionals and helping them to be the leader where they are or showing them have, or giving them advice on how to do that.
[00:10:27] Because that one professional can make the difference in hundreds of lives, you know, over the course of their career
[00:10:36] Carrie: as I see you just knowing you over the last 10 years, I do see you as like a servant leader. And now that you tell your backstory of wanting to go into social work, having 76 cousins who you were around all the time your own daughter, your own sister who had different needs along the way, and then going in and getting your master's in speech and audiology, I have.
[00:11:01] Set you up, I think to be a servant leader with AG Bell, can you, you shared a little bit about your leadership style unbelief, but what else can you share that you think is helpful for others to improve upon their skills and lead in a specific way?
[00:11:20] Gayla: So I I take it as a compliment that you call me as servant leader.
[00:11:24] I would, I would really not want to be any other kind of leader. I thought about this a lot as I was developing my own leadership skills, but also being developed as a leader because it wasn't all up to me. I, I will say first, I believe that there is a leader within everyone. We lead in our own lives, hopefully.
[00:11:45] And I, I can understand when I was doing an internship in Colorado many years ago when I was young in my early twenties. And I, I saw I worked with a younger girl. She was 17, who was kind of constantly being told what to do. And even to the point of being told who she was, and I said to her, Listen, you can't let other people tell you who you are.
[00:12:11] Yes. Your boss sometimes tells you what to do, but nobody can tell you who you are. You get to choose to be who you are. And if you don't want to live your life. Somebody else will live it for you. They'll actually sort of take it over because maybe they liked controlling people. Is that how you want it to be for you?
[00:12:31] And she said, that's not how I want it to be. So I said, you know, then stand up and, you know be counted, you know, as the person who gets to be that driver in your own life. So I do believe there is a leader within, and that most of us don't know it. And that most of us either don't have any one tell us that, or we don't know.
[00:12:55] We don't see a path to, to growing into our leadership and to honing that leadership and to actually leading other people, you know, we don't know how to do that. And so I think that's, to me, I come from a perspective of plenty. I always think there's plenty. I feel like there's plenty of love. I feel like there are plenty of children who were deaf or hard of hearing to go around.
[00:13:23] Plenty of parents. I feel like there is plenty of room for other people to shine. I don't have to be the shining leader all the time. But I, I don't always, I do think that there is probably a dearth of knowledge, so people don't always know how to navigate as a leader to make change happen that they so desperately want to see.
[00:13:47] And so if it's one thing I say to someone or our ongoing conversations, I have I'm delighted to do that because the world needs more leaders because we always need to be changing and growing.
[00:14:01] Carrie: Yeah, I liked what you said about that there’s the leader within all of us. And I think that self-leadership is so important too.
[00:14:11] And just kind of what you said, you know, do you want somebody else to be controlling you or do you want to be controlling yourself and how do we lead within ourselves too? There's plenty. And your point about anybody can be a leader. But I think some people wait to have a title and that doesn't need to be the place for you.
[00:14:34] Like you said, you can lead wherever you're at. And how do you navigate through some of that? I think, This is just my impression to you. I think you're a great storyteller and that you have a lot to share with others. And do you feel like storytelling is a critical piece of being an effective leader, especially being an effective leader for a nonprofit organization, such as AG Bell.
[00:15:06] Gayla: I I do. I think that I love it. Even the there's a, there's a storytelling festival. The national storytelling festival happens here in Tennessee where I live every year. It's happened for years and I still haven't been to it. It's in Jonesborough, Tennessee, but I say to myself, I got to go to that storytelling festival because I, I love storytelling.
[00:15:25] I like telling stories and I like hearing the stories and I think that's true. Of most people. Then when we tell someone who asks us how our day went, I mean, we kind of retell the story of the day, right? And some people can deal with all the details and other people can't and some people say, get to the point, but the reality is that's kind of how we as humans live our lives.
[00:15:51] And sometimes we rewrite the story. Sometimes we need to do that. And it's just a wonderful that we can. 'cause sometimes that's what helps us go on when things happen. But in terms of just storytelling and how you use that in leadership, again, it goes back to people not necessarily feeling empowered.
[00:16:11] To, to have the life they want or to make the changes they want in their career, or to have the changes happen that they want for their child and family. And so I will often, you know, say I remember when I was such and such, so I, I and, and this is kind of how I handle that. And I don't, I try not to give advice to people and say, just do this.
[00:16:37] Or this is what you ought to do, but instead just share that story that had an impact on me. And, and then if I feel like sort of that light's not going off in somebody's eyes, I'll say so. So, you know, what I did with that was this but I think it's really impactful just just yesterday and this isn't in my professional career, but yesterday I was the, the parent representative during some interviews that are happening at the University of Tennessee for a program called The Future program and my daughter's enrolled in the future program.
[00:17:10] And so I was asked to come to. Be with and speak with parents whose children are going through the interviewing process and to be able to answer questions and just sort of tell our story. And I just, I just did, I talked about who I am, who my daughter is. The kinds of things that they could expect from the program.
[00:17:34] I talked about how hard it was when I first put my daughter in her apartment at the age of 26. How hard that wasn't for three weeks, I didn't sleep well because the phone might ring at 12 o'clock or I was wondering if she was okay and really trying to show them that it's okay to be afraid. It's okay.
[00:17:53] To be nervous. And it's really good to go down roads. You've never been down because what might you find on that road that you didn't know existed? And that's certainly what's happened with my daughter and living away from home. Sometimes we as human beings just can't see beyond our own everyday lives.
[00:18:11] We're so busy. Sometimes we're really stressed, but our lives tend to be very small if we let them be small. And, and that's another thing people. Can stay in one place, but because of the internet we have very big lives. You know, we don't travel at all, but we know people from all over the world and that is really, really cool.
[00:18:33] So anyway, the power of a good story changes lives. That's what I believe.
[00:18:39] Carrie: I think as a leader, do you feel that it makes you also vulnerable and real as a person? And do you think that is helpful for others to see that.
[00:18:53] Gayla: I think that there is like a double, there's two sides to leadership. There's one where people sometimes just want you to
[00:19:03] be the leader and lead, and they want to think that you have something they don't have, because that makes them feel sick. That makes them feel more comfortable. And I remember when I left my position in Indiana and was, was coming back to AG Bell, one of the things I said as I was leaving is okay, you all are now in charge of this.
[00:19:22] It's it's, it's your time to shine. You're all leaders, you can do this, you can make it happen. And it was sort of like you know, and it, but it's, it's so true. Right. But that also, when you say to any individual person. Maybe it's time for you to lead. You're also kind of asking the person to step up to a line to do that.
[00:19:42] And you don't not, everybody wants to do that and I think that's, I think that's okay. I mean, we're all individuals, we have different gifts. But I don't think it's okay to not be the leader in your own life. I think that's really important. Because I think we have gifts and talents that we do bring to this world that are really unique and come from the really unique person, the special person that each one of us is.
[00:20:09] And so. You know, if we don't lead ourselves, then those things might not show up. And when those things show up, they impact other people's lives positively too. So, yeah,
[00:20:22] Carrie: I think on the flip side of it, as you mentioned earlier, there's also challenges to being a leader. And what are some of those challenges that you've had along the way and how have you handled that?
[00:20:37] Gayla: It can sometimes be lonely at the top. You know, there's, there's really no other way to put it. And I think there are so many decisions that leaders need to make in that can be very, very challenging because you don't always have all the information you need as the leader. You might want it, but sometimes if you're trying to get all the information, you're really just micromanaging your staff.
[00:21:01] You're you're micromanaging your team. And that's not the way to live either. It's not a great way for them to live. So sometimes, you know, as that leader, you're in that tough position where you have to make decisions on partial information and you have to be brave enough to take the risk, to do that and brave enough to, to be wrong sometimes and to live with.
[00:21:22] Sort of the consequences and the backlash of being wrong. I think that's tough. At some times, and other times it's not tough because the reality is that my mother said, you know, we were made for days like the. And so would, she said that she meant, she means my mother had a lot of leadership in her family.
[00:21:42] She had, there was a lot, there are a lot of leaders, my mother's family, where they have the 17 kids. And it was so funny when she was on her sort of just in her final days of her life, that she had contracted cancer, big surprise to all of us, that she was very coherent and only lived 10 weeks past the diagnosis.
[00:22:01] And she was one of those people you just sort of thought could never be chopped down. Very strong throughout her life. The matriarch of our family love it, very strong, very strong personality. And we were kind of afraid of her because we were smart kids. When we were in tween and our teen years, we were smart to be afraid of her.
[00:22:19] She was a little vicious, but anyway, but my mother said a lot of funny things when she was Final days and weeks. And one of the things she said is you've never been the kind of woman who was willing to sit in the back of the bus, me neither we're just not those kinds of women.
[00:22:41] 'cause. I said what I was in elementary school. I love to ride in the back of the bus and bounce up and down. So, you know, I think her language was a little confused at that point, but her point is that you, you know, you, it's important to. To, to, to recognize that sometimes you have to do the one, you have to be the one that will do those hard things that nobody else wants to do, because it's so important to make the change happen.
[00:23:08] But it is, it is sometimes very challenging when there are competing. Like this is a good decision, but this, this option could be another good decision and this option could result in another good decision. But which one is the best? Those are the kinds of challenges. Sometimes leaders have. Yeah, I think, I think that's it.
[00:23:31] I mean, it's really, I think it's fun to lead efforts, you know, it's fun to create and it's certainly, I think it's really fun to encourage other people because the reality, we all worry about a lot of things that don't come to pass. But, but at the same time, I kind of am a worrier naturally because it's how I process things.
[00:23:53] Like, let me kind of worry on this. You don't think about it. Think about it. Think about, oh, I figured it out. Right. I kind of do that when I'm processing things and trying to figure things out. But at the same time you know, it's, it's most, most of the time we worry about things that will never come to pass.
[00:24:12] And so if we can spend our time. In a different way in instead, make things happen that make the things we want to see, come to pass occur better way to use time and are really relatively short time.
[00:24:30] Carrie: Great. Great advice. And going along with the challenges, what about conflict and how do you handle that in an organization?
[00:24:40] Because I'm sure there's a lot of different opinions and ways that people are thinking and conflict that arises. So how, how do you handle that?
[00:24:52] Gayla: Conflict is so interesting, especially I think for women because so many of us, and I was one of those who was socialized to kind of not deal with conflict to sort of just, you don't talk about it. You know, you sort of. uninvite yourself to that table. You sort of say, I'm going to vote with my feet in walk away.
[00:25:12] You know, that's how many of us, and same for men, it's not just a woman thing, but I definitely was socialized like. There are some things you have to confront, like you have to confront a bully, but otherwise, you know, you just walk away. Because just because that's kind of a hot thing right now and maybe let those embers, you know, let it cool if that fire cool.
[00:25:35] Let it be, get down to that ember stage. But. The reality is that there are just some issues that are going to create conflict and you have to be willing to have the conversations. And it's plural, usually when it's a big conflict to, to understand. The various perspectives and to really come up with a good solution.
[00:25:58] So I think having conflict at that this stage of my career doesn't really bother me very much. Right. Sometimes though I have to push myself to use the time and energy to get some things resolved, because sometimes you can recognize that that some people actually like conflict. And they don't want to resolve the conflict, you know?
[00:26:24] And so sometimes it's, it's not, it's not really going to be worth the time and effort. I hate to say that, but, but other times it really is a matter of, of having conversation, understanding of the person's perspective. And, and being real with each other and then trying to come up with a solution. And sometimes we also find, we just have to agree to disagree.
[00:26:45] But now at this point I really do try to deal with conflict quickly and as, as honestly, but as lovingly as possible,
[00:26:58] Carrie: that's a good way to handle it when you can right?
[00:27:02] Gayla: right.
[00:27:05] Carrie: Several people in your life along the way that you feel have influenced who you are today and what are their characteristics that you bring that bring to you?
[00:27:17] I guess.
[00:27:20] Gayla: I, yes. I mean, I have to tell you I mean, there are many people, first of all, my parents were both leaders, definitely in their work and in their family. And so I saw that strong leadership from a very early age. My grandmother. On my, my mother's mother, the one with the 17 kids and all those grandchildren she was also a leader and it was just in the way she held herself and how she moved.
[00:27:49] And communicated with people, you know, through our community, but also she was a trustee in you know, in a, in one of the local townships and was always willing to use her voice if she thought it could make a difference, but also. In terms of of what she would say and what she wouldn't say.
[00:28:09] And I remember observing that from a very young age. Really had a lot of mutual respect. People respected her and she respected them. I think that was really important. She, she said, and then my mother and turned, told this to her five kids you know, the rest of her life. And it was always, you know, remember.
[00:28:30] You know, no one else is any better than you are, but also remember you are not better than anyone. And I, that really helped me understand the need to live in community and the impact that we have on each other, how important it is to consider other people, because we have five kids, you know, if I got a pack of gum, I cannot have a stick of gum in front of the other kids unless I offered them a stick.
[00:28:56] So if I really wanted to have my gum, as soon as I bought it and got into the car and the other kids were there, I had to share. So that was probably really good. You know, I said taught me about leadership, but many people along the way. My youth group leader Diane Flint, we had several bits. She in particular, Diane, I was in youth group you know, as a middle schooler or a junior high kid, and also in high school to this day, she said, still sends me birthday cards and still and sends my husband and I an anniversary card.
[00:29:29] From my home state of Indiana and I just want a ministry and what a legacy and what a loving, committed, steadfast woman. And so that she's a leader. And so that would be an example of someone, but there've been many leaders that I had through the years. And they've all impacted me one way or the other.
[00:29:46] Those are just my early years.
[00:29:48] Carrie: Yeah, well, that was a very formative years too. So all of those people who are listening that work with young kids and middle school kids, how impactful that can be later on in life when you are your own leader and leading other people. Yeah,
[00:30:04] Gayla: absolutely.
[00:30:06] Carrie: Do you have any advice for our listeners to take steps right now to grow as a leader within themselves?
[00:30:14] Gayla: Well, some people may think this is a little hokey, but I mean, do you pay attention to leadership quotes because they are tidbits of food for thought. And think about those and see if those are something you want to put up and apply. And remember I did read books on leadership and I also read books, read books by leaders.
[00:30:35] I mean, my entire adult life, I've done that. I also think that you know, in my early years, probably my twenties, you know, I was one of those people I did read books that were about sort of, and there were a lot of books at that point kind of like about yourself, discovering your true self, you know, knowing yourself better.
[00:30:55] So I found that really, really informative. It was, I was curious about it, you know, it's so odd That a person would feel like they don't know themselves well, or they could know themselves better because we live with ourselves every day. But the truth is we are even as high schoolers and college students really busy and we might not know how we feel about certain things or, or we may not have had the exposure to things that we needed.
[00:31:20] I know that well, before I came to AG Bell, I, I thought to myself that, how did that person. Actually become a leader in our field of listening and spoken language and in an audiology and speech language pathology. And when I came to AG Bell, the first time, I was more clear about that path to becoming a leader.
[00:31:42] So again, I, it really. Is something that I try to be very intentional about when I see that people want to lead they're in a position where they're going to be forced to lead, to encourage them, that they can do that. And if I see that path for them, I tell them about it and pointed out to them. Get over here, maybe a little bit more of this, a little less of this, but reading books helps knowing yourself.
[00:32:06] Well, I think helps. Again, being the leader within being willing to manage yourself. That sounds a little silly, but it's true. You know, about what you will, and won't say how you will, and won't be what your bottom lines are about what you will and won't do.
[00:32:27] You know staying true to your ethics, knowing those, you know, those, those are all those things. You just about being a, what we kind of consider a good human being is a really good place to start. I think the opposite in terms of you could be a leader. I'm not sure if anyone buddy we'll follow you. If you're this kind of leader, but you can also be the kind of leader who's in charge of something or an organization, and you, you know scare people into following you or you manipulate people into following you because you kind of have a pied Piper type of personality.
[00:33:04] I think it's really important to respect individuals. And I think for who they are. And I think that's one thing I've always really tried to do. I've tried to really show and give people the respect that they are due. And also I think in turn, what has happened is maybe through the years, people have maybe felt that coming from me and felt that, that I was trustworthy.
[00:33:31] And you know, when, when you're considered trustworthy, People were, are more willing to work with you and then you can do really great things together.
[00:33:40] Carrie: Yeah, no, I agree. And thinking of great things as what is your vision as the chief strategy and programs officer for AG Belll? Do you have like a. The strategic objective or leadership objective that you want to see happen under yours?
[00:33:59] Gayla: yours?
[00:33:59] So our CEO, Emilio Alonso-Mendoza is he's his he's very. His big, big ideas, big thoughts in very open-minded. And I really appreciate that about him because he's not one of these people who says, well, why he's like, why not? And that is similar to my perspective in life and especially around listening and spoken language.
[00:34:26] And we, you know, we have been around since 1898 Ag Bell's been around since 1890, Dr. Alexander Graham bell, the same gentleman who invented the telephone as a scientist. Also started our organization and on his grave marker. It says, you know, Alexander Graham bell teacher of the deaf was really the incredible event or that he was, and the Renaissance man that he was and the people he knew in the crowd but what really weren’t crowds, the circles that, you know, he, he lived and worked in were pretty incredible, but his most, most valued professional role was.
[00:35:04] Of teacher of the deaf and he understood his impact. So I think for me, in what I want to see happen for AG Bell is similar to our CEO, wants to have see happen. What are our board and really several of our other leaders who are committee leaders want to see happen. And that is that the opportunity.
[00:35:27] To learn to listen and talk is available all the way across the world. That if this is what families want to see happen for their children, that services can be made available. Qualified professionals can be accessed, hearing technology, a good family support system in place, you know and that the services can be.
[00:35:51] Developed in the systems can be created to support that child to, into becoming a really happy well adjusted so therefore successful adults, and we spend most of our lives as adults. It may not be the most fun, but it can be. So we have a big job. Those of us who work with children. And families have a really big job and it's honored to do it.
[00:36:18] And that is because we impact our words, impact our behaviors, our attitudes, the messages we send really impact those with whom we work. And we know what we're trying to do is raise or grow this little person into a big person who is well adjusted and is happy. Has really, you know, found that leader within, or is on their way to doing that and making really great things happen, you know, for themselves and for others.
[00:36:47] 'cause that's what it's about. It's all about relationships and experiences in this world. Those are the things that we're going to remember at the end of our lives.
[00:36:56] Carrie: Wow. Well, I am so grateful that you have found your amazing servant leadership skills and that you have found your passion from a young age of like thinking about social work and speech pathology and audiology and all of the experiences that you brought along the way to where you're at now, and to be able to impact families and children and professionals and adults who are deaf and hard of hearing in a more global sense.
[00:37:28] Gayla: Yeah, I I'm really honored to do this work. I'm honored to have this conversation with you today. I mean, you know, you're part of the future, the present and the future, because you're a bit younger than I, and so, you know, you're doing the same thing. I mean, you're, you recognize your impact and the potential of the work that you do and how you can impact more and more kids.
[00:37:53] And I just want you to know how appreciated you are. For the role that you have in this, this work too. And in this life, I'm glad to be on the globe at the same time with you.
[00:38:05] Carrie: Right back at you too, I appreciate, I love having other people who to look up to have amazing leadership skills and you know, drop seeds along the way.
[00:38:19] Is there anything I didn't ask you that you wished I would have?
[00:38:28] Gayla: Well, one more thing, probably one more thing. Love what you do. So that would be advice that I would give that's another way to be a leader is love what you do. And if you don't love what you do, do something else, it doesn't mean you have to leave your field. But maybe you need to do something else in the field.
[00:38:45] It doesn't even necessarily mean you need to leave your job. You just need to find the things about your job that you love. But we just, we, we I've said this earlier in the call, we are here for a while and there is a beginning and a middle and an end to what we do, and we all want to look back and feel that.
[00:39:08] we we fulfilled, you know, at least one of our purposes in life through our career. So I would encourage you to, to love what you do. So if there are any students listening out there, you know, and there's a passion that you're feeling from this work, I wanna encourage you to do it. The other thing I want to say goes with this love what you do, but understand in every job.
[00:39:31] whether you're a mom, a dad, cause that's a job too. Whether you are speech language pathologists, audiologists, social worker, educator of children who are deaf or hard of hearing, I think will be most of the people listening to the podcast in every job, there are parts of the job. You're just not going to like, don't spend don't waste time saying I'm not good at such and such, or I don't want to do such and such or
[00:39:59] I kind of feel like I'm not being responsible because I haven't done such and such instead name it. This is something I really don't like to do. So I probably need to do it at a time when I can give it my full attention, or I can do this part, but this is how life is it's. You know, you do have to take some of the things you don't like to do with all the other things that make life good.
[00:40:23] Carrie: That's really good advice because I think you're right. Everybody has something in the job that they dislike. And, but then you have to think about all of the other wonderful things that you can put your energy to, to make a difference with what you do love.
[00:40:37] Gayla: Yeah. Well, and we all have to do adulting. So I think sometimes that's the other thing is as, as you, as you grow and learn, you recognize how important.
[00:40:48] It is for you to be willing to be the adult and to do the adult things. Because by being the adult, you're kind of saving that space for people who are younger than you to learn and grow, especially children to learn and grow and become who they are. So, you know, you're strong enough and able enough to be the adults.
[00:41:07] So I think it's not always fun. So, and it's a good way to live in community with other.
[00:41:16] Carrie: Well, I think you have empowered all of our listeners to be better leaders, wherever they might be in their leadership journey, whether it's at a small step or a big step, I think this is an incredible conversation. If people want to get a hold of you and reach out to you, where should they go?
[00:41:35] Gayla: No, they can reach out to me. I'm going to give you both email addresses my work email at AG Bell G G U I G N as in Nancy, A R D as in dog. So gguignard@agbell.org. And then my personal email is ghguignard@gmail.com. Glad to hear
[00:41:59] Carrie: from. Well, thank you, Gayla, for being a guest today on the empowEAR Audiology podcast.
[00:42:06] I really appreciate it. And I am sure that all of our listeners are going to really appreciate this conversation as well.
[00:42:14] Gayla: Thank you so much, Carrie. Thank you.
Announcer: This has been a production of the 3C Digital Media Network.

Episode 38: empowEAR Audiology - Drs. Jessica Sullivan and Lauren Calandruccio 

[00:00:00] Announcer: Welcome to episode 38 of empowEAR Audiology with Dr. Carrie Spangler.
[00:00:16] Carrie: Welcome to the empowEAR Audiology podcast, which is part of the 3C Digital Media Network. My name is Dr. Carrie Spangler, and I am your host. I am a passionate audiologist with a lifelong journey of living with hearing challenges and this vibrant hearing world. This podcast is for professionals, parents, individuals, with your own challenges and those who want to be inspired.
[00:00:45] Thank you for listening. And I hope you will subscribe, invite others, some lesson and leave me a positive review. I also wanted to invite all of you to visit and engage in the conversation on the empowEAR Audiology Facebook group. Transcripts for each episode can be found at www.3, the number 3, C digital media network dot com under the empowEAR podcast tab.
[00:01:18] Now let's get started with today's episode. Podcast listeners. I hope you will enjoy this episode. As much as I did. This was such an engaging conversation with two incredible audiologists who are making a positive difference through a mentoring program called IMPACT, which stands for innovative mentoring and professional advancement Through cultural training, these two audiologists from two different universities and two different parts of the country have connected with a common interest in advocating for diversity in a profession where diversity is lacking. Let me share a little about these two amazing audiologists.
[00:02:08] Lauren Calandruccio is the Louis D. Beaumont University Professor II and an Associate Professor in the Department of Psychological Sciences at Case Western Reserve University. She is the recipient of the Case Western Reserve University Carl F. Wittke Teaching Award for Excellence in Undergraduate Education and the J. Bruce Jackson Award for Excellence in Undergraduate Education. She also received the ASHA Fellow for her outstanding work in the areas of teaching, research/publications, and service to ASHA. Her research area is focused on speech perception, with an emphasis on understanding how linguistic experience contributes to performance.
[00:03:07] I also have Dr. Jessica Sullivan joining today. She is the interim department Chair and assistant professor in the Communicative Sciences and Disorders department at Hampton University. Dr. Sullivan is an affiliated research scientist at Haskins Laboratories at Yale University. She is co-director of the IMPACT program, a collaborative mentoring program between Case Western Reserve and Hampton University. Dr. Sullivan has served on numerous committees and boards with the American Speech Language and Hearing Association. Recently, she was elected to the Board of Director for the American Auditory Society. She received her Bachelors of Arts in 1996 from Louisiana State University and Masters in Deaf Education from Lamar University in 2000. She received her PhD in Communication Sciences at the University of Texas in Dallas in 2010. Dr. Sullivan has received numerous awards, honors, and grants.
In this podcast you will hear Lauren and Jessica share personal experiences of their students and how IMPACT has positively influenced at Case Western and Hampton University.
[00:04:29] We discuss some statistics which are eye opening, and I encourage you to visit the ASHA 2020 demographic and employment data that is linked in the show notes for a closer look at how particularly non diverse, the fields of speech pathology and audiolog really are. View the show notes for additional links for IMPACT.
[00:04:54] I hope this episode sparks you to think about promoting diversity in your current roles. Join me for the empowEAR Audiology podcast.
All right. I am so excited to welcome Dr. Jessica Sullivan and Dr. Lauren Calandruccio to the empowEAR Audiology podcast. Welcome both of you.
[00:05:17] Jessica: Thank you for having us.
[00:05:19] Lauren: Thank you so much for having us.
[00:05:20] I love your podcast.
[00:05:22] Carrie: Well, thank you. I appreciate you guys both being here today, and I'm really excited about today's episode, but before we kind of get into the meat of the episode, I always like to ask my audiology friends, how they ventured into the field of audiology would either of you want to start with just, how did you get here,
[00:05:48] Jessica? You want to start?
[00:05:52] Jessica: I was actually the kid and undergrad that couldn't decide between speech and audiology. And, um, it was a roundabout way, but at the same time, while I was taking my PharmD classes, my sorority used to volunteer at the Louisiana school for the deaf. So that being introduced to deaf culture kind of was my foray into getting like, okay, making my decision of what I wanted to do and how I wanted to spend the rest of my life.
[00:06:25] Carrie: Okay, well, that's cool. What about you, Lauren? Anything that headed you that way
[00:06:31] Jessica: that way?
[00:06:33] Lauren: Um, I was an undergrad at Indiana university and I always liked health and science. Um, but I definitely did not go into this path intentionally. And I was probably a junior and had to declare a major. Um, and I had about four choices and speech and hearing was one.
[00:06:56] And my mother who worked in a school district and always heard about what a great job outlook it was for speech pathologists encouraged me to pursue speech pathology. And it was not the right fit for me. As soon as I started taking these classes, I realized that, and I always say, um, it was my undergraduate professor, Dr.
[00:07:16] Nick, Nick Hipson, who first showed me the cone of
[00:07:20] Jessica: light.
[00:07:25] Lauren: Um, and it was that audiology class that I was lik this, I would like this. Um, but honestly I was really unsure for a very long time. And now I feel like everything just worked out wonderfully because I love wherever I am at
[00:07:41] Carrie: Well, good. I always like to hear everybody's backstory. I've had they get into the field because most people you talk to them again, what are you?
[00:07:50] And I'm like, I'm an audiologist. And people are like, well, what's that? So to get into the field, I like to hear the backstory, but on today's episode, we are going to focus on the innovative and Collaborative program that you guys have developed called IMPACT, which stands for innovative mentoring and professional advancement through cultural training.
[00:08:12] And before we go deep into that program, I'd like to step back and maybe have you guys give a little bit of background about the program and, you know, from more of a 360 degree angle of how a lot of universities are, have a goal or a mission to promote equity and diversity and inclusion, but you also saw this need at your respective universities as it relates to undergraduate programs and graduate programs in speech and hearing.
[00:08:45] So why did you see that?
[00:08:51] Lauren: You want me to go? You can start. Okay.
[00:08:54] Jessica: Um, so it started with Lauren, I think called me. Did you call me? We kept or, yeah, she called me because she had an issue with a student, um, who had been her student in undergrad and went to grad school. So then we started, um, Our session on what the problem is in our profession for these students of color, who are really good students that are talented students.
[00:09:26] And if they land in the wrong seat, they can be beaten down or a students that don't get the chance. So this is pre George Floyd, pre pandemic. We're having these discussions and I think it was ASHA 2019. We actually started pen to paper, kind of staffing out this program of what it would look like for us.
[00:09:52] And we wrote the grant, submitted the grant in March of 2020, when we were
[00:10:00] Lauren: told to shut down
[00:10:02] Jessica: right before the shutdown was submitted, the grant and we were told life will be back to normal in two weeks. And it wasn't, and it's not. And we found that in August that we were funded, but by that point, we're knee deep into COVID.
[00:10:19] So we had to pivot. So you want to jump in Lauren? Yeah.
[00:10:23] Lauren: So, um, we, we first started talking about this because I reached out to Jessica because she's a black audiologist and a good friend of mine. Um, and I wanted to get her opinion and perspective on how the best way. I could mentor this student because some of what she was experiencing, I haven't experienced.
[00:10:46] Um, and so I could help her with certain things, but not with everything. And so I asked, just get to help me out and to give me advice. Um, and that kind of was what really precipitated a lot of conversations and, um, When we started having these conversations, Jessica and I both had just recently taken new appointments.
[00:11:07] Um, we like to say that we're twins. We have lots of similarities in our lives. And one of them is that we've worked at three different institutions. And so Jessica had just gotten to Hampton university. I had just gotten to Case Western reserve university, um, case Western reserve university is in the city of Cleveland
[00:11:26] It's right downtown. Um, and it's, it is in a black neighborhood. Um, and we are in a county that is 58% black. Um, and we are lucky to recruit diverse students here. But if we're going to recruit diverse students, I always say, we need to know how to mentor diverse students. Jessica works at Hampton university, which is a historically black college.
[00:11:50] Right. So many of her undergraduate students are black. Um, and so almost all 98% number
[00:11:58] Jessica: it's I think with Hampton also it's um, We have a lot of, um, well cared for students. So some of the social issues that some of the students that may have a Case may not be the same issues that our students have. Some of our students specifically come to Hampton because they've grown up in, um, predominantly white communities and they want that.
[00:12:29] Cultural experience and the nurturing part of it. And they're really high qualified students, but they still would have trouble getting into graduate programs.
[00:12:40] Lauren: And so we're trying to play off of, we had a situation here at Case that I'm very lucky that we have a lot of diverse students in the undergraduate body, but some of our minority students don't always feel included, um, at Case in general, Um, and Jessica was having an issue that she had really strong students, but they were still having difficulty getting into graduate school.
[00:13:05] So that was where the whole idea for IMPACT came together, that we could work together collaboratively and plan our strengths. Um, I always like to remind people. We have great options and opportunities at Case Western we're a really wonderful school, but we had no faculty of color. In fact, all of the communication sciences faculty are white females.
[00:13:29] Um, and so my students get to interact with the Hampton students and then the Hampton students also get to interact with our students and our faculty. And so we're really pulling on all of our best resources and joining together as a team.
[00:13:46] Carrie: So let's just take a step back. And I think this was an ASHA, just some data about our fields.
[00:13:53] right audiology and speech pathology. And I think it was about 18% of audiology students identify as nonwhite, according to a 2020 survey and about 8% of speech language pathology. Um, identify as nonwhite, according to 2019 data, um, which was part of an ASHA American speech language hearing association, uh, survey.
[00:14:18] Why do you think that is? As far as I, you know, these current statistics and our field being that low?
[00:14:31] Jessica: Well, I think you see a flip. And even some of the HBCUs, you're going to see the same flip, where you can see a pretty diverse undergrad population, and then it flips to the graduate school. So a lot of graduate programs are homogeneous, they all look the same.
[00:14:52] Um, and I've been in situations where I've worked at predominantly white institutions. And if they say, oh, well, we need to think about diversity. They are going to go. And they're just going to cherry pick one kid who doesn't stack up and look like the other kids admit them, then they're this, they're the problem child.
[00:15:14] They're those person that is always the student of concern. And then next thing you know, they don't finish. So it's a lack of mentoring and a lack of focus on mentoring, I think at the graduate level. Would you agree that. Part of the problem, Lauren?
[00:15:37] Lauren: I think there's a, I think there are so many problems, right?
[00:15:42] It's part of the problem, but, um, just to go back to the numbers Carrie, right? Like 96% of ASHA's constituents are female and 92% of them are white. And so I always like to tell people, you know, the number of times I hear someone tell me I got interested in speech pathology. Um, neither Hampton nor Case Western has an AUD program, I should say.
[00:16:09] So we have, we have a PhD program, a clinical master's degree for speech path and then an undergraduate program. Um, They, you know, so many of the students say I got interested because my mom's an SLP. My aunt's an SLP. Well, if 96% of them are white, right. They're telling their children, their nieces who are also white.
[00:16:34] Right. And so. Since certain groups of color in this country have less access to some of our services. They don't have knowledge of the profession for those reasons either. So some of it is just coming in. You get these really how we recruit a very diverse undergraduate body at Case is we go look for the students who say things like we're very interested in language.
[00:16:57] We're very interested in science. We're very interested in acoustics. And we say, have you ever heard about us? And they always say, no, we haven't. But once they hear about us, they're very interested in our field. Right. So, um, right at Hampton, the undergraduate body is diverse at Case we've worked really hard to make our undergraduate body diverse in our major.
[00:17:24] And I think that's effort can go into that space, but then those students need to be mentored so that they can. Be successful in graduate school. Yeah.
[00:17:36] Jessica: So one of the challenges I have at Hampton, um, even for our undergrad students, um, other, our colleagues who have hospital programs or school districts, We'll I've had a person who places students say, oh, well, certain places just won't take Hampton students.
[00:17:59] Not that they've had one, there's just a built-in bias. That same facility will offer a shadowing experiences to a predominantly white institution on the other side of the river. Um, but not our students. We, we didn't even know this was a thing or an opportunity. So half the time it's even though these are kids that could compete at the same level, I am constantly trying to find ways to help give them those experiences and access because they can get it great.
[00:18:34] But just because of the name is Hampton, because it's an HBCU, there are certain institutions that have a bias. Um, just based off of that. Should I tell them about Gabby
[00:18:52] Carrie: Sure Lauren,
[00:18:55] Jessica: Lauren, Lauren,
[00:18:56] Carrie: would this be a good question? One of my question for both of you, were there a certain student or experienced, like mentoring experience that you had that really kind of got you thinking about the IMPACT program?
[00:19:13] Jessica: It is
[00:19:15] Lauren: a culmination of experiences. I don't know if Jessica would want for
[00:19:20] Jessica: me So I see myself in all of our impacts students in a way, right.
[00:19:27] So I was the one who went to predominantly, I've never went to an HBCU. I, all of my education has come from predominantly white institutions and I'm always. The one person of color in my classes, you know, especially African Americans. So I think that's one of the differences. So even those things, if I didn't, and I think I was lucky, cause I didn't even realize how much mentorship and the right mentorship could make or break you.
[00:19:58] And I was lucky and had good breaks. I was lucky that the Calier center was a good place for me. To start my PhD and not just my immediate advisor, Linda Thibideau, but lots of faculty there. Have been supportive and are still supportive of not just me, but they're supportive of my students. So, um, I was a lucky one because if you went to any of the listening sessions last, was it summer of 2020?
[00:20:31]Its horrifying the things that people still go through. These are things that happened back in the sixties. And, you know, there was like Martin Luther, king marching and giving speeches and all that stuff was so far in the past. These things still happen today. And when you look at the numbers yet 18% of audiologists or don't identify as white, but of that 18%, I would say probably less than 3% are probably African-American.
[00:20:59] When we switched from the AuD from a master's to an AuD, you deem all of the, um, audiology programs at HBCUs closed. Couldn't afford to keep those very expensive programs going. So that started to disenfranchise. And like I say it all the time. A lot of African-American audiologists. I have people who still to this day will tell me they wanted to pursue audiology, but they were counseled out of it and undergrad and were forced to go to speech.
[00:21:32] Cause they're like, oh, well you could do speech speech is easier. Luckily, one girl, I ran into it in a Basel conference was telling me her story. And I was like, okay, finish getting your degree in speech. If you still want to do audiology, this is what you need to do. She listened and now she's dual certified, so she's way better off because those numbers are also going down, but she shouldn't have had to jump through all of those hoops just to become an audiologist.
[00:22:04] Carrie: So it's almost like at that, well, first at the level of, um, I guess advising, right, and the undergraduate type programs that it, education needs to start. I was going to make them that too. But yeah,
[00:22:23] Lauren: I was going to mention too, because not all the audience might be familiar with the listening sessions Jessica was talking about.
[00:22:30] So she's referring to, um, after the murder of George Floyd, ASHA hosted several listening sessions. Um, that were not recorded. You can't get access to them anymore because they were about racism and, uh, things that our peers were dealing with. Um, they were emotionally wrenching sessions with horrifying stories throughout better.
[00:22:57] Like Jessica said happening all the time. These aren't things that are dated, um, they're happening all the time. So this goes beyond graduate school, right? I mean, we have to continue to be mentors and continue to be allies to all of our colleagues throughout our whole careers. Um, because a lot of what our colleagues of color have to deal with when they begin working, go beyond just being a clinician like it is for some of us, that's the only thing we have to think about.
[00:23:30] Um, so anyway,
[00:23:33] Jessica: yeah.
[00:23:35] Carrie: Jessica, Did you ever have an experience yourself of being discriminated against in like school or your practice profession and not too much? You, you felt like you were kind of lucky in that respect.
[00:23:51] Jessica: Definite microaggressions. I remember.
[00:23:58] One time. There was this one professor that every time I would walk down the hall, um, and I was still a student, um, would stop me to ask me where I was going. I'm like, I'm going to the lab. Like it w it became to that point, it like the other students were aware and they were like, what is the deal? And.
[00:24:21] You know, eventually that person left and then it was fine, but you know, always stopping like, well, where are you going? What are you doing? What am I gonna do? You know, I know the code to get in. Like it was, you know, but those kinds of things, I think they didn't happen at a certain degree to where it would just be like, are you kidding me?
[00:24:44] And I was lucky that I had such a strong foundation and family. That I kind of was sure of who I was. So I didn't really let those things deter me, but those sorts of things happen all the time. You have to learn as navigating this world is an African-American woman that, you know, how I react, the tone I use, all those things could be used against me.
[00:25:13] So I think Lauren and I have like this great, good cop, bad cop dynamic. Whereas she can, she has, you know, the privilege to be the hot head in, and I'm always super, super calm about it still just as upset. But I think it just shapes how you have to approach things, because I really want people to focus on what I'm saying and how I said it, or, or to even use that as a way to negate whatever argument or whatever it is that I'm trying to get across.
[00:25:46] Carrie: So I feel like just from you talking a lot of your, I mean, your personal experiences and lived experiences and having a strong family foundation and support that way, really probably shaped how you would foresee a mentorship program
[00:26:05] Jessica: happening. Well, yeah, because your parents start to tell you at a very early age that you're not gonna have it easy.
[00:26:14] You're gonna have to work twice as hard. And so that was just instilled in me. And so I'm the same way with my students. So I'm just like, this is not going to be acceptable. If you're planning to go to graduate school. No, one's going to cut you any slack. If anything, you need to be turning your work in early, because they'll look for any cracks to say, see, they're, they're not as good.
[00:26:41] They are deficient in some way.
[00:26:45] Carrie: Do you have a specific story that you can share that kind of gives you insight into, because what I want to talk about next is like the positive IMPACT program that you guys are both involved in. But I think sometimes personal stories or somebody else's personal story really gives lights that fire to what a product or a program might end up at.
[00:27:13] Lauren: Can we do the Gabby story? I think so.
[00:27:19] Jessica: Okay. So we had a student who was in IMPACT. She finished last year, so she's in her first year of grad school. Um, super good student. Um, and she applied to seven different programs. I mean great essay. Cause we really worked hard with our students on their essays and she had top of her class, like literally the top of her class in our department, like won awards was up for the president award, the president's cup at Hampton university, which is extremely prestigious award to even be asked to submit for that award.
[00:28:00] So really great student. Um, and. She wanted to at least apply to her flagship university. You back in the state where she's from. And, um,
[00:28:17] I kept trying to dissuade her. I think Lauren also tried to talk her out of it and that school was her only rejection, but we knew we knew that was coming, but luckily she is a kid that is. Tough. And she was able to go on and she got lots of offers and scholarship offers and she's doing great right now.
[00:28:42] But, um, for some kids that may be. I don't have someone to kind of advise them and help them curate. Like this is a reasonable list of schools and you can have reach and there should be like, the people should have those conversation. Lauren and I both sit on admissions committees and. I think our IMPACT students' essays are just like in a whole nother category compared to some of the ones like I think they could be.
[00:29:14] I think everybody needs someone to kind of help them and help them think things through and edit and make sure you're presenting your best self.
[00:29:25] Lauren: As the mentors, we make them work on them. There they're provided with writing coaches That helped them learn how to be better writers. They spend months editing, revising, rewriting editing, and it shows, um, I, I personally think our students' essays stand head and shoulders above other students' essays because you could see the time that they put.
[00:29:53] The passion that they put in the work that they put in. Um, but you know, that's not obvious to students that they need to do those things to stand out. Um, and that's where the mentoring really comes into play. I mean, this doesn't get at why we started the story Carrie, or started the program, Carrie, but I love to tell this story.
[00:30:17] Um, so like we said, Hampton is an HBCU Case Western is not. Um, Case Western really struggles, recruiting faculty of color. In general, we have very few faculty of color across the whole university and, um, Uh, we have a student who is in the IMPACT program, but when they, they have to interview with us. So the students apply, they submit an application, they have to write an essay.
[00:30:45] Um, Jessica and I review these applications and then we invite students to intern. And, um, you know, Jessica's name is not assuming one way or the other Jessica Sullivan is a very general name. It could be anybody. And so she just assumed that Jessica was white. And when we got on the interview, we were in a zoom room and the second she saw Jessica's face, I mean, right.
[00:31:16] Jess, that was. Just completely changed. And she had a smile from ear to ear and she was flabbergasted. But Jessica was black. And I think Jessica actually was like, teasing her. Like, did you not expect it to be me? And the student said, no, I did. I didn't, I didn't expect you to be anything but white because everyone I've met in this profession, um, at Case, and, and not at Case and the clinical experiences she's had the opportunity to have, they've been doing.
[00:31:53] Um, so that was just, it was very heartwarming. Um, and I, cause I always say, you know, there's, I've had wonderful male mentors. I've been very blessed to have amazing mentors. Um, but for me, having a female mentor has been very special in my life. Um, and they can connect with you on levels that other people can't right.
[00:32:15] And the same is true for, um, our students of color.
[00:32:20] Jessica: Yeah. So for me, because, you know, I really didn't have any professors that look like me. I had great mentors, but they didn't look like me. Um, so it wasn't until I went to my first and BASLH conference after participating in MSLP that I met, um, Dr. Gwendolyn Wilson.
[00:32:43] And she was at the time, the chair of, um, The department at South Carolina state, which is an HBCU and she was the VP of. Um, academic affairs for audiology forASHA. And, you know, I met her at, in BASLH and then later on, um, at the international Congress of audiology in Hong Kong of all places, I see your again.
[00:33:05] And so really only two African-Americans that I saw the entire week we were there. And from that moment on, like, we were, you know, like peace. Like I would call her, she would see me every asset and she would want check-ins. So every professional decision I made. To this day, I've run it past her. Like she's, she's in on everything and she's supportive of me now.
[00:33:31] She's retired now. So she, you know, gives me advice as being a new chair. So I think mentorship is not something you pick up and put down. I think it's a, it's a lifelong commitment. If you were saying I'm going to mentor you, that means I'm walking the walk with you along the way. And that's what Lauren and I do for all of these students.
[00:33:53] Carrie: So just the backup, cause I want to dig just a little deeper into the like bolts of theIMPACT program. But if you would just give like, you know, an elevator speech of, if somebody asks you, what is the IMPACT, what would you say?
[00:34:11] Lauren: I would say that IMPACT is a year long mentoring program. That's how we originally wrote the proposal for the grant.
[00:34:21] Our original idea was it for it to be one year and it has continuous mentoring throughout the entire academic year. So it's consistent mentoring, not just a one-off mentoring. Um, now we really have to say. Annual mentoring because the students love the program so much that everyone wanted to continue.
[00:34:44] And so the students that didn't even graduate, we allowed to stay in with us. Um, they like to refer to it as an IMPACT family. Um, and so, you know, it's more than even just a year now, but that original like curriculum that we developed was a year long program.
[00:35:02] Jessica: Yeah. And I would say that the curriculum is designed to kind of help them elevate professionally and also to kind of give support and understanding to things that they may face.
[00:35:15] So we talk about those tough conversations about racism and microaggressions and all those things through. Cultural empathy book club. And I think that kind of helps them. It takes the sting out of it, in my opinion, like if you read about it and intellectualize, it, it kinda takes, however, people may want to use it as a weapon.
[00:35:37] It kind of takes that away and they can kind of still persevere. So I think. The nuts and bolts of IMPACT, but it also develops networking. And I think that's another key piece because we bring it because of COVID it changed. Right? So now we're bringing in our friends and professionals to help us talk to them about leadership, building your brand, professionalism, um, career options and all of those things.
[00:36:06] So I think that was something we didn't originally think of, but I think it adds a lot
[00:36:11] Lauren: of. Yeah. So for example, Carrie, in the first year of the programming, there were 12 of them. That were spread throughout the entire academic year. Um, so some of the events, events included things like book club discussions for our cultural empathy book club.
[00:36:28] That's what Jess was talking about. Um, some events included, included virtual tours of state-of-the-art research facilities. So our friends at Boys Town, national research hospital helped us with that. Um, and our friends at the university of Pittsburgh, CSND department helped us with that and it allowed our students.
[00:36:48] So case Western and Hampton are very small programs. So our students are only exposed to a few faculty. Um, so it was their first opportunity to see really state-of-the-art laboratories doing cutting edge research with all different types of disciplines. Um, and they were just blown away by what you can do and research and look into in our field.
[00:37:14] Other events include what we call our virtual family dinners, where we all get together on zoom and we eat via grub hub, usually to a theme that the students choose. Um, so actually we just had one this week and the theme was Asian food. Um, and. Two of our friends that are, um, really awesome professionals and who are also people of color in, in communication sciences.
[00:37:43] And, um, the students get to hear their stories. They get to hear their successes. They get to hear some of the trials that they've gone through. Um, and they learn from them. So it's like it's developing them professionally. It's it's increasing their network. Um, it's helping them to see people who do look like them, um, do really amazing things in our field.
[00:38:09] Um, we also have writing workshops, um, where everybody gets together and. Um, educated on how to be a better writer. And I, I think Jess will agree with me. We love these two because the writing instructors are showing you how you teach someone to become a better writer. So I think a lot of faculty. We'll agree.
[00:38:31] We weren't taught how to teach other people how to write. Um, so we've learned a lot, uh, not just editing things for people, but teaching them. This is how you become a better writer. So that's pretty much what the activities look like and they're spread across the year. Um, and we all get together and Case together.
[00:38:54] How often
[00:38:55] Carrie: do you guys meet
[00:38:58] Jessica: once a month? Okay. You usually, some months may have two events, but usually it's like January was a little busy, but typically we only do once a month. And I will say that having those family dinners for that first cohort really elevated them seeing themselves doing a lot of different things in possibilities, because a lot of those kids looked at some of the researchers who like, maybe I'm going to pursue a PhD and some are like, well, maybe I'm going to change my mind.
[00:39:28] And I'm going to reach for like training. Apply it to the university of Pittsburgh or start to change, you know, what they can see themselves doing. It kind of broaden their perspectives in a lot of ways.
[00:39:41] Lauren: Yeah. I mean, it did broaden their perspective. I'm thinking of. Uh, one of our Hampton fellows, who was, it was so inspired by the tour at Pitt.
[00:39:50] And then she applied for the summer acoustics research program that acoustical society just started running last year and was chosen for that program and got to have a whole summer experience in it. Um in acoustics and then
[00:40:05] Jessica: I applied for the spark award and got that. And so she's been like on fire, on our roles. So we, um, we're patiently waiting to see what grad school she's going to choose next.
[00:40:19] And I will say that this is the second year. Um, We will actually have two students applying for AuD programs. So stay tuned. You know, we are, um, still going to expand those numbers and percentages, you know, when two at a time, I guess,
[00:40:39] Carrie: Uh, how do you, uh, you said this is kind of your sec, right? Your second cohort of students, and you said most of your students were like, I want to come back to the IMPACT family cause they really enjoyed themselves.
[00:40:51] How do you envision those, that likes group of students that has already kind of gone through that first year, carrying that torch forward either to the first year when that was there or beyond?
[00:41:04] Jessica: We want to invite them back. And I think we've talked about ways to invite them back and we do kind of keep them abreast of what we're doing for IMPACT.
[00:41:12] We were lucky enough at ASHA this year to have our first in-person impact family dinner. Um, and some of those students were there and able to come and meet the new ones. So it was, it was pretty special. I thought, because that was the first meeting we were in the same
[00:41:31] Lauren: space. We like to tease them that they're the future family dinner guests, which they think, you know, how could I be that person?
[00:41:40] Um, because they're looking at people like Dr. Noma Anderson, past president of ASHA, and it's hard for them to see themselves really there yet, but we say no, in that in a few years, when you are having a successful career as a clinician or in a PhD program, you, you will be our guests back in this program.
[00:42:00] Um, and this year actually, Several of our graduates are joining us for our cultural empathy book club.
[00:42:07] Jessica: Yeah.
[00:42:08] Carrie: Well, that's great because then they learn like the value of being a mentor and how to mentor someone else.
[00:42:16] Jessica: And the funny thing is I have a Hampton student that happened to have joined us for our book club and she is consistently.
[00:42:26] Begging me to start IMPACT for the grad program. And then how can she be involved in what? So it's kind of infectious at how this is, this is actually moving. So, um, it, it has legs and I think it's in a good way. I think this is inspiring our students to realize that, yeah, you had good mentors. Now you can be a good mentor.
[00:42:50] And I think that's one way that we can long-term make a difference in the change. Right.
[00:42:56] Carrie: Yeah, it sounds like you have some already next steps for your program, but do you have, I mean, the other next steps that you guys are already thinking about and how are you going to, do you have to apply to keep it funded or is it going to be so funded?
[00:43:14] How does that work?
[00:43:16] Lauren: So we've got a lot of questions there. CarrIE that. The first thing is, you know, like you, the point that you made about instilling in our students for them to be mentors. One of the things we added to this year's programming, which was different from last year was a senior mentorship night.
[00:43:36] And that was one of the ways be kicked off of IMPACT this year, where our more experienced impact fellows at Hampton and at Case met with the younger students. Um, that we're in the second cohort of students and really talk, talk to them about what to expect and, um, really took them under their wing. Um, so that was really exciting to watch.
[00:43:59] And, um, I think we can see that our hard work pays off because they are also learning how to mentor the next generation. And that's kind of the point, right? The more number of people that we can expand and increase diversity, then those people inspire others to come along with them. And then it keeps growing and growing and growing Jessica.
[00:44:20] And I know that Hampton and Case Western can't change everything. Um, but we can hopefully, you know, when people listen to the podcast and see our students at ASHA giving presentations and are inspired to do similar programs at their universities, um, the IMPACT program was first funded through a grant from ASHA office of multicultural affairs.
[00:44:44] Um, and so that's what funded us to be able to do this program initially. We are very lucky because we were given a gift by the call group. Um, who's the parent company of SimuCase and continue it, um, to keep us going this year because they saw the value in what we were doing. Um, and they really didn't want to see.
[00:45:05] The program have to stop simply due to funding. Um, we wrote and submitted an NSF grant last year that got good feedback, but unfortunately it didn't meet the pay line. Um, that happens a lot with grants. It is hard to get them funded and we're working on another one right now. Um, so we hope we can get that funded.
[00:45:27] Um, you know, Kind of like that Carrie, right? You need money and you need support to do these programs. But I would encourage people that are listening was that our grant was really small through ASHA. And what we accomplished was pretty tremendous on the budget line. We had, honestly, it was a small enough budget that many departments could probably squeeze it into their annual budget.
[00:45:51] Um, and we had great success. We had students who were not going to even apply to go to graduate school, not only apply, but then get into every program that they applied to our three seniors who applied to graduate school, all got scholarships for their programs. Um, we have another Big a group of seniors going through right now or admissions.
[00:46:17] And I think personally all their packets look great. So I think we're going to have really great numbers and not just in graduate school, but in leadership, one of our fellows is the current president of national NSSLHA. We have fellows who weren't involved in student leadership at all now on the executive boards, that there is the groups.
[00:46:37] Um, like Jessica mentioned, one of our students won the SPARK award through ASHA. Was that the ASA summer camp. Um, so we're really proud of them. They're all working really hard and with the right mentorship and guidance and their work ethic, things happen. Right. And that's how we make the change.
[00:46:56] Jessica: Yeah.
[00:46:56] And I think they are examples to the other students that aren't in IMPACT within our departments, because they're looking at them like, wow, like you can do all of those things and you're still, you know, your grades are good, everything's good. But you're, well-rounded with deep knowledge in the profession.
[00:47:16] And so I think that's the other thing, just having access. And since Lauren and I've started, we've had other friends reach out. Figuring out ways, how to help and how they can help our students get experiences. So not that they need to be given special or preferential treatment, just have them in their packets, look like everybody else and just give them the same opportunities and then let them compete.
[00:47:45] Carrie: Is there anything, I guess I think all of that, like the, uh, success stories that you guys just shared right. There is huge as far as the IMPACT. And I could see, um, people listening and especially at a university type program, thinking how could we. Involved or how can we start something in a mini type of a way?
[00:48:08] Do you have a place where people could go and kind of see your curriculum or they could reach out to you?
[00:48:17] Lauren: They can definitely reach out to us. They can reach it. We, we haven't published anything Carrie that describes everything yet. Um, but though I, I do think we will eventually write about our experience, but we're always happy to talk to people.
[00:48:34] We have lots of ideas because we do it all the time. You know, one of the things about IMPACT is we have 12 events throughout the year, but we have a slack. That we talked to the students almost daily on, um, they have our cell phone numbers. We have group chats. Um, we are in constant communication with them.
[00:48:55] And so part of it really is helping to build a community where your students of color feel included right. At an HBCU. The students are included. There aren't separate groups, but at predominantly white institutions, there are typically groups of students and unfortunately the students of color don't always feel included.
[00:49:16] Right? So the biggest thing that I would encourage universities to do is try to recruit students to the major by what we do at Case is. Ask our students to put a presentation together about speech and hearing. So they made this really cute Canva presentation, five minutes long about all the opportunities and the diversity within our field for both speech pathology and audiology.
[00:49:43] And they give that presentation at the black student association meetings at the Hispanic student association meetings at the first gen student association meetings. And they go across campus trying to Spread the word about our profession. And because of that, we have a very diverse undergraduate cohort, right?
[00:50:04] So that's like the first step. And then once the students come into the major, you have to include them. And that's just not always going to happen automatically. You have to create that culture.
[00:50:17] Jessica: Yeah. And I think give their all, it's pretty homogeneous at Hampton, but it's still an important thing of, you have to create the culture in your department that students feel like they belong and they feel welcome.
[00:50:34] Um, I also have a little more support with the McNair program that we have the Ronald McNair program that, um, a lot of universities may have for minority students are first gen students to get involved with research. So that's another support and some of our IMPACT students are also McNair students as well.
[00:50:56] So that also kind of helps support them. Because again, we're trying to get them to go and present at conferences in. How you present at a conference. And so McNair also fits the bill for some of those things. Okay.
[00:51:10] Carrie: Yeah, a lot of, I think what you guys both shared just to things that different universities could put in place, um, without having a grant, but like you said, creating that culture, um, and opportunities that students and like Lauren, and what you said, having students put together a little five minutes, Canva presentation that they take to different organizations on campus and try to recruit, and that's something that's easily done.
[00:51:39] Um, but like you said, that next step, if they get into that, they still need to be supported, um, within that department as well. Is there anything that I didn't ask you guys about IMPACT that you want to share for our listeners today?
[00:52:00] Lauren: I'm looking through your list of questions, Carrie
[00:52:06] Carrie: that kind of even, you know, a story that you want to end with. Um, how IMPACT has benefited you as professionals, or maybe, you know, changed you.
[00:52:21] Lauren: I
[00:52:21] Jessica: think for me, Being able to see all the students at ASHA and how well prepared our impact students were and how they interacted. And they were navigating like, and this was a small ASHA in comparison to what we typically would navigate.
[00:52:38] But for a lot of them, that was their first professional conference. Or maybe even first trip out of a state by themselves. Really? Um, I think that was, that was special to me to see like the growth, like watching them from when they first got in IMPACT and we're having our family dinners and, you know, it's the pandemic t and we didn't know what this was, where this was going to take us, but I am happy.
[00:53:08] That we did it. And I'm enjoying the ride with Lauren, um, Lauren, when he,
[00:53:15] Lauren: yeah. You know, I I'd love seeing them at ASHA too, but I have to say Carrie. The biggest thing for me that always keeps my heart full and my sleeves rolled up willing to work very hard with Jessica to keep this going. Is when I see there, these essays that they work on.
[00:53:36] Um, pouring their heart and soul and tears and sweat. And no matter how many times they're sent to revise and edit and they keep going back and then reading these beautiful essays that really captures who they are and what they want to be in this field. If it just can stop you in your tracks, um, the growth that they've had.
[00:54:03] Between the professionalism and just understanding what they're going to be doing in our, in our space. Um, and then th the impact I know that they'll have on other people, that's definitely what inspires me. Keep working hard. I said, we're, Jessica's never getting rid of me.
[00:54:25] Carrie: Well, I want to say thank you to both of you, but being a guest today, I've learned so much.
[00:54:31] And I can just tell that this IMPACT program. Well have a ripple effect. And like you said, the more students that have the opportunity to go through it, they get to pass the torch to the next generation of students. And then it just keeps going on and on and on. So I hope that this program continues so that the ripple effect can continue as well too.
[00:54:57] So thank you guys, both for being here today. Thank
[00:55:01] Lauren: you so much, Carrie. And I should, I would just like to thank all of the people who have helped us over the past year and a half. Um, Jessica and I run this program, but we have had so many of our friends donate their time to us to spend late evenings into the very late hours, hanging out with our students through zoom
[00:55:25] And so our friends at Boys Town, our friends at Pitt, and all of our friends that have come to the family dinners. We just want to thank them so much because we couldn't be giving the type of program we're giving to our students without all of the support from all those people. So thank you so much for having us.
[00:55:44] Carrie: Yeah. Thank you guys for being here today and thank you all of my listeners for tuning into the empowEAR Audiology podcast. If you enjoy this, please share this podcast with others and please come back next time.
[00:55:59] Announcer: This has been a production of the 3C Digital Media Network.

Episode 37: empowEAR Audiology - Lisa Kovacs 

[00:00:00] Announcer: Welcome to empowEAR audiology with Dr. Carrie Spangler.
[00:00:14] Carrie: Welcome to the empowEAR audiology podcast, which is part of the 3C Digital Media Network. My name is Dr. Carrie Spangler, and I am your host. I am a passionate audiologist with a lifelong journey of living with hearing challenges in this vibrant hearing world. This podcast is for professionals, parents, individuals, with your own challenges and those who want to be inspired.
[00:00:43] Thank you for listening, and I hope you will subscribe, invite others to listen and leave me a positive review. I also wanted to invite all of you to visit and engage in the conversation on the empowEAR audiology Facebook group. Transcripts for each episode can be found at www dot three, the number three, C digital media network dot com under the empowEAR podcast tab.
[00:01:16] Now let's get started with today's episode. All right. I just want to welcome everyone to the empowEAR audiology podcast. I have a special guest with me today, Lisa Kovacs, and she, um, is part of the hands of voices, program. She's the director of programs and she provides support and oversight to the guide by your side and ASTRA programs, including startups support as well as providing technical assistance and information coordination.
[00:01:49] She is also director of the FL3 center, which was also going to talk about it a little bit later, but, um, I'm going to welcome Lisa today to the empowerEAR audiology podcast. Thank you Lisa for being a guest.
[00:02:04] Lisa: It's so great to be here with you, Carrie. Thanks for having me.
[00:02:08] Carrie: Yes. I was just trying to think about how we connected and I want to say that we connected in Columbus, is that right?
[00:02:17] Well,
[00:02:19] Lisa: I think you're right. I think I, I think I met you through campUS.
[00:02:23] Carrie: Yeah, so campus or that overnight camp. Um, and I think you were one of our guest speakers for the parent panel that year. And you came with your son, maybe that first year, and then you came back, uh, after that. And campUS was just an overnight program for individuals or teams that are deaf and hard of hearing teens.
[00:02:44] to learn about transitions. So.now that you have a lot to share on a professional side too, but before we kind of get into your professional journey, I would love if you would be willing to share a little bit about your parent journey, because I think parents stories are really powerful to share. So would you be willing to back up a little bit and share that.
[00:03:08] Lisa: Sure. Yeah. So of course, it's gonna age me a little bit to talk about the age of my son, but yeah. You know, I have to be honest, it's really fun to be on this side of the, um, parenting journey. Um, my, our son, my husband and I, we have four kids and our son, Anthony, uh, is 21. He's a junior in college. Now I'm studying theology and philosophy at Marian university.
[00:03:36] And, uh, our journey started when he and his twin sister, uh, were born three months premature. So, um, that was, uh, a pretty rough time for our family at the time. Um, we have two other girls, um, and they were foreign to at the time. And, uh, so Anthony and his twin sister, Lanie uh, we're at Riley children's hospital in Indianapolis, um, for three months, um, both really, really sick babies at the time.
[00:04:06] And so, um, they both spent, uh, over a month on, um, a ventilator and, um, uh, but, uh, both really have had. Great outcomes. They had incredible care at Riley. And, uh, so our, our hearing journey began, um, right as we were getting ready to exit the NICU three months later, um, they came to do his newborn hearing screening.
[00:04:34] And ironically, this was in June of 2000 and Indiana had just passed its newborn hearing screening mandate. Um, so wow were we fortunate. Um, so they came in and, and um, you know, we were learning lots about newborn screening back then, so they just kept screening him over and over, um, hoping he would pass and he didn't, um, his sister did, but he didn’t.
[00:04:59] And so, um, we were sent home from the hospital, um, needing to do pediatric audiology follow-up. And so from that point again, remember this was 21 years ago. Um, he came home on oxygen and so they were, um, at the time only doing, um, sedated ABRs and they didn't want to sedate him, uh, until he came off of oxygen.
[00:05:24] And so finally at about 10 months of age, We were able, um, to do his sedated ABR. And from that we learned, um, about his hearing loss. He in the NICU had, um, a couple of pretty big risk factors for hearing loss. He, um, was given ototoxic medications because he was sepsis. Um, and, uh, he also had a toxic bilirubin.
[00:05:52] Uh, and had many, many blood transfusions. And so his final diagnosis after a few different opinions was that he has auditory neuropathy bilaterally. So, um, so yeah, so because of, um, being so premature, he and his twin sister were both receiving early intervention services. We were getting all of them, OT and PT, developmental therapy.
[00:06:19] And then when he got diagnosed. Um, with his hearing loss, we started, um, speech therapy. So, yeah. So, um, from that point on, you know, it was, it was a little rough. We had, um, you know, lots of decisions to make as a family. This was, um, really new to us. We had, um, all of the experience was new. We hadn't really experienced any family members who were dealing with, um, a child born really premature.
[00:06:50] We didn't know anybody, um, who was deaf or hard of hearing. So all of it was a new experience and, um, it was, uh, like I look back now and think, wow, those were some crazy heres. Um, so, uh, so at the time of his diagnosis, um, my older two would have been five and three and then, you know, twin one-year-olds. Um, so it was a really crazy time.
[00:07:19] Carrie: So you said Anthony was officially diagnosed at 10 months of age, and then you were already receiving early intervention. What was your next step after that diagnosis?
[00:07:30] Lisa: Yeah. So originally he was diagnosed with bilateral sensorineural hearing loss. And so he was fitted with hearing aids. And, um, so then we started, um, you know, all kinds of intervention services we were doing, I guess I would call maybe total communication at the time we were doing
[00:07:46] Sign language with him as well as working on, um, some spoken language as well. Um, again, back then, I didn't know what I didn't know. So I didn't know the difference in all the different signing systems or about American sign language, or I didn't know, you know, even about listening and spoken language. Um, and so that all came over time for us.
[00:08:09] Um, we just, you know, started doing, um, whatever we thought might work. And then we really just had to kind of watch him and we had to change courses a couple of times to find what was going to work for him. And then, um, there was just some, some, um, I'm going to talk about like the parent gut feeling, there was just some things in my gut that just kept feeling like it wasn't.
[00:08:31] So we went and got a second opinion about his hearing and that's when we got the diagnosis of auditory neuropathy. Um, so we didn't change much. He, he, um, he's been a hearing aid user even with his auditory neuropathy and he's done really well, um, with hearing aids and, um, but it was just good to know, to kind of understand a little bit more about, you know, the way we would approach, um, some of his interventions
[00:08:58] Carrie: Right. So, and then after just kind of going back to some of your school journey with Anthony. What was that like from a parent perspective of going, did he go to a preschool school or did he start in kindergarten and then kind of maybe just some highlights along the way for you that
[00:09:19] Lisa: way? Yeah. Yeah, sure. So, um, because of, um, all the other.
[00:09:25] complex medical needs. He had early on, um, uh, early intervention was tough for us. And, um, so I, he was still, he, um, made huge gains in, um, his occupational therapy, uh, physical therapy, developmental therapy needs, like at age three, he was aging out of all of those services, but he was significantly still behind in language.
[00:09:52] And so, um, again, I didn't, you know, you don't know what you don't know as parents. And so I just kind of started doing my research at two and a half. The school districts came out and did like that transition meeting with us. And prior to them coming, I'd gone to visit some different preschools. I had gone to, I went to visit our school preschool, our public school preschool.
[00:10:14] I went to, um, visit a couple of private preschool placement. And, um, when the person came into our house to talk to us about transitioning into school, I, she mentioned the public school preschool program. And I said, yeah, I went to visit that. And I said, I'd really like to talk about some of these other private school placements that I went to look at too.
[00:10:35] And, um, she said to me, her exact words were, oh, we hear it. You know, X school corporation, we. Only use our preschool. There's no other options. And so I just knew, again, that mom gut feeling. I knew that probably wasn't right, but I had to go to work and I had to learn everything I needed to learn kind of about special education.
[00:10:58] And you know, what my rights were, um, what our rights were as a family and as parents for Anthony. And so by the time I, I was, I was equipped with some information and resources. By the time we had his first IEP meeting. And so, um, we did ask, we did propose as parents for him, um, to attend a, um, private preschool program, um, through, um, the public school at the, at the expense of the public school.
[00:11:27] And after a very long meeting, um, the team did come to the decision that that would be an appropriate placement for him and that they were willing to give it a try. So, yeah, so he, he attended a, um, a private, deaf and hard of hearing preschool program. He was there, um, for three years, uh, and then his last year there, he did a split placement.
[00:11:52] So to make transition back into our public school better, we did, um, three days a week at the private preschool placement and two days a week at a public, um, preschool, um, gen ed preschool program. And then by the time he was in kindergarten, he was fully mainstreamed
[00:12:09] Carrie: Wow, but that's great during any, and I know it's going to kind of feed into all of your experience of, um, professionally that you have right now, too.
[00:12:19] But I just want to say, since I did have the opportunity to meet Anthony a couple of years back, he's such a sweet, smart, amazing kid. And I didn't, you know, I didn't know him when he was little, but I knew him as he's transitioning in the college and, um, just amazing what he's doing right now. And just to see him now, um, when you kind of tell that story, um, you know, where, where you all started, right.
[00:12:47] Lisa: Yeah. You know, I got to say it takes a village. Um, we had some incredible, um, support along the way. We had, um, really fantastic professionals, um, who supported us, um, you know, provided us with great information and resources. I couldn't have done it. We, my husband and I could not have done this without them and they taught us very early on, um, that Anthony needed to be a strong little advocate for himself.
[00:13:15] So yes, you got to meet the benefits of that great information and resources that people came to us early on, um, to create the young man that Anthony is today.
[00:13:27] Carrie: Yeah. Is there anything reflectively that you would have done differently if you would have maybe known or. had different information or not part of the journey and you just learn along the way and it helps you in one way or not.
[00:13:45] Lisa: Yeah. If it was at all possible, you know, it would have been nice to have like, you know, a way to look into the future. Um, so knowing what I know now, um, I was so stressed and so worried and, you know, um, there were some just nights of no sleep throughout the journey, worrying about getting to where we are getting the best outcomes for him.
[00:14:09] And I look back and I tell families today, Enjoy the journey enjoy every minute of the journey. Um, and then the other thing is, is that, um, we didn't have the opportunity early on to meet diverse, um, deaf and hard of hearing adults. I, and, you know, they, uh, have so much wisdom, um, to share with us as hearing parents.
[00:14:30] And so I would have done that a little bit sooner too. I would have sought that out.
[00:14:36] Carrie: Yeah, that's interesting you say that. Cause my mom probably would have said some of the same things too is, you know, she wished she would have had a crystal ball. She wished she would've had the other parents as well as, you know, deaf adult.
[00:14:52]or hard of hearing adults to see and talk to you. Bye it's. Like you said, all part of the journey and most parents have never had that experience before. So it kind of gets me to more of, um, Involvement with Hands and Voices, which is a parent driven organization that supports families with children who are deaf and hard of hearing without bias around communication modes or methodology.
[00:15:22] Can you share a little bit more about how you got involved and connected with Hands and Voices?
[00:15:30] Lisa: Sure. Yeah. Hands and voices has been such a big part of our family journey. Um, I found hands and voices. I went to a presentation by hands and voices in my home state here in Indiana. Um, when Anthony was about two and a half, about that time, we were going through all that stressful time, transitioning to preschool.
[00:15:50] And I sat at this presentation, listen to the mission and the philosophy. Of the hands and voices organization. And, um, it may sound funny, but right. I sat there and like, it was like this big weight came off my shoulders and I'm like, I found my home. I found my people, um, the philosophy of hands and voices of, um, you know, their motto of what works for the child is what makes the choice right.
[00:16:15] Was exactly what I needed at that moment. Um, you know, this, this world, um, of deaf and hard of hearing can be quite controversial at times. And I was finding myself caught right in the middle of it. And when I listened to this idea that, you know what we, um, let's focus on what we all have in common. And that is this idea of.
[00:16:39] Raising deaf and hard of hearing children to reach their, you know, um, optimal, um, you know, outcomes and, um, and it, and there's multiple ways to get there and what works for one child and one family doesn't necessarily work for another. It was, it was such a refreshing idea. And so, yeah, I've been with hands and voices now.
[00:17:02] 18 years. Uh, so I started as the founding parent of the Indiana chapter. I sat there that day and said, I want this in Indiana. And, uh, so myself and actually a deaf adult, um, who was also a parent of deaf children. Um, started the Indiana chapter. Um, I guess that would have been back in like 2003 or four.
[00:17:27] And, uh, and then I worked for the Indiana or I was a volunteer for the Indiana chapter for many years. And then in 2009, our early intervention, um, system, our early hearing detection and intervention system, EHDI. Uh, wanted to fund a guide by your side program. They wanted to formalize parents, parents support.
[00:17:50] So I had the opportunity to start that program in Indiana. And, um, you know, what a humbling experience, uh, for many years, Carrie, I got to be the first point of contact, um, calling those families right after they had just, um, were, um, given the news that their child was identified as deaf or hard of hearing.
[00:18:12] And so, um, that is what made me, who I am today is, you know, we're talking about my family and Anthony and our story, but really, um, what equipped me to be able to do what I do and support families is listening to all the other family stories. So, yeah, so I did that, um, in Indiana and then I started working for Hands and Voices headquarters, um, in.
[00:18:38] 2012. And so we are 45 chapter strong in the US and Canada. Um, we're an organization for parents. That's led by parents. So all of our chapters are led by parents like me. Um, it was founded for parents and professionals in Colorado, um, about 25 years ago. And then all of a sudden word got out, um, about the mission and the organizational structure, and then other states wanted Hands and Voices.
[00:19:11] So our primary purpose now at Hands and Voices headquarters is to support our chapters in, you know, these 45 chapters who are on the front lines, um, providing support to families and professionals in their states or territories. And, um, you know, we, we say we envision a world where deaf, where children who are deaf or hard of hearing have every opportunity to thrive, achieve their full potential and experience equity and inclusion.
[00:19:38] That's our vision.
[00:19:40] Carrie: I love that vision too. And yeah, to know that you started with just one chapter in Colorado and have grown to 45 chapters in the US and Canada is amazing. And think about all of the support and parents that are able to be reached by having this vision and mission that Hands and Voices. Has for all of you, but kind of going back to your story that you said you started in Indiana as the Guide by your Side, what would you say coordinator or, I mean, is that a good word?
[00:20:20] Okay. So, um, was Guide by your Side and official program at that point in time, or was that something that you helped develop?
[00:20:30] Lisa: Yeah, no, I'm so Guide by your Side was founded actually out of our Wisconsin chapter. I don't know the exact year. Um, but, um, again, by some great professionals there that had this idea that, um, I actually formalizing, um, parent to parent support.
[00:20:49] Of course, that is not saying that informal support of parents just meeting each other is not vitally important, but actually taking this idea and formalizing it where there's a true curriculum and a training and, and, you know, um, evaluation of how the program's working for families so that we can constantly be improving it that idea
[00:21:10] Um, came about out of our Wisconsin chapter years ago, and then just started growing. And I don't know where Indiana was and it was in the early, early group of Guide by your Side programs. But I don't remember exactly where.
[00:21:24] Carrie: Okay. And so what I guess the benefits obviously of implementing this type of the program would be having that curriculum and, um, you know, uh, something that you actually following and training and things like that.
[00:21:39] How many states right now have a
Guide by your Side program? Like an official one through Hands and Voices
[00:21:48] Lisa: Yeah. So we have 25 states that have a funded guide by your side program, where they have, um, organizations or agencies who are funding them in many states guide by your side, um, is a good fit for EDHI program.
[00:22:06] In meeting their family support and engagement, goals and objectives. Um, so many of our programs have, um, are supported and funded through the, through the EHDI system. Um, but there are diverse funding. Um, you know, sometimes it's it's money that they've raised on their own, or we've got a couple of our programs that are funded by their school for the deaf.
[00:22:26] So there's a variety of different, um, organizations who fund. Our Guide by your Side program. I think what makes us unique is, um, several years ago, We were able to be involved at Hands and Voices with a research group out of Canada, from Western university and Dr. Sheila Moodie, and they were developing, um, a conceptual framework of parent to parent support.
[00:22:51] So Hand and Voices was on the, um, original group that was developing this framework. And once the framework got published, our Guide by your Side programs have now, um, infused that into our work. So we use that framework, um, as we're supporting families.
[00:23:11] Carrie: Yeah. That's an incredible framework too, that you guys have with Dr.
[00:23:15] Sheila Moodie. Can you walk through just. About, like if a family would have a guide by your side, um, person, I guess, trained, uh, parents, what does the, what kind of support overall, or kind of from a 360 degree view, does that person provide to the family?
[00:23:37] Lisa: Sure. So, first of all, we're always following the family's lead.
[00:23:41] So, you know, every family, like I, all the families I've connected with there just, hasn't been two that have been identical. So you're really trying to get to know the family first, find out what their immediate needs are, but we're really looking at, you know, different domains. So we're looking at the family wellbeing.
[00:23:58] We're looking at the child wellbeing. We're wanting to make sure that the family has good, accurate information. Um, that they are empowered to make decisions for their child and family. So those are the areas primarily that we're looking at. But again, um, we, uh, we train our parent to parent support providers, um, to make sure that they're really following the families need.
[00:24:24] Um, we always say, you know, you can go in with an agenda, but you will scratch that agenda completely. If the family has something else, that's an immediate need. And I also want to, I'm talking about parent to parent support, but I also want to mention that Guide by your Side has a deaf adult to family support component.
[00:24:41] So we also train deaf and hard of hearing individuals, um, from diverse backgrounds. So making sure that parents can meet, you know, a deaf or hard of hearing adult who functions. Um, and they're in navigates their world using American sign language, a deaf and hard of hearing adult who uses spoken language and, you know, cochlear implants and hearing aids and a hard of hearing deaf and hard of hearing adult.
[00:25:04] Um, so we that are deaf and hard of hearing adult to family support is so that those individuals can share their lived experiences with families as well. So that's an additional component to the parent to parent support.
[00:25:18] Carrie: That's a great component as well. And just like you said, with, you know, going into families every family his journey is a little bit different.
[00:25:26] And so being able to. I have that I guess, shared experience from a deaf and hard of hearing adult. It is important to, because all of the journeys are going to be a little bit different, um, that they bring to the table. What if a state does not have a program? Is there, have you heard of any ways that states have tried to implement or another avenue to implement this kind of parent to parent support?
[00:25:53] Lisa: Sure. So, first of all, I want to say all of our chapters. Um, so, you know, I said we have 45 chapters and we have 25 guide by your side programs. All of our chapters are providing support to families. Um, you know, that's just who we are. Uh, but some of them have been able to receive funding to implement this formalized program.
[00:26:12] Um, I also want to mention that at Hands and Voices we're just one. Organization of many really strong organizations out there. And I don't want to begin to, you know, even mention them all cause I'm going to leave somebody out, but there are also other really fantastic family-based organizations who can provide family to family support as well to families.
[00:26:36] Um, you know, it's not about us making sure it's hands and voices that's providing it. We just want to make sure every family is getting access to. And, and Carrie when I talk about access, one of the, um, biggest challenges that we face is that some states have identified that family to family support is, um, part of their systems of care for family.
[00:26:59] So they ensure that every family gets referred to family, to family support families. Families don't have to go find it then. If you remember, you know, just 20 minutes ago when we were talking about my family journey and I didn't know what, I didn't know, families have so much going on that to, to assume that they are going to be able to go out and seek family to family support, um, is, is, um, it's just, it just doesn't happen.
[00:27:27] And so when a state system recognizes that this should be a part of the systems of care that every family should equitably get offered the opportunity to enroll in a family to family support program. That's where we see again, equitable support when it's not set up that way. I believe the families who need us the most are who don't find us, um, because.
[00:27:54] You know, there's no system that sets sets set up that they get an automatic referral.
[00:28:00] Carrie: Yeah, that makes sense. And I believe the Joint Committee on Infant Hearing their position statement, 100% support this family to the family support. And you have, you know, American academy of pediatrics and audiology and speech pathology and parents, and lots of organizations.
[00:28:19] Who've recognized the importance of this family to family connection.
[00:28:23] Lisa: Yeah. You know, that's been my experience certainly as a parent, myself, is there are just some, um, fantastic, um, professionals and leaders out there in the field who really see the value of family to family support. Just like I say, you know, I, I'm a hearing parent, I, I don't have the lived experience of a deaf or hard of hearing adult or I'm, I'm not a speech language pathologist, or I'm not a teacher of the deaf.
[00:28:49] Um, it really takes us all. Um, and so, you know, for those fantastic professionals out there, being able to ensure that families are also getting access to other families for information, um, it's really important. And yeah, the joint commission on infant hearing certainly supports our work.
[00:29:08] Carrie: So moving a little bit.
[00:29:09] I wanted to talk about a couple of other programs that Hands and Voices has. And you talked about empowering pay rights earlier. And so handsome voices has a program called Astra. Could you share a little bit more about Astra and how that really helps with advocacy and empowerment?
[00:29:29] Lisa: Yeah. So Astra stands for advocacy support and training.
[00:29:34] Um, and this program was established, um, after Guide by your Side. And it, um, it really just took all the educational advocacy work that Hands and Voices had been doing and packaged it into a training curriculum. What happens is many parents like myself, um, find themselves having to quickly learn about special education or what we'll call part B services.
[00:30:02] So transitioning from early intervention into special education and you know, many parnets. Again, like me would say, we, I just started learning about early intervention. Now I've got to learn about, you know, part B or special education. So that's what Astra is intended to do is train parents and equip them with the information that they need so that they can best advocate for their children.
[00:30:28] Carrie: It the training. Typical, I guess, um, training, is that done? Like what does it look like? Is it like a one day thing? Is that a couple of days? Thing?
[00:30:40] Lisa: Yeah. So, um, if you, if you go onto our website under Hands and Voices.org, we have a whole Astra section. Tons of resources there. Um, the training is actually done through our chapters.
[00:30:52] So the chapters, because they're, you know, they're our frontlines, they're our local people. So the chapters can conduct the training, um, and their state or province or territory. Um, and so we've trained now in 25 states, um, in the United States. Astra and we call it basic training. But, um, I don't know that there's anything real basic about it.
[00:31:16] Um, it's like drinking from a fire hose. I'll be, I'll be honest. It's an eight hour training. Um, and then, um, our chapters can also apply to have what we call an Astra program. And when they become an Astra program, they train individuals, um, to then be Astra advocates on behalf of families. And that's a whole second day of training, kind of the finesse of advocating on behalf of a family or not on behalf.
[00:31:45] Let me change. Let me say, alongside a family, our, um, our goal is not to do it for the family. It's for us to be models for the family to teach them so that they can then do it themselves for their child. And ultimately our goal is, is that then they'll model for their child, so the child can advocate for themselves.
[00:32:07] So that's yeah. So that's what Astra is all about. Um, and like I said, we've been, we've been to 25 states so far. Um, and we have lots of professionals that join us at our training too. And, um, seem to also really enjoy it.
[00:32:21] Carrie: Yeah, that was my next question. Is it targeted to other people besides, you know, families that you've fed a lot of professionals and debt going?
[00:32:30] Lisa: Yeah, it's really good. You know, um, I always try to, as, um, I always tell our chapters, we want to make sure we have lots of families there, but it's nice to have a mix of parents and professionals because just by the comments and the questions that are asked, they learn from one another so much. So it's, it's always good.
[00:32:47] Um, to have a mix of parents and professionals together during the training
[00:32:52] Carrie: And is this training targeted to a certain like parent child age range? Or is it from birth to graduation?
[00:33:03] Lisa: Yeah, it's really it's birth to yeah exiting school, you know, the, the. Um, you know, my son, my son's a junior in college and that, and although I'm really over the peak of the journey, um, you know, the journey continues.
[00:33:19] And so there's so many transitions from early intervention to preschool from preschool to kindergarten. And then middle school, you know, when they all of a sudden start changing and having lots of different teachers, and then that transition age, when we're really looking at post-secondary education or transitioning into the workforce there's, um, needs of students then.
[00:33:43] So really Astra covers that whole age.
[00:33:47] Carrie: Yeah, there's always something new. I think as a parent, you probably feel that every like stage of transition, it brings about those emotions again, then how you deal with it might be a little bit different but the challenges change along the way, and to be able to have other families and professionals to ask, um, would be important too.
[00:34:08] Lisa: Yeah. And you know, again, we talked about the uniqueness of each child and what's also awesome about Astra is that we serve families no matter what the communication or language is of the child, whether they're attending their home school or whether they're attending a state-based, um, deaf school or they're attending a private
[00:34:28] You know, listening and spoken language school, we are trained and equipped to support families, um, to whatever that educational need is of that student. And we know that again, um, that is unique based on each child and family.
[00:34:42] Carrie: Right. Yeah. Thank you for sharing about that as well. And I know I, I attended one as a professional in Ohio.
[00:34:49] It was a while ago, but I, I did get a really nice book that had a lot of information in it. And then I know you can go to the website and find additional support and information there too. It was a great trainingt for that day, and like you said, it was like drinking out of a fire hose because there was so much great information that was coming out of that whole information packed day.
[00:35:12] before I wanted to ask you about one other program that I know you are the director of, and that is the FL3 center. So how did this program or center come about? And can you share a little bit more about that?
[00:35:30] Lisa: Sure. Yeah. You know, we just had to join the professional world of acronyms when it comes to deaf and hard of hearing.
[00:35:36] So FL3 stands for the family leadership in language and learning center. And this was first established in 2017 by the health resources and services administration at the maternal child health bureau and its purpose is to provide technical assistance and support to national state and territory, EHDI systems of care.
[00:36:03] In order that family engagement, leadership and family support is provided to newborns and young children. So, you know, again, you talked about joint commission on infant hearing, being, you know, very supportive around family support, um, HRSA or the health resources and services. Administration also has a strong belief in the value of family engagement, leadership and family support within the EHDI system.
[00:36:29] So Hands and Voices was fortunate enough to be the first recipient of the federal funding. And then we were awarded the second round of a cooperative agreement in April of 2020. So we're working through our second round of. And the center allows Hands and Voices. Um, the opportunity to support all family based organizations, not just our chapters, um, and parent leaders in the 59 states and territories.
[00:36:57] So that's exciting. We're meeting, you know, lots of, um, other people out there who are doing this work of providing family leadership and engagement in the EHDI system. So we really appreciate our work that we do with all the EHDI system stakeholders. And we're committed to ensuring that families receive the best possible resources that they can so that their children can achieve success.
[00:37:24] Carrie: That sounds like a huge opportunity. Can you just share a little bit more of how, um, your center is able, uh, how they are supporting the different states? I mean, is it one person from each state kind of is connected to you? Or, or how does that work.
[00:37:44] Lisa: Yeah. So we, um, we really look to each one of the EHDI programs and the 59 states and territories to identify who the family based organizations are in their state that they're working with.
[00:37:56] Although, you know, all of our resources are available to any family based organization in every state. Um, and we really look at kind of targeting like technical assistance and training to family based organizations. We look at communication dissemination, like kind of being a, um, a national communication and dissemination around family engagement, leadership and family support.
[00:38:21] Um, we look at national partnerships through the family-based organizations need to partner with, um, you know, all the different professional organizations. So national partnerships are really important to us as well. Um, so we kinda, we look in all those different areas and, you know, it was a great starting place, um, with Hands and Voices, because we do have chapters in, you know, 45 different, um, states and territories.
[00:38:46] So that was a great starting point.
[00:38:49] Carrie: Wow. And so now that had just started in 2017, I'm sure that you and knowing you have a big vision for where it can go. This center can continue to grow and go.
[00:39:00] Lisa: Yeah, it's been really fantastic. Um, you know, working with, again, uh, the leaders of the EHDI programs in each state and territory, it's, it's wonderful to see the passion and the professionals who are leading those programs to ensure that newborn screening is happening.
[00:39:15] That diagnosis is happening on time that we're hitting those one, three, six timelines. Um, it, and so, you know, we're just here to, um, support them in any way that we can, because we all have the shared vision of just ensuring that all kids, um, you know, achieve their optimal success success.
[00:39:35] Carrie: Wow. Well, thank you for sharing about those programs, I guess, um, as we start to wrap up here with this podcast, So do you want to just kind of give a quick synopsis of, I know there's so much information on your website as well, but just kind of maybe some of the highlights of professionals or parents or people are listening today, if they would go onto your website, what, what would they see?
[00:40:04] Sure.
[00:40:05] Lisa: Oh gosh. Okay. So I'm going to start with our most recently released resources. So, um, we, in the first round of the FL3 center, we, um, partnered with a wonderful group of, um, professional experts in language and literacy. So researchers, speech, language pathologists, um, who came in, um, volunteered their time to work with us.
[00:40:29] And over the course of three years, developed some language and literacy tip sheets for families. And so we have those up on our website now, um, we have now added a family activity guide to each one of these, um, language and literacy tip sheets. And now we are working and interviewing each one of our language and literacy expert.
[00:40:54] To come and talk about those, the tip sheets that they were involved in creating and how families can best use them. So, yeah, like right now, up on our website, we have Christi Itano, who's up there, you know, with, you know, uh, a couple of great, um, videos I think about, uh, phonology and semantics Um, and, uh, so we're constantly adding new videos as we go.
[00:41:21] That same group also helped us, right. Um, um, developmental milestones resource. So it's, um, you know, there's lots of different developmental milestone checklists out there. This is more about explaining the importance of developmental milestones for families and how parents can, um, learn more about what to expect their child to be doing at different ages and stages.
[00:41:45] And then, um, finally this past year, you know, through living through COVID in the past couple of years, we created what's called the virtual waiting room. It's on our homepage of our website right now. And it's a really fun, interactive, um, resource that has information about tele-health parent to parent support.
[00:42:05] There's a really good, um, guide for families to audiology. And then like if you click on the little coffeemaker, it's a self care station that really talks about the importance of parents and, you know, making sure while they're doing all this hard work for their child, that they're taking care of themselves.
[00:42:22] So. That's just a few of our recently released, um, resources, but I really encourage you to, you know, explore our whole website and we are getting ready really soon to unveil a new homepage. So, um, that will be coming
[00:42:39] Carrie: Oh well, that is exciting to look forward to you too. And I will in the show notes, definitely link the Hands and Voices website.
[00:42:48] So people can go directly there and explore all of these new resources as well as the resources that you already have up there. As we wrap up. Is there anything Lisa that I didn't ask you, that you were hoping that you'd like to share?
[00:43:05] Lisa: Well, I was just thinking about like my advice to parents. Um, you know, when I look back on my journey, it, it's amazing to know that the difference, um, a family can make in a child's, um, language learning outcomes.
[00:43:22] Um, Being able to, there's so much to learn about how to provide a language rich environment for our kids. And that's where it all starts. Um, there's a lot of pressure about making different decisions for our kids, whether it's, you know, the language or communication modes or methods we're gonna use or what school we might, um, be exploring.
[00:43:45] And what I'd like to say to families is, um, you've got to start somewhere. And I think less emphasis should be made on the decision that's being made and more emphasis on that once you make the decision having, um, professionals around you who can help you, um, progress monitor to make sure that the direction you're going is working for your child and it's okay to change courses.
[00:44:11] It's, it's just fine. Um, and, uh, to trust your gut, I mentioned my parent gut a couple of times. And knowing that, you know, your child best and last, um, have fun. It can be a lot of work. Um, but there's so much joy. We sometimes have to just slow down enough to find the joy and enjoy it. The years fly by fast.
[00:44:38] Uh, so soak in this time with your children, because you just don't get the.
[00:44:44] Carrie: That is wonderful parent advice, but, um, for out families as well as any parent along the parenting journey. Cause it does go so fast and sometimes we get caught up in that moment and. Of stress and making decisions. And I like what you said too about, you know, taking time for yourself to doing that whole journey and being able to reflect on everything right.
[00:45:08] . I want to thank you, Lisa, for being a part of the empowEAR audiology podcast and sharing just your parent journey, as well as giving our listeners an overview of Hands and Voices and some of the programs that are offered there. And, um, I'm going to provide some of those links in the show notes about the wealth of information that you provided as well today.
[00:45:32] Lisa: Thanks, Carrie. It is such a pleasure to work with professionals like you and, you know, your unique experience of being deaf or hard of hearing your self bring so much value to us as parents. So I really appreciate you inviting me today. And I'd like to invite all the listeners to come, um, you know, follow us on our social media, too at Hands and Voices.
[00:45:52] Our Facebook page has over 13,000 followers right now. Um, but we have plenty of room for more. So we would, um, love. Everyone to join us on Facebook.
[00:46:04] Carrie: All right. Thank you, Lisa. And I want to say thank you to all of our listeners. I want us, um, for spending time with us today. If you've enjoyed this podcast, please share it with others and take the time to give a positive review and until next time.
[00:46:18] I hope you stay empowEARed on your journey.
[00:46:21] This has been a production of the 3C Digital Media Network.

Episode 36: empowEAR Audiology - Dr. Kristina Blaiser 

[00:00:00] Announcer: Welcome to episode 36 of empowEAR Audiology with Dr. Carrie Spangler.
[00:00:16] Carrie: Welcome to the empowEAR Audiology podcast, which is part of the 3C Digital Media Network. My name is Dr. Carrie Spangler, and I am your host. I am a passionate audiologist with a lifelong journey of living with hearing challenges and this vibrant hearing world. This podcast is for professionals, parents, individuals, with your own challenges and those who want to be inspired.
[00:00:45] Thank you for listening, and I hope you will subscribe, invite others to listen and leave me a positive review. I also wanted to invite all of you to visit and engage in the conversation on the empowEAR Audiology Facebook group. Transcripts for each episode can be found at www dot three, the number three, C digital media network dot com under the empowEAR podcast tab.
[00:01:19] Now let's get started with today's episode. Welcome to the empowEAR Audiology podcast. I am so excited to have a special guest with me today. Her name is Dr. Kristine Blaiser, and I'm going to give you a little bit of information about her before I have her come on the air. Dr. Kristina Blaiser is an associate professor of speech language pathology.
[00:01:43] at Idaho state university, she earned her Doctor of philosophy and speech language, hearing sciences from the university of Minnesota. Dr. Blaiser’s professional and research focus is to ensure children who are deaf and hard of hearing reach their fullest potential specifically through a systematic assessment as the foundation for the support and training of the adults who interact with them
[00:02:11] Dr Blaiser is the coordinator for the ASHA's special interest group, pediatric pediatric hearing and hearing disorders, the Idaho representative, but then national speech, language pathology, advisory council, and a committee member of Idaho's newborn hearing screening advisory accounts. Dr. Blaiser directs the Idaho state university hatch program, which is helping adults talk to children lab on the Meridian campus since 2015 faculty and students graduate and undergraduate from the hatch lab received more than $450,000 of external funding coauthored.
[00:02:51] She has coauthored 12 publications and over 50 presentations at international and national conferences. So that is quite an extensive bio Dr. Blaiser, welcome to the empowEAR Audiology podcast.
[00:03:05] Kristina: Thank you so much for having me. It's an honor to be here with you, Carrie.
[00:03:10] Carrie: I'm really excited for this conversation today.
[00:03:13] And I always like to start my conversation. If I know somebody, how did we actually meet? And I was trying to think about that.
[00:03:21] Kristina: Yes, I, we were talking about maybe it was through an invited speaker, uh, for an ASHA convention, but then also Beth Walker, all good things lead to Beth Walker
[00:03:33] Carrie: good. Thankfully the bedrock that she seemed to pull us into many different things, but yes, and I think this past year has been fun even though, um, we weren't together.
[00:03:46] At ASHA, I was there. You have my trial, but we got to please act together. So that was a fun time to get to know you better. Yeah, that
[00:03:54] Kristina: was so fun. It was great. It was great to hear about our different perspectives on working with kids who are deaf or hard of hearing and how we can work together. The fun experience
[00:04:03] Carrie: it was and all of the technology work that day.
[00:04:07] Amazing. Right. It
[00:04:09] Kristina: was amazing. It was just like being there,
[00:04:13] Carrie: highlighted on the big screen there. So I always like to ask my guests, if they are in the profession, how did you get to speech pathology? I feel like a lot of people have a story behind.
[00:04:28] Kristina: Well, I started off at Madison and I was going to be a, a business major.
[00:04:34] And I ended up taking a lot of pre-calc classes and, uh, different types of classes and remembered that in high school I had taken a assessment an assessment that said, uh, you know, this would be a great profession. And it was either a florist or a speech-language that. So I remember signing up for my first class, uh, in communication, sciences and disorders.
[00:04:57] And I immediately knew that it was the right field for me. And I think that the idea of. Art and science in terms of helping people communicate with each other just became, it was so exciting. And I took my first aural rehab class in undergrad, and I knew that was it. That was the only thing I ever wanted to do was to work with kids who are deaf or hard of hearing.
[00:05:22] So as I kind of moved on, I really knew I wanted to specialize from a pretty early age, like my junior year in undergrad. And I knew I wanted to find a graduate program that could help me specialize. And so, um, I went, ended up going to the university of Minnesota and, uh, as I was taking my speech language pathology classes, I was realizing I did not.
[00:05:44] Have enough information just from speech language pathology. So I asked if I could take audiology classes. And so they let me start, you know, taking some of those as my electives. And then I realized that I still needed more information to be able to really do it. So I started taking deaf education classes as well.
[00:06:03] And so it's really interesting how my path at the beginning with, so recognizing that I needed to be able to Tap into other experts to be able to get a well-rounded view of, of what, uh, kids with hearing loss need. And so I did that. Back in graduate school. Um, and now I still feel like that's one of the things that I'm still trying to be able to figure out.
[00:06:26] How do we do that better as we are working on in the profession?
[00:06:31] Carrie: Yeah. I think all of us, like you said, the teachers of the deaf and audiologists and speech language pathologists, all look at kids who had deaf and hard of hearing in their unique ways. And we have collaborative ways that we also have our own ways.
[00:06:48] Which kind of brings me to my next question. And it is you have the foresight taking classes as an SLP to see, Hey, I need more knowledge from these different angles. And I know that in your work you've been able to survey some of the background and education and experience of providers working with this population.
[00:07:13] What did you find with that?
[00:07:16] Kristina: Well, the things that I'm finding are that our profession's best practices are really outlining expertise and skill sets of people who are specialized either in listening and spoken language or American sign language, or have these skillsets. But when we look at the training programs that we have at, um, even at the graduate level, We don't have that much overlap or actually any overlap, really.
[00:07:41] And so speech, language pathologists in particular, don't have any audiology classes at the graduate level. And so everything that they are doing when they're working with students who are in school settings or clinical settings, they're basing that information from something they had in undergrad, um, and maybe one class.
[00:08:01] And so. Some of the things that we're seeing is that speech, language pathologists don't have a lot of confidence in working with things like hearing technology. Um, often if they don't have any signing skills, then they don't also have confidence in working with students who are using ASL. And so it leads us to this place.
[00:08:21] Um, that we have these professions and now with the technology, we are so reliant on each other to be able to know how to optimize those, uh, those skills, but we don't really have the tools to be able to communicate them. And so some of the research that I've been doing recently is looking at how do we visualize some of the outcomes that we're getting so that we aren't giving these black and white narratives to audiologists or teacher for the deaf or hard of hearing that we're not saying on the PLS, the child had auditory comprehension skills of some so-and-so and expressive communication skills of so-and-so because that other provider may not have really any idea of what that actually means.
[00:09:07] We've been working on, uh, having some data visualizations through Tableau to be able to kind of show the outcomes and make them very transparent, not only to families, which I think is super important, but also to the providers, um, who, who are interpreting those so that they can see, well, maybe they're.
[00:09:26] Uh, language or their vocabulary isn't quite as developed as they want, but maybe their auditory skills aren't as developed as they need them to be either. And so we can start looking at the child as a whole, in terms of communication, as opposed to just our individual assessments that we get from our profession.
[00:09:47] Carrie: Yeah, which kind of brings me to some of your, uh, research, focus on assessment of children who are deaf and hard of hearing. And you kind of touched on it a little bit, but you also are looking at identifying patterns and trends and using that information from assessment for training and collaboration.
[00:10:08] So what have you found with your research in this area?
[00:10:12] Kristina: Yeah, it's been, it's been really interesting. And so what we've done is we've taken assessment protocols and we've been at been able to get permission from the publishers to be able to put them online. And so we have the families take the assessments online at home, and so we can create this cool visualization visualize report for the individual family.
[00:10:34] But then we also have the ability to look at it across all of the families in Idaho to see where are sort of the trends or the patterns that we're seeing in specific, um, assessments or, um, even in different regions, really. So we can look at how those, uh, those outcomes are even related to sort of the 1, 3, 6 milestones that we're looking at from, um, identification and enrollment in early intervention.
[00:11:01] And some of the things that we're seeing is really just this lack of, um, The of high expectations are understanding how to take auditory skills and turn them into language. I think that sometimes when people don't have a lot of experience working with kids who are deaf or hard of hearing or are using listening and spoken language, that they will focus on skills like.
[00:11:28] Identification of a sound or detection of a sound or identification of a certain object or localization that then when it turns into how does that auditory information translate into communication? Sometimes that they will switch into either a manual mode of communication or it will, it's not really sure about a lot of providers may not be sure about how to translate that into spoken communication or, um, getting a child to be able to do.
[00:11:54] generalize too. And that when we're working in early intervention, that can be a really natural thing to do with families. And it's just a matter of having that expectation that that can happen. So some of the things that we're seeing is just not really topping out in some of the skills that could be.
[00:12:14] So in terms of auditory skills, that may be again, just a detection or identification or localization, uh, in. The, um, vocabulary. We might see. One of the things I see a lot is that we're having kids who are really using a lot of requests for help or, um, signing for more asking for more. But we're seeing as that complex language or the increased variety of vocabulary is really not there.
[00:12:43] And so how do we take these different pieces? And really integrate them in together so that we can say, well, yeah, that the child can detect this, or the child can identify this, but how do we make that into it vocabulary goal? Or how do we turn that into a combination goal or start incorporating in morphology or syntax or, um, The other thing we've been using is that language use inventory, uh, by Daniella O'Neill.
[00:13:14] And we've been really seeing some pretty amazing trends from our younger kids, um, who are deaf or hard of hearing that near some of the trends in pragmatics that we saw for older kids, um, some of the previous research. And so we've been starting this conversation about how do we take these trends and then turn it into.
[00:13:36] Professional development, uh, because everyone has these great intentions of working with children and families, but not all of us have the same background. And so we've been really looking at how do you, how do we take the trends and the strengths and build on those strengths across the state or better also, how do we look at, wow, this is a skill that we could all work on.
[00:13:58] And so we've been working on doing things like lunch and learns or, uh, professional development opportunities. Um, We have a lot of awesome graduate students right now who are really interested in working with children who are deaf or hard of hearing. And we're trying to incorporate, uh, their skills because they're so good at technology and so good at creating resources.
[00:14:18] So we're trying to help them kind of seize this opportunity, um, and work as we'd look at that for professional development.
[00:14:28] Carrie: So what you're doing is you're identifying assessment trends. Through like family surveys and assessment tools. And you're looking at those different trends and the areas that are lacking, you guys are trying to put together more on-line professional development or resources that are accessible for individuals within your state, or is it a national trend or what, what do you see?
[00:15:00] Kristina: Yeah, well, we're starting it within the state. Um, and then we've been started incorporating, inviting some other states to participate and, um, get involved because the trend that we're seeing here is not just unique to, uh, to Idaho. I think that we see a lot of providers, um, just even through SIG 9 or some of the other activities that I'm involved with that.
[00:15:25] That providers again, have this great intent to be able to serve kids, but they're not always sure exactly what that means or how to translate that into intervention or translate actually our assessment data into intervention plans. And so, uh, we're trying to think of both synchronous and asynchronous opportunities for training, but the other thing that we're really seeing is.
[00:15:49] If you ask five people who specialize in working with children who are deaf or hard of hearing, they could know resources to go to off the top of their head. Right. They would be able to find those. But when we have providers who are less experienced, it's sometimes hard for them to navigate or find. The resources that are specific to the child that they're serving.
[00:16:10] And so my vision in the future, which hasn't come to fruition yet, but is to have assessment outcomes with QR codes that bring them to specific resources or things that they need specific to that child. So if we want to increase like lexical diversity, Where the type of vocabulary a child might have, we would have a QR code that would bring them to a list of existing resources.
[00:16:36] That would say here's a good way to, to practice, um, increase, use to verbs or adjectives, uh, and so that it would be very specific to help families with their child's specific needs and providers to be able to look at and find the resources they need for that specific. That's my dream.
[00:16:59] Carrie: That sounds like a great dream.
[00:17:02] I was just, this is just a question that popped into my head. Have you found that SLPs who may not have a background in working with children who are deaf and hard of hearing do a similar like assessment battery as they would with typical, um, or developing or typical hearing children. And has that been good or not so good?
[00:17:30] Uh, oh, what pieces are missing by doing it that way?
[00:17:34] Kristina: No, that's a great question. And some of the things we've been talking about so far, I've been more early intervention based, but as we kind of move into that school age, We have a lot of speech, language pathologists who are giving batteries of assessments for kids who are deaf or hard of hearing.
[00:17:51] And. The trick is, they're not really always sure about how to interpret those because the assessments aren't based or normed on children who are deaf or hard of hearing. So a lot of times they'll give us more developmental outcomes as opposed to like acoustic outcomes or look at trends. Um, or errors that may be more specific to a child who's deaf or hard of hearing.
[00:18:12] So a child could potentially be on the borderline of like an 84 and 85, um, sort of qualifying by a standard score. But when you look at the specific errors that a child might have, they might be missing things like plural S or. Third person singular possessive S and so when the speech language pathologist looks just only at the score that doesn't really look at the specific errors that the child might have, they missed that those cracks in that child's foundation that can lead to later literacy challenges or writing challenges, or even spoken communication challenges.
[00:18:50] And so I think one of the things that. I really like and recommend is that, um, speech, language pathologists use language samples to supplement their standardized assessments because that sometimes can give us a lot better picture of what that child is able to produce and as well as how well they do with narratives and how, how does the content and form, uh, really shape up when the, when the cognitive task is a little bit more challenging?
[00:19:20] Carrie: Yeah, no, that's great information there. And I know, um, once they have that more diagnostic information, how do you suggest, um, that the SLP work inter professionally to provide in a venture to enhance that communication and language and access for our deaf and hard of hearing students?
[00:19:47] Kristina: That's a good question.
[00:19:48] I think that
[00:19:49] Carrie: the,
[00:19:51] Kristina: a key part is really understanding that we have to be interprofessional when we're working with a child who's deaf or hard of hearing that we, to be able to, for a very sort of low level example, be able to target a phoneme that a child is not able to hear is, is very challenging when, and to, I think the other thing.
[00:20:16] Thing is really important for our field is that if a lot of speech language pathologists haven't had a graduate level audiology class, or they haven't had any of that content since undergrad, they may not always realize what the hearing technology can do right now. And, and so it may be like, well, we were going to work only on visual phonemes because the child can't hear this, or we're not going to be able to do this, but this is pretty good for when a child with a hearing loss can do or what a child with a cochlear implant can do.
[00:20:45] And I think that that's really kind of old school expectations. And so. Really somehow we need to be able to get that speech language pathologist to connect with an audiologist, whether it's an educational audiologist or a clinical audiologist to really kind of recharge their thinking of what that technology can do.
[00:21:07] Um, and then I think we need tools to be able to communicate effectively so that a speech language pathologist isn't kind of just thrusting a standards, you know, a standardized assessment into an audiologist's face. What can we do here, but being able to look specifically at what are some of that error patterns that might exist so that, that collaboration can really take place to start thinking about, well, is it about auditory access is about consistent access or are there things in quiet or are there things in noise that we should be working on?
[00:21:42] Um, but it's really just integral that we are talking to each other. I've been so fortunate to work as a speech language pathologist in an actual audiology office when I was at, um, in Minnesota. And so it became so clear to me how quickly we could change outcomes. When we talked to our audiologists really frequently and say, Hey, I think we might need a little bit of a modification here.
[00:22:09] And then when we worked together, Kids would walk out of the audiologist office like sh/s… oh, wow. I hear that now. Well, I never knew that was missing. And so, um, so I, not everyone has that optimized work environment, but that as a profession is something I think we really need to figure out is what are the tools that we have to share this information without reinventing the wheel for either profession.
[00:22:37] Um, so that it's easy. That, um, that consistent.
[00:22:42] Carrie: Yeah. You bring up a good point about the knowledge from both ends, because like you said, if a child is not producing any high frequency, phonemes is that a programming, you know, issue that they're experiencing. And by having that knowledge from a speech language pathologist standpoint, it's not just, they can't make the sound, but are they not hearing it?
[00:23:10] And to have that collaboration with the audiologist is, is important as well. So it goes both ways for sure.
[00:23:20] Kristina: Yeah, it's real. I think it, and I, there's not a lot of existing tools out there to make it super easy for, uh, for some of the communication and, and that's in places where people. You know, have a lot of clinical audiologists or educational audiologists.
[00:23:36] And there are a lot of shortages of providers, um, across the country. And so how do we, how do we do that when someone went in a pediatric audiology setting, but why do we do that when we don't have someone who even has a lot of experience with peds.
[00:23:55] Carrie: Right. And I just think of my experience in the school was, and there's definitely.
[00:24:01] Hearing loss are lower incident. Um, yeah, so, um, at most schools, speech pathologist may not have a student who is deaf or hard of hearing on the case mode for multiple years. And then all of a sudden they get someone and they haven't had somebody for 10 years. So the, like you said, the expectations have to be different, um, based on advancements with newborn hearing screening and.
[00:24:28] Yeah, early identification and technology when our kids are using technology as a form of communication.
[00:24:37] Kristina: Right. That's so that's so important. And that's where I feel like resources have to be catered to some of the assessments that we have so that we can better align sort of assessment, uh, interpretation to, to actual intervention.
[00:24:56] Carrie: Right. And fit it when it is school-wide with just common core curriculum and educational curriculum. How do you patch that in together as well? Absolutely. Well, your research has showed that there's definitely a, a gap with assessment and, um, how we integrate, um, interventions and just knowledge as well.
[00:25:24] So for those of who are listening today, who may be out there, and whether the speech language pathologist, the teacher of the deaf, even audiologist, um, um, parents, why would. What advice would you give? As finally, I was sharpening their knowledge and skills when they may have a student that is new on their caseload, or even current on a caseload.
[00:25:51] Kristina: I think being humble is an important piece. And recognizing that you don't come to the table with everything and that's okay. Um, you come to the table with a lot and. And that we have so much to learn from each other. I know that sounds a little bit cheesy potentially, but that watching, you know, cochlear implant mapping or watching a hearing aid fitting as a speech language pathologist, spending the time to be able to see how that actually looks and works is amazing.
[00:26:24] Right. And so, so many SLPs never had that experience, but if you can, and it, it makes sense. And just, it doesn't. I mean, it takes a lot of time to become a specialist in this, but to open your mind a little bit, to be able to say like, wow, I see, you know, cochlear implant programming is, is amazing. And seeing how that, how that hearing technology works in getting that idea is I think a huge piece of, um, of getting started.
[00:26:56] I think. Creating, there are a ton of amazing resources out there. Uh, and so maybe it's even going to something like, you know, our presentation at ASHA where it, it challenges you a little bit to be able to think outside of the box or to give you a little bit more information, thinking about. How do I get that refresh on what's really out there and what that expectation is, uh, connecting with.
[00:27:27] I think the family, the teacher for the deaf or hard of hearing, the audiologist, um, the speech language pathologist. Having a good relationship and figuring out what's the best way to communicate. Um, we, when I used to direct a school, we had a day where we had audiologists on the phone and speech language pathologist on the phone, and we would have just one room set up for conference calls and different people would go in and out, uh, for their child that was on their specific caseload.
[00:27:55] So, but we had it sort of set up so that this was the day, the second Tuesday of the month. We are still really good about privacy, that we could have the peep, right. People in the room at the time. And, um, and it was carved out and it worked really well. It took time and trust and, uh, and sort of creative problem solving.
[00:28:18] But I think that was doom now. And some of the other ways we have for communicating it can happen. It can happen. Uh, it's just a matter of putting the intent behind it.
[00:28:31] Carrie: And is that our great. Suggestions as far as collaboration and using technology and putting yourself out there and being humble about who you are and, and asking, right.
[00:28:43] Asking questions and developing those relationships. Do you have any favorite resources or are the resources that you were talking about as far as, um, some of the professional development that you went to develop, uh, any of those available yet, or? Well,
[00:29:01] Kristina: Yeah, we're getting there. Um, so I mean, I think Hearing Rirst is a great resource that is out there and Hear to Learn is another great one.
[00:29:12] Um, there is another really good one at, uh, Boys Town and I'm forgetting that website at the top of my head. Uh, but, but I think that there, I mean, there's great resources out there. A lot of the. Um, hearing technology companies have resources. It's, it's not that they're not out there sometimes it's just hard to navigate.
[00:29:35] What resource do you need for the specific child or specific case that you're working on? Um, I think that. I, this is a bias, but I think SIG 9 is a great resource. There's a great learning community that a lot of those different resources also have learning communities. Um, so being able to just join one of those and have that, that interprofessional collaboration, I think if you can be an interprofessional, um, community, I think EAA has a learning community as well.
[00:30:07] Um, I think that those things really help you to be able to see outside of just. Your specific area of expertise. Yeah.
[00:30:18] Carrie: And I think there's even some Facebook groups for sure. Professionals out there who, you know, can ask questions and, uh, lots of people chime in on different resources that they use to.
[00:30:29] But I agree with you. I think sometimes it's just hard to match Assessment data with what to do next. People can get overwhelmed. And if you're already busy with a huge case load, your idea of being able to have this is the assessment area, and this is a QR code that will take you to different interventions or tools that would be helpful would be a great way for.
[00:30:58] Early interventionist and school-age speech pathologist. It really just pick up and go, um, along with being humble and collaborating with the right people who are on their team too. Is there anything I didn't ask you that you were like, I wish I could talk about today?
[00:31:21] Kristina: Oh gosh. Um, you know, I think that the one thing that I'm kind of.
[00:31:28] Recognizing is that it takes all of us to be humble to do this. And I know that I've used that word twice now in a short amount of time, but just thinking about there's things that we know, and then there's things that we don't know. And, um, and that we, we are so much better when we try to just listen to the other person's perspective.
[00:31:53] Um, and. And I think that this field is so full of philosophies and, uh, backgrounds. And in that, if we can, if we can try to listen to each other, I think that may, that may help us because I think it's really important that we just try to optimize Outcomes for kids who are deaf or hard of hearing. And it's, we cannot do it by ourselves.
[00:32:23] I mean, we just, we cannot do it. We don't have a scope of practice. That's big enough to be able to do it all on our own. Uh, so I think that it's really a, it's an exciting thing when it works really well. And I think we have all the capability to be able to do it, uh, to, to a really, you know, pretty significant extent.
[00:32:45] It's just a matter of. Learning from each other. Like I learned from you, Carrie. I think you're awesome.
[00:32:54] Carrie: I learn from you too. I have to say that when we did our presentation together, Asher, I learned so much from you and thinking about it from a different lens, but it really solidified again, the importance of our two professions, really working closely together because.
[00:33:13] Like you said communication is important for both listening and it's a two way street. And by having our professions work very collaboratively together, this is, it benefits the whole child. Absolutely. Well, if other people are listening today and they were like, I have to get more information from Dr.
[00:33:40] Blaiser. I know she's working on some great information and resources and research. How can they get a hold of you?
[00:33:48] Kristina: Well, probably just my email. Uh, I'm not always the fastest at email, but I always get back eventually. Uh, uh, it's Kristina, kristina.blaiser@isu.edu
[00:34:08] Carrie: Perfect. And I can put that in the show notes as well. So people want to get a hold of you. They can reach you that way. I just want to say thank you for being a part of the empowEAR audiology podcast. I loved having you on today. I love having the lens of a sweep language pathologist who are working with children who are deaf and hard of hearing as part of the podcast.
[00:34:30] So thank you again for being a wonderful guest.
[00:34:34] Kristina: Thanks Carrie. Thanks for having me.
Announcer: This has been a production of the 3C Digital Media Network.

Episode 35: empowEAR Audiology - Dr. Kym Meyer 

[00:00:00] Announcer: Welcome to episode 35 of empowEAR Audiology with Dr. Carrie Spangler.
[00:00:17] Carrie: Welcome to the empowEAR Audiology podcast, which is part of the 3C Digital Media Network. My name is Dr. Carrie Spangler, and I am your host. I am a passionate audiologist with a lifelong journey of living with hearing challenges in this vibrant hearing world. This podcast is for professionals, parents, individuals, with your own challenges and those who want to be inspired.
[00:00:46] Thank you for listening, and I hope you will subscribe, invite others to listen and leave me a positive review. I also wanted to invite all of you to visit and engage in the conversation on the empowEAR Audiology Facebook group. Transcripts for each episode can be found at www dot three, the number three, C digital media network.com under the empowEAR podcast tab.
[00:01:19] Now let's get started with today's episode. I'd like to welcome Dr. Meyer to the empowEAR Audiology podcast. I am really looking forward to this conversation about how to advocate for educational audiology when the service might not exist. And I'm going to just give all of our listeners a little bio about you.
[00:01:40] And I'm just going to say back to Kym Meyer received her undergraduate degree in communication disorders and education. And she did her student teaching at Millnet Manor School for the deaf after teaching for a year. She decided to go back for her master's degree in audiology at Gallaudet university, with the intention of working in the clinical setting and not in the schools she worked as a clinical audiologist for a few years.
[00:02:09] Including at the Massachusetts eye and ear infirmary. And then she position as an educational audiologist opened up at the learning center for the deaf in Massachusetts. And she has been working for this organization ever since, since 1994. And then most recently a huge accomplishment Dr. Meyer graduated with a PhD in 2021 and special ed policy from the University of Massachusetts at Amherst.
[00:02:41] And one of the reasons that she decided to get this degree was to learn how to expand educational Audiology services for all deaf and hard of hearing students across the U S and Dr. Meyer, thank you for being on the empire audiology podcast. Thank
[00:03:00] Kym: you so much. It's really great to be. And yeah,
[00:03:04] Carrie: reason to go back to get your PhD is really a central topic for today's episode, which I'm really excited for our listeners to hear.
[00:03:14] But before we dig deeper into that, I always like to ask my professional guests, how did you get into the field of audiology? Was that someone or something that happened in your life that steered do this way.
[00:03:28] Kym: So I grew up hard of hearing in one ear. And so I, you know, it was learning sign language, but I was a spoken language user.
[00:03:35] And I decided to go with a certificate deaf education, which is how I kind of got started. Actually. Before I got into deaf education, I was actually a radio major. So I truly started in radio engineering. And I thought it was gonna be a DJ or a radio engineer. I did not like it. And so I started taking, I took an intro to audiology class and sign language, which classes of undergrad and loved it.
[00:03:56] Decided to go into education. I taught deaf blind adults for a year at Helen Keller national center. And really thought about what I wanted to do for the rest of my career. You know, looked at. The special education did I want to continue to be a teacher? I'm a speech language pathologist. And then I started, I did some observing of different people and observed audiology.
[00:04:14] And I said, that's what I want to do. I love the science of it. I love the, you know, kind of the range of people that you can work with. So I decided to go to Gallaudet University for my master's degree to kind of keep that, that education piece of it, but then also keep the science part as well. And.
[00:04:32] Good. And
[00:04:33] Carrie: you have done so much in the field. Why don't you say, I think I met you initially at an EAA conference. I want to say in Denver was when we met and we had a nice dinner and that's when I really got to know you. So I always find, have to connect with people all over the
[00:04:51] Kym: world. That's I love EAA conferences and can't wait till we can be all in comfortable
[00:04:57] Unmasked. That's really my hope. It is
[00:05:00] Carrie: my home too. So one of the things I know you went back for your PhD and really thinking about advocating for educational audiology to services. But I always know that. What you've done is huge. And we're going to talk about that, but it usually starts with some grassroots effort and along the way, because, so can you share a little bit about how you really got started with advocating for educational audiology services?
[00:05:32] Kym: Sure. So I was the school audiologist at the learning center for the deaf working with the deaf, deaf and hard of hearing children at our school. And I got a call one day from our, from the town that Framingham public schools called me. They knew who I was and they said you know, the special education director said we had an IEP meeting.
[00:05:48] The family moved up from North Carolina, I believe. And the, we had the IEP meeting and the parents said, well, where's the educational audiologist. And the special education director goes, I don't know what that is, but I know the deaf schools have one. So let me call them and find out. And I, at that point, explain to them, there are educational audiologists in public schools across the country, but not in New England at all.
[00:06:09] Only the deaf schools have educational audiology. And I got me thinking, why can it happen in other states, but not here? So I started doing a little more digging and I said, Especially directors didn't know they were supposed to and audiologists didn't know how to make them. So I went to some of my audiology friends.
[00:06:30] I still have lots of connections to the hospitals. And I said, I want you to start putting it into your reports. And educational audiology educational audiologists consultation is recommended. And they looked at me as if I was bonkers. They said, we don't have that. Why can we can't recommend it if we don't have it?
[00:06:48] And what I try to explain to them, you know, in my, in my special ed policy you know, PhD, I took. Special education law. And so it's not, they're supposed to do it's it's part, it's a related service under IDEA So they don't just get to say, well, we don't have it. So, you know, shook her shoulders and not do anything about it.
[00:07:08] So I to put it in and let's see what happens. And that was the trophy. special ed director. The parents were getting these reports from their clinical audiologist saying an educational audiology consultation is recommended. They were giving it to the special ed director. The special ed director was going, oh my gosh
[00:07:23] What do we do with this information? We don't have this. Where do we find it? And from there I was, I was given the, go ahead at my school to start a program 20 years ago that provided contract educational audiology services to public schools. And we have just boomed ever since. But you know, I can't, I can't, I'd love to replicate this in other places, but parents have to.
[00:07:42] We all have to work together to make this happen in other places. Yeah.
[00:07:46] Carrie: Wow. That is definitely a grassroots effort and a ripple effect that really happened in the whole process. So I think this conversation can be great because like you said, it could be replicated in other places and probably needs to be replicated in other places as well before.
[00:08:06] Too much deeper into policy. Can you just for our listeners, like start out with the why of like, why do children who are deaf and hard of hearing need an educational audiologist? Why can't they just have their clinical audiologist?
[00:08:23] Kym: You know, th that was the model in Massachusetts, before we had educational audiology and what the down part downfall of that was clinical audiologists often didn't know what to do with, with hat hearing, assistive technology.
[00:08:35] They'd just go we'll just order it, but I've never touched one since maybe college. So or it's not so much, you know, Just fitting the equipment, but getting into the classrooms and determining how is the equipment used? Are the teachers using, do they need additional accommodations? In addition to the the technology is the technology fit properly for a classroom?
[00:08:58] Is the teacher using it properly? You know, I, I can't tell you how many times I've walked. I've I've like tons of stories walking into a classroom and the teacher's wearing the microphone. First speaker and the speakers in the class. So, or they're using, they're using speakers when it's inappropriate to use them because it's not appropriate for the, for the child.
[00:09:16] So it needs to be an educational audiologist that chooses and fits the technology and then can get into the classroom and make sure that it's used properly.
[00:09:25] Carrie: Yeah. I think that partnership between the clinical and educational audiologist is so key for our students to be successful in the classroom.
[00:09:35] Definitely. So kind of getting to that question and really the meat of this podcast. What happens if a school district does not have an audiologist? Is this considered just nice to have if its available?
[00:09:54] Kym: So under the individuals with disabilities education act, IDEA which is special education law, there are a whole list of related service providers, occupational theory.
[00:10:06] Physical therapy, speech, language, pathology, nursing sign, language interpreters, audiology, or is listed there. Now think about what would happen if a family went to an IEP meeting and, and, and the team determined this child needs speech, language, pathology services, and the sped directors for the team chairperson who's running the meeting says, yeah, we don't have that.
[00:10:29] That's not allowed, right. Parents would go bonkers. I think the issue really is people don't know what's supposed to be there. I once asked a good friend of ours, Dr. Cheryl DeConde-Johnson. Why does Colorado state of Colorado has, has educational audiologists throughout the state? I said, how come your state has it?
[00:10:48] Mine. Doesn't. And she says, because our state followed the law. And so I, you know, and I kind of use that. It's like, okay, we need to, to, to show people what the law is. And then how do we make it available? Most parts of the country have school districts that are in large collaborative organizations here in New England.
[00:11:09] And in much of New York, we have these little individual towns. We don't have a collaborative type of program. So each individual's class district. It's town. The town I live in probably has 12 deaf and hard of hearing kids in the town. That's not enough to support a full-time educational audiologist.
[00:11:25] So there needed to be a different kind of model because a, a district couldn't hire them on their own. So so that's hopefully the, the model that we've created can be replicated in other places, states education as a state's right. What that means is states can set it up the way they want to. So in, in New England, Massachusetts, every town or collaborative town can do what they, you know, had their own educational system.
[00:11:47] In other states, they have huge regional systems which work for an educational audiologist hired in those, in those communities. Parents need to be given the tools in order to determine, you know, to, to advocate for their child.
[00:12:04] Carrie: I definitely. And like you said, you've done a lot with Wright law too. And I want to, I'm going to definitely ask you more about that document that you helped for that website too.
[00:12:17] But before we move on, I know you talked about IDEA, but what about. Some of our students who are deaf and hard of hearing may not be eligible for a specially designed instruction through an IEP. However, they still have hearing difficulties that they may need accommodation through a 504 plan. Can an educational audiologist be requested for this type of plan as well?
[00:12:44] Kym: Absolutely. 504 plans. You're correct. Do not require a specially designed instruction. That's what an IEP is for, but what for 504 plans, what they see, it's an access law. And so what the child needs is the access to the general education curriculum. And they can either use, they can use to, to, to gain that access accommodations or related services.
[00:13:07] Remember I mentioned before audiology is a related . Listed so we can provide the same kind of approach on IEP or 504.
[00:13:18] Carrie: Okay. That's great information to know, because I think most of that, I could see that fit into one of those two categories and the public school type system too. And another thing, I mean, I think educational ideologists, we went to be part of that whole team.
[00:13:35] Does the educational audiologist bring to that whole team that might be doing. Than what a speech language pathologist or a teacher of the deaf brings to that
[00:13:45] Kym: team. It's really important that those three professions work collaboratively you know, often with SLPs and I, I do training of SLPs at the universities that I work in.
[00:13:56] You know, they get one. And in, in hearing you know, what hearing loss is or technology. And so they had their expertise in that child. They might know that child really well, but how the hearing loss impacts the child's ability to access. They might not have that information. That's where the audiologists can come in, come in.
[00:14:14] There is, you know, teachers of the deaf Certainly that's all they do. But my, my dissertation, my PhD dissertation was actually on the teacher of the deaf shortage in our state in Massachusetts. So, you know, we don't have enough teachers of the deaf either. So, you know, it would be great if, if they had children who had both access, but, but truly on 504, as I mentioned before, 504 is an access related services, audiologists related service.
[00:14:39] So audiologists can provide that service on 504. Teachers of the deaf educators usually cannot. So that's why we kind of be important part of how the technology works, how the how it impacts the child, how it's used properly. That's what a, an educational audiologist can bring in. In our, in my program our teachers of the deaf in our educational audiology, Work very collaboratively in order to make sure that, you know, when there's technology questions, my audiologist will step in, in other districts.
[00:15:09] The audiologist is the only one providing the service. And so supporting the public ed, the regular classroom teachers on a regular basis.
[00:15:17] Carrie: Yeah, no dig a little deeper and a hearing assistive technology. Can't they just order that and get it out of the box and be ready to go
[00:15:26] Kym: Yeah, they can, I can they can and I've seen so much bad happen on that because I I'll tell a story.
[00:15:36] Cause my students know that I'm always full of stories. I once was asked to you know, go into a classroom and the, it was a, it was in February, I think. And they asked me to the school district, asked me to come in and said, well we've, we've just, we've decided to stop using the equipment on this child.
[00:15:57] That was a child I'd never met. I didn't fit the HAT quipment. And the parent and the district decided that they were going to take. The FM had equipment because it wasn't working, but the parents kind of pushed back and said, I want an educational audiologist to come in and look at the system.
[00:16:14] So now this February, so back in September, they did the school district. Did exactly that the speech language pathologist ordered the, the HAT system fitted on the child's a six year old child. And they said his behavior got worse. His you know, he just stopped. He wasn't making progress academically.
[00:16:35] So in February I get called in, I go in to check the hearing aid. I check the hearing aid. I listen to the hearing aid. It shut off. Every time you put the FM, the audio shoe wanted, the hearing aids shut off. So he had no amplification from September to February. And I'm like, and you didn't think that this was a problem back in September, October.
[00:17:00] I tell that story because it's the most frightening thing that can happen. They said, well, we did everything we were supposed to do. I said you didn't bring in an audiologists and you know, tons of stories like that, kids having equipment that doesn't fit with their, their hearing aids or their cochlear implants.
[00:17:17] You know, there's just so much not, not being done well. You know, you're going to, if an audiologist, I mean, sorry, but speech, language, pathologist, or a teacher the deaf does it, they're putting their license, their state license, their teacher license. There has somebody licensed at risk because they're not, it's not within their scope of practice in order to fit this equipment.
[00:17:39] Carrie: Yeah. And that's a great point. So you may have a director or administrator that Say to the SLP or the teacher of the deaf, you know, this is part of your role. And I , especially in some, maybe rural areas where they don't have a lot of outside connection. What would you say? You know, advice, can you give to that?
[00:18:06] Professional.
[00:18:07] Kym: Right. So, yeah, I get that a lot. I, you know, often I'll go into a, you know, I'll meet SLPs or I'll meet teachers and they'll kind of on the slide. Tell me, you know, I, I tell my sped director that I can't, but you know, they say I have to, it's my job and really. I want to, I want to tell all of those people listening today, that this is not your job.
[00:18:29] If you're not a licensed audiologist in your state, it is not your job to fit equipment. And you're functioning outside of your scope of practice. And I would say exactly that this is outside of my scope of practice. It's putting my teacher license, my SLP license and the school district In, in potentially a litigious situation.
[00:18:51] And you know, it's better if we get, if we get an audiologist it's not better, we need an audiologist. You use actually words, and this is what we need. We need an audiologist to come and fit this equipment. Or, and when you mentioned this earlier, if the child if you don't have happen to have an educational audiologist where you can't find one, then the clinical audiologist needs to do this.
[00:19:12] You need to pay the clinical audiologists for that service. And then the child will bring the equipment back and we'll make sure that it's, that it's, you know, functioning in the classroom. But to say that it's now the SLPs are the teacher of the deaf job. It's pretty frightening. I mean, I, I look at a lot of you know, groups on Facebook that she showed the deaf groups and there are just some pretty frightening things.
[00:19:33] You know, teachers that have her saying, I've got this child with a Baha. And I, how do I fit the, the FM to it? And I'm like, please don't please. But, you know, sometimes I'll, I'll, I'll message them privately and say, you know, just that please don't. And they say my job is on the line and that's just scary.
[00:19:55] And so how do we, we need to get more word out to parents so that they can help advocate for their child and for their selves
[00:20:02] Carrie: I'm sure a lot of it also got comes down to, they want to make sure whatever child they're working with is getting what they need. But you know, some of these, the other stories that we can probably both share about hearing assistance technology I don’t know, non-functioning because of the related service of educational audiology, not being there is really critical.
[00:20:30] Kym: And that happens, I think more often than any of us will ever know, because people don't know to check it. Don't know how to check it. Don't know that they're supposed to check it on a daily basis. That is actually in the law as well. It is a. Tell special, special education directors that it's supposed to be checked on a daily basis.
[00:20:49] I've been called a liar. And and I said, well, here's the here's the the guidance in IDEA here's, here's the, the, you know, the the section that you should read and, and it's, you know, that is supposed to happen. And so when parents learn the kinds of things that their school should be doing to make sure that the equipment and the technology is functioning on a daily basis, and then they can advertise that they can advocate for their child as well.
[00:21:15] Carrie: And I think that checking on a daily basis is so critical to, and I'll just tell them real quick story about non functioning technology too. There was a district that didn't have an educational audiologist, and I think it was probably a year later that we ended up contracting with that district. And I was brought in and I went in same thing, check the equipment.
[00:21:38] They had all the right pieces and parts there. And I went to listen to it and I'm like, this, the microphone is not working, you know, everything's on. And this was when we still had the little stickers and the contacts before the hearing aids and. It would say it was connected, but there was no sound.
[00:22:00] So this student for a whole year, they were doing this whole process of putting on audio shoes and connecting. And the child was never hearing out of that microphone for an entire year.
[00:22:14] Kym: And I think, you know, that going back to the six year old, same kind of story, one of, you know what I told me, the speech language pathologist who fit the equipment and shouldn't have you know, he's not hearing anything.
[00:22:26] Well, why didn't he tell me because he's six. And I think often what we see is the expectations of an adult told me to wear this equipment. I'm going to do it even though, you know, and it becomes this kind of self gaslighting of, well, I don't think it works, but I don't want to tell them that. Or if I tell them that they're going to tell you I'm wrong or, you know, so it's, you know, I once got called into a school district and they were, they were telling me that the the child is not, you know, they're just making stuff up.
[00:22:55] And I, I never go there first because I just don't. And so I went in and I listened and I said, he's not making this up. I'm here, it's intermittent. And that's part of the problem. When you have intermittency, it doesn't always not work when you want it to not work. So but I sat there for a whole day and I listened to him.
[00:23:15] This child is not making this up, this needs to go out for. And so, so that when that becomes the go-to, oh, they're probably making it up that that causes children to say, you know what, I'm not going to say anything we have to believe. Right.
[00:23:28] Carrie: And then adding onto that when someone's getting HAT for the first time and it doesn't work.
[00:23:36] The student doesn't know what it's supposed to found. Like I don't have, so of course, you know, that like, okay,
[00:23:44] Kym: exactly. When I got that six-year-olds equipment to work, I went outside the door and I always play Simon says or something. And so it was a door with a window. So you can, I can see each other.
[00:23:53] And I played Simon says, and he, his eyes were like, oh my gosh, is that what I was supposed to be listening for? I said, it's supposed to. And I told him, I said, this is what it's supposed to sound like if it doesn't sound. Tell a grownup, but that it's not working. Okay. I will. But it's so heartbreaking that it was February from September to February, that child did not hear it.
[00:24:13] And that's, that's one of my worst stories, but not the only one I have.
[00:24:18] Carrie: I know, but it highlights the importance of why the educational audiologist need. Figuring out what type of technology is appropriate to put depending on what they have personally, as well as, you know, classroom acoustics and all of those other things that are important for access in the classroom.
[00:24:40] What have you found as some of the main challenges for schools not to be able to find or access an educational audiologist?
[00:24:50] Kym: It is challenging and certainly our program would not be here if we didn't set it up. The
[00:24:57] you know, one of the things I would say is, is, you know, contact your, if there's a local parent organization, like a Hands and Voices. Do they know of what do they, is there a neighboring town that has one contact and see if you can contract with them? You know, contact one of the things we're starting with the educational audiology association.
[00:25:17] It's not really out a lot. There is contact EAA our parent organization and see if their state representatives were I'm one of the I'm the Massachusetts state representative. If you contact the person who can they refer you to, that can provide educational audiology services at the very least, if you can't get any anyone use the clinical audiologists that the child already goes to and, and partner partner with them.
[00:25:40] And these are some of the ideas that I put in the Wrights law document that I, that I published a few years.
[00:25:48] Carrie: Yeah. And can you share just a little bit more about how you got involved in that that Wrigth’s Law document and what that Wright’s Law document really would benefit for those who are
[00:26:00] Kym: listening today or so rights law is a website that was created by a special education attorney Pete Wright and His wife, who's a parent
[00:26:12] Right. And it, it really is quite rich in explaining the special education to families. Lots of parents, they do webinars and they do in-person trainings all over the country. I've been in their training. It's wonderful. One of the things that they they do is they put information out about related services, you know?
[00:26:31] And so one day they put out some information about a related service, a list of related services, and there was a whole list and audiology was missing from it. Now I I've gone back to, I wanted to make sure at the time did IDEA, especially law change. And I did not know it because. That shouldn't be but it did not.
[00:26:50] Audiology is still listed there. So I reached out to them and I said, you forgot audiology. And, and can you put it into that list? And they came back and they said, well, we don't have anything on educational audiology on the Wrights law website, would you be willing to write something? And so I did, I'd never done anything like that kind of writing before.
[00:27:09] And so it is on the website that I think it was in 2017 or 2018 that I wrote that. And They and what I have since learned is families around the country are using that document to advocate for educational audiologist services in their child's school as to why it's needed informing special ed directors, that it's a related service under IDEA.
[00:27:29] And so it's just basically a list of everything we're talking about today. You know, what happens if, if, if something. They don't have them have one. What can an educational audiologists do and, and provide some, some support and information there. I've been also contacted by you know, parents all over the country as well about that.
[00:27:47] So it's kind of really nice that it's making the waves and it's kind of getting out there. Yeah,
[00:27:52] Carrie: it's a great document. I know I've looked at it and been able to share that with, I had just, not only parents to direct too, but it's just a well written document that really explains what our role is and how IDEA supports that role too.
[00:28:09] Kym: Thank you. Well, I'm hopefully, hopefully it'll stay up there and be used by people. And I know that
[00:28:15] Carrie: you've done some webinars, for audiology online, teaching clinical audiologists that had an advocate for education audiology. Do you want to share any more about that
[00:28:25] Kym: webinar? So that was very specific to clinical audiologists.
[00:28:30] At the beginning of this. Remember I talked about putting you know, making a recommendation in the, in, in, in a report. You know, that's the clinical that's one of the critical pieces is we need to get the word out that this is what the clinical audiologist is recommending. You know, most AUD programs.
[00:28:48] I don't want to say most, I don't know how many AuD programs. It would be progress, but I know that there are 80 programs that never really even mentioned educational audiology in their, in their clinical training. So most audiology many, including, oh, y'all just may even not know about what do I need to do. This is what, so basically this was laid out.
[00:29:05] Step-by-step what clinical audiologists can do in order to advocate with their parents. About educational audiology services. One of the things I say is every time that parent leaves, they should get that Wrights Law documents. Every report they write, they should put in that recommendation that they are making a you know, the child needs an educational audiology consultation.
[00:29:26] The more they can say. The more, the district is going to start listening because, you know, if you say it once I, you know, I've worked in education, my whole career almost especially directors will go, yay. Yeah. When they get four or five reports from different audiologists that say the same thing, they're going to start to say, maybe I have to do something about this.
[00:29:46] And that's how change is it it. Yeah,
[00:29:49] Carrie: definitely. Do you have any other thoughts? Like it just kind of rang a bell in my head about how do we educate maybe more at a grassroots, but also at a national level for special ed directors. And what our role is as educational audiologist
[00:30:08] Kym: One of the, one of the challenge.
[00:30:10] So I'm a member of the council for exceptional children, which is a special education organization. There's not one overarching group where all sped directors belong to. And that's part of the issue. CASE is one special ed director group counsel, I'm not going to get the acronym, right? It's CASE And maybe split directors belong to it, but not all of them.
[00:30:32] And so kind of in my, you know, my next kind of iteration, I wanted to think about how do we get our, get, get the information out there. But more broadly to the special education community so that they can then advocate you know, further you know, so I'm hoping with this podcast, we can help with, you know, getting teachers and SLPs kind of the wording that they need to know with the, the webinar, the audiology online webinar, the you know, having educational clinical audiologists provide the you know, the wording and how to, how to do things from their perspective, by the way that, that podcast that Webinar is free to access for anybody to access.
[00:31:08] And but, but I don't think that's going to, that we can't, I can't end there. We can't end there, but we need to continue to, for all of those deaf and hard of hearing kids living, particularly in places like rural communities you know, how can we provide services now with you know, since COVID sadly we've now used more.
[00:31:26] Zoom and use more opportunities for remote work. How can that factor into, you know, if you have a child living in, you know, some rural county and they're the only hard of hearing child, you know, in a hundred mile radius, it's probably a realistic to say it, audiologists going to drive there every week, but, well, how can we use remote technology in order to connect with the school districts and do, do some observing and give some feedback and.
[00:31:52] The people that are there in order to make sure that the child is really is accessing their school
[00:31:58] Carrie: good outside the box, thinking for that too. Right. And I know I can actually link in the show notes the Wrights law document, as well as your audiologoy online webinars. Because I think both of those are great resources, but people did to click on too.
[00:32:16] But I know you are an active member of the education audiology association, and there's also a number of documents there. Do you want to just highlight some of those in case people want to reference those or go look at that?
[00:32:30] Kym: So one of the, one of the documents that I share with my students, I share with my, my staff know about this and, and special ed directors, which I think is really important.
[00:32:39] I think one of, one of the issues about special education or special ed directors is they. Hearing loss. Deaf and deaf, hard of hearing. Children are a very, very small number of what they do. What we know is it's, it's less than 1% of all children are on IEP, how hearing loss as a primary disability. So because of that, they don't really know.
[00:33:01] They just know hearing, you know, hearing the teacher does as hearing SLP does hearing. So that's why they kind of lump them in. There was a great document that that EAA put out a few years ago, it's called shared and suggested roles of educational audiologists, teachers of the deaf and hard of hearing and speech, language pathologists.
[00:33:18] There is a lot of overlap in what we do, and there's a lot of things that, that an SLP can do it where I can do depending on what it is. But there are things that only in SLP. Things only a teacher of the deaf can do and things only an audiologist can do. And that shared, suggested roles document from EAA really outlines what, everything that needs to happen for a child who is deaf or hard of hearing.
[00:33:42] And then which person is the only profession that can do it. And then. There are checkboxes in those that are already there saying this is the job for an audiologist, selecting, and fitting how adequate that is an audiologist job, but then there's some, some you know, boxes that aren't checked, which means anyone can do it, but who is assigned to do it?
[00:34:03] That's also important. One of the things I mentioned before is daily checks of hearing aids, cochlear, implants, and HAT. That doesn't have to be on by an audiologist or even a speech language pathologist, but who is going to do that? And it needs to be intentional. We need to be talking to school teams about, okay, well, it has to be done.
[00:34:23] And the classroom teacher is not the right person to do it because they are busy with 23 other people. So what else, who can we teach? You know, I basically say I'll look at a group of teachers or a team and say, okay, well who who's got the, the tech team. It's got the technology gene who will, who likes doing that kind of stuff.
[00:34:42] And then I grabbed them either the nurse or the teacher's aid or someone who's available and accessible to check the child's equipment on a daily basis. So all of that information is in that shared the shared resources. And then you can go through and kind of write in whose job is it to do that. And who was their backup?
[00:35:02] And it's a, it's a, it's quite extensive, it's an extensive document. And I certainly recommend that people will look at it because it's also good for advocating. You know, if, if a parent is learning that. A computer tech is fitting their kids equipment. I've had it happen. They can use this document to say, you know, this is an audiologist job, not the computer tech people.
[00:35:26] You know, one of the things I mentioned about whose job is it, you know, teachers, the teachers of the deaf and. SLPs, aren't trained to fit equipment. They're not trained to select a pro to select the equipment they're trained to maintain it. They're trained to, to, to, if there's something wrong to maybe fix it or get started at fixing it, but that's not their training.
[00:35:47] And so that's what an audiologist is trained to do. So that's shared and suggested roles of educational, audiologists, teachers of the deaf and SLPs. That is a great document for people to take away. And I learned what, who should be doing what.
[00:36:00] Carrie: And I think your point earlier about the fact that whether it's on the 1% of a very small percentage of students who are on IEP, who have deaf and hard of hearing as a primary disability, this document is so important for, like you said, it's a checklist it's very detailed for these teams that are not used to having a student in the district who needs these services.
[00:36:25] Kym: They don't know what they don't know. It's, it's just that they don't know. They think, you know, when you and I have both had this experience where they go, oh, those hearing aids or those cochlear implants, they're just going to fix everything. And they're just going to be like glasses. I'm wearing glasses.
[00:36:40] You know, my glasses make me see 20, 20, it's the same as hearing. And we all know who work in audiology. That's not the case. And so, you know, and, and so they just assume that the technology is the only thing the child needs and. Nothing, you know, the accommodations are lesser and there's just so much that needs to happen in order to have high expectations for deaf and hard of hearing kids and to make sure that they are reaching their potential.
[00:37:05] Carrie: Definitely. Is there anything that I didn't ask you that you're like, I wish I would've asked you that you want to share with all of our listeners
[00:37:17] Kym: So a few years ago I, I did this kind of this presentation to mainstream conference, Rochester, New York. And one of the things, because, you know, I, I knew what I thought I knew, but I said, I want you, so I did one of those, you know, they can type into their phones and it comes up on a screen what they're saying.
[00:37:35] And so one of the questions was why do you as teachers of the deaf, why do you need education on. And I was kind of, it was just so nice to hear there and I still have it. You know, I, I don't know the most current technology to support the student as well as the interpreter with hearing aids and cochlear implants to troubleshooting.
[00:37:54] As a teacher, I spend my time researching best practices and teaching. I don't have the time to learn all the tech as well on they're the experts, the audiologists are the experts. And so it was really kind of, I, whenever I need, I feel like a little down, I go back to this list because it's important to say, you know, they don't, they don't want to do teaching job.
[00:38:13] That's what they want. They just don't know how to, to navigate their administrator to say, this is not my job as well. I'm not everything with deaf and hard of hearing and SLPs. My, no, even less about deaf and hard of hearing, like I said, they have one class. So we need to provide that, you know, we're here to kind of give you the terminology so that you can kind of move forward and, and maybe get educational audiologist in your district, either hired by your district, a consult model.
[00:38:41] You know, at someone at, at at least to make sure that the clinical audiologist is part of the team.
[00:38:48] Carrie: No, this is a wonderful information, and I hope that our listener to this today. We'll be able to use our, these incredible resources and your webinar in order to create that ripple effect. If they currently don't have an educational audiologist, how, how do they access one or get one in one shape or form, if I listeners would like to get in touch with you, how would they do that?
[00:39:13] Kym: So I'm very active on Twitter at K Y M P Meyer. And so that's one way to get in touch with me. I have a website, it's with some still building it, but it's kymmeyer.com and you know, and what we'll do is I'll put in the show notes, my email address, certainly if anybody wants to contact you.
[00:39:33] And I
[00:39:33] Carrie: can also put your Twitter handle and your website address in the show notes too, so that our listeners can get a hold of you that way. Well, Kym, I just want to say thank you so much for being a guest on the empowEAR Audiology podcast. That was such a positive, I guess, empowering conversation about educational audiologists and how we can help our students who are out there in the schools who had deaf and hard of hearing to really get all of the services that they need.
[00:40:01] So thank you for being a part of this.
[00:40:02] Kym: Thank you so much for this opportunity. It was wonderful. It was great talking to you and seeing you again.
[00:40:08] Carrie: All right. Thank you listeners for listening and tuning it.
[00:40:12] Announcer: This has been a production of the 3C Digital Media Network.

Episode 34: empowEAR Audiology - Dr. Derek Houston 

 [00:00:00] Announcer: Welcome to episode 34 of empowEAR Audiology with Dr. Carrie Spangler.
[00:00:17] Carrie: Welcome to the empowEAR Audiology podcast, which is part of the 3C Digital Media Network. My name is Dr. Carrie Spangler. And I am your host. I am a passionate audiologist with a lifelong journey of living with hearing challenges in this vibrant hearing world. This podcast is for professionals, parents, individuals, with your own challenges and those who want to be inspired.
[00:00:45] Thank you for listening, and I hope you will subscribe, invite others to listen and leave me a positive review. I also wanted to invite all of you to visit and engage in the conversation on the empowEAR Audiology Facebook group. Transcripts for each episode can be found at www dot three, the number three, C digital media network.com under the empowEAR podcast tab.
[00:01:19] Now let's get started with today's episode. Again, welcome to the empowerEAR podcast. I am so excited to have a friend and colleague with me today, Dr. Derek Houston. And I'm just going to share a little bit about Dr. Derek Houston. He joined the department of otolaryngology, had a neck surgery at the.
[00:01:41] Ohio State university college of medicine in July, 2013. He received his doctorate in psychology from John Hopkins university in 2000. his graduate training research focused on how normal hearing, typically developing infant segment words in fluent speech and recognize words across different talkers. After graduating, he moved to Indiana university school of medicine and constructed the world's first laboratory to investigate the speech perception and language skills of deaf infants who received cochlear implants.
[00:02:19] Since then his work has investigated the effects of early auditory, deprivation and subsequent cochlear implantation on speech discrimination, attention to speech, sensitivity, to language, specific properties of speech, word learning, and general cognitive skills in deaf infants and toddlers. His research in Columbus, Ohio represents a collaborative effort between OSU and nationwide children's hospital.
[00:02:51] His work is currently funded by the national Institute on deafness and other communication disorders. Dr. Houston is currently director of the Buckeye center for hearing and development, whose mission is to make discoveries that will empower care givers of children who are deaf. And hard of hearing with knowledge that will help them foster.
[00:03:15] The children's development in alignment with the goals and culture. Welcome Dr. Houston to the empowEAR podcast. I'm so excited to have you today.
[00:03:28] Derek: Well, I am very excited to be here, Dr. Spangler. It's I really love your podcast. You know, this format for, you know, having people come on and talk about their personal journeys.
[00:03:46] With hearing loss, I think is so important. I mean, each person is different. Each person has different experience. So I think that we just learned so much from, you know, I've learned so much from you and I think, you know, each of each of your guests and their own journeys we just learned so much from, so I'm really happy that, you know, you're not, I, I will probably be like one of your less interesting guests, cause I don't have that personal jouirney hearing loss, but I nonetheless very much appreciate you.
[00:04:17] You know, inviting me on here.
[00:04:19] Carrie: Well, thank you for being here. And I know this is going to be a great conversation cause you have a lot to offer and I love being able to have guests who have personal journeys, but also have a lot of professional and research background to help empower those who on.
[00:04:37] This journey, regardless of where they're at, but before we get started, I thought I would just kind of take a step back and figure out when did we actually meet? I feel like we met at
[00:04:51] Derek: yeah, yeah, yeah. That's that's it at the, yeah. So when I joined shortly after moving to Columbus and joining Ohio State I was invited to serve on.
[00:05:03] That committee for the state's committee advisory committee for universal newborn hearing screening. Yeah, and I, the first meeting I, you know, came early. I didn't, you know, because I didn't know where to go, so I want to make sure I was there on time and I came early. And you were there, you were there with somebody else?
[00:05:20] I don't, I don't remember who, but anyway, I just remember, you know, that. You know, you being you and the friendly person and welcoming person, you, you are, you were like, Hey, who are you? It's like, oh, I'm new here. I'm Derek.
[00:05:35] Carrie: Nice to meet you. I probably said it just like that.
[00:05:39] Derek: Yeah. Yeah. And then, and then and then, you know, shortly after that, or maybe within the next year, we had some changes to, to some of the. Administration of the EHDI system in Ohio that led to, you know, a group of people, you know, getting together and just, you know, kind of discussing the implications.
[00:06:03] And then that led to like, You know, projects that has been one of the favorite projects of mine that I've ever been involved with with, you know, with you and Todd Houston and no relation Maria Sentelik and Wendy Steurwald and then, and Jessa Reed. My post-doc at the time got funding through the Oberkotter foundation to do kind of a survey of the state on families on families' journeys with hearing loss in the, in the state of Ohio and, and kind of like what, what kinds of you know, challenges they face, you know, it was, you know, it was a broad look at what their experiences were.
[00:06:45] It wasn't focused just on like, you know, the state EHDI system per se. Like, you know, what, what are some things that are challenges where some things that, you know, they really enjoy enjoy. And, you know, I think we learned a lot from that. And that's, you know, kind of, you know, kept you know, several.
[00:07:05] Or I guess it's led to several collaborations of of different kinds, but that was, that was a really fun project that we, you know, you and I were both on this steering committee together and, and then remembered Cheryl. Cheryl Johnson was our facilitator that we were able to, to bring on and and and then a ton of people of different.
[00:07:27] You know, perspectives throughout the state different viewpoints from different areas of the state, you know, came together to, you know, develop focus groups, questions, and surveys. You know, we had of course audiologists, speech, language pathologists, but also teachers the deaf parents people in the state agencies early intervention providers.
[00:07:50] And indeed even, even a grandparent, right. Who were, who were all involved in this project. So that, that was a lot of fun. And that was, yeah.
[00:07:59] Carrie: Yeah, it was. And I think what we gleaned from that we can still use moving forward as we work on other collaborative projects to help our state and hopefully others too, who are on this journey.
[00:08:15] Derek: Yeah. Yeah, absolutely. I think the key lesson for me was really, you know, listening to families and, and other professionals. And really, we have a lot that We can learn from each other as in terms of like what's really important for families on, on their journey and how we can, you know how we can best support them.
[00:08:39] Carrie: Yes. So kind of taking another step back. I always like to ask my guests how they actually got into the field of working with children who are deaf and hard of hearing. So how did you get into this?
[00:08:56] Derek: All right. So I knew you're going to ask this cause you, you always do. All right. So I, so go back to 1999.
[00:09:04] All right. Early in 1999, I'm a graduate student in psychology studying infant speech perception. So just. Perception with typically developing, typically hearing infants in, in Peter Jusics lab in Baltimore. And I'm, I'm sitting there in the lab. I'm analyzing data for my dissertation project, which was about infants ability to recognize words across different talkers.
[00:09:32] Okay. and Peter comes in to the room I was in. And you know, it doesn't say hello or anything. He just says, wants to know why you haven't. To be a postdoc with him yet. Okay. And so he's referring to, to David Pisoni and David , you know, is, and, and, and was, you know, even, you know, 20 plus years ago, a huge, a world renowned figure and in speech perception.
[00:10:01] So I'm just like, Thoughts are racing through my head. Right. I'm thinking, okay, how does David Pisoni even know who I am? Okay. Yeah, we've met once because he happens to be, you know, a friend of, of my advisors. You know, but like he has lots of colleagues and friends and they all have lots of students.
[00:10:20] Second, I didn't know that he had a postdoc position available. Why does, like, he think I should apply for it? Why, why is he wondering why. I haven’t already applied for it. So as I'm just like, you know, thinking all these thoughts, just kind of staring at Peter, you know, with a blank stare he goes, well, just go ahead and apply.
[00:10:41] It'll be a good experience for you. And you know, it'll appease PIsoni and, you know and, and anyone who knows David Pisoni will laugh at. Hearing that, you know, it'll a piece presented, cause they'll they'll know exactly what that means. And, and, and, and it's actually a very positive thing. It's just that the, you know, he's, he's very intense person.
[00:11:01] And, and, and if he has, if he has an idea of like that, something should happen, you kind of won't let up on it until it happens. So, so yeah, so I, I go, he, so he was at Indiana university and he was you know, he's in the psychology department, he's also a psychologist. And but collaborating with the cochlear implant program up in Indianapolis.
[00:11:23] And so I go out to Indianapolis to, to interview you know, and I, and ahead of time, I, I, you know, I think, well, I had heard that. David Pisoni, had started collaborating in this new area of cochlear implants. I didn't know what a cochlear implant even was, you know, at, at that time. And you know, You know, he, he sends me, so I get the mail, like this pile, like it's like, it's like, like four inches thick of, of papers right ahead of my interview to read.
[00:12:01] And so I started reading them. Oh, actually, this topic's really interesting. So, you know, maybe, maybe this could be really interesting and then, and then I go there and I just, you know, I just fall in love with the people, like, you know, immediately just with the work that they're doing and the, and the environment you know, there was Karen Kirk was there Maria Skriski of course, Richard Miyamoto.
[00:12:24] You know, the, the, the chair of the department and cochlear implant surgeon, Steve Chen. Marsha Hey McCutchen was there at the time. And the, we had our cochlear implant, audiologists, Wendy Myers and Kelly Laura Moore and speech language pathologists, Liz yang, Kara Kaiser, and Shelley Goldar and you know, a bunch of, a bunch of other people.
[00:12:45] It was just, you know, as and then all the people who can. You know, through there during the 15 years I was there just like incredible you know, a group of people. So, you know, this was yeah, I just thought, wow, this is like a really interesting opportunity to work in an area that you know, where.
[00:13:08] You know, it's an opportunity to understand neuro-plasticity sensitive periods of language development to understand, you know, add up how infants might adapt to this new signal. So it was really, you know, kind of just like in an intellectual interest to begin with really, to, you know, be honest and and, and then.
[00:13:32] You know, but I did, you know, actually my first interest in this is, you know, a whole other story was, was in aphasia actually. And then and so it was like, okay, well, you know, now I'm finishing my PhD in this, you know, sort of basic science area. It would be, you know, really interesting. And, and, you know, I think that it be fulfilling to work in an area that, you know, might have more direct you know, impact in the lives of people who, you know, have challenges.
[00:13:59] With communication. So that was, that was really you know, appealing to, so yeah, so that's, that's where it started and, you know, and, and since then, You know, it really just has, has been inspiring, you know, how much I've, I've learned from and, and, you know, really made it, you know, it's something I'm, I'm, I, I'm really more and more focused on, you know, wanting to understand what will, you know, help families on their journey with with hearing loss.
[00:14:31] Carrie: Yeah. I love hearing how people get into this little niche of a profession. And I love how you bring that psychology perspective to our field be out too. Cause we don't always, there's not enough of you to bring that kind of lens to our field. But kind of taking a step back as far as language and. You know, your whole focus is really been on that early editorial experience and language development from that whole child perspective.
[00:15:05] Can you just take a step back and kind of look at it from a more global perspective of how language as a system, how we communicate with each other, whether it's, you know, through a spoken language or a sign language. How does having a direct or indirect exposure facilitate growth? For communication?
[00:15:29] Derek: Yeah, a director or indirect exposure to, to language. Well, really language needs to be direct. I mean, you know, we. Yeah, I don't know how big picture I want to go, but but I mean, let's just, you know, go back and, and, you know, think of us, you know, in terms of like being human beings. Right. And why do we even have language?
[00:15:56] And we have language because we are highly social animals. I mean, it, it, we probably evolved language. Because of a need for a social interaction and understanding each other's intentions so that we could cooperate better for survival. Right? So So language didn't evolve to be, you know, an intellectual exercise to learn it, it, it evolved in order to help us interact better with the, with each other and more effectively with each other.
[00:16:34] So and, and now we have a lot of research, a lot of evidence showing that that infants and children really don't learn much from indirect Exposure to language. They don't learn much from, from watching people talk on TV and or from, from overheard speech. They, they really, they really need that social interaction to to connect with language and to makes sense of it.
[00:17:03] And you know, it doesn't matter if it's, if it's spoken or sign language other, you know, any more than it matters. If it's, if it's English or Spanish humans have evolved to be very good at decoding linguistic systems when they are motivated to do so by, by social interaction.
[00:17:25] Carrie: And basically the key is having that direct language
[00:17:30] Like immersive language, no matter what it is.
[00:17:33] Derek: Yes. Having an immersive and having it connected to social interaction. Right. So like there's a lot of You know, there's a lot of emphasis on, on language input. And you know, and most people do also emphasize the interaction part of it, but that, you know, I think we could do more to, you know, continue to emphasize that too.
[00:17:57] So, you know it's, it's not just about like how much. You know, you talk to your child, it's about turn-taking with your child, engaging them in, in social interaction and, and, and having them integrate language as part of that social interaction. And of course, social interaction can be just like, you know, smiling at each other.
[00:18:19] That's that social interaction. But then, you know, incorporating language into that is, is really what is going to hook language into the child's brain.
[00:18:31] Carrie: So knowing what we know about language as a whole, when your new research, you focus a lot on children who are deaf and hard of hearing, and in particular, those who receive cochlear implants.
[00:18:44] So how does that part of it impact language.
[00:18:52] Derek: Yeah, well, the you know, a child with a cochlear implant, you know, so we're talking about children with, you know, typically severe to profound hearing loss. So they've had very little to no access to sound before they get a cochlear implant. Right. And you know, during that time, You know, the, the brain doesn't wait for, you know, all these experiences to happen, to develop it's, it's going the brain develops based on the input, that and experiences that it is getting no, no matter what it's getting and, and you know what it's not getting.
[00:19:29] So, you know, the brain is highly adaptive and, you know, we, we, you know, and this is a good thing, or this is like, you know, this gives us neurodiversity, you know, No two brains are, are alike. And, and, and then a, you know, then when a child gets a cochlear implant, then there, you know, is you know, then adaptation to a new signal is is needed.
[00:19:53] And, you know, I think that, you know, what we're seeing is that what you know, so, so I guess what's different for these infants and children is that, you know, maybe attention to sound and to speech isn't as automatic. Right. It's maybe more effortful. And that's because they've, they've been.
[00:20:17] You know, plugging along, you know, fine, you know what, you know, without sound or, you know, or that that's the experience that they know. So now they have this new signal that, you know, they, they, you know, have to learn to make sense of for, to, for it, to be meaningful for them. So, you know, so then, so then that's where, you know, language development.
[00:20:42] Is more of a challenge. I think you know, the, the signal itself is always going to be, you know, not as you know rich or detailed as it is for typically hearing children, but there, there's also this aspect that what's, what's new. Is, you know, integrating the sounds with what they're experiencing in the world.
[00:21:06] So that's been that, that for me has been a real learning journey because, you know, I came into this field, as I just said, as an, as an infant. Speech Perception person. So I just was really, you know, one of the things that my colleagues and I say is, you know, the ears connected to the brain. We, you know, remind ourselves of that.
[00:21:25] And so developing language for a child with cochlear implant You know, giving them optimal access to fine grained, acoustic phonetic information is important, but that's not the only challenge. The it's also another challenge is integrating what they hear with, with their other experiences in the world because they've developed.
[00:21:49] Up until getting a cochlear implant there, their brain has developed without the auditory input. So it's really something new that they have to learn to, to integrate in with everything else.
[00:22:00] Carrie: And I think your research you've been able to really propose a Conceptual framework to dig deeper into this topic, like using your knowledge of, children of a typical hearing, as well as those who are deaf and hard of hearing to a, an idea called TAAC.
[00:22:19] And I'm going to let you explain and dig deeper into this idea, but taking a total language input directed to children is moderated by what is accessible, attended, and coordinated with the child. So I guess maybe picking this apart a little. What would you describe as accessible and how does that impact children with cochlear implants?
[00:22:44] When it comes to spoken language acquisition?
[00:22:48] Derek: Yeah. So actually, can I, can I say something about like this conceptual model? Cause like, like I feel almost uncomfortable, like, like saying that it proposed a conceptual model. So I feel like I almost have to like justify this. And so this came about by, I was, I was invited to submit a manuscript.
[00:23:11] To a journal. I won't name the journal because it's, it's only like kind of sort sorta provisionally accepted right now. So maybe these last revisions, they'll say, nevermind. And this'll be the last you ever hear of this conceptual framework. But you know, they want me to be kind of summarize, you know, some of, some of the work that my colleagues and I do.
[00:23:31] And and so I did that and then, you know, the reviewers, like, ah, you know, this. Nice summary, but can you kind of put it together in like a little bit more of like a conceptual framework? So they, they said, you know, can you put together a conceptual framework? So, so I did. So I said, okay, you know, I'll, I'll, I'll, you know, try to try to do then actually it's been helpful for me.
[00:23:52] In terms of just like, I don't think, you know, it's nothing. You know, earth shattering or anything. But kind of just like helping me and maybe it'll help others, you know, just to sort of think about things. And part of what motivated it also is that, you know, there are. With typically developing children.
[00:24:17] There's a lot of evidence that, that there's a pretty strong relationship between amount of language input the children receive in their language development with deaf and hard of hearing children, including children with cochlear implants, the findings are pretty mixed. There's actually like not very good evidence for that relationship.
[00:24:37] And, and, you know, that's like really puzzling, right? Cause you, you. You know, in some ways like it should be even more important. Because you know, that, that, you know, they're, you know, being children at risk for difficulties with language development, you know, having, you know, a lot of input is, is is going to be important.
[00:24:57] So this is kind of an attempt, you know, for me too, You know, try to kind of unpack and think about, you know, why so far we're not seeing a lot of evidence for this relationship. And, and so that's, that's where, so, you know, each of these things accessible, attended and coordinated, these are, these are all things that I think are more variable for children with cochlear implants and therefore you know, kind of complicate
[00:25:29] The relationship between language input and language, language outcomes. So I just, I just wanted to sort of give a little bit of a framework for talking about this conceptual framework. If we're going to go dig into it. So we're on the first part, right? The accessible. What does that mean for language development?
[00:25:53] Yeah. So for kids who Cochlear implants. So of course, you know language input, isn't going to do a child any good. If, if they can't hear it, if it's not accessible. So this is, this is really this first level. And, you know, for a child with cochlear implant, it's, it's, it's not accessible if they're, if their cochlear implants not on, right.
[00:26:18] If they're not wearing it. Right. And we know that children who receive cochlear implants are not always wearing their cochlear implant. Right. So that that's, that's one factor. And you know, for children are typically hearing, you know, their ears are always on. So, so that particular variable is, is or.
[00:26:42] Factors less variable for typically hearing children than it is for children with cochlear implants. Also audibility is more variable for kids who have cochlear implants and also sensitivity to environmental noise, or I guess say, you know how the degree to which environmental noise will will, will sort of block access to sound is, you know, all these things are more variable for, for kids with cochlear implants and than they are for kids with a normal hearing.
[00:27:14] So. That is the first step at which the relationship between language input and language outcomes, you know becomes kind of complicated to look at for kids with cochlear implants,
[00:27:29] Carrie: but taking an unpacking it that way helps families or, you know, other professionals, working with the children to really think about like amount of time and a good mapping.
[00:27:42] And you know, is the TV on, in the background inthe house and, and all of those variables that maybe you don't think about with typical hearing children because they can filter out that background noise or they don't, you know, it doesn't impact them as much, but having that accessibility for children with cochlear implants and paying attention to it is going to be important.
[00:28:07] Derek: Yeah. Yeah, absolutely. Yeah. And I think that this is what, you know, people who work with these families, you know, emphasize a lot. Right. You know, clinicians emphasize this stuff. So,
[00:28:19] Carrie: so then the next part is that concept of attended language input. So what does that mean?
[00:28:26] Derek: So that, that means that, you know, we have to remember that just because a child can hear something doesn't mean they're, they're attending to it.
[00:28:37] And attention is, is, is fundamental for learning. And we know that. Attention to speech is different for children with cochlear implants than it, than it is for children with normal hearing. So, so the, this is, you know, so we have several studies showing this that it's not as, it's not as automatic.
[00:29:03] So even if something is presented above threshold children with cochlear implants, we have found do not attend to all types of speech as much as, as normal hearing children. And more specifically you know, you have this like type of speech that's referred to as infant directed speech right or motherese is like, how, how we talk to how we talk to infants.
[00:29:28] In, in one of our studies, we found that at. Older ages then. Okay. So let me back up. So for typically developing children they show an attentional preference for infant directed speech over adult directed speech, but it's, it starts to fade away. You know, at older ages say, you know, 18 months, two years what we found was that fortunately a cochlear implants, even at older ages, they show that preference.
[00:30:02] And actually they, they, in our experiment, they showed no preference for adult directed speech compared to hearing nothing. And, and so it, it really suggests. You know, there are that it's really important. Kind of like what the speech sounds. I, two children and cochlear implants. Now I'm saying that in a way that's being, you know, maybe I'm generalizing too much, like really what our findings show is that there's more variability in, in attention.
[00:30:38] To speech and in children and cochlear implants. So some kids, cochlear implants are attending to speech just like chills as normal hearing. But that others aren't. And so again, this is this like increased variability on this factor is, you know, complicating the relationship between amount of language input and, and language development.
[00:30:59] 'cause, you know, two parents might be providing, you know, two families might be providing their child with just as much, you know, the same amount of accessible speech, but for one child, just the way their attentional system has developed, they might be attending to more of it than, than another child. And that, and that will probably lead to you know, different language outcomes.
[00:31:25] So I think like really paying attention to what the child is actually attending to is important
[00:31:34] Carrie: because if they're interested in it, then they're going to be more likely to gain that language input Then, if you're talking about something that they aren't interested in attending to. Yeah. So, and then going back to the motheresewhat you talked about and, you know, typical developing a typical hearing children, you said about 18 to 20 months, that kind of.
[00:31:58] Don't attend to it as much. Do you might
[00:32:01] Derek: be misremembering the exact ages. So
[00:32:07] it's some something around that. Yeah.
[00:32:09] Carrie: Do you think that because children who are severe to profound and typically don't get their cochlear implant till about a year of age? Need to have that motherese for a longer period of time, because they've missed both in utero hearing. If they were born with a hearing last and that possibly first year of hearing until they're a candidate to get a cochlear implant, they need to almost their brain needs to hear that .
[00:32:42] In order to have that stepping stone for good language
[00:32:47] Derek: access. I think that's an excellent hypothesis, Dr. Spangler. And we, we are right now analyzing data for a study that is looking at novel word learning. I mean in children with cochlear implants under conditions of infant directed and adult directed speech.
[00:33:06] And so this is, I think, getting this will address your hypothesis, I think to some degree, because what we will find out is if, because we, in, in a previous study with typically hearing children, we found that not only do infants prefer infant directed speech over adult directed speech, but actually helps them learn words better.
[00:33:29] But this, this benefit of infant directed speech of motherese goes away for this at, at, you know, around again around two years of age So we, what we'll find out in this study is if the benefit of infant directed speech, actually, if there is any benefit at all of infant directed speech for kids who have cochlear implants, and then if there is, does this, does this benefit persist, you know, later into development than, than what we found with typically hearing children?
[00:34:05] Carrie: Well, you have to let me know what the outcome is
[00:34:09] Derek: I will. I definitely
[00:34:11] Carrie: will. And then you also mentioned coordinated language in print. Can you share more about what that means? Yeah,
[00:34:19] Derek: that's about joint attention, right? So, so we, there's a huge literature on joint attention and, and typically developing children and, and, and other populations and particularly for developing a vocabulary for learning words it's important that, you know, parents and children are, you know, sort of potentially on the same page, right.
[00:34:40] That the child knows what the parent is attending to. The parent knows that the child is attending to it's even better if they both know, you know, that the other knows what, what they're attending to. And, and then that helps children connect what the parent is saying to what they're experiencing. So like, you know, if, if, if.
[00:35:04] You know, if a child is playing with a toy and they hear, you know, a. The parents say Blick. Okay. They, they may or may not attach that word to that toy. And part of what will determine that is if the child is attending to it, but also if the parents is attending to it and if the child knows they're attending to it if, if the child is playing with that toy, you know, say called a Blick.
[00:35:32] But then like, you know the, the parent talks about the Modi. You know, a different toy, then, you know, that's labeling something else that the child is not attending to. And you know, that, that as you can imagine, that might not encourage or facilitate learning of that particular item. So.
[00:35:56] You know, so it's, so basically what we mean by coordinated is the degree to which the parents language is coordinated with what the child is attending to. That's one sort of meaning of, of coordinated. A second. One is the degree to which the language is coordinated with the child's development.
[00:36:19] Because. You know, if, if if a you know, if a child is at a very early stage of language development and they're, you know, processing of language is maybe you know, not, not as efficient than. You know, they, they might need like this motherese or infant directed speech. Whereas like, if, if the parent isn't, you know, it's just talking, you know, maybe like really quickly, like they would with an adult, then that would be sort of like, That's what I mean by sort of not being coordinated with the child's development.
[00:36:58] Right. And I think that this is, you know, this is a, can be a challenge for parents w for children, the cochlear implants, because you, the, the way parents speak with their children changes. With the child's development but a child that gets a cochlear implant, you know, their, their sort of cognitive age, their developmental age is, is different from their, their hearing age.
[00:37:29] You know, we sort of have no idea, like at this point you know, like what would, you know, should, should a parent talk with a kid who is two years old, but had a cochlear implant for six months? Like the child is a six month old or should, should the parent be talking to the child and, you know, Yeah, I hope nobody is like looking for answers to that question.
[00:37:57] Cause we, we don't have answers to that question. We do have evidence that, that some parents do sort of use at least intonational patterns that are. More aligned with the child's hearing age when they have a cochlear implant than that, than it is with their, with their chronological age that that's worked by my colleague, Tonya Bergeson.
[00:38:21] But I, I guess we, we don't really know at this point, if that's like beneficial or not, or detrimental or, or whatever, or anything
[00:38:29] Carrie: beyond, well, I know we have like a lot of unanswered questions. Yeah, it's just the nature of the field and not knowing. And like you said, there's so many variables too. For children who are deaf and hard of hearing and get cochlear implants.
[00:38:50] However, I think you, like you said, you've done so much research and we do know, we do know a lot too at the same time. And I think this framework and just kind of putting it into these. This way with accessible and attended and coordinated language input is a, you can grab onto it, like if something that you could apply, but taking that framework that you kind of put together or piece together.
[00:39:21] What can we share with parents or professionals who are working with these children to positively facilitate spoken language acquisition for children who are deaf and hard of hearing and who have cochlear implants? Do you have like a top five or something to get our listeners started with?
[00:39:43] Derek: Well I, I think really I can.
[00:39:47] Really just emphasize probably. You know, some of the things that probably they're there, you know, speech-language pathologists or audiologists are probably already telling them. But let me just emphasize you know, the importance of, of interactions of, of back and forth communication. Again, it's not just about like how much.
[00:40:10 parent is talking with their child, but the back and forth I think, and, and this involves in terms of coordinating of attention, this, this might be you know, thinking, you know, probably doing more following of attention. And what is your child interested in and talking about that rather than doing, you know, more, more directing of the child's attention, I think has, has been found to be beneficial.
[00:40:40] I think Okay. Now we all, I am guilty as guilty of this as anybody else, but I think we all should be paying attention to how much time we're spending on our smartphones on when we have children. There, there are actually studies out now showing that this is like we're w we all, all of us I'm, I'm included you know, we're, we are When we're on our smartphones, we're not engaging with our children.
[00:41:06] And, and, and we're, you know, we're losing opportunities to, to communicate with them. So, you know, we all, we all, you know, nowadays need to be on our smartphone some sometimes, but, you know, I think just like we should be cognizant of how much time we're spending on it. Also, you know, environmental noise.
[00:41:27] I mean, I think that. You know those of us with typical hearing, you know, I think that it's hard for us to appreciate the challenges of dealing with noise. So, you know, I think it like really, you know, we have. You know, sort of exert some mental effort to like keep, you know, remember that this is like an important thing to be paying attention to so that you know, so that our children with hearing loss can you know access and, and attend to what is being said more, more easily by, you know, trying to reduce the amount of Of environmental noise.
[00:42:08] I think, and this is something I've, I've, I've kind of learned or, you know, thought about thanks to some talks that I've, I've heard recently. But I do think is a really important thing to keep in mind is, is. This idea of fostering joy in, in communicating with your child you know, having joy in it is very motivating.
[00:42:34] And you know, so, so it's important. Like it's, it's really actually important not to think of this as always just, just. Right. That, that it is, is going to, to, to, to let yourself just, you know, feel the joy of the journey of interacting, you know, with your child is, is not you know, is, is. It is not you know, sort of being lax in your, in what you might think is your duties as a parent, you know, to, you know, help with language development.
[00:43:10] It is actually helping language development by, by enjoying it because. Infants and children are very sensitive. I mean, we have evolved to be very sensitive to, to each other's emotions and social interactions. So to, to feel joy yourself in the interactions we'll, we'll help children. Enjoy the interactions, you know, if I enjoy the interactions also in that and that, that, okay.
[00:43:39] I don't have any research really to, to, to point, to, to, to prove that. But I feel strongly that that's, that's the case. And, and there is some research that, that, you know, In, in general, fostering joy is, is helpful for motivation and in providing language input. So so to me that that's, that's, that's enough evidence to suggest that it, it is going to be important.
[00:44:04] And we do know that infants are very sensitive to, to our emotions.
[00:44:09] Carrie: No, I love that. That's a great way to sum everything up because there is a lot of work that goes behind the scenes and families have to know about and learn about in this whole journey, but to think about it as fostering joy throughout the journey can make that interaction more meaningful along the way.
[00:44:32] Derek: Yeah.
[00:44:34] Carrie: So just to kind of sum up today, where do you see this research headed? What, what needs to still be done?
[00:44:45] Derek: Well there there's a ton that needs to still be done. But I think the future, you know, for me, the future of research is, is, is that research, you know, shouldn't be, you know, done just by. You know, people with PhDs or, you know, other letters behind their names that that research should be science should be a community, you know, activity I've, I've learned so much from, from providers and parents that, you know, I really think it's important to to, you know, involve.
[00:45:22] You know, the people that we, that we want to help, you know, I think really need to be a part of like developing the research questions because you know, if we want the research to, you know, impact people we need to understand from them, like what, what are their challenges and what are their perspectives?
[00:45:46] What are their experiences? So I'm, I'm really excited about that. Carrie Davenport, who's a postdoc working with me is leading an effort to form, but she's calling a family research council to the, the idea of the project. And we're hoping to get some funding for it. Some support for it as is to.
[00:46:08] Is to make efforts toward bringing parents and, and and, and some providers like more into a little bit more into the research world. So that then, you know, we, as researchers have a little more common ground. With families to talk about research and to develop research questions. And, and that's, that's what I'm excited to do.
[00:46:35] I'm, I'm excited to do, you know, research that will lead to discoveries that will, you know, provide knowledge to to families so that they can foster a healthy language environment for their children.
[00:46:52] Carrie: Yeah, that's a great idea. Cause like you said, those are in the trenches. I understand the challenges of everyday life.
[00:47:00] And, but then to coordinate that with research can really solve some problems, you know, more discoveries along the way.
[00:47:12] Derek: I hope so. I hope so. Yeah.
[00:47:15] Carrie: So if, is there anything that I didn't ask you that you wish I would have.
[00:47:21] Derek: I can't think of anything. That's okay. We've covered. We've covered. We've covered a lot.
[00:47:26] Yeah.
[00:47:29] Carrie: If people wanted to get a hold of you, how should they do that?
[00:47:34] Derek: So I'm in the department of otolaryngology at Ohio State University. We have something that we call the Buckeye center for hearing and development that I'm a part of. And you know, so they could find that through the department's website, Okay.
[00:47:50] I mean, I could, I could read off the URL. Yeah.
[00:47:54] Carrie: I’ll link it in the show notes. And if people wanted to visit the webpage, they can do that. Okay. Sound good. Well, I want to thank you for being a guest today on the empowEAR audiology podcast. I think it was a great conversation and thank you for being a part of it.
[00:48:12] Derek: Thank you so much for having me, Carrie. It's been a real pleasure.
[00:48:16] Carrie: Yes. So listeners, I just want to thank you for engaging in the conversation and be sure to follow and empowEAR audilogy and our Facebook page. And if you liked this podcast, please share it with others so that they can listen in as well. And post a positive review.
[00:48:35] Thank you for listening.

Episode 33: empowEAR Audiology - Dr. Donald Goldberg 

Announcer: Welcome to episode 33 of empowEAR Audiology with Dr. Carrie Spangler.
Carrie: Welcome to the empowEAR Audiology Podcast, which is part of the 3C Digital Media Network. My name is Dr. Carrie Spangler, and I am your host. I am a passionate audiologist with a lifelong journey of living with hearing challenges in this vibrant hearing world. This podcast is for professionals, parents, individuals, with your own challenges and those who want to be inspired.
Thank you for listening, and I hope you will subscribe, invite others to listen and leave me a positive review. I also wanted to invite all of you to visit and engage in the conversation on the empowEAR Audiology Facebook group. Transcripts for each episode can be found at www dot three, the number three, C digital media network dot com (www.3cdigitalmedianetwork.com) under the empowEAR podcast tab.
Now let's get started with today's episode.
Carrie: Welcome to the empowEAR Audiology podcast. I am so excited to introduce our guest today, Dr. Donald Goldberg, and I have him with me today, and I know we are going to have an interesting, vibrant conversation. Before I have him come live on the air I'm just going to tell you a little bit about him.
Dr. Goldberg is a full professor and the inaugural chair of the Department of Communication, Sciences, and Disorders at the College of Wooster. He is a PhD. He's an SLP. He's an audiologist. And he is also an ASL certified auditory verbal therapist. He is a part time member of the professional staff for the section of Audiology and Hearing Implant Program at the Cleveland Clinic’s Head and Neck Institute.
Goldberg is also a visiting scholar at the university of Newcastle's Royal Institute for Deaf and Blind Children and North Rocks, Sydney, Australia. And that was from December, 2014 through February, 2015. Dr Goldberg earned his PhD at the University of Florida in 1985. He earned his bachelor's degree and speech language pathology from the university of Florida and his bachelor degree in biology education from Lafayette College in Easton, Pennsylvania.
He has been a university college professor and the co-director of one of the largest cochlear implant centers in the United States. And as the former executive director of the Helen BB Speech and Hearing Center in Easton, Pennsylvania. Dr. Goldberg has co authored the book Educational Audiology for the Limited Hearing Infant and Preschooler, an Auditory Verbal Program.
And he has written numerous books, chapters, published a range of research-based and clinical publications, and has been an invited speaker throughout the United States and Canada, and to 16 other countries. He was awarded the honors of the AG Bell Association of the Deaf and Hard of Hearing in 2018 and became a fellow of the American Speech Language Hearing Association in 2020 and will be honored actually coming up this November at the ASHA annual convention in Washington, DC.
Dr. Goldberg's most recent clinical work has been the field testing of the soon to be published test of auditory functioning by Blue Tree Publishing. So I'm excited to introduce to all of our listeners today, Dr. Don Goldberg.
Well welcome Dr. Goldberg to the empowEAR Audiology podcast. I'm so excited to have you today.
Don: Thanks for the invitation. I'm happy to be here.
Carrie: Well, I always like to start out with how, if I know someone, how I paths have crossed, and I don't know if you ever, if you remember meeting me the first time
Don: time.
Well I know there's a Carol flexer, Denise Wray connection, and I don't know if it was something at school or social, but I can just envision you with those two wonderful friends going, oh, this is someone you need to know, Don. And my sense is they said, this is someone you should know. Okay. I think that's
Carrie: like, I think I might've been in graduate school when our introduction first occured
So I think our paths have crossed multiple times, way back and multiple times along the way. So it's, it's great to still be
Don: connected. Absolutely.
Carrie: And I also like to ask my guest is how they actually got into the field of you speech pathology and audiology. Do you have a backstory
Don: to that? Well, at the risk of people finding the real deal on Don Goldberg, I went to a little college called Lafayette college, north of Philadelphia.
I wanted to be a veterinarian. And my first semester, keeping in mind, I have a PhD and I'm a professor. My first semester of college, I got a 2.64 GPA really bad. So I knew I was never going to get into med school or vet school. So I was checking out my options and this is not a negative cause I love teachers, but I started taking education classes as a minor.
I was a biology major. I graduated, but I took an education minor. I had no money, no car. So they placed me at an elementary school, close to the college. I walked from the college to this elementary school. And in that kindergarten class was Robert. I figured out the other day, Robert is probably in his fifties now, but a six year old changed my life.
He had two body aides on a harness. He went to this little shack of a building called the Helen Beebe speech and hearing center. My first acquaintance with anyone with hearing aids was Robert. And I assumed because I volunteered for the rest of my time at the Beebe center that all deaf kids listened and talked.
That was my start in this world of. Going to college, not sure what I wanted to do. And now I tell freshmen don't get us 2.64 mathematically. It's really bad. But the real issue was I then applied to grad school and I didn't even know which one I wanted to do. And when I went to the university of Florida, they said, do you want to go and speech, or do you want to go in audiology?
And I went, what's the difference? I don't know. And they said speech pathology. Work with people and audiologists work with machines. So I picked speech, language pathology, and all along. I wanted to work with kids who were deaf. And essentially when I got back to my doctorate, I then also took audiology, but I did learn speech pathologists and audiologists work with people and some machines, but a five-year-old changed my life.
Carrie: That's amazing. So all of those little pitfalls along the way, ended up being a good move and a long and fulfilling
Don: career. And even to go to Lafayette, I had no idea. People from around the world came to Eastern Pennsylvania. Helen Beebe was described as the crazy lady on college hill because she was teaching deaf kids from the 1940s.
When hearing aids just started. That many kids had a little residual hearing that could be trained. She was the crazy lady thinking a deaf kid could listen and talk. And at the same time she was doing that Doreen Pollack was doing that in Manhattan. Before she moved to Denver, these two grands who have changed my life, we're doing the exact kind of therapy and they never even met till years later.
Carrie: Yeah, that's amazing. And you said you volunteered at the Helen Beebe center, but you also. Work there as
Don: well. Yeah. During college I volunteered and I think it was novel. That's some boy from the college, some male came to the speech and hearing clinic. And I went down to the University of Florida because Helen Beebe was a speech language pathologist.
After I got my master's degree and worked in the schools and became certified, I went back to the Beebe Center. Learned about what I didn't know they were doing. Apparently there are behavioral objectives when you work with a child, I just thought you played old maid and concentration memory. And then I got my doctorate worked for a few years and ultimately did go back to the Beebe center as their director of audiology.
And then shortly thereafter became their executive director until moving out to Ohio. When my wife got her job at the Cleveland Clinic.
Carrie: Yeah. Wow. That's amazing to have that experience there too. Cause you are able to integrate it into a lot of other things along the way, but you also wear another hat as a professor.
So can you share a little bit about influencing the future of our profession at the college of Wooster?
Don: Right. Well, my wife grew up about 20 minutes from here in Lodi, Ohio. We used to come down to Wooster for the movie. When we came home at Christmas, the only thing they had in the north end of town was a movie theater.
So I knew there was Wooster. I never knew there was a college. Sharon got the job. Dr. Sharon Sandridge got her job working with Craig Newman at the Cleveland clinic. And I kept my step son back in Easton without his mother. I had Nicholas because we got married and I had a step son and he stayed with me.
And then I went. I think Nicholas, I love being your stepfather, but you need to live with your mom. He went to Ohio and I worked for one more year while they were out in Ohio. And I went, I got to find a job and literally just fate again. An opening came about at the college of Wooster, someone who was retiring after 30 years.
And I didn't even know Wooster was a school. And I've been here for off and on. I've worked here over 20 years, but I did take a five-year break to run the cochlear implant program at the Cleveland clinic with Peter Marsh, Pete Weber, who is a cochlear implant and one of cochlear implant surgeons in the past. So it was fate that got me to Wooster.
It's a diamond in the rough. It is a fantastic. Undergraduate only program at this point in time, over 30 of my students have either earned their AuD. Or have gone on to be currently in a doctor of audiology program. So tons of AuD students have come out of this program. Stacy Lim came out of this program and anyone can learn that our weird connection to the Beebe center Wooster.
And now one of my greatest friends. So anyway, with Wooster, we have speech pathology and audiology, but many of our students don't know which to do. So even if they go into and I'm a dual, so I have to like both, but even if I go or have students going into master's in speech, language pathology, I want them to be that SLP, who isn't afraid of an audiogram, can interpret the audiogram.
Isn't afraid of technology. And as you can relate. Lots of audiologist know their hearing aids. I want all audiologists to also know about typical speech development, typical language development, and we got to work collaboratively. I know this is an interview with me, but I can't not shout out. The summit ESC is a beautiful model of this preschool program, three or four of the best educational audiologists I ever have met.
I told a family of a baby move to Hudson Ohio. You'll get Carrie as your educational audiologist. They have a baby who is just implanted yesterday. The youngest kid ever implanted at the Cleveland clinic, seven months old. There'll be eight months and four days. And they bought a house in Hudson because ESC and what you all provide is that collaboration of working with an implant team, speech, language pathologist, and someone on your team, or more than one person, who's a LSLS cert AVT ED.
We need to work collaboratively and not be in our silos. I have so much and so proud of those speech pathologists who may not work often with hearing impaired kids, ever respect for audiology and vice versa. So I guess if I was to look, reflect on Wooster, lots of stimulating thesis students, I said I would retire when I got to 300.
Well, I've done 285 thesis students. Cause everyone does a thesis. Yeah, it sucks the marrow out of my bones, but it is so reinforcing and I missed it When I spent five years, full-time at the clinic. I wanted to come back to this incredible institution and I'm, it's not easy to retire. So I'm going to do phased retirement.
Carrie: Well, that's amazing that you've had that impact on, so. The students along the way and just kind of gave him that foundation for what they're going to go to next. Right. And and I appreciate what you said about the summit ESC. And I tried there because I I'm proud of everyone there. And like you said, you know, speech pathology and audiology and teachers of the deaf need to be collaborating together.
And we all bring a different lens and perspective to the picture and that's what our kids deserve in order to be successful in whatever they want to do. Yeah. So I learned, you know, how you have the little background with Stacey Lim and knowing her from a young age and, and college and on, I feel like that's my Carol Flexer and Denise Wray.
They were knew me from a younger age and got to see me through. Cool and still have that, but I saw those two together and I was like, that is a perfect match to have the audiologists and speech pathologist working hand in hand. And that's really like what you said needed to happen in order for our kiddos have used it to do well.
Don: Right. And I think the other component is I work with so many kids at the early end. My most common, cause I have a limited caseload at the clinic I triaged and have all the babies and anyone on the CI track. And I used to say, cause obviously Carol Flexer and I have done research on graduates who are adults.
I used to refer to my three and four year olds at the clinic as graduates because they're at or above. They're hearing peers for receptive and expressive language. Their auditory skills are through the roof. Their speech intelligibility is fantastic. I, for a short period was saying, they're my graduates and they're four years old.
And the downside of that is they're never truly graduates. There's still. Preschool and kindergarten to enter. They still have to go through so much, but they're oftentimes at, or above their hearing peers. But we know from the LOCHI study in Australia, sometimes there's some plateauing at eight or nine.
And quite frankly, how does a three or four year old graduate from anything? There is a lifelong of listening and development. So if it turns out I see them every three months or every summer to do some assessment before they go on to fourth grade or fifth grade, they never really truly leave. And I like to think I can be their coach.
I have really evolved. And I think I'm still a decent clinician, but I think I was more full of myself early on. I was trained by Helen Beebe. I know how to do this now. I so respect the parents and what they do. Not that I didn't before, but they're the change agent. They go home with the kids. I have great toys and I give them cookies, but I'm just a coach.
Alexander Graham Bell on his tombstone says, teacher. He didn't say he invented the phone. He's buried in Nova Scotia and on his tombstone, he wanted to be remembered as a teacher. I too. And I'm not comparing myself to AG Bell, but it's just the idea that I hope people remember me. I hope as a gifted teacher of a lot of different constituencies, but when I'm working with those babies, I am their coach.
I'll be your coach and your clinician. And then down the road, we can be friends. I can go to Stacy Lim's wedding. I can go to AuD externs weddings, but our intervention intervention is very different, but it evolves because they did the hard lifting. I was their coach.
Carrie: Yeah, and we need good coaches along the way, because when we become adults, we still, there's still a lot of lifelong learning that goes on because your environment changes and your job and everything else changes.
So there's always going to be more learning, but to have good foundational coaches is important.
Don: And that's true of parenting as well. I have a 40 year old and three granddaughters, but our relationship is in a different scheme because of the years of in pass. But you know, when I lost my parents, my dad and mom were like 95 and 92.
I was an orphan at like, in my fifties, it's sort of like parents are forever and our parents still go through all sorts of cycles of grief. And I remember someone say, well, my kid learned to drive a car or would my kid with hearing loss, go to the prom? And now it's sort of like, I didn't know where the question came from at the time, but there are those ups and downs no matter how together we all are.
As parents of a kid with hearing loss, or just as parents, your kid went off to OU. That was dramatic. My kid, his grant, his youngest kid going to kindergarten, that was traumatic to me. And I'm sure she's doing just fine in kindergarten, but we have those cycles. And I think too often we think that our families have reached acceptance.
That cycle for all of us is a cyclical nature and we can be angry and we can think, and even acknowledge to our kids, pardon the expression. But some of our kids, you can say it must really suck to be the only kid wearing an implant or having the only one in the class with hearing difference. But most of our kids, if we crowned them well.
They are proud of what they are. And those little, little increments of some of our kids with multiple disabilities, I'm more proud of a kid putting their lips together and doing a bilabial. Then my superstars who are off to Harvard, I'm proud of everyone, but some of those kids with multiple disabilities, I probably have learned more about growth and perseverence.
And how hard families work as a team with lots of dedicated team members. Yeah.
Carrie: And kind of circling back a little bit. Can you just share a little bit about your role at the Cleveland clinic with the hearing
Don: implant team? Sure. When I started at the Cleveland clinic, I left my tenured position at the Cleveland clinic to be the co-director of their implant program.
Part of the attraction was Peter Weber, who is a great surgeon. He's now in New England. I was tired of driving from Brecksville, Ohio down to Wooster. It's an hour and at five 30 in the morning in the snow, it's not a fun drive. So I left, but I really thoroughly enjoyed build Excuse me, building the program.
We were at a point where we were doing about a hundred implants a year. We were in the, certainly the top 10 biggest and busiest cochlear implant programs in the United States. So it was very positive, but I still was a clinician. I was still seeing the kids, but I so missed Teaching college students and I actually missed those independent study thesis.
So then when the implant program moved from one family health center to the main campus, I was a little overwhelmed at how big the Cleveland clinic is and the opportunity developed that I could go back to the college of Wooster. And oftentimes what happens is when you tell someone you're leaving. But you've done such a good job.
You can't leave. So I wheeled and dealed and I made the College of Wooster agree that I could still see patients at the clinic. A lot of them are on my breaks and on Saturdays. And I asked the Cleveland clinic, would it be okay that I saw some patients, but I couldn't keep up the caseload I had. So both sides agreed and I have the perfect combination.
I see college students stimulated by their thesis activity. Some of those thesis use kids that might be patients and at the Cleveland clinic. I don't have two year olds and three-year-olds like at the Beebe center, happy to have a two year old come to therapy. I have five week old kids and the Cleveland clinic.
Has really grown with many cochlear implant surgeons and a larger group of dedicated and talented cochlear implant audiologists for programming. But I am primarily getting to your question. I primarily see all CI candidates. For a speech language and auditory communication eval. So I weigh in as a speech path audiologists type person on the CI team.
It's called the HIP program, hearing implant program. And essentially I triage. Some of the patients for ongoing therapy. So it's primarily a, a busy clinic day of lots of assessments. And typically the youngest kids become part of my every other week or once a month caseload. And then others are every two months, every three months, but I can't get away.
And the little one who had surgery yesterday at seven months, I have known him since he was five weeks old about To get his hearing aids. And one day he may be getting consultative services from the summit ESC. Cause he's going to be just fine, but still need support. They'll always need support assistive technology.
Gotta be there. Non-negotiable right,
Carrie: right. Yeah. There's we, we don't live in a very quiet world, so, and our classrooms, definitely not quiet. So there's always going to be accommodations and accessibility that we have to look at, but I, I
Don: okay. Right. And we're doing lots of studies looking at teachers and even teachers of the deaf and educational audiologists and speech people.
A lot of people really are not completely comfortable with the broad needs of the kid. The slp oftentimes is very comfortable doing artic therapy, but less comfortable with auditory. Kind of auditory skills building and oftentimes it's the auditory that will develop into wonderful language and speech skills.
The teachers today, most general ed teachers have very limited or no educational experiences coursework in working with kids with hearing impairment. 80% of our kids are mainstreamed in schools and for some teachers they've had lots. For some it's their first kid. So all of us have to be working collaboratively and essentially many people, if they were honest, they would say not quite sure what to do with this kid with hearing loss.
My favorite was what if the coil came off? And I'd go, well, you put the coil back on the magnet, you know, essentially technology scares people and essentially these kids need that team of individuals working together. So, you know, it's definitely a world of teaching the teachers and teaching the related professionals that are working with our kids
Carrie: Right. And then your point about like, you know, some have a bunch of kids or have had multiple kids and some, you know, had one, but then you have the teacher that had a kiddo 20 years ago and then has one there. I think you're looking at a different kid. Then, you know, the 20, 20 years ago because of technology, which kind of brings me to another point, cause I know you have been on multiple committees and organizations, but one being the joint committee on infant hearing and you know, that has a long, important history, like dating.
Pretty far back for early identification and intervention and follow-up, but can you just share a little bit about how you became involved with the joint committee on infant hearing and what your role is?
Don: Sure. And if anyone listening to this is going to be an ASHA. The joint committee on infant hearing is going to be in the audiology row of the ASHA convention.
And I'm definitely willing to respond to people's email. If you share that information. The joint committee is probably the greatest, one of the greatest honors I've ever had. I serve as the ag bell representative to the joint committee on infant hearing the quote permanent members are ASHA, AAA American academy of audiology.
Ag bell is one of the founding members along with CED, which is the council of education of the deaf, which includes culturally deaf representatives, which is really important. And then two medical groups. It includes rep to representatives of all groups from the American academy of otolaryngology, head and neck, sir.
Surgery. So to docs and to pediatricians from the American academy of pediatrics and the last permanent, it sounds like the United nations, then the other permanent member of JCHIare the directors of speech and hearing in all of the states. So health and welfare, it's an indifferent agencies in government, but essentially their nickname is the dips.
And I can't even tell you all the letters. Those folks, but they're the members of joint committee. So it works in a consortium of sorts. We have supportive other folks, including NCHAM and CDC and and NICD. But the working group has oftentimes been known to release committee statements, which aren't there they're advisory.
They're not law, but US and many other countries look to the JCHI statements. The kind of gold standard of how to work with the implementation of universal newborn hearing screenings, which they were instrumental about and also just the early intervention. So essentially we meet at least twice a year.
Face-to-face pre COVID. We're about to meet again at EHDI in the spring. So we get to see each other, and then we've had lots of zoom calls and team calls, but essentially it is so good to have those individuals at the table. And the most recent release was a joint statement in November, 2019. They have a 42 page statement.
A three or four page executive summary. And there've been several developments. It took many years to development, develop it because you need a lot of people to agree from kind of divergent backgrounds. We needed to make it as evidence-based as possible. But I would say. Two of the most important recommendations are people I assume are familiar with 1, 3, 6, 1 month, three months, six months, one month to have the screening done by three months of age to have follow-up diagnostics, OAE, or AABR our ABR diagnostics and six months for intervention.
For me, intervention is not slapping a hearing aid on this kid with hearing loss, but intervention, early intervention, state programs, private agencies, et cetera, for the states that are compliant and reaching 1, 3 6, which is not all 50 states. We aspirationally recommended 1, 2, 3, 1 month, two month, three month.
One month universal screening, two months follow up diagnostics to confirm the screening results and three months intervention. This is how I would like our future to go one day. So everybody in 97% are screened in a hospital unless there's some other reason. One day should be our target cause once I leave the hospital, you sometimes can't get those kids back.
Now two months is not a bad idea. There's literature from David Luterman and others. The families should probably take home and love that baby that they didn't expect was going to fail. But two months is really too many months for a lot of families who might be at least at a point to come back to the hospital for the diagnostic, the newborn diagnostic
At the Cleveland clinic, we do two newborn diagnostics to confirm hearing loss, that little boy who had his implant yesterday, he came, met four or five days and he came at 16 days and he was on his way long before two months. So let's move its downward and three more. I am so happy to have any kid who has been diagnosed with a hearing loss, even if they come without their hearing aids, yet that they can meet someone to say the sky's the limit for your baby.
With the exception of kids with multiple disabilities, I am completely comfortable to say. All of your hopes and dreams can be realized for that little baby you're starting early. You're getting technology that is transformed their audibility. They are getting into early intervention programs that teach the parents the sky's the limit.
And as you may know, that is been my, it has been a mantra. I actually have a kid named Sky. Anyway. So the sky's the limit and her big sister was one of my early patients as well. So at the same time, the 1 3,6 is 1, 2, 3 is aspirational. That's an important development. I want to make one quick comment that as much as we're aware that because of UN UNH, UNHS, Because of all the things I talked about, technology and intervention, many families are going to, going to elect or select a listening and spoken language program.
Most of our kids have two hearing parents, but I want to make it very clear. I am so proud to have been a fall, a past president of AG Bell. I am so proud to be a little. But people need to know. I actually know how to sign. I actually teach a class that's to sign or speak or sign or talk. We have to be respectful of our culturally Deaf people, culturally deaf individuals who may elect for their child.
To learn ASL and be, bibi. Bye. I just want all families to know the options exist and just like, there is no one size fits all. Not every kid will be a listener and spoken language user for a variety of reasons. And not that many people who have hearing parents get hearing parents who are fluent. To give a really strong language model in sign, but if a family elects and they deserve to have that option to elect ASL or a bibi program, I just strongly recommend that they become fluent to get the best language model in.
So in the JCIH deliberations, we're always talking about the idea of a listening and spoken language. Or a visual spatial option. So it's a very balanced statement and I think it is important to know that is foremost in our conversations. And then last thing that I'm proud of in the JCHI statement, I'm not always a big believer in a medical model of doom and gloom and pass and fail.
But the recommendation was made instead of when a kid does not pass UNHS. That we say they failed. It is no longer to be pass/refer it's to be worded, pass, or fail. There has been a reducing number, but too many of our kids are lost to follow up. And it's sometimes how they're told, oh, your kid, probably if we did this again, they'll probably pass or maybe there's fluid in their ear.
We didn't get it all out. And if you hear that, are you going to be rushing for the newborn diagnostic? But if the very first test besides PKU testing, it's the very first test a baby has his hearing and you hear the F word that they failed. You may have more likelihood following a medical model to get the children to come for.
Follow-up at an earlier date. So one of our hopes and we'll know for more longitudinal data. Is have we done a service by saying fail versus refer in my heart of hearts? I believe we did do the right thing. I was totally supportive of that. And my wife who does quite a lot of auditory electrophysiology, she'll do some kids at one year old, two year olds and sedated ABRs we go back, the kid had failed or referred universal newborn hearing screenings.
They were told to come back and then at one or two, they're not talking. And then we find out a unilateral loss or a significant loss. I wish you had come earlier, but it is what it is. We take a kid from that place and we move forward. Yeah. And
Carrie: hopefully that'll be good, but I know the pediatricians I involved with JCIH , but again, I think they're another stopping point along the line where you know that they may not be.
Stressing the importance of that. Follow-up and, but maybe it would change if they see this fail on the page rather than a refer.
Don: And they're important gatekeepers as are other physicians, some kids don't go to pediatricians, the GPs, the family practitioners, even the doulas who might be delivering a kid in Vermont in the home.
It'd be great to get them doing OAEs. For those kids who aren't born in hospitals, Vermont just happens to be the state with the largest number of in-home birth. Someone did a thesis on that at the college of Wooster. So I knew not just cows and Ben and Jerry. It's a lot of home births. Yeah.
Carrie: Yeah. So another key component.
Well thank you for your service and that committe and your step you've been on that committee for a while. Right. But
Don: he started the position statement came out in 2019. I think I came on board in 2015 when we thought it would be done in a year. So 2015 to now. And the other member of AG bell representative is Meredith Sugar, who is a mom.
She's an attorney by training and she's a mom of a bilateral cochlear implant user flying off the charts. And I think a middle school or about to go to high school. And essentially she's a very talented person, former president of ag bell, but we get the parent perspective from that ag bell member. And one of the parent members from CED has two teenage.
bi-bi kids. So it's nice to have two parents who are always there to be that monitor of all those trained professionals in audiology and speech learners, pathology and educational of deaf and pediatrics and ENT. We need to hear from the parents. As Doreen Pollack said our child's first and most important teacher.
So thank heavens for Meredith and Stacey Abrams service on the JCIH.
Carrie: Yeah, parents are the most powerful people in that child's life. So they always will be. Oh, so another thing that I know that you've been working on is a new diagnostic test called the test of auditory functioning. And I know it hasn't been formally released yet, but do you want to share with our listeners a little bit
Don: about that?
Sure. I've had several sabbaticals and I typically have gone, done, gone to Australia for most of my sabbatical. So on one sabbatical, I kind of evaluated a auditory quote hierarchy. And then my last sabbatical I was able to, after quite a lot of work, I was able to get funding to field test this test of auditory functioning in Israel in the United Kingdom.
In San Antonio, Texas in Atlanta, in Cleveland, and a real height. Did I say Jerusalem? Israel, Jerusalem, Israel, where there's AV, Israel, AV UK. And my last trip right before. Was at the shepherd center in Sydney, Australia. So field testing of 125 plus kids from two to 13 years of age, the only test that had even come close to what I have in my test was a test of auditory comprehension, which you can't even get.
And just as an aside last Thursday, my only copy of the test of auditory comprehension, which came on a CD. And then I put it on a C came on an audio cassette, then they put it on a CD was stolen from outside my office. So whoever out there at the children's hospital of Cleveland clinic stole my orange TAC, give it back because my test is not ready to go yet, but I do have.
 a Binder . You're not going to be able to view it, but it starts 19 subtests. I plan to not give it away, but probably charged. I don't know, $25. I'm going to, I didn't do this for money. This was the culmination of my life of teaching, listening to children, with hearing children, with hearing loss and being able to quantify.
Those audiograms that say CNT could not test and mostly means the audiologist didn't know what to do to figure out the lowest level of detection. So we have presence and absence long versus short, high versus low fundamental frequency with hello there. My name is Reagan. Hello there. My name is Reagan. My granddaughter is recorded, beautiful pictures, but for my granddaughter, she gets to say, hello there.
My name is Reagan. So it's the same sentence. And they're picking. I have to find it I'll be a much more fast seal, but the person hears each sub test as a calibration tone, they hear the audio. So it's all from auditory and they would pick my daughter-in-law's voice, my voice, or my granddaughter's voice.
It moves on to things like the ESP. So I took all the best from all the tests, the ESP, we have pattern perception. We have spondee recognition. We have word identification with bees syllables, but the big point is it moves hierachy. I did learn two year olds. Don't do too well. They are really, even though they like computers, they're having some trouble, but three-year-olds on their Ling sound assessment.
There's learning to listen, animals, learning lists and vehicles, sequencing, listening comprehension. And one of my objections to the TAC, which I've collected data on for 25 years. They hit the kid with zero signal to noise ratio, which is a great thing to do. Testing and noise. Very few tests are very few audiologists, even tests at varying signal noise ratios, but for profoundly deaf kid
To hear a speaker where the noise is as loud as the speaker. That's a little bit much, all of us have trouble at zero signal noise ratio. So I have my final three subtests at plus 10. Plus five and then zero to signal, to noise, signal to noise ratio. So it's going to be computer driven. It has calibration tone each sub test.
It will be, and this is the tricky part that's taking me a little while long with COVID. The kid will be able to touch the screen and that will give the, keep the score and advance to the next picture versus. Kind of mouse driven assessment and field testing. And I would say I have kids with implants, kids with hearing aids.
I have bi-modal kids. I have several bone anchored kids. It is for any technology and it's a criterion based of every year. You could administer the appropriate subtests and be able to demonstrate auditory development and auditory growth from. Initial assessment to next subtests, next assessment. And how much farther they go?
No kid got to ceiling, but the oldest kid was 13. And the reason why I originally said two to 12, that 13 year old just turned 13 and he had his bar mitzvah in Jerusalem. And he's my oldest kid who moved from the Cleveland clinic to Jerusalem. Obviously an English speaker and he's my oldest kid. And most times I would stay, it would go up to really high performing kids who are 10, 11, and 12.
And anyway, a very proud development of, I think, a professional who has worked with lots of deaf kids through the years and really has a good sense of. Where do they break down? And the real true test of real true test of a test is where they break down. It then gives us direction of where to intervene.
If you have a kid who is not even able to tell long versus short. You can't be doing learning to listen sounds. If their auditory skills are needing to really develop long versus short and as kids get new technology, as kids get better as listeners, they are going to move through many of the higher subtests getting to listening comprehension at zero signal noise ratio.
So I named it the TAF, the test of auditory functioning, because after many conversations with Norm Erbert. Who is co you know, classic auditory training book in 1982. He critiqued me every time I went to Australia, he was concerned that people said hierarchy. It's more than just a hierarchy of detection to comprehension.
We have kids who might be identifying, but they still need to detect some kids. You have identification, they can do some things in comprehension. You just don't knock off detection. And stick it discrimination. So the triangle of a hierarchy, I have been using the terms level, term levels of auditory functioning, hence the name of the test.
So that's my crowning glory. I'm not planning to die or retire yet, but I am hoping that this can be circulated to teachers of the deaf speech pathologist. You don't need a sound room. You just need a sound level meter, and we will get really important data. But the auditory ability of children from three to 12 who have hearing loss, no matter what their technology
Carrie: Yeah, that sounds amazing. So, well, it'd be like on an iPad or computer that you download or how has, how does that work?
Don: Some of the bugs have to be worked out. The first one is to make sure it can be driven in, by touch of a mod, a monitor of sorts. I'm anticipating that I'm less inclined to think it will be an app to go to an iPhone, but it will probably go to tablets and tab.
Monitors of sorts that we'll be able to really collect the data because there are also issues I had to think about. Cultural sensitivity in the images. Well, you also need to think about people's motoric ability and also you're very good. Would you get very different data potentially on an iPhone versus the size of the monitor?
So there are a lot of variables, but because it's criterion based, my main reason for not standardizing is. That is a humongous job. So many variables with hearing loss, but more importantly, we have so many variables with the technology they're using. And as you know, some of our kids are hearing aid kids who then become implant kids, or they become bi-modal kids.
So I elected this to be a useful test. Hopefully. Very accessible for usage and administration. And probably that will just be able to really move on to get data. So every year we can find out how the kid is doing. Yeah. And would you
Carrie: suggest every year, would you suggest before that, depending on the, like where they're at with their technology.
Don: I think it might depend. I mean, I certainly want to quantify things like Ling sounds, learning to listen associated sounds that one, those are almost kind of training modules, but the real heavy duty items that have identification of words, two critical elements, sequencing and listening comprehension.
There is the concern about learning, learning the task. So I've never told the kid and I've given the TAC. A thousand plus times I can go through practice items, which are also on the TAF, but I've never given kids the correct answer to the actual test items because you don't want the kid to remember. Oh yeah.
Don said that was about a chicken hatching, an egg in 21 days. So essentially that's the caution on probably the preference for anniversary testing, because you could have a kid learning. The answers with too many administions. Yeah,
Carrie: no, that sounds amazing. And I, I can't wait to get my hands on it once it gets published, because I know as an educational audiologist and being in our program like those just, you know, we write an IEP goal.
Based on the evaluation that we give and to be able to have a tool like this, to evaluate, and then be able to write good IEP goals and objectives based on areas of need based on the assessment is going to be very helpful.
Don: And I actually think educational audiologist. We'll very much be interested in this.
I'll make sure I come to an EAA convention. But also that speech language pathologist who just didn't have much experience working with these kids, will try this out. And I assume one of the accompanying documents might be a manual to give some suggestions, but I've never believed in cookbook therapy, but at the same time, people just, they want to do the best job.
And I think sometimes people revert to artic therapy because they're not quite sure how. Incrementally and appropriately do learning to listen work. So kids get better and better. So if this can lead to better services for our two and three-year-olds on up all more power to it. And I never did this with the idea of, I got a test.
I mean, some of the test. I mean, I buy tests, including speech and language test. Some of the tests are like $500 and then you pay a buck for each form. This was not to make money. It was really to share, I guess, a lifetime of good work. With wonderful teachers starting with Helen Beebee, my parents and Helen Beebe.
And I learn from the young AuD extern. I learned from my undergrads that one of the gifts of our professions is we learn from others and I will never be so proud of I'm the experienced old man in auditory verbal. I hope I'm a better clinician at seventy. Then I am at 67 today. And what I was when I didn't know what the heck I was doing, thinking SLPs played old maid and memory concentration.
Cause that's the only thing I remember besides they could never hear E and speech pathologists play card games. So why not go to grad school at the university of Florida to learn how to play card games, go to the beach and surf. Angel's not by the water. I forgot to look at a map before I went to Gainesville, Florida.
Carrie: Well, thank you for all that you've done and, and share with our profession too. Cause I, I know I that's the gift of giving back, right. That we learn and to be able to give back, is there anything that I didn't ask you that you wished I would have.
Don: That is a great question. I guess my takeaway two real themes.
It's not the device and I think we're too often thinking implant in all well, implant in unbelievable audibility. But work is still needed. The access to sound is easy. I was friends with Dan Ling and Dan Ling would say, it's easy with an implant. And I said, Dan. I am so respectful of you, but that message is powerful.
But what if you have the kid, when it isn't easy and you get the impression it's all about the device, can you stop saying it's easy with, because of the technology? So it's not the technology. And I think the other thing in a way, I think. Our relationship and my respect for your colleagues in your ESC.
And as I interact with a lot of speech people who are afraid of audiology and vice versa, I hope our goal we'll always come back to that child, that child of a family that really didn't sign up for a kid with hearing loss unless there's some other sibling. It's not what people necessarily were expecting, but if we break down our silos of I'm the master SLP, or I'm the.
There's a lot of people that are not LSLS that still can do really good auditory teaching. I want more people to be LSLS, but you don't, it's not your degrees and it's not your initials. It's this breaking down and getting away from silos and that final theme of the skies, the limit. I know that Robert taught me.
Oh yeah, everybody who's deaf or wears body aids listens and talks. Robert might've been an exception in 1974 when I started, but we have more kids who can be the sky's, the limit. And even our kids with multiple disabilities. It's that kid compared to him or herself, because it is kind of cool. When we work with the most intriguing and cool kids and I have to be careful.
I'm so excited about a five week old and it's like Don, You could be given the wrong image to this family. They're not that happy that there's a hearing loss, but I hope the enthusiasm just like Carol and Denise were for you. And literally Beebe was for so many others. You take the attitude that until proven differently, that kid can go to the moon and more and more of our kids are going to the moon.
And that's pretty darn special.
Carrie: It is, well, I want to just thank you for being a guest today on the empowEAR podcast. And I agree, I think our kids, the sky should be the limit for them and to be able to be a coach and what collaboratively like it together outside of our silos is really the way to go.
So thank you, Dr. Goldberg, Don for being on here today. I so appreciate
Don: it. Thank you. And thanks for everyone who might've listened and feel free. They can best get in touch with me with D Goldberg ERG at Wooster Dot EDU rooste
Carrie: I will put that in the show notes too. And then they will be able to click on your email and get ahold of you as well.
Don: Sounds good. Thank you.
Announcer: This has been a production of the 3C Digital Media Network.

Episode 32: empowEAR Audiology - Drs. Dainton and Huzzy 

[00:00:00] Announcer: Welcome to episode 32 of empowEAR Audiology with Dr. Carrie Spangler.
[00:00:16] Welcome to the empowEAR Audiology Podcast, which is part of the 3C Digital Media Network. My name is Dr. Carrie Spangler, and I am your host. I am a passionate audiologist with a lifelong journey of living with hearing challenges in this vibrant hearing world. This podcast is for professionals, parents, individuals, with your own challenges and those who want to be inspired.
[00:00:45] Thank you for listening, and I hope you will subscribe, invite others to listen and leave me a positive review. I also wanted to invite all of you to visit and engage in the conversation on the empowEAR Audiology Facebook group. Transcripts for each episode can be found at www 3, the number three, C digital media network dot com under the empowEAR podcast tab.
[00:01:19] Now let's get started with today's episode. Hi everyone. Thanks for joining the empowEAR Audiology Podcast. You are in for a real treat today. And I am going to be talking to two extraordinary educational audiologists, and we are going to be talking about why providing educational audiology services for children who are deaf and hard of hearing to promote listening, learning, and spoken language.
[00:01:51] in their mainstream environment is critical for them to succeed. And that audiologists are a part of this interdisciplinary team of professionals that support students of all ages and their families. So I am going to give a little introduction to the two educational audiologists that we have with us today.
[00:02:16] Um, from Clarke hearing and speech one is Dr. Ashley Dainton, and she has an audiologist at the Clarke hearing center. Ashley. She knew from an early age that she wanted to work in a multi-disciplinary field of healthcare. She graduated from Kent state with a bachelor's in science, in speech pathology and audiology.
[00:02:41] And she completed her doctorate of audiology at the Northeast Ohio AUD consortium. And she also received the 2017 labor award for outstanding graduate students. Ashley had a clinical placement at the Independence, Cleveland clinic, family health center, Stark county educational service center, the Kent state university, and University of Akron clinics.
[00:03:08] And she was part of NOACs First audiology, mission trip to Guatemala. Ashley went to California to complete her fourth year audiology extern at the Providence speech and hearing center. And during her externship, Ashley had three clinical rotations that included adult and pediatric unit fittings and services, diagnostic testing, and specialty testing, auditory brainstem, response, testing, and cochlear implant.
[00:03:38] I also have Dr. Rebecca Huzzy with me today. And she is an educational audiologist at Clarke schools for hearing and speech. And she graduated from Bloomsburg university in 2003 with a bachelor's in science in audiology and speech pathology. And then again, in 20 2007, with a doctorate in audiology. she has worked as a clinical audiologist that.
[00:04:06] Nemours Children's hospital in Delaware. And then since graduating and began working as an educational audiologist that Clarke Philadelphia in July of 2013, her clinical interests include clinic cochlear implants, amplification, and education. I know all of you listeners that input treat today and let's learn a little.
[00:04:31] More about the key roles that educational audiologist play in this schools. I welcome to the empowerEar Audiologyo podcast. I am so excited to have Dr. Rebecca Huzzy and Dr. Ashley Dainton with me today. So welcome. Both of you.
[00:04:51] Rebecca: Thank you so much, Carrie, I look forward to working with you. Thanks.
[00:04:56] Carrie: Yeah, I would start out and I just ask you some of your professional background.
[00:05:02] Um, and how did you get into the field of audiology? So, Rebecca, do you want to start.
[00:05:09] Rebecca: Sure. Thanks again. Thank you so much for having us. We really appreciate you taking the time to talk with us today. Um, so I graduated from Bloomsburg university with my AUD in 2007. Um, and. Continued or started my career at Nemours children's hospital in Delaware, uh, which is a pediatric, a small pediatric hospital in north Wilmington.
[00:05:32] Um, and then a couple years later, my schedule allowed me to, uh, split my time to work both at the hospital, as well as working for Clarke schools for hearing and speech in Philadelphia, where I've been there since 2013. Um, that's a little bit about my background in history.
[00:05:56] Is
[00:05:56] Carrie:Is there anything that drove you into the field of audiology?
[00:06:01] Rebecca: I think my. My background really is similar to a lot of a lot of other people's, um, going into first, I was going to go into deaf education then, um, speech pathology, and then ultimately audiology won my heart. So with that first audiology class, I was like, oh, this. So,
[00:06:23] Carrie: well, that's awesome. So, Ashley, do you want to share a little bit about how you get steered into the field of audiology and some of your background?
[00:06:34] Ashley: Absolutely. It's good to be back and seeing you again. Um, so in terms of me, I did my undergraduate at Kent state university. And then I did my graduate program through the Northeast Ohio AuD consortium, where I happened to meet you as a mentor. And I had observations with you and I did some volunteer things and, you know, opportunities with you.
[00:06:58] So originally, interestingly enough, I wanted to be a nurse before I got into audiology. Um, but through clinical observations at hospitals, I kind of found my way through observations to the field of audiology and similar to Rebecca, those audiology courses, the research, you know, having those observations really solidified it for me as well.
[00:07:19] Um, I ended up doing my externship in California. So went all the way from Ohio to California. And then after that, I came back this way a little closer in Massachusetts, where I started in 2017 at Clarke. And I've been there ever since.
[00:07:35] Carrie: Well, I just have to say, Ashley, I remember you as a student and you had your little book.
[00:07:43] Dr. Spangler, I meet with you about educational audiology and it had looped little tabs, and I think it was like all color coded with your notes and everything.
[00:07:52] Ashley: And I'm pretty sure I had purple hair as well at that time. So I
[00:07:59] Carrie: had this whole notebook of questions that you were So intrigued with educational audiology.
[00:08:05] So it just makes me happy that you are so settled in on this. I think that the secret hidden gem of educational audiology as I like to call it, uh,
[00:08:16] Ashley: absolutely.
[00:08:17] Carrie: So I thought it would be great to have a conversation about, um, educational audiology and how it is. Again, different from a lot of other sectors of audiology and as an educational audiologist myself.
[00:08:34] Um, I think we get this question quite a bit when you're in the school setting. So what, how is educational audiology different than what maybe a clinical audiologist might do? So I don't know who wants to start with that one?
[00:08:52] Rebecca: I think I'll go first. Um, so honestly, When I started, like I said, I was, I was a clinical audiologist first.
[00:09:00] And then when I first started as an educational audiologist, it was, it was even though I've been doing it for seven, eight years, um, it was. An eye opener, right? Because you know, you can diagnose hearing loss. You can, you can fit the hearing aids. You can fit the remote microphones and then you get into the real world at school where all the things are different.
[00:09:29] So everything in the, everything in the. In the clinical world is finite. And there you go. It's all quiet for me. And then you get into the classroom and you realize that equipment doesn’t Connect when it should be connecting and people are hearing here, our kids are hearing other teachers. Um, when I first started as an educational audiologist, it was literally the month that Roger or a couple months after Roger came out and it, I was on the, on the phone with Phonak for, at.
[00:10:05] I don't know, 30% of my day, every single time I was in the classroom. Um, so it's a lot of different things to different skillset. We have that we do have the skills, but it's a different way. You have to think more on your toes about, about troubleshooting and making sure that things are working, um, in the moment.
[00:10:24] You know, we have to make sure the equipment is working in connecting with the school's equipment. We have to make sure that, you know, we have, are collaborating more with the teachers and the educational discipline, uh, multidisciplinary team, um, and making sure that they know that what, how hearing loss affects the child globally.
[00:10:45] And some, some characteristics of hearing loss might not be as intuitive as. As one might understand it could be, you know, how many times did we hear? Oh, well they can hear me. Let's just like, Hmm. Not quite. So we do have to be a voice for our students, um, and really be able to troubleshoot in the moment.
[00:11:12] Carrie: Yeah. So Rebecca, just to ask, I know you're at Clarke Schools for hearing and speech right now. And you guys have five different, um, locations. Did that help you to have like, almost like, did you have a mentor then going into the educational setting from that clinical setting?
[00:11:32] Rebecca: At the time. Yes. Um, I worked with the educational audiologist, um, who, who was up in North Hampton.
[00:11:41] Um, although we run because, because it's a different state, the, uh, the agencies are a little bit different. Um, so she gave me a lot of the, the, um, information that she worked off on, off of and from. we work together to make sure that I kind of knew what was going on. As far as the whole five campuses goes. I'm a little bit about the history, but because of the role of being a little bit different, um, I, I really, I did rely on, on the manufacturers to help me, um, with the troubleshooting and, you know, and everything.
[00:12:20] I, I used my resources.
[00:12:23] Carrie: Yeah, I know. I think really all I have to use my resources. And like you said, every state's a little bit different and how. You know, the federal laws are the same, but how it's implemented looks a little bit different depending on where your location is. So actually have anything you want to add.
[00:12:39] I know you had an opportunity to actually do a clinical rotation in the schools before actually going, um, and into your, you know, graduation. So do you have anything to add between that clinical and educational role?
[00:12:54] Ashley: Yeah. To add on to Rebecca, you know, fortunately I did have. That educational placement.
[00:13:01] Um, and it's amazing from even my first observation to like my clinical placement to now how much has changed between manufacturers and just updates in technology. Um, so I was fortunate, you know, whether it was my placement or texting you really quickly, or, um, I think definitely what's really exciting about Clarke now is.
[00:13:23] Once a month meet with audiology teams. So I noticed a lot of brain picking and like what we noticed in our clinical settings. So, you know, coming in, I did have a mentor and mentors, so some of it was, Hey, we're adjusting this and we're gonna maybe, you know, we do testing with the equipment every year or so maybe adjusting our report and how that looks.
[00:13:45] I'm still following the same AAA guidelines and everything. So I think. Adjusting and updating information, but still collaborating with the team members. I think what's a little neat in terms of the North Hampton campus is for some districts, I'm the managing and the educational. Um, and we've tried to divide districts that way.
[00:14:04] So. I've made it really important if I'm the managing audiologists to really try and touch base with the educational audiologist or for, if there's not one, try to see if there's a way to get an educational audiologists or those important team members. And then as the educational audiologists, whether it's in our kindergarten to eighth grade program or for mainstream students, I'm really trying to touch base with the managing audiologists.
[00:14:28] So I agree with Rebecca it's a lot of. Either role, making sure to touch base with the professionals, touch base with the students. Um, regardless of hearing loss, or we have some students who have auditory processing disorder as well. So I feel like there's some things that. Are definitely, we're becoming creative about how we provide services, especially with a virtual world that we're kind of transitioning into.
[00:14:54] Um, but I've noticed actually the virtual in-services and those meetings and emails has actually provided more access for students, which is great. So that's what I've kind of noticed this transition as we continue.
[00:15:06] Carrie: Yeah, there's definitely some, I think, benefit of the virtual world that we've lived in, that I would like to see move forward.
[00:15:14] And do you guys feel that you make a pretty good effort, then they know who they're managing our clinical audiologist are for the students that you have. And do you think that's helpful, um, to make sure you're almost like that bridge in between the more clinical, um, and then those who are, um, the educational team.
[00:15:37] Rebecca: I do, you know, we, we want to make sure of that. Not only are we providing the best audiological management in the classroom, but also we want to make sure that the teachers are aware of the current audiograms. And if there's any concerns on the educational side, you know, it's really important to collaborate with their clinical audiologist and their managing audiologists, um, to just to make sure that everyone is on the same page with everything.
[00:16:08] Carrie: Yeah. So thinking a little bit back to, I think what you said Rebecca about, um, how teachers might say, well, they can hear me just fine, right? In the classroom type environment. What are some, I guess, signs that maybe teachers or, um, caregivers might have that would spur them to get their child's hearing tested?
[00:16:36] Ashley you have Rebecca, would you guys want to add. Yeah, we can kind of tag
[00:16:43] Ashley: tag team this for sure. Um, so kind of like the clinical hat on, um, what's nice is at least in Massachusetts is one that I can definitely speak on behalf of is we do the universal newborn hearing screening, um, all different states, maybe have different protocols and mandates.
[00:17:02] But we do a screening before they leave the hospital. So I think that's a great starting point with families. And based on those results, they may need an additional follow-up appointment or that's enough information for this family. Um, so typically at the Clarke North Hampton campus, what's interesting is we see children who are six months and older, um, for that initial testing.
[00:17:25] So oftentimes it's a child who has maybe a speech delay or, you know, Family has a concern about hearing loss. So I think for those really young children where maybe they're not quite developing that language yet, it's looking out for those markers. Are they interacting with you? Are they interested in who's talking and kind of knowing where sound coming from?
[00:17:47] Are they alerting to sounds in the environment, whether it's the family pet. Or dog barking or maybe a car horn. So that's definitely a big source of referrals and just being aware of family history and kind of some risk factors. We've seen little ones where they've had family members who have hearing loss.
[00:18:07] Um, as I discussed, I think a great starting point for those families is touching base with your primary doctor. First, if you have any form of a concern, whether it's speech, whether it's hearing it never hurts to bring it up to your primary first. Um, they may do an initial screening in office and then make a referral if needed.
[00:18:24] So I think that's a great starting point. And you know, we also. Families that don't pass the hearing screening. So don't be scared or alerted. At first, I've done some hearing screenings where we're in a noisy gym room and, you know, maybe the acoustics or the sound in that room might affect test results.
[00:18:40] So I always tell families, you know, even if test results show typical hearing, or there's not concerns, you have a great baseline for your little one. Um, and then if Rebecca, if you want to kind of talk about the educational audiology setting.
[00:18:55] Rebecca: Yeah. Um, I think that. Some teachers should be aware that, like I said before, that hearing loss can sometimes look at, look at, look like a, a behavior concern.
[00:19:07] Right? So if the child doesn't, doesn't hear the teacher and teacher looks back and sees little Johnny talking to his neighbor saying, Hey, what page did she say our homework was that in out of, out of context, looks like she's not, he's not paying attention. It looks like he is. Talking out of turn, it looks like that he is.
[00:19:28] Um, it's not, he's not ultimately it doesn't look like he's being an advocate for himself. Um, so another, you know, Just not paying attention. Um, getting up from their seats, it looks a lot like behavior concerns. And so, you know, especially if they have a known hearing loss and their equipment might not be working or the, the remote microphone system isn't working or connecting properly, those are the things that we need to really address in the classroom as well.
[00:19:58] Um, a lot of other things is if, um, You know, the, would their speech, if their speech starts to decline, um, those are some red flags that we need to be readdressed in the clinical setting.
[00:20:11] Carrie: Yeah, I know. I, I feel like every child that is being referred for any kind of speech and language eval should definitely be having their hearing screen prior to any type of speech, language articulation.
[00:20:27] And I don't know. I mean, I think for the most part that happens, but I don't know if that always happens and it can be a big part of, you know, those referrals too. So, um, and every state, like you said, it's probably different in how they do school hearing screenings and how they get referred to you ultimately, um, in the end.
[00:20:46] So it's, I think a national thing to, to be aware of too.
[00:20:52] Ashley: Yeah, something I even noticed too, for some of the referrals that we get, um, it'll say like did not pass screening whether at school or in the primary care physician's office. And it's one of those, you look in the ears and you see wax blocking the ear.
[00:21:07] Um, or, you know, some parents notice maybe their little ones are poking at their ears or kind of pulling on them. That can be another sign that maybe there's an ear infection. Um, I think it's a really helpful thing. There are things that maybe a kid's not going to say, Hey, my ears hurt or, Hey, I'm noticing my ears sound different than they previously did.
[00:21:26] Um, so those are oftentimes what we've found too. It's an ear infection or maybe some wax in the ear, um, that can be hopefully treated and resolved.
[00:21:37] Rebecca: Oh,
[00:21:37] Carrie: sorry. Not testers as a good and result. Right. There's always going to be a way that we can find. Ultimately what's going on with the child's hearing. And we think that's important to have you over the last decade.
[00:21:53] There's been increases in the number of children who are deaf and hard of hearing who are mainstreamed who I, you know, in the neighborhood schools, um, and maybe not in as much of a, um, a specialized area. So how do you feel audiologists can support. Students who are deaf and hard of hearing in a more mainstream type setting.
[00:22:19] And why does I role important?
[00:22:22] Rebecca: No, I think the role as the educational audiologist is, is super important because we, um, are their first line of defense as far as auditory access. Right? So I think first and foremost, we really need to establish that the child has functioning equipment and that, that functioning equipment.
[00:22:40] Is brought to school every day and that it has good and stable connections with the remote microphones. Um, so because of, because of the, the need for, you know, the, or the foundation of hearing as access to speech and language and ultimately learning that needs to be addressed and it's in and of itself.
[00:22:59] Um, I think also that. Knowledge and education sharing between the teachers and the caregivers and the nurses and the educational team is really important. Um, kind of going off of what Ashley was saying before, you know, when they come in after a failed screening, you know, and you look in the ear and there's huge, you know, wax occlusion, you know, I, I, there was one time.
[00:23:20] I, I had a, um, I had a student come in, um, in my clinical world and then ma and he known. wears hearing aids, um, comes in with a , a referral from a screening and. Did we know, like, does the nurse know that there's, there's hearing loss and she's like, oh yeah, but she said that the hearing aids aren't working because he, you know, when we put the headphones over the ears, um, with the hearing aids on, oh, this is no joke.
[00:23:47] This literally happened. Um, That the hearing aids weren't working because he wasn't responding when, when the headphones were on over the hearing aids, I said, oh, I said, can we just write a note that he's excused from these hearing screenings at school? Um, because that's, you know, so that really, it drives home.
[00:24:03] The fact that nurses don't know a lot about how technology works either. So it's our role as educational audiologists to inform everyone who's caring for this child. Um, and you know, also. Our biggest thing that we can also do is to be an advocate. So if we can be an advocate for our students, they can be an advocate for themselves.
[00:24:25] There was one time. Um, you know, I, when I started at Clarke, you know, this little girl, she was four years old. You know, I was going around, I was checking everyone's equipment and I was looking at everything, making sure everything was working. Um, I said, okay, you know, I'm going to be I'm I'm finished now.
[00:24:42] And she said, okay, thank you. I said, oh yeah, here. No problem. Anytime. And so in on her face, she, she looks at me with confusion. I didn't know what to do at that point. So I was like, okay, have a good day. Bye friends. And then she got very angry. She stood up from her chair and said, you are supposed to say, you're welcome when someone says, thank you.
[00:25:03] And I said, oh yes, yes, you are right. You are definitely right. Well, you're welcome. And thank you for pointing that out for me. Um, yeah. If that doesn't strive home, the need for advocacy. I don't know what else does is, I mean, what else does in, in the moment, because that little four year old knew what she wanted to hear.
[00:25:23] And clearly I did not meet that expectation
[00:25:27] Carrie: and I'm sure she's doing quite well for herself.
[00:25:32] Rebecca: Absolutely. Oh,
[00:25:35] Carrie: that's awesome. So Ashley, do you have anything to add about like that mainstream setting and, and the importance of education, educational audiology?
[00:25:46] Ashley: Yeah, I think, you know, definitely whether it's managing role or educational audiology, what's been really great at Clarke is oftentimes if the teachers of the deaf are providing services for a student with hearing loss, and even if they're managed by an outside clinic.
[00:26:01] They try really hard to touch base with the school and say, Hey, you know what? There is great benefit to having a teacher of the deaf and the educational audiologist on the flip side, too. I know without, you know, getting out of my scope, I also say, Hey, the student seems to really be focusing on. I don't want to wear my amplification or my hearing aids.
[00:26:24] I think having that support in the classroom with the teacher of the deaf, um, would be really beneficial. So I think it's that comfort level of also touching base with the schools and checking in, Hey, are there any new students? I think just letting them know that you're there and what you can provide.
[00:26:40] I mean, I know so many students who, whether it's unilateral hearing loss or they have a slight to mild hearing loss and we do testing with noise and it's amazing the score differences with just amplification, just implants Versus with all the equipment for school. So whether it's discussing that with the school, you know, with the student, with the team, I think all of that is so helpful.
[00:27:03] So I think it's just being comfortable to just touching base, checking in, um, whether you're managing audiologists educational, or you have some team members that are touching base with you too. Um, we've even have instances where I think of those students who are mentioned be cochlear implant candidates, um, where I have so appreciated the teacher's updates.
[00:27:24] And there may be that borderline candidate where the speech, the teachers, that team update has really helped these students. If the family's interested to get cochlear implants to pursue that, to help them, you know, make sure they're getting the right treatment that they need. So again, I think like Rebecca was saying, you know, having that team approach.
[00:27:42] Including the educational audiologist is really, really helpful because oftentimes the managing audiologist is touching base once or twice a year. Um, and that comes from my perspective too, where maybe it is that once or twice a year appointment and the educational audiologist, as well as those other team members are seeing the student every day in their real world situation.
[00:28:02] Um, so all of that can be really helpful.
[00:28:05] Carrie: Yeah. Another the good point, what you brought up is having all that information. Like you example of that borderline cochlear implant, you know, you candidate, and by you gathering that school information might just be the information that cochlear implant center needs in order to go to that next steps
[00:28:24] or the parents might need to go to that next step. So again, that bridge between that clinic and educational audiology is so critical along the way. And then I think you brought up another good point about the functional assessment. Then that's another role. Have you guys found that really plays into the educational team?
[00:28:47] Being able to functionally assess them in their school environment?
[00:28:54] Yeah.
[00:28:55] Rebecca: Yeah, absolutely. I think that that functional that, like I said before, the, the world in the clinic is so small. You know, and you can, you can adjust the hearing aids and you can have them walk around the cafeteria or walk around outside. And it doesn't really mimic real world. Um, so the people who are, who are working with the students and the, and the, and the children, um, uh, on a daily basis, really have such a massive amount of information that they can share to make sure that we, uh, you know, as the clinicians know what's happening in the real world,
[00:29:34] Carrie: So I have both of you guys too.
[00:29:38] What if you have a student or just say the, you know, somebody who's listening right now and they have a student who is deaf or hard of hearing, whether it's their own child or, you know, their teacher that's listening and they don't have an educational audiologist. Do you have any tips for advocating to get either one of you?
[00:30:04] Rebecca: You know, I, I'm a big fan of making my wants and needs known to anyone in any kind of world, you know, kind of anything you can't assume that someone knows what you want and what you need until you talk to them. So as the parent of a child with hearing loss as a, as a clinician who, who knows that there is no educational audiologist on the team, and it's really important for us to make sure.
[00:30:32] the Educational team is aware of what the child needs and, and can make a really big difference in their potential. To succeed. Um, so, you know, recommendations, reaching out to change the IEP, to making sure that, you know, I don't want the nurse doing the hearing screenings. I want to be referred to the clinical world.
[00:30:56] Um, I think that's really important. That the parent knows that they have that power to request things. Now it might take a lot of negotiations and, and meetings, but they do have the power to request what they need
[00:31:14] actually.
[00:31:16] Ashley: Yeah. So I definitely think, you know, a big part of it too. I think that's, what's awesome about managing audiologists. I know some of our reports that I've typed up have gotten a little lengthy with recommendations, um, but included in the recommendations I've had parents feel motivated and
[00:31:35] Empowered with this lengthy report that has these recommendations, um, to advocate for themselves. And I know there's resources out there for parents in terms of even quick searching educational audiologist, and there's, you know, the educational audiology group of America, that huge group that kind of connects all the educational audiologists in the world.
[00:31:58] So I think a good starting point if you're feeling a little overwhelmed and maybe you have a teacher of the deaf. You know, with asking them, or if you feel more comfortable, maybe touching base with your managing audiologists and go from there. Um, I definitely think there's a lot of resources out there for families and for audiologist.
[00:32:15] Right.
[00:32:15] Carrie: Definitely. So just to kind of wrap up a little bit, I know, um, you guys both work for Clarke schools for hearing and speech, but you're both at different campuses. And I understand there's five different sites that offered I have a center-based services, but can you just share a little bit more about your services and supports that you have.
[00:32:43] Rebecca: Sure. Um, so like you said, Clarke schools for hearing and speech, um, has five locations. I, um, work in Philadelphia. And my primary focus is working with the students, um, weekly to again, make sure and, and, um, and manage the integrity of the systems of their personal systems up their, of their, of the classroom.
[00:33:10] Systems. I also, um, we're sandwiched between in Philadelphia. We have a couple of children's hospitals, um, who all diagnosed the, our students, um, and manage them on the clinical side. So I am corresponding with their managing and clinical audiologists on a regular basis. I, um, provide them. Uh, in services to the classroom teachers, not only at Clark, but also in the mainstream, um, a typical day for me really is going to make sure each classroom, all equipment is working, coming back in, touching base with our team to make sure there's any, anything that if they're noticing any decreases in the listening checks or concerns that they might have with their, with their students, that, um, I'm, I'm unaware and ultimately, um, bring to the clinical side, um, And that's, that's pretty much what my role is.
[00:34:06] Isn't most of the time in the preschool at the Philadelphia location. Okay.
[00:34:11] Carrie: Ashley does your role look different.
[00:34:15] Ashley: Yeah. So I could literally show you my week's week schedule. And even though I have certain spots for certain appointments, it literally looks different every day. So like I discussed, I kind of wear both hats of managing audiologists as well as educational audiologists.
[00:34:31] So my day could be providing hearing tests for whether it's six months and over or adults. Um, we also do, you know, hearing aid fittings for. local patients in the community. Um, it also typically three times a week, I'm checking in with our kindergarten to eighth grade program for children with hearing loss.
[00:34:52] Um, so oftentimes similar to what Rebecca was saying, I'll check in with the students, I'll, you know, complete testing to make sure their equipment's functioning well. And then there's also. Educational piece for mainstream. So whether I'm managing or just the educational audiologist, um, we provide services testing.
[00:35:11] I know lately I've feel like I've had a million virtual in-services so lots of that too. Um, It's different day to day. And I love the opportunity to be able to support our kindergarten to eighth grade program. We also have a preschool program, um, that another audiologist supports. And then I get the opportunity to work with mainstream, which is totally different.
[00:35:33] And I know it can be chaos sometimes of the start of the school year, making sure all the equipment service and out there. Um, and then getting the opportunity to work with. Adults and kids in the area is great too. So as I said, you could ask me this today and the next week, and my schedule could look completely different, but I love that.
[00:35:54] I love that. I get to have that variety throughout my day.
[00:35:58] Carrie: Great. That's such an amazing, um, services that Clarke is able to offer to, uh, find different sites and communities. So thank you guys, but all of that. So I guess just to wrap up, I thought I would just ask, is there anything that I didn't ask you that is that you were like dying and thinking, oh my gosh, I hope that she asked me this question.
[00:36:22] Anything else you want to share?
[00:36:29] Rebecca: Um, honestly, I think that we've really covered all of everything that Ashley and I prepared for and more, um, I just think audiology on a whole is such a wonderful world that really makes a difference in our patients, students, Children's lives that, you know, educational clinical, anything in any kind of, um, individual in this world really is, is, um, really important, um, to any student out there that you make a difference.
[00:37:03] And it's really important to know that you, you have a really important role in your, in your students and your patient's lives.
[00:37:11] Carrie: Yeah. That's great. Ashley,any final a words.
[00:37:15] Ashley: Yeah. I think for me, you know, we're definitely getting into the time where we're getting towards the holidays. So don't hesitate to reach out to your managing audiologist or your educational audiologist.
[00:37:26] If you feel there's been any changes or if it's been a while, since you've seen one of them before, you know, since the last time you've seen them. So. I think overall we've kind of summed up the importance of not only educational managing, but all the team members that help support pediatric patients, as well as discussing further about the support for adult patients too, because we do have some adult patients that are in.
[00:37:51] College or university setting as well as you know.
[00:37:55] Carrie: Yeah. That transition piece, no matter if you're transitioning from what early intervention to preschools at school, age to college, um, touching base along the way is going to be really important because your needs change. And all of those different steps along the way, but I just want to say thank you to both of you for joining me on the empowEAR Audiology Podcast.
[00:38:17] I know our listener to as I really going to benefit from this conversation. Um, and so again, thank you.
[00:38:27] Announcer: This has been a production of the 3C Digital Media Network.

Episode 31: empowEAR Audiology - Dr. Stacey Lim 

[00:00:00] Announcer: Welcome to episode 31 of empowEAR Audiology with Dr. Carrie Spangler.
[00:00:16] Carrie: Welcome to the empowEAR Audiology Podcast, which is part of the 3C Digital Media Network. My name is Dr. Carrie Spangler, and I am your host. I am a passionate audiologist with a lifelong journey of living with hearing challenges in this vibrant hearing world. This podcast is for professionals, parents, individuals, with your own challenges and those who want to be inspired.
[00:00:45] Thank you for listening, and I hope you will subscribe, invite others to listen and leave me a positive review. I also wanted to invite all of you to visit and engage in the conversation on the empowEAR Audiology Facebook group. Transcripts for each episode can be found at www dot 3, the number 3, C digital media network dot com under the empowEAR podcast tab.
[00:01:18] Now let's get started with today's episode. Hi everyone. Welcome to empowEAR Audiology Podcast, I am really excited today to introduce my guest and friend of mine and someone I have actually known for quite a while. Today I have Dr. Stacy Lim with me. She is a PhD audiologist, and she's an associate professor of audiology at Central Michigan University.
[00:01:48] And Stacy has a history of different degrees. She went to the college of Wooster. She went to the University of Akron and to Kent State University to get a PhD. And all of those universities, are in the great state of Ohio. I have to say that right now because she's from Michigan. She does teach many courses related to pediatric and educational audiology.
[00:02:15] Cochlear implants and aural rehab. She's had numerous honors and recognitions. She has numerous publications, and I'm just excited to have her on today because she is going to share a little about her personal and her professional journey. So welcome Stacey.
[00:02:36] Stacey: Thank you so much for having me here. I'm so excited to be talking with you and it so good to see.
[00:02:43] my fellow friend and colleague in the field of audiology, we have a, so many interesting common I'm going to have stuff to share. It really exciting. So good to be here with you.
[00:02:54] Carrie: Yes. And I was trying to think Stacy, like when we met and I want to say that it was. At like a Natural communications event, maybe,
[00:03:07] Stacey: maybe I was trying to figure it out on that one too.
[00:03:09] I was thinking I probably was Natural communication and maybe you tested my hearing at U of A, I don't remember.
[00:03:22] Carrie: I might have. And that's probably all of on that same time, because when I was in graduate school at the university of Akron, with Dr. Flexer, and your parents were very involved with Natural Communications, which was like an auditory, verbal parent organization that they started in our area, and I want to say, maybe you were helping out with one of the Halloween.
[00:03:50] family events and I might've met you there, but I might've tested your hearing when I was a student to
[00:03:57] Stacey: you. Might've done both. I'm a, not so hard to say. And I know when I was going to Akron you were also one of my supervisors in clinic so we have this long history, but I'm not sure when it started
[00:04:10] And what's even crazier to me is that both of us wanted the same high school.
[00:04:19] Carrie: Yeah. So we both went to stow high school and grew up in Stowe and we never knew each other. We were just far enough apart. I was just far enough older than you that we never. We're in the same school at the same
[00:04:35] Stacey: time. Right? Exactly. It was so funny when people are like, oh, do know Carrie and she is from Stow. I was like, oh, It was so cool that we started in the same place and ended up doing the same kind of work.
[00:04:52] I will pass along the way. There's a kind of fun, not quite parallel , but not kind kind of parellel.
[00:04:59] Carrie: Right. And then they intersected when we both decided that we were pursuing a degree and ideology.
[00:05:08] Stacey: Yeah. It's so neat to have that kind of conversions. Yeah, it
[00:05:13] Carrie: is. So kind of going back to stow and, and growing up. Do you want to share a little bit with our listeners about your childhood journey and growing up with a hearing
[00:05:26] Stacey: loss?
[00:05:27] Yeah, I was born with profound hearing loss and my parents were really. Trying to find ways to know the pathway from the communicate. But if I have to option for me that they felt was the right fit for them. But every time in really was one day identified with hearing loss they went and asked for like multiple second, third, fourth
[00:05:54] I don't know how many opinion. So it kind of getting out of hand maybe the third or fourth time they ended up at Kent STate University when Carol Flexer was still a graduate student there. And for some reason the professor was supposed to test my hearing wasn’t there but Carol was. So she tested my hearing and it was confirmed that I had hearing loss and of course my parents started crying and she was like it is OK, there is a place in Colorado called the Listening Foundation and they work with kids with hearing loss and they teach them how to talk and hear
[00:06:33] And here my aunt, just totally by coincidence my dad I had a business trip, I think the next week or the week after the Denver, Colorado wow, like before the internet, like you call the telephone operator or telephone directory and get phone number.
[00:06:55] and he called and asked for the listening foundation and the person knew who he was talking about and knew it was a place where kids went to learn how to speak and hear. So my dad went there and no, he saw these kids and was ready to move to Colorado and Doreen Pollack who was their director at the listening foundation. So, no. Was a place in Pennsylvania, the BeeBee center.
[00:07:20] And you kind of go there and see what you think and see if it is a good place for you. needs and she feel that that's a good place for you and they went there with Carol Flexer and Jenny who was my speech therapist auditory verbal therapist
[00:07:33] at the time they brought me over there, I would probably like just a little over a year old, I think. And so there they met Helen Beebee was one of the pioneers of auditory verbal therapy and they brought the things they learned from Helen Beebee, back to Ohio and they began to work with me.
[00:07:58] and Now my parents worked really hard. No, I think one to chat with really hard, I think because a lot of people were like telling them, they were doing the wrong thing you know that this was not a time when cochlear implants were really not around basically and but hearing technology works.
[00:08:19] Not as advanced as they were now. I guess it probably would be a good way to think of it. And so now I had to go to Stow high school, but not right away. No, because they didn't want me. At the time, you know, when I maybe like, I think I want to say, like kindergarten I have to go to Kent which is neighboring school district.
[00:08:41] And I was in a classroom for part of the day with some other kids who hearing loss, but it was an oral program, which means they used spoken language. I don't remember how kids were in the classroom. But then they transition into a sign language based program. So my parents were like well that I well put a back in Stow or a parochial school and she can know if I could go there.
[00:09:10] Well the parochial school didn't want me because of my hearing loss and Stow didn’t want me at the middle school because of my hearing loss.Really didn't want me because of my hearing loss and they thought that I should use sign language and be in a self contained classroom and I my parents had to fight really hard to get me and the school psychologist
[00:09:33] was amazing. And he was the one who tested me and he started, he thought I could do well in the regular classroom. But it was more conditional. They mean, like I got my, an agreement with my parents that they would let me go to first grade and they were at the end of the year, kind of see my progress.
[00:09:59] And if I made enough progress or if I was doing well in school, they would let me go onto second grade. Otherwise I would have to go. Maybe a self-contained classroom or something, but I was mainstream all the way through high school at Stow which, you know, I think overall, I think it was a good experience for me in turned out like the classes are talking to my friends and all of that.
[00:10:27] I'm sure. I have a lot of things. I'm not sure why, but I just want to know about, yeah, no, I
[00:10:31] Carrie: guess I'm just thinking of a couple of things. Well, first of all, kudos to your parents because they are amazing. And basically, you know, what they felt was right for you. They were going to fight for it and they continued to do that, did that and they will.
[00:10:49] Pioneers. And so many ways since I know them, I know that they were pioneers in so many ways to help other families that and children that came after you and neighboring districts and programs be able to participate. Because of everything they went through, they were able to guide other families and how to do things.
[00:11:12] So first of all, kudos to your parents. I, I love your parents, so great. But I, I guess so when you, you said you went to Kent then for like pre and kindergarten,
[00:11:27] Stacey: I think for preschool, I want to one. I'll preschool in Cuyahoga Falls
[00:11:37] I got my wheel and I know like, okay, I don't remember much about it, but I remember having fun, but like, I know Kent I was in a self contained classroom with some other kids with hearing loss.
[00:11:51] Carrie: Okay. Do you feel, so then you went back to the Stow and you were probably one of the only kid maybe that you knew of that had hearing loss going through the school.
[00:12:03] Did you feel. How did that make you feel?
[00:12:08] Stacey: No, I really didn't mind it so much. I'm an, I think what was really great is that I had really good friends in the classroom and my teacher in Echo Hills were amazing. I love my first grade teacher for first grade and they all wore FM system in class. And I think. No. I have to really great friends who were extremely supportive.
[00:12:32] That they would, they love to use the FM system and that kind of thing, you know, like a lot of fun. And then I was really involved too. Like girl scouts in elementary school and other activities later on, but I don't think that. Nobody, they didn't like me because of my hearing loss. And I had no idea.
[00:12:50] They were all really nice about it and I don't really know open about it. They were all really accommodating. So I think I got lucky. So, and I think that, no, I don't think I've ever really noticed anybody being bad to me about that because I'm not hearing loss. But the other thing I thought was really great is because of my mom.
[00:13:10] She, I don't know how old I was, but we'll probably have another acquaintance or friend in common. Um Tony, I don't know if we remember her, but when I really let all, I. Maybe I was hoping you'd be, I have no idea. My mom introduced me to Tony’s mom
[00:13:31]probably a few, like a few years older than me. So she was really a great role model for me, I used to go play with her all the time. She's super outgoing. She super like a really good advocate for herself. If you couldn't hear something, things were fairly outspoken about it. You need to look at me and you know.
[00:13:53] So I can see you or whatever really great about it. I don't know. I'm honestly really shy. You both do a little bit of that too. And then I think meeting people like you along the way. Got a little bit older and more mature than got to become more my role model. That way I can. Okay. This is what Carrie does, and I can do that too.
[00:14:18] But I think that really helps just having a really great core group of friends who are really understanding of My hearing loss maybe how to communicate with me and also having other parents who also have hearing loss . And now my mom and natural communication though, are all, there's a whole bunch of other kid
[00:14:40] I was the oldest one, but there are others were close in age to me. So that helps
[00:14:45] Carrie: too. Yeah. That does always help to know that you're not the only one out there and to be able to mentor those who are younger, but then have those who are kind of a little, a step ahead of you to look up to you and, and to talk to as well.
[00:15:02] So kind of moving along to like, okay, you did your elementary and your high school career and graduated. When you were 18, you decided to pursue a cochlear implant. So what made you decide to do that
[00:15:19] Stacey: And that's new. Okay. right now couldn’t wore but at the time I think we're three or four. One of the kids in a natural communication had a cochlear implant and that thinking that implanted one might be one or two.
[00:15:36] Really early and who came over to our house and have Christmas tree. And we have, I mean, my parents own a hallmark store, so have all these musical ornaments and everything surely on tons of great ornaments. And he found one of my one of my ornaments which was a musical ornament. And it will push a button and then he pushed the button again and he is clicking along in tune.
[00:16:08] And now I was 17 and I was thinking if this kid can do this you know and he is in tune. I've got a pretty missing something here. I'm missing something because I can't do those. I can't, he’s in key. And so I started investigating the cochlear implant my senior year of high school, and really to think about not no.
[00:16:39] A lot of people like me who grew up auditory, verbal who were getting cochlear implant later. They were all like all the different kinds of backgrounds. I would like, I have no idea what's, but I'm thought was kind of my main motivation of why I still don't understand, but music sounds a lot better.
[00:17:00] So but but that was kind of like the turning point for me in getting a cochlear implant. So, wow.
[00:17:08] Carrie: that little Christmas ornament. Right. Who knew.
Yes it is a special ornament for me.
[00:17:17] So can you share a little bit more about that journey of the next step? So you kind of started thinking about it. How long did you think about it for, and then just share a little bit about your appointment and your next.
[00:17:33] Stacey: I think it happened. When has it been in the spring time? She knew y'all. I started thinking about it and I started investigating and, you know, like, I don't know, going for appointments and testing.
[00:17:46] I kind of remember like going and listening to a bunch of words and having to do that No other point. And I remember meeting Dr. Rizer who was an amazing surgeon. And I remember asking if there is anybody that I can talk to, and they connected me with like, what are they getting the names of? Maybe some young adult who knew sign them with, but really had no auditory experience before the cochlear implant. And I started asking about AG Bell and AVI Auditory Verbal International and kind of seeing the other teenager who got their cochlear implants like later even young adults who used spoken language and all that kind of hard.
[00:18:34] I, that, no, they all have really different experiences. Some of them are like adding any listening at first or I felt them. And it took a long time to know, understand anything and at that, okay. I really have no idea what to expect at this point, but well, I still have to still have the one good ear and so if it doesn't work.
[00:18:58] I have one good year and I am, I think my mom worried a lot about know what could happen and. My worry was a little bit different because I was absolutely terrified of like needles. I was terrified of like having the IV. Like my biggest worry was about an IV. And not like what would happen afterwards, but well, what, what happened to me?
[00:19:27] But no, after about a week after my 18th birthday, I got my cochlear implant surgery . I. Came home on the Same day and recovered. And about a month afterward in July, I got turned on. And I'm kind of interested in me cause I'm really nice about it. And I would kind of remember this because on the same day that I had surgery
[00:19:52]there was an older gentleman who got implanted and they also wanted to make sure that we were also getting activated on the same day and it was really nice to see him again. that to see him again and had shared that same day, that same family. And, but the interesting is that now, in the very beginning they turn me on and all that
[00:20:15] So they were like do you to hear that. And I'm like, hear what? They were like there is a radio. I'm like, I don't hear a radio. I don't hear it. And You know, when you have that. And of course my mom getting really nervous. So on the way home in the car, maybe half an hour after the appointment, which was in Warren which is about an hour away [00:20:37] My mom has done, like testing me, you know, like csan you hear me hear me and just don't ask me I'm repeating stuff to her. And I said, okay, what can I hear? Like, I think maybe that is a fire engine or an ambulance or some kind of emergency vehicle or something, I don't remember what it was and like, okay, well, but then all of a sudden you begin to hear.
[00:21:01] All of the different sound. You never knew where they are. Like I went home and I turn on the stove and I'm like, oh my gosh. Now the pilot like really annoying. It sounds like turning the stove on and off. I opened a bottle of pop and I didn't know when to open the bottle of pop, but don't make the shushing noise.
[00:21:21] What are the carbonation escapes, but there's other things. But the other thing that was Important for me was that no, I really love musical and I was a really big musical fan, like my high school year, like the Beatles, Tom Petty and musical and musicals all over my goals too. And so if I'm out of shows, I watch like all my favorite musical, like, okay, I'm going watch all of these just in case like.
[00:21:54] There's definitely work out. I still have the memory of, I can leave. So like a month after I activated and I'm like, I'm going to try that. And I'm going to try this. I am going to watch the Sound of Music. So there's a song Climb up Your mountain, which is sung by. I don't even know who sang by, but. Opera singer.
[00:22:16] Right? So we, before the cochlear implant if you kind of like, wow, like, wow, amazing. Because before my cochlear implants should go up the notes, then we got really high. Right. But another limitations are hearing aids. Well that after a while it kind of clip like different frequency. Right. And so. So, first of all, our, until we come back, then I thought that was completely normal before my cochlear implant and I'm watching this afterwards and I'm like, oh my God.
[00:22:49] Oh, boy, her voice is not stopping anywhere so amazing to me. And I liked if it's so cool. And now there are all these moments you really don't know like how much better you do with a cochlear implant. I think not if I'm on the phone with a friend of mine for half an hour, maybe a few months afterward and I hung up and I was like, oh my gosh, I was just on a phone with a friend a half an hour, 45 minutes, like a long conversation.
[00:23:19] And was easy. Like I didn't have no, no, the walk of heart. I got not that well before the cochlear implant, would have been really difficult to do so. Just a neat journey.
[00:23:35] Carrie: Yeah. No, those little moments that you just described are so exciting and makes you realize like that difference between having the cochlear implant and.
[00:23:48] what The hearing aid can do. And it's so, so different
[00:23:51] Stacey: different. And I felt, I mean, and I've still used for, because I got benefit from both, but like, I I'm really glad I never been more grateful than this past year. Hopefully I'm fat because I, I should think about the time when my, hopefully when cochlear implant battery died.
[00:24:17] And the most inconvenient places. If people are wearing a mask and I'm like hang on a second. I knew I put a battery in so that I can hear you., And I'm talking to people. Yeah. I mean, not all easy, but a lot easier than I think it would have been with hearing aids. Because I'm able to follow a lot of conversation, even when people are wearing a mask and that's not an ideal listening situation at all.
[00:24:44] Carrie: I feel grateful. Even though it happened, the cochlear implant for me happened right before COVID and the pandemic and masks. And I felt like I was still getting used to the cochlear implant, but at the same time, It was my cochlear implant was my stronger ear. And I depend on that more so than my hearing aid itself.
[00:25:09] So before we go on, I wanted to talk a little bit about your audiology career too, but I just want to ask what benefit do you find from keeping the hearing aid on?
[00:25:22] Stacey: I want to thought. I definitely, I kind of go back when I kind of explain it, is that with my one, analogy, I got it. Now with my cochlear implant.
[00:25:36] I got really, really fantastic. The middle and high frequency and when she, oh my God, I. Yeah, I think that I'd have been a long time since I played a piano. I'm like time to imagine the chord, that to be a math and a, to high two frequencies are. What the cochlear implant really gives me a really great high-frequency information.
[00:26:03] A lot of really good mid-frequency information, low frequency information, not a switch, but with the hearing aid. I got really rich information from low and mid frequency, a lot more of robust. So things sound a lot more full, and I know how to like I think even listening to music, it could feel a little bit, what sound for music for you have a nicer quality and tap into people.
[00:26:31] The voices sound much more full, and I've still got some, some localization. Oh, but no, but I want their sound quality for me.
[00:26:44] Carrie: Yeah, I do. I was just interested to hear what you had to say since you've been a bi-modal user for many, many years, and I haven't been, but that's what I've noticed too, is people's voices sound more. I guess some natural for me. And a, or a fuller, robust is a good word too. And like you said, with the music, it's like, the bass is coming into this ear, my hearing aid here and that all the treble is coming in this ear.
[00:27:15] But the cochlear implant, but I, as of right now, I know this is the right decision for me to be bi-modal and if it was. switch you know, decrease a lot in my hearing aid ear, then I would definitely consider being bilateral. But right now it doesn't make sense to be bilateral, but me that's
[00:27:36] Stacey: how I feel too.
[00:27:37] That's kind of what I told myself too. If for some reason my hearing got worse. My hearing aid I would get a call plan, but right now it just sounds like. Well,
[00:27:49] Carrie: it's good to have that validation from someone else too.
[00:27:57] So kind of moving forward a little bit, you graduated from high school and then you eventually became an audiologist, but how did you decide to go
[00:28:09] Stacey: on that path? So what happened when I was sixteeen.
[00:28:15] So let me back up and just by saying my mom, is from the Phillippines and check different connections in the Philippines. And somehow I don't remember howteacher for the deaf in the Philippines who wanted to have a conference about auditory verbal therapy. So they invited me and my mom, Don Goldberg with an auditory verbal therapist.
[00:28:43] Faculty member at the part of the Wooster and Catherine Macinroe who was an auditory verbal therapist at the Bee Bee Center they invited all of us to go speak at their conference in the Philippines. So what happened is I was sitting next to Don and they had an ENT who've got up on the stage and starts saying children who are severe to profound and who are deaf will never learn to speak.
[00:29:12] And Don and I look at each other and say okay, this is totally not true. And I kind of decided at that point, I want it to be an audiologist and possibly a pediatric audiology that, so that way I could know mix of actually knew that they were fun, but do they cater to a deaf and hard and that they could not in fact learn to speak that kind of how I started you know really becoming really serious andinterested about audiology.
[00:29:46] Carrie: Wow. That's, that's a great story. And to think, I know that you are still connected to Don Goldberg as well, and to see how. All of that came full circle for you.
[00:30:00] Stacey: the Other thing about Don, is that not the first time I met him. But when I wanted to BeeBee Center, he was the auditory verbal therapist that my parents were observing.
[00:30:14] Wow. At that age, maybe one to two years old they were observing Don. Obviously the first time I met him I don't remember him at all. And then our paths crossed again when I was 15 at that conference. They all, everybody kind of knowing contact and one of my mentors, so definitely kind of cool. So that, yeah, so that's my main motivation for becoming an audiologist.
[00:30:43] is was that conference with Don, Catherine McEnroe, Matthew Miller, and my mom and the ENT. Wow.
[00:30:50] Carrie: Yeah, because the ENT had the wrong perception about and making an assumption about all kids who had deaf and hard
[00:30:59] Stacey: of hearing. And that's should not be happening now, especially with technology.
[00:31:06] Carrie: Right. I think it still does, but I think, you know, it's great that you went into this because families need to be informed of what all of their options are.
[00:31:16] And then I think it's important that they have the opportunity to meet individuals who are deaf and hard of hearing who are adults so that they can talk to them and ask them questions too. So being well-informed parents is a good thing for their children.
[00:31:37] Stacey: I agree. And I think it's really important for audiologists to put parents in that planning. I know looking back on my parents experiences
[00:31:41]they didn't have that, and that was pre internet going to card catalogs and kind of no time so that I was doing a lot of that research on their own. And that's a very difficult learning, I think for parents who made maybe a little bit, usually now the internet, but definitely not back then.
[00:32:04] Carrie: Right, right. Yeah. And maybe now it's even information overload. So you get so much information and you don't know how to navigate it too. So that's also kind of the other end of it.
[00:32:20] Stacey: Right. And we got at all. No. Yeah, no.
[00:32:27] Carrie: So tell me a little bit about. How why you decided to pursue your PhD after getting your
[00:32:35] Stacey: AUD [00:32:37] So basically I've kind of had to go back to maybe undergrad too, because I think know, in undergrad too, I obviously I went to Wooster because of Don, but the one thing about Wooster is that and. I really didn't quite understand that completely until my while into my senior year at Wooster, that when you go to wooster the
[00:33:04] capstone path, which is basically a thesis, you do something kind of aligned, like a master's level student to do so that cut up my exposure to the research. At that time to all fall apply for Fulbright grant to do you research in Germany and there has always been a little bit of
[00:33:24] It would research in my blood, but I already know, after I graduated from Wooster I'm like I am never doing research ever again in life. And I went into to Akron thinking, I'm just going to. Got my degree and become a pediatric audiologist. And my third year I gave a presentation in class and that different, really fun, being able to teach people something in what.
[00:33:54] I think I was doing a presentation about my research in Germany. I think that's what I was doing. And I'm like meaning fun. I'm really kind of like the teaching thing. So I've started thinking more about a PhD and because I wanted to go on to teach. So. After I graduated from my graduate degree
[00:34:18] . I decided not from Akron. What am I thinking? I'm kind of thinking how to kind of stay when Kent State. Wait, if I'm Akron I decided to get my PhD, at Kent state university. And because I wanted to teach eventually.
[00:34:37] Carrie: And now you're at Central Michigan. And can you share a little bit about what your research and your teaching focus is at central Michigan?
[00:34:47] Stacey: Yeah, so my teaching is primarily and I taught a lot of classes at CMU. I got to see I'm you, but down some of the stuff I had taught have been cochlear implant. I've taught aural habilitation though, for my thing to offered to, to me. So it's my third class is a research methods class. And I got assigned to when I first started that I assigned to a pharmacology class, which I was like, oh my goodness.
[00:35:15] Okay. But no, what I've to kind of love it too. I've gone through that. Really interesting, really fascinating. And I think I'm really lucky in that I've been able to teach classes. I like, and different times I'm covering for people while I'm taught different classes. I'd be in and out of different course.
[00:35:38] And I've also taught other things throughout the time of CMU, like anatomy and physiology and. Educational audiology or when you cover for somebody went on sabbatical on the her leave for the class hearing disorders, a lot of different courses I've taught, but my main core courses have been cochlear implants or rehab, research methods and
[00:36:02] the pharmacology and tinnitus we had to add tinnitus we intended to add. We also started teaching the undergrad course. What I started teaching last year and teaching this year with communication sciences and disorers. And differences in society with the kind of interesting core. So there've been a lot of variety, which I spent a lot of fun and some their stuff I have done.
[00:36:32] And my, I got maybe my passion. No, I guess I finished that in a Kent state university when I was a PhD student. And. Something that I, I am still no find, very exciting. It was something that after we blew out of a fun show with another person who was a PhD student, but in a totally different department she is or like a fashion professor and to like getting a PhD In the education department and we met in a statistics class and she's taught me knitting being really interested in fashion.
[00:37:17] She's like, what are you doing? And someone has to do the other long thing that too, but what happened? We both liked each other so much while I. I want to throw something together, but what the heck can we do here in fashion? And I'm an audiology, what the heck do we do? Totally different kind of feel. And we don't reach out to nothing.
[00:37:40] Like, like what do teenagers want from their hearing devices and how do they view their hearing device and that kind of thing. In Minnesota for a fashion conference, fashion and health symposium. And do I do a couple other talks about disability and fashionable prosthesis and legs
[00:38:06] or clothing for people with disabilities? Shall we start looking and kind of exploring this idea of disability and fashion and that intersection of fashion and fashionable. You know assistive devices and accessories for people on disability, including hearing loss and what really grew out of it really exciting. I think, and what a museum exhibition called disabled beauty the evolution of beauty, disability and ability and museum exhibition, that feature.
[00:38:44] Thanks. We knew. Cool. Hearing aids and earmold and
[00:38:52] adaptive clothing for people who have, have other disabilities, maybe, wheelchair, you show all the different teams or walking and all different kinds of. I didn't and that walk, and it's still like my passion. And just sit in the topic at that intersection of disability and fashion, because I think when you have thing that all know, it can very big time to encounter stigma.
[00:39:21] And we thought that. No, you got to be me, you know, and I, some of my students have been very interested in some of the topics I'd want to do and how we thought path along looking at now and what know, what do you kids want basically. And then in some of the other stuff I've been involved with happened things like reading and learning , that kind of thing with hearing loss
[00:39:55] Like some stuff. the dissertation. We're definitely, I'm bilateral cochlear implants. I'm really interested in the topic. And I actually developed interest in other things and I developed aural habilitation other things I'm really interested in . I think I would continue to kind of go down back that direction. And the other than that one really exciting for me is seeing what kind of ideas my student come up with?
[00:40:20] And some of them will come up with some really cool stuff. And I'm like, wow, impressive and amazing what you guys are doing. And they got really excited about it, even though they never go on for a pH D, which is okay. No, I have a couple who are going for PhD, like now or planning to, but they were kind of exploring.
[00:40:40]the idea that they are interested in, but that's been really fun for me. That, that pot,
[00:40:48] Carrie: yeah, all of that is so great. And I think. Your perception, like your own self journey of living, you know, and growing up with hearing loss really plays into so many of these different insight that you can bring to the profession that not everybody can.
[00:41:08] So I'm sure your students who have you in class, you're able to share some of those personal insights along with the research that really. Makes that information stick for people, so being able to tell a story about your own style while you're sharing research can make students remember that research more because they tie it into a lot of this storytelling.
[00:41:32] Do you feel that?
[00:41:33] Stacey: Yeah, I think that's really exciting. And when they got really excited about what they're doing or
[00:41:44] collecting their data and it's so much fun to see that and kind of see data and kind of how they're thinking about what the. Right. That's a lot of fun for me.
[00:41:57] Carrie: Yeah. And I just want to tell you too, that the disabled beauty, I was able to come to your kickoff. Was it like your kickoff event at Kent state when you had that?
[00:42:08] I mean, it was like a dinner and it was a reception and it was it was so amazing. And I was able to meet the other professor from the fashion education department that you are not progressing with. It was true the PhD student student at the time. It was just amazing the setup of what you guys put together and they had on display.
[00:42:30] So thanks for sharing that. And I'm glad that it's still a part of what you're interested in and moving to so great
[00:42:38] Stacey: fun, so much fun to kind of bring to you. Into contact half in a lot of really interesting people in the community and the disabled community, and a lot of fun now kind of seeing the different factor about know how they viewed on or how they'd be fashionable have been many, not that really interesting conversation about disability and perception of.
[00:43:07] Carrie: And the, in the show notes, I can put that link that you shared with me about the disabled beauty and they, people can go to that link and find out more information about that project as well. So just to kind of wrap up, because I think we're coming up on an hour and I just wanted to ask you the anything else that you want to share that I didn't ask you, that you were hoping I might've asked you.
[00:43:34] Stacey: I think some of the things I kind of think are important if, you know, I think for anybody whether they are a parent or person with hearing loss with it not to underestimate them. And don't have a lower expectation, I mean, I, I know that you know. It's good to challenge yourself. It's good to try things. Like, no, I decided that I wanted to learn German and that kind of thing.
[00:44:01] So we got to and live in Germany for a year and that kind of thing. And or you want to try things like music or whatever, just kind of explore it all is really important for the Chinese. See it like that's the most fun thing is making sure you like it. And the other thing I will say, I know both you and I have the same opinion on this thought is really important to have a community of people who have hearing loss h that you can relate to.
[00:44:35] They are the ones who will be able to like understand what new going through return, go for them for advice and help. And they can be a role model. If you can do a little model for somebody else. I think even if they could see that they're doing really well, and they're the only kid with hearing loss, make sure they have that connection with somebody else.
[00:44:55] We got that many helpful my top bank.
[00:44:58] Carrie: Oh, I 100% agree. And I'm so glad that you're part of my community.
[00:45:03] Stacey: I'm so glad. It's all. It's so good to have, you know, one of my role model and my colleague that I combined. What about the, well, I can ask a question or whatever, really great. I've
[00:45:17] Carrie: enjoyed collaborating on different projects and being able to be at different conferences with you.
[00:45:23] And again, being able to reach out to you when I was going through the cochlear implant journey and our little community of cochlear implant using. You guys were able to tell me what to expect. And I so appreciated that. So your comment about making sure you have a community is important to have. So again, Stacey, I just wanted to say thank you for being a part of the empowEAR Audiology Podcast.
[00:45:51] I think this has been a wonderful conversation with a colleague and a friend, and I just want to thank you for being a part
[00:45:57] Stacey: . Oh, thank you so much for having me. I know we could talk forever. I know let's catch up sometime other time too.
[00:46:06] Carrie: I'm sure that hopefully we'll be able to see each other in person at sometime in the future and we'll be able to catch up that way too.
[00:46:13] So thanks again.
[00:46:15] Stacey: And thank you so much. Good talking to you.
Announcer: This has been a production of the 3C Digital Media Network.

Episode 30: empowEAR Audiology - Dr. Anita Jeyakumar 

[00:00:00] Announcer: Welcome to episode 30 of empowEAR Audiology with Dr. Carrie Spangler.
[00:00:16] Carrie: Welcome to the empowEAR Audiology Podcast, which is part of the 3C Digital Media Network. My name is Dr. Carrie Spangler, and I am your host. I am a passionate audiologist with a lifelong journey of living with hearing challenges in this vibrant hearing world. This podcast is for professionals, parents, individuals, with your own challenges and those who want to be inspired.
[00:00:45] Thank you for listening, and I hope you will subscribe, invite others to listen and leave me a positive review. I also wanted to invite all of you to visit and engage in the conversation on the empowEAR Audiology Facebook group. Transcripts for each episode can be found at www dot 3, the number 3, C digital media network.com under the empowEAR Podcast tab.
[00:01:19] Now let's get started with today's episode. All right. Welcome listeners to the empowEAR Audiology Podcast. Today I have a special guest with me, Dr. Anita Jeyakumar. And I'm going to tell you a little bit about her history. Dr. Jeyakumar works for Mercy health otolaryngology in the Youngstown area and Ohio.
[00:01:40] She received a bachelor's degree in chemistry from Belmont university in Nashville, Tennessee. She received a master's in chemistry degree from Tennessee State university in Nashville, Tennessee and received a medical degree from Maharry medical college in Nashville. Dr. Jeyakumar completed an internship and general surgery and a residency in otolaryngology at Strong Memorial hospital university and Rochester and Rochester, New York.
[00:02:11] She completed her clinical fellowship in pediatric otolaryngology at the Cleveland Clinic Foundation in Cleveland, Ohio. She has over 20 years of experience and brings the new service line of otology and the advanced treatment of hearing loss to the Youngstown, Ohio area. She is starting a mock high disciplinary clinic for patients with hearing loss and a cochlear implantation and hearing rehab program.
[00:02:38] Dr. Jeyakumar’s current research into a study focused on the genetics of hearing loss And quality of life projects. So welcome to the empowEAR audiology podcast. And thank you for being here today.
[00:02:53] Anita: Thank you for having me very much excited to share this experience with you. Yes. And
[00:02:59] Carrie: I believe I always like to start out my podcast of how we know each other.
[00:03:05] And I think we met each other maybe around four years ago. Does that sound right?
[00:03:10] Anita: That sounds about right. And we have continued. It's like, I'm glad we like each other because we can't avoid each other. Cause we overlap all the time.
[00:03:20] Carrie: We do, we definitely share similar interest in a broad field and we both save on the American cochlear implant Alliance as the state champion for Ohio.
[00:03:31] Then we have our. In common. And I'm excited to talk a little bit more today about unilateral. And I think one of the big questions that I got as an audiologist, and I don't know if you get this as an otolaryngologist, is that while you have one good year, so you're good to go. Do you ever hear that?
[00:03:54] Anita: I hear that all the time.
[00:03:55] If I had a dime for how often I heard that I would be a very wealthy person, you know, just to kind of give context, when you talk about from a pediatric perspective, it's a little bit different than when you talk about it from an adult perspective, but from a pediatric perspective, it is not actually super rare.
[00:04:14] So about one in 1000 children are born with single-sided deafness. And that incidence goes up with age. So by the time children are age six to 19, about 14% of children can have some level of single-sided deafness. And we've known since the eighties really there's a pretty prolific author from then called Bess who wrote about children who had significant issues, both educationally, socially, cognitively, and behaviorally from single-sided deafness.
[00:04:46] In adult world, we often talk about the cocktail hour. So for anyone who likes to go to parties, whether you imbibe or not when you go to a party, you're typically surrounded by a lot of people, but your two ears then give you access to that full room of people. And there's a lot going on around you and your ears and brain learn to filter out what's important.
[00:05:08] And what's not for a child that cocktail hours sort of mirrored on a daily basis in the playground or a classroom, when a child goes to a playground, they are surrounded by the appears and their teachers or whatnot. And when you have single-sided hearing loss in either situation, you only have access to half of the information.
[00:05:28] So you're working that much harder to try to figure out what the context of the conversation. What the nuances of the situation are, and it's not unusual that you will get some of it wrong. So a lot of people end up being able to shy or reclusive because they don't want to put themselves in those environments, whether on the playground or in a party that expose them to what are perceived as sort of traumatic events.
[00:05:56] Quite frankly.
[00:05:58] Carrie: Yeah. That's a good point about playground or cocktail hour as you describe it. I think one of the things that I hear from an audiology perspective is that Parents or teachers, so, well, one on one that, you know, they seem to hear me quite fine. I don't see them having any difficulties. How do you explain to families or to other significant people in their life that there is more of an impact because they're not seeing it.
[00:06:32] Anita: So I think the best thing is twofold. One is that I often have what I call my poor man's video of what hearing loss sounds like to a person, because particularly when it's a family trying to make decisions for their child, you're really talking to people who probably have normal hearing most of the time.
[00:06:52] So they're trying to make a decision that's really important about something. They totally have no understanding of. So one I play a video? Then too, I try to relate to what's happens daily. So let's say Jack has a single sided deafness. I asked them things like, how does Jack do when you call him from another room?
[00:07:12] How does Jack do when you give him instructions? And he can't see you? And what I universally typically will get is some kind of acknowledgement that Jack does not do well in those situations. And they assume it's because Jack is being a kid and not listening. And of course, that's an element of that.
[00:07:31] It's not like these kids are always the model citizens of the world. But you know, it's really that Jack cannot follow an instruction if Jack doesn't know where the instructions are coming from or worse yet what the instructions are. So I try to relate on that level, because it's not too many families that don't want to relate to their loved ones, whether it's a child or a spouse or what not.
[00:07:55] So once you can get them to say that all these situations are happening. So these are some of the adjustments you want to think about taking, like, for example, exactly what you cited, Carrie that They will do better if you talk to them face to face, don't ask Jack for a bottle of water when you're in the kitchen and he's in the living room.
[00:08:14] Cause Jack won't know what you want, but if you go to Jack and say, you want a bottle of water, Jack will probably get you a bottle of water. You know? So things like face-to-face communication, the ability for them to integrate their lip reading and social cues are all going to be very important for them to communicate on a one-on-one basis.
[00:08:34] Now those don't solve the cocktail hour issue and things like that with echoing and sound localization, because that's the big thing that you're really losing when you don't have hearing in one ear.
[00:08:46] Carrie: So from a medical perspective, just kind of backing up, but what are some of the main causes of Unilateral hearing loss in children and then also in adults?
[00:08:58] Anita: So I would say it's fair to say that the differential for both are quite different. So if a child is born with unilateral hearing, Oftentimes a child is recommended to have some kind of a workup, which includes things like screening for congenital CMV. It has a high incidence of unilateral hearing loss.
[00:09:17] Children tend to have more anatomical anomalies. So oftentimes we get imaging because we want to diagnose those. And there's also a high incidence of Auditory nerve findings. They may have a nerve, but it's sometimes kind of what we call hyperplastic, which means it's kind of wimpy looking. So they have findings that you can actually concretely find and potentially address.
[00:09:39] If you know, they have the findings. By the time you start to get older, some of these are not as prevalent, probably acquired. And some amount of presbycusis causes more adult onset, unilateral hearing loss, you know, people don't protect their hearing at all. So there's a high prevalence of unilateral hearing loss in people who use weapons because they fire guns and don't necessarily use hearing protection.
[00:10:06] And those hair cells, as you, and I know are, are very fragile and don't like being traumatized. And so when it's gone, it's gone. So. Pathway and the mechanisms kind of are different, little different between kids and adults.
[00:10:20] Carrie: Yeah. So are there other, like co-existing factors that sometimes are red flags with unilateral hearing loss, medically.
[00:10:31] Anita: So medically, probably congenital CMV is the biggest one. Because unfortunately congenital CMV is something a child is typically born with and they get it in utero, but most places in our country do not do screening for congenital CMV because in the mother. It manifests as a cold. And if you don't know, you don't know what you don't know.
[00:10:53] Children with congenital CMV can be divided into symptomatic and asymptomatic. So unfortunately the symptomatic, maybe fortunately the symptomatic ones are a very small group. Those kids usually will show up as being really small birth weight or small head, or may have other medical issues going on.
[00:11:13] So those kids often times are identified in the nursery or in the NICU. And that testing for congenital CMV really needs to be done in the first two weeks to one month of life before you can't really rule it out. So you're in a, such a tight window. They're way more kids born with asymptomatic, congenital CMV, and those ones are often missed and there really is not a good way of finding them unless you have access to their newborn blood spot.
[00:11:41] Most states don't store that for clear periods of time. So you are kind of using some clues that you might get along the way to determine that, but you don't necessarily always know the etiology.
[00:11:56] Carrie: Yeah. Sounds like a hot topic as well, but I was going to ask you is my next question. Like, what are some of those hot topics that are surrounding unilateral hearing loss?
[00:12:09] Anita: So kind of like what we opened with, you know, back in the day, let's say the eighties. And prior they really weren't a lot of options for treatment of unilateral hearing loss. So I would say a lot of the hot topics focuses on, well, my grandfather had unilateral hearing loss and he did just fine.
[00:12:28] So why do we need to do anything for Jack or Jill? Well, it's 2021. And fortunately I will say there are options. So I think the big thing is to really kind of get it out there that, that you know, a family may choose not to exercise their options, but a family needs to know that they have options and really they have quite a range of options.
[00:12:51] So one, we do have to identify them, but hopefully with newborn screening and things like that, we can identify them effectively. Those kids need to be plugged into early intervention because it's important that the children get access to sound good Quality sound to kind of keep on target with the peers, because there's a high incidence that these kids will repeat a grade or will suffer in school.
[00:13:15] If they want to start with less interventions, things like preferential seating in the classroom can be really impactful as well as wearing an FM system in the classroom. So to provide those resources in a public school setting, as you well know, they often have to have a 504 plan or an IEP to make sure that those resources can be provided for them.
[00:13:36] And those kids have really measurable targets that follow them. A lot of these kids will need speech therapy. And then when we start to really go into the individual interventions, anything from a specialized kind of hearing aid called a CROS hearing aid, or a specialized kind of conduction hearing aid called a Baha or even a cochlear implant, which was FDA approved in 2019 for single-sided deafness five ages five and above are all options.
[00:14:05] And I think it's important for parents and families to understand that the options are there.
[00:14:11] Carrie: Yeah, which kind of brings me to my next question. And I know you've been heavily involved in the cochlear implants for many years, both children and now adults. But for kids who are five and above and even adults, what is a good candidate for a single sided deafness kid or an adult, I guess maybe talk from the child perspective.
[00:14:35] Anita: Okay. That's such a great question. And I think. Depending on who you talk to, you'll probably get different answers. So, as I mentioned, I think the FDA approved for five and above now, majority of our data really comes from Europe. Europe is sort of 10 years ahead of the US in terms of implant technology and outcomes.
[00:14:55] And what they seem to show is that even for single sided deafness, the younger, you implant them the better they do. Now the confounding factor. That makes sense for those of us in the implant world, because the sooner they have auditory stimulation in the affected ear, the better their brain knows what to do with the sound.
[00:15:13] The dilemma is when they have single-sided deafness, really it's the brain that hears. So the brain has a good ear that it can hold on to that whole time. So how do you focus a rehab option? Or focus the attention on the implanted ear. And I don't know that we have conclusively figured that out for children.
[00:15:35] Fortunately implants, if that's the route they go, they do have streaming technology. So really beyond just putting the implant in the child, there needs to be a dedicated rehab program for the child to use that ear. Otherwise, guess what? The child is always going to have better sound in their normal ear. And their child is always going to listen to the normal ear.
[00:15:58] The same really goes for adults. You know, I think auditory the duration of auditory deprivation matters. In adults, there's some literature saying that anywhere from four to seven years of auditory deprivation, meaning they've had no access to that sound can negatively impact the outcome. The confounding factors are always that most adult implant programs in our country don't have.
[00:16:22] Rehab as part of an implant program. So without giving them the structured guidance of how to use the new found access to sound, adults really struggle. You know, this is not necessarily all intuitive. It might be intuitive to you and me because we are in that world in such a different way. But it is not intuitive to the average adult who is seeking this.
[00:16:46] They just want access to sound on both sides, but without that rehab focus, streaming everyday focused therapy to that ear, they tend to always use their better ear and really rely on this only as a failed state. So that mechanism probably really needs to be even in better place for both adult and children.
[00:17:06] Carrie: Yeah, that's all good information. So one question I have out of that is you talked about that time of auditory deprivation from like four to seven years. Whatever, but for kids, if the child was using Some sort of amplification and that ear that was has the hearing loss, whether they, I was stimulating one hair cell.
[00:17:32] And that's it. Have you noticed, or is there any research that shows that they may Benefit or take, you know, ownership of that cochlear implant more so than someone that's never used any kind of technology in that ear?
[00:17:49] Anita: Yes, absolutely. And I think some of that is an extrapolation from bilateral cochlear implants, or just an unilateral implants and older children for other reasons.
[00:17:58] The reality is that the sooner you teach a child to leave a device on them, especially if they have a little bit of auditory benefit. Yeah. It may not be speech. It may not be clarity, but it's just some auditory awareness. Then the better they're going to accept something that'll give them more. The reality is when we first put an implant on anyone.
[00:18:20] It sounds awful. I don't care what we say. It sounds terrible. You know, you talk to anyone who can verbalize to you. They will say it sounds nothing like normal sound sounded to them, but they have to push through it. And if a child never accepts it in the first place, they're never going to get to a point that they push through it.
[00:18:39] Cause eventually it'll sound Greatish better than what they had before far better than what they had before, but they have to push through all of that. And that's really what the efforts of our audiology team or a speech pathologist both come in because they have to tinker with it to really get each person's individual program to be what is optimized for them.
[00:19:01] And there really is not a one size fits anybody. It has to be individualized to each person and that's where the dilemma with the young kids come in too. It's like, how do you get the feedback from a three year old? That the sounds awful when the three-year-old is saying five words, you know, it's, those are challenges.
[00:19:21] So there's a lot of effort that has to happen behind the scenes to really show that it's going to be beneficial. I think with the right infrastructure, it really is. I'm a believer for sure. It's just, I don't know that we always have the right infrastructure in place.
[00:19:38] Carrie: And you talked a little bit earlier that there are some other options that families or adults may want to try as well, such as a CROS type hearing aid or a bone conduction devices.
[00:19:53] What has been your experience with those types of devices or is it pretty individual? I have, depending on the person, but that is what.
[00:20:03] Anita: So, I guess I'll start with one is that I, as a cochlear implant surgeon probably have an innate bias against some of those devices. So maybe you might need to take everything I say with a pinch of that salt and it now the thing, but the reality.
[00:20:20] Before coconut implants became FDA approved for, you know, single-sided deafness. There was no FDA approved option for single-sided deafness for the affected ear. The only options were technologies that basically routed sound from the affected side to the normal side. So both the CROS and the Baha based on technology that doesn't use the affected ear at all.
[00:20:45] It just gets the sound from one ear, the affected ear and routes it in different ways to the unaffected ear. So the issue I've had, I think not, especially now that's the cochlear implants are an option is that you really are not getting information on that side. You're not using the ear that you were born with.
[00:21:05] Let's put it that way. You're basically your good ear is doing all the work for you and you're learning to say, oh, okay. That information was from my affected side. This information is for my good side and it's really, really confusing. And that's certainly what I saw in my patients is that yeah, there were certain situations that had worked.
[00:21:27] It's definitely not easily accepted. I would say both of those technologies have also come a long ways. When I first came out of training, I would have said I would never, ever, ever prescribe a CROS to anyone because they were awful. And they just seem like they muted the good ear as opposed to help to anything.
[00:21:47] But both of those technologies have become so much better. That the nice thing about them. The one benefit that they both have is that you can try them without surgery. You know, you can put hearing aids on people and try them without necessarily saying, this is what they've committed to for life. You can try a bone conduction device on a soft band that they would wear and get.
[00:22:09] Yeah, it's not a hundred percent what it would be like if it was put surgically, but at least it's a really good sense of what it could be like. That the cochlear implant is a leap of faith. You know, you have to say, okay, this is what we're doing, but you can't really test it out until you just do it.
[00:22:26] And I think that's probably the big advantage of the nonsurgical or less surgical approaches is that as a patient, I do think they should march along the algorithm, you know, they should try the non-surgical ones at least briefly to get a sense of, do we see any improvement in the. Does the child learn to wear this non-surgical thing well?
[00:22:49] before we put on the useful surgical thing, and I think there's value in the story for them.
[00:22:57] Carrie: Yeah. And I think that commitment piece that you said is so important. So if they're not going to be committed to a more non-surgical outcome, are they ever going to be committed to a surgical outcome?
[00:23:12] Anita: Yeah, the reality is we are Americans and we live in an instant gratification society. So when you tell people that they have to go through this one big hoop, but that leads to 800 little hoops, you know it's not necessarily what they want to hear. They are willing to go through the one hoop, but they want it to be done.
[00:23:33] They want it to be taken care of. And unfortunately with any of these options that. It really, we're talking about a lifetime of a journey. You know, I tell our pediatric patients and their families that you were going to see this through to high school because your kid needs to finish high school. A lot of children with hearing loss don't get that opportunity because the system doesn't work for them.
[00:23:56] Not because their intelligence is remotely an issue, it's just a system fails them. So that applies to the kids with single-sided deafness and the, and the literature shows that.
[00:24:08] Carrie: Yeah. I, I know it's been such a hot topic along, along the journey of working with families who are going through these different decisions.
[00:24:20] So if a patient decides to do nothing and you kind of mentioned this earlier, what can we do to still be supportive?
[00:24:30] Anita: So I, I think that is complete, you know, we have autonomy in our world and I think as long as they've heard their options and they decide to do nothing, that is not the worst thing in the world.
[00:24:46] I think things we need to do, we need to We need to not dismiss the patient just because they've chosen to do nothing. Doesn't mean they're not a patient still. We need to watch and see how they're doing in school. These kids have a high degree of depression and anxiety. So we need to make sure that we're not missing the boat on other things going on, that we can support them with.
[00:25:07] And it might be things like support groups, you know? Yeah. They may not be wearing technology, but maybe they'd benefit from meeting a peer who also has single-sided deafness to say whether it's an older peer that has been successful to say, how have you navigated the world? You know, what kinds of things, peers meeting peers has always been a win.
[00:25:27] You know, the biggest deficit that I always Personally is that I personally do not have hearing loss. So while I've read and read and read and I listen and all of these things, I truly don't. And you know, it's like saying a, guy's supposed to know what it feels like to have a baby. Well, good luck. You know, I mean, you can only do so much research.
[00:25:49] You really don't have an idea, but the peers know what the peers need. And there's something to be said for a support system that they can bank on. The one caveat, I would say the only one that probably as far as we know right now that does have a time. Limit on it is if someone is born with single-sided deafness and they don't, and the parents say, you know, they're doing okay, they're in speech, they're meeting their milestones.
[00:26:15] We're going to wait for them to have this decision as an adult. Well, that decision may not exist as an adult. And that's the one thing that is really hard for parents to understand. They're like, well, it's the same anatomy. It's the same brain. They have access to sound on the other side. The literature just doesn't seem to support that.
[00:26:35] Giving them access to sound when they're 10 plus years into a journey is going to be successful. But there are lots of caveats to that. We don't know if it's because they don't have therapy to match it. We don't know if it's because the commitment is not there. We don't know. We think that there is basically a.
[00:26:54] Neuro-plasticity that goes away why that would go away when they have access on one side, don't know, but that's just the data that we have. So I would say that's going to be an evolution. Hmm.
[00:27:07] Carrie: Interesting. So there's. I guess one of the questions that I wanted to throw out at you is that, is there anything that I didn't ask you that
[00:27:18] Carrie: I should've asked you about unilateral hearing loss and what, you know
[00:27:24] Anita: gosh, I think.
[00:27:26] You know, how do we create more awareness among our peers is what I'd say. I think, you know, we are an informed clientele, probably the people listening to this podcast, me and you. This is what we do on a daily basis, but how do we continue to keep the conversation going? How do we make sure our primary care providers know that this is an issue that their parents and patients deserve a conversation?
[00:27:55] How do we make sure general audiologists who haven't been in the CI world are made aware of that the conversation has changed. So people who are struggling past their hearing aid really should have that conversation to the next level. I think that's a nice thing about this. You know, getting the awareness out and continuing to have an open candid conversation is important because there are way too many patients that come to see me that say You know, we didn't even know this option existed and that's crazy to me that they wouldn't, but why would they, if they're not in the right circles in the right place?
[00:28:32] The other thing is a whole cohort of patients who come to talk about an implant because their insurance won't pay for hearing aid. Well, that's a whole different can of worms and probably its own podcast. But, you know, I would say that there there's some legislature going through to hopefully change some of that.
[00:28:50] To me personally, it's very exciting. It breaks my heart. When I see people come through and I think to myself, gosh, all you just need is a good hearing aid. And we have good hearing aids that you haven't reached the level that you should be talking to an implant surgeon, and that's no fault of theirs, but the reality is they figure, Hey, this is paid for that one.
[00:29:11] Isn't so I'm just going to go for the one that's paid for. And that’s Crazy to me. And I think more of the conversation to make that happen will be helpful to pay. That's my view anyway. No,
[00:29:23] Carrie: I think that's good. And I think what you had said previously, too, when I asked you about, you know, when a patient decides not to do anything, to keep them informed, because our conversation today is going to look really different in a year from now or five years from now, 10 years from now, when we have more data and research and evidence of what is supporting.
[00:29:47] Anita: Absolutely. I mean, the reality is when you think about medicine and the evolution implants have really only been around since the eighties, that is not a long time and we've come leaps and bounds ahead since the eighties, but obviously there's a lot more we need to know. So, you know, sometimes when people talk about, well five-year 10 year, well, it's only been since the eighties, we don't actually know the answers to a lot of these questions.
[00:30:16] So I think, you know, within our industry, a lot of people are talking about more standardized testing so we can report things more transparently among the companies. I think all of that is needed, but hopefully we'll continue to come forward because our consumers are Need transparency to help make better decisions.
[00:30:38] And right now, as you know, Carrie, if you send them out on the web, it is a Smorgasbord of stuff that it is going to come away with. I mean, Dr. Google is sometimes a tough place to be. And you know, we, we need to guide that conversation. I think a bit better. Right.
[00:30:53] Carrie: Yeah. We have come a long way. When you think about our conversation about unilateral hearing loss in the seventies was like, we, we don't do anything about it.
[00:31:04] And then with the eighties and more research, but again, I think we still have a long way to go in educating just the general public on the impact, but also I have families and patients who are experiencing that firsthand.
[00:31:20] Anita: Absolutely. And you know, when some of the, my primary care colleagues have said to me, things like, oh my, my patients like that are very quiet and I enjoy them.
[00:31:32] And, you know, with masking things have been particularly hard for anyone who has any level of a hearing issue, really. I mean, you'd never realize how much you lip read, even as a normal hearing person, how much you use facial cues until they're all gone away. And so. I just think we need to continue to be cognizant and we need to fight for our people.
[00:31:57] I had someone say to me recently, oh, I thought all people who are deaf and hard of hearing knew sign language and, you know, You hear things like this and you just realize, okay, we need to do a better job educating our own peers and our community because someone who's in my circle should never think that.
[00:32:17] Then I haven't talked about it enough or created aware enough awareness enough because that's clearly not the case.
[00:32:25] Carrie: Right. Yeah. And I guess masking there is a silver lining and the fact that like what you just said, individuals with typical hearing are seeing the impact of degraded speech, and hopefully it helps other individuals put themselves in the shoes of those who actually do have mild unilateral or any degree of hearing loss.
[00:32:51] Anita: I hope so. I hope so. We are much more and more very I guess this is a philosophical discussion as selfish and self-centered world. And it's hard to think about how much people are struggling around us, but man, people are. Really, really struggling. I mean, people have changed their lifestyle completely because of masking.
[00:33:11] Not because they wanted to, but because they had to, because it was miserable for them to do things as simple as going to the grocery store or, you know, certainly going out to dinner was a disaster. Because they couldn't, they felt dumb because they had to keep repeating themselves and they didn't understand what the menu was.
[00:33:29] you know, all kinds of things that just really are, are, are unfortunate and shouldn't happen. You know, I have people who are scared about their jobs because they have single-sided hearing loss and with masking, they're like, oh, their colleagues are mad at them because the colleague is sitting on the wrong side and they're afraid to advocate for themselves.
[00:33:50] So, you know, we just need to continue to encourage the conversation. That's really, really important. I think.
[00:33:58] Carrie: I think you're right. And I think that's a great way to end is that we need to continue to encourage the conversation and we'll have to have another conversation in the future because I'm sure what we talked about today is going to be updated in some way or form with research and, and new information.
[00:34:16] If anyone would like to get ahold of you, how could they do this.
[00:34:21] Anita: Well, they can always email me. My full, my email is an ajekumar@mercy.com, a J E Y a K U M a R. Ed mercy.com. I respond really well to emails. You can call my office and I will have to get back to you on that number. I was doing good on the email.
[00:34:40] You can
[00:34:40] Carrie: I can put that information in the show notes, and then people will be able to click on your email. The that way. And if you have a website with mostly, I can, I can link that up to the show notes as well, but I just want to thank you for taking the time and being a part of the empowEAR Audiology conversation.
[00:34:59] Anita: Well, Carrie, it was an honor. Thank you for having me really enjoyed our conversation as I always do. So hopefully this is useful to others and yeah. Please email or call us. We are here to help. I think. You're not alone in this. And that's just important to remember.
[00:35:17] Carrie: All right. Thank you listeners.
[00:35:20] Announcer: This has been a production of the 3C Digital Media Network.

Episode 29: empowEAR Audiology - Valli Gideons

  [00:00:00] Announcer: Welcome to Episode 29 of empowEAR Audiology with Dr. Carrie Spangler.
[00:00:16] Carrie: Welcome to the empowEAR Audiology Podcast, which is part of the 3C Digital Media Network. My name is Dr. Carrie Spangler, and I am your host. I am a passionate audiologist with a lifelong journey of living with hearing challenges and this vibrant hearing world. This podcast is for professionals, parents, individuals, with hearing challenges and those who want to be inspired.
[00:00:45] Thank you for listening, and I hope you will subscribe, invite others to listen and leave me a positive review. I also wanted to invite all of you to visit and engage in the conversation on the empowEAR Audiology Facebook group. Transcripts for each episode can be found at www dot 3, the number three, C digital media network dot com under the empowEAR podcast tab.
[00:01:18] Now let's get started with today's episode. Welcome everyone to the empowEAR Audiology Podcast. I am really excited today. I have a special guest with me and her name is Valli Gideons. And I have been following Valli on her social media for some time. And I said to myself, I need to get her on the empowEAR Audiology Podcast because I really feel like she's a.
[00:01:46] You're real. You're down to earth. You're insightful. You are a mom who is raising two teenage children who also have cochlear implants. So I'm just kind of investigating some of you. And I found out that you have over 800,000 people. Following you and your Facebook page and you also a manager and several other Facebook pages and groups.
[00:02:12] So a little bit about Valli. And if I'm her web page is that she has a webpage called My Battle Call and I am excited to learn more about that today. She is a military bride who writes about navigating through the fog of. Okay, this is with cochlear implants and other things from the heart. And I have just loved reading everything about you and your blog and following you on Facebook.
[00:02:42] And I'm really excited to start this podcast today. So welcome Valli. 
[00:02:47] Valli: Thank you so much for having me I'm happy to be here. Well, I 
[00:02:51] Carrie: think we're going to have a lot in common from maybe a couple of different angles, and I'm really excited for you to share more with our listeners today. So I know you have given much passion.
[00:03:05] And I, you say a sliver of hope to others. I think it's much more than a sliver of hope. But would you Just share with our listeners a little bit about your story and how you got started your kids and that kind of thing. 
[00:03:22] Valli: Oh my gosh. I, you know, this one is really hard to succinctly state because where do you begin?
[00:03:30] So just as far as how hearing loss came into our world, I can start there by telling you that we had no family history. And my son was born and failed. I hate that word, but failed the infant here, hearing screen. So we were they followed up with the two week, two weeks later with the ABR. And we went into that appointment, literally thinking we'd just be told.
[00:03:59] Yep. All good. And that is not what we were told. We were brought into the room. I've described this so many times. My mom's like, Val, you need a new story, but it's true. It's the room you don't want to be invited into. I just can't put it any other way. And the doctor came in and said he failed. He'll probably go to mainstream high school.
[00:04:17] Maybe cochlear implants, hearing aids and many questions. Well, my husband and I were like, You know, literally in shock. So needless to say we changed clinics because we did learn early on if it didn't feel right, it probably wasn't. So we ended up at a clinic where they were fabulous and we felt supported and heard and empathized with and all the things.
[00:04:43] So that was kind of what. We had to roll our sleeves up and literally learn what is hearing loss. And my son is 16 and a half, so we couldn't