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 31: empowEAR Audiology - Dr. Stacey Lim 

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

Episode 30: empowEAR Audiology - Dr. Anita Jeyakumar 

[00:00:00] Announcer: Welcome to episode 30 of empowEAR Audiology with Dr. Carrie Spangler.
[00:00:16] Carrie: Welcome to the empowEAR Audiology Podcast, which is part of the 3C Digital Media Network. My name is Dr. Carrie Spangler, and I am your host. I am a passionate audiologist with a lifelong journey of living with hearing challenges in this vibrant hearing world. This podcast is for professionals, parents, individuals, with your own challenges and those who want to be inspired.
[00:00:45] Thank you for listening, and I hope you will subscribe, invite others to listen and leave me a positive review. I also wanted to invite all of you to visit and engage in the conversation on the empowEAR Audiology Facebook group. Transcripts for each episode can be found at www dot 3, the number 3, C digital media network.com under the empowEAR Podcast tab.
[00:01:19] Now let's get started with today's episode. All right. Welcome listeners to the empowEAR Audiology Podcast. Today I have a special guest with me, Dr. Anita Jeyakumar. And I'm going to tell you a little bit about her history. Dr. Jeyakumar works for Mercy health otolaryngology in the Youngstown area and Ohio.
[00:01:40] She received a bachelor's degree in chemistry from Belmont university in Nashville, Tennessee. She received a master's in chemistry degree from Tennessee State university in Nashville, Tennessee and received a medical degree from Maharry medical college in Nashville. Dr. Jeyakumar completed an internship and general surgery and a residency in otolaryngology at Strong Memorial hospital university and Rochester and Rochester, New York.
[00:02:11] She completed her clinical fellowship in pediatric otolaryngology at the Cleveland Clinic Foundation in Cleveland, Ohio. She has over 20 years of experience and brings the new service line of otology and the advanced treatment of hearing loss to the Youngstown, Ohio area. She is starting a mock high disciplinary clinic for patients with hearing loss and a cochlear implantation and hearing rehab program.
[00:02:38] Dr. Jeyakumar’s current research into a study focused on the genetics of hearing loss And quality of life projects. So welcome to the empowEAR audiology podcast. And thank you for being here today.
[00:02:53] Anita: Thank you for having me very much excited to share this experience with you. Yes. And
[00:02:59] Carrie: I believe I always like to start out my podcast of how we know each other.
[00:03:05] And I think we met each other maybe around four years ago. Does that sound right?
[00:03:10] Anita: That sounds about right. And we have continued. It's like, I'm glad we like each other because we can't avoid each other. Cause we overlap all the time.
[00:03:20] Carrie: We do, we definitely share similar interest in a broad field and we both save on the American cochlear implant Alliance as the state champion for Ohio.
[00:03:31] Then we have our. In common. And I'm excited to talk a little bit more today about unilateral. And I think one of the big questions that I got as an audiologist, and I don't know if you get this as an otolaryngologist, is that while you have one good year, so you're good to go. Do you ever hear that?
[00:03:54] Anita: I hear that all the time.
[00:03:55] If I had a dime for how often I heard that I would be a very wealthy person, you know, just to kind of give context, when you talk about from a pediatric perspective, it's a little bit different than when you talk about it from an adult perspective, but from a pediatric perspective, it is not actually super rare.
[00:04:14] So about one in 1000 children are born with single-sided deafness. And that incidence goes up with age. So by the time children are age six to 19, about 14% of children can have some level of single-sided deafness. And we've known since the eighties really there's a pretty prolific author from then called Bess who wrote about children who had significant issues, both educationally, socially, cognitively, and behaviorally from single-sided deafness.
[00:04:46] In adult world, we often talk about the cocktail hour. So for anyone who likes to go to parties, whether you imbibe or not when you go to a party, you're typically surrounded by a lot of people, but your two ears then give you access to that full room of people. And there's a lot going on around you and your ears and brain learn to filter out what's important.
[00:05:08] And what's not for a child that cocktail hours sort of mirrored on a daily basis in the playground or a classroom, when a child goes to a playground, they are surrounded by the appears and their teachers or whatnot. And when you have single-sided hearing loss in either situation, you only have access to half of the information.
[00:05:28] So you're working that much harder to try to figure out what the context of the conversation. What the nuances of the situation are, and it's not unusual that you will get some of it wrong. So a lot of people end up being able to shy or reclusive because they don't want to put themselves in those environments, whether on the playground or in a party that expose them to what are perceived as sort of traumatic events.
[00:05:56] Quite frankly.
[00:05:58] Carrie: Yeah. That's a good point about playground or cocktail hour as you describe it. I think one of the things that I hear from an audiology perspective is that Parents or teachers, so, well, one on one that, you know, they seem to hear me quite fine. I don't see them having any difficulties. How do you explain to families or to other significant people in their life that there is more of an impact because they're not seeing it.
[00:06:32] Anita: So I think the best thing is twofold. One is that I often have what I call my poor man's video of what hearing loss sounds like to a person, because particularly when it's a family trying to make decisions for their child, you're really talking to people who probably have normal hearing most of the time.
[00:06:52] So they're trying to make a decision that's really important about something. They totally have no understanding of. So one I play a video? Then too, I try to relate to what's happens daily. So let's say Jack has a single sided deafness. I asked them things like, how does Jack do when you call him from another room?
[00:07:12] How does Jack do when you give him instructions? And he can't see you? And what I universally typically will get is some kind of acknowledgement that Jack does not do well in those situations. And they assume it's because Jack is being a kid and not listening. And of course, that's an element of that.
[00:07:31] It's not like these kids are always the model citizens of the world. But you know, it's really that Jack cannot follow an instruction if Jack doesn't know where the instructions are coming from or worse yet what the instructions are. So I try to relate on that level, because it's not too many families that don't want to relate to their loved ones, whether it's a child or a spouse or what not.
[00:07:55] So once you can get them to say that all these situations are happening. So these are some of the adjustments you want to think about taking, like, for example, exactly what you cited, Carrie that They will do better if you talk to them face to face, don't ask Jack for a bottle of water when you're in the kitchen and he's in the living room.
[00:08:14] Cause Jack won't know what you want, but if you go to Jack and say, you want a bottle of water, Jack will probably get you a bottle of water. You know? So things like face-to-face communication, the ability for them to integrate their lip reading and social cues are all going to be very important for them to communicate on a one-on-one basis.
[00:08:34] Now those don't solve the cocktail hour issue and things like that with echoing and sound localization, because that's the big thing that you're really losing when you don't have hearing in one ear.
[00:08:46] Carrie: So from a medical perspective, just kind of backing up, but what are some of the main causes of Unilateral hearing loss in children and then also in adults?
[00:08:58] Anita: So I would say it's fair to say that the differential for both are quite different. So if a child is born with unilateral hearing, Oftentimes a child is recommended to have some kind of a workup, which includes things like screening for congenital CMV. It has a high incidence of unilateral hearing loss.
[00:09:17] Children tend to have more anatomical anomalies. So oftentimes we get imaging because we want to diagnose those. And there's also a high incidence of Auditory nerve findings. They may have a nerve, but it's sometimes kind of what we call hyperplastic, which means it's kind of wimpy looking. So they have findings that you can actually concretely find and potentially address.
[00:09:39] If you know, they have the findings. By the time you start to get older, some of these are not as prevalent, probably acquired. And some amount of presbycusis causes more adult onset, unilateral hearing loss, you know, people don't protect their hearing at all. So there's a high prevalence of unilateral hearing loss in people who use weapons because they fire guns and don't necessarily use hearing protection.
[00:10:06] And those hair cells, as you, and I know are, are very fragile and don't like being traumatized. And so when it's gone, it's gone. So. Pathway and the mechanisms kind of are different, little different between kids and adults.
[00:10:20] Carrie: Yeah. So are there other, like co-existing factors that sometimes are red flags with unilateral hearing loss, medically.
[00:10:31] Anita: So medically, probably congenital CMV is the biggest one. Because unfortunately congenital CMV is something a child is typically born with and they get it in utero, but most places in our country do not do screening for congenital CMV because in the mother. It manifests as a cold. And if you don't know, you don't know what you don't know.
[00:10:53] Children with congenital CMV can be divided into symptomatic and asymptomatic. So unfortunately the symptomatic, maybe fortunately the symptomatic ones are a very small group. Those kids usually will show up as being really small birth weight or small head, or may have other medical issues going on.
[00:11:13] So those kids often times are identified in the nursery or in the NICU. And that testing for congenital CMV really needs to be done in the first two weeks to one month of life before you can't really rule it out. So you're in a, such a tight window. They're way more kids born with asymptomatic, congenital CMV, and those ones are often missed and there really is not a good way of finding them unless you have access to their newborn blood spot.
[00:11:41] Most states don't store that for clear periods of time. So you are kind of using some clues that you might get along the way to determine that, but you don't necessarily always know the etiology.
[00:11:56] Carrie: Yeah. Sounds like a hot topic as well, but I was going to ask you is my next question. Like, what are some of those hot topics that are surrounding unilateral hearing loss?
[00:12:09] Anita: So kind of like what we opened with, you know, back in the day, let's say the eighties. And prior they really weren't a lot of options for treatment of unilateral hearing loss. So I would say a lot of the hot topics focuses on, well, my grandfather had unilateral hearing loss and he did just fine.
[00:12:28] So why do we need to do anything for Jack or Jill? Well, it's 2021. And fortunately I will say there are options. So I think the big thing is to really kind of get it out there that, that you know, a family may choose not to exercise their options, but a family needs to know that they have options and really they have quite a range of options.
[00:12:51] So one, we do have to identify them, but hopefully with newborn screening and things like that, we can identify them effectively. Those kids need to be plugged into early intervention because it's important that the children get access to sound good Quality sound to kind of keep on target with the peers, because there's a high incidence that these kids will repeat a grade or will suffer in school.
[00:13:15] If they want to start with less interventions, things like preferential seating in the classroom can be really impactful as well as wearing an FM system in the classroom. So to provide those resources in a public school setting, as you well know, they often have to have a 504 plan or an IEP to make sure that those resources can be provided for them.
[00:13:36] And those kids have really measurable targets that follow them. A lot of these kids will need speech therapy. And then when we start to really go into the individual interventions, anything from a specialized kind of hearing aid called a CROS hearing aid, or a specialized kind of conduction hearing aid called a Baha or even a cochlear implant, which was FDA approved in 2019 for single-sided deafness five ages five and above are all options.
[00:14:05] And I think it's important for parents and families to understand that the options are there.
[00:14:11] Carrie: Yeah, which kind of brings me to my next question. And I know you've been heavily involved in the cochlear implants for many years, both children and now adults. But for kids who are five and above and even adults, what is a good candidate for a single sided deafness kid or an adult, I guess maybe talk from the child perspective.
[00:14:35] Anita: Okay. That's such a great question. And I think. Depending on who you talk to, you'll probably get different answers. So, as I mentioned, I think the FDA approved for five and above now, majority of our data really comes from Europe. Europe is sort of 10 years ahead of the US in terms of implant technology and outcomes.
[00:14:55] And what they seem to show is that even for single sided deafness, the younger, you implant them the better they do. Now the confounding factor. That makes sense for those of us in the implant world, because the sooner they have auditory stimulation in the affected ear, the better their brain knows what to do with the sound.
[00:15:13] The dilemma is when they have single-sided deafness, really it's the brain that hears. So the brain has a good ear that it can hold on to that whole time. So how do you focus a rehab option? Or focus the attention on the implanted ear. And I don't know that we have conclusively figured that out for children.
[00:15:35] Fortunately implants, if that's the route they go, they do have streaming technology. So really beyond just putting the implant in the child, there needs to be a dedicated rehab program for the child to use that ear. Otherwise, guess what? The child is always going to have better sound in their normal ear. And their child is always going to listen to the normal ear.
[00:15:58] The same really goes for adults. You know, I think auditory the duration of auditory deprivation matters. In adults, there's some literature saying that anywhere from four to seven years of auditory deprivation, meaning they've had no access to that sound can negatively impact the outcome. The confounding factors are always that most adult implant programs in our country don't have.
[00:16:22] Rehab as part of an implant program. So without giving them the structured guidance of how to use the new found access to sound, adults really struggle. You know, this is not necessarily all intuitive. It might be intuitive to you and me because we are in that world in such a different way. But it is not intuitive to the average adult who is seeking this.
[00:16:46] They just want access to sound on both sides, but without that rehab focus, streaming everyday focused therapy to that ear, they tend to always use their better ear and really rely on this only as a failed state. So that mechanism probably really needs to be even in better place for both adult and children.
[00:17:06] Carrie: Yeah, that's all good information. So one question I have out of that is you talked about that time of auditory deprivation from like four to seven years. Whatever, but for kids, if the child was using Some sort of amplification and that ear that was has the hearing loss, whether they, I was stimulating one hair cell.
[00:17:32] And that's it. Have you noticed, or is there any research that shows that they may Benefit or take, you know, ownership of that cochlear implant more so than someone that's never used any kind of technology in that ear?
[00:17:49] Anita: Yes, absolutely. And I think some of that is an extrapolation from bilateral cochlear implants, or just an unilateral implants and older children for other reasons.
[00:17:58] The reality is that the sooner you teach a child to leave a device on them, especially if they have a little bit of auditory benefit. Yeah. It may not be speech. It may not be clarity, but it's just some auditory awareness. Then the better they're going to accept something that'll give them more. The reality is when we first put an implant on anyone.
[00:18:20] It sounds awful. I don't care what we say. It sounds terrible. You know, you talk to anyone who can verbalize to you. They will say it sounds nothing like normal sound sounded to them, but they have to push through it. And if a child never accepts it in the first place, they're never going to get to a point that they push through it.
[00:18:39] Cause eventually it'll sound Greatish better than what they had before far better than what they had before, but they have to push through all of that. And that's really what the efforts of our audiology team or a speech pathologist both come in because they have to tinker with it to really get each person's individual program to be what is optimized for them.
[00:19:01] And there really is not a one size fits anybody. It has to be individualized to each person and that's where the dilemma with the young kids come in too. It's like, how do you get the feedback from a three year old? That the sounds awful when the three-year-old is saying five words, you know, it's, those are challenges.
[00:19:21] So there's a lot of effort that has to happen behind the scenes to really show that it's going to be beneficial. I think with the right infrastructure, it really is. I'm a believer for sure. It's just, I don't know that we always have the right infrastructure in place.
[00:19:38] Carrie: And you talked a little bit earlier that there are some other options that families or adults may want to try as well, such as a CROS type hearing aid or a bone conduction devices.
[00:19:53] What has been your experience with those types of devices or is it pretty individual? I have, depending on the person, but that is what.
[00:20:03] Anita: So, I guess I'll start with one is that I, as a cochlear implant surgeon probably have an innate bias against some of those devices. So maybe you might need to take everything I say with a pinch of that salt and it now the thing, but the reality.
[00:20:20] Before coconut implants became FDA approved for, you know, single-sided deafness. There was no FDA approved option for single-sided deafness for the affected ear. The only options were technologies that basically routed sound from the affected side to the normal side. So both the CROS and the Baha based on technology that doesn't use the affected ear at all.
[00:20:45] It just gets the sound from one ear, the affected ear and routes it in different ways to the unaffected ear. So the issue I've had, I think not, especially now that's the cochlear implants are an option is that you really are not getting information on that side. You're not using the ear that you were born with.
[00:21:05] Let's put it that way. You're basically your good ear is doing all the work for you and you're learning to say, oh, okay. That information was from my affected side. This information is for my good side and it's really, really confusing. And that's certainly what I saw in my patients is that yeah, there were certain situations that had worked.
[00:21:27] It's definitely not easily accepted. I would say both of those technologies have also come a long ways. When I first came out of training, I would have said I would never, ever, ever prescribe a CROS to anyone because they were awful. And they just seem like they muted the good ear as opposed to help to anything.
[00:21:47] But both of those technologies have become so much better. That the nice thing about them. The one benefit that they both have is that you can try them without surgery. You know, you can put hearing aids on people and try them without necessarily saying, this is what they've committed to for life. You can try a bone conduction device on a soft band that they would wear and get.
[00:22:09] Yeah, it's not a hundred percent what it would be like if it was put surgically, but at least it's a really good sense of what it could be like. That the cochlear implant is a leap of faith. You know, you have to say, okay, this is what we're doing, but you can't really test it out until you just do it.
[00:22:26] And I think that's probably the big advantage of the nonsurgical or less surgical approaches is that as a patient, I do think they should march along the algorithm, you know, they should try the non-surgical ones at least briefly to get a sense of, do we see any improvement in the. Does the child learn to wear this non-surgical thing well?
[00:22:49] before we put on the useful surgical thing, and I think there's value in the story for them.
[00:22:57] Carrie: Yeah. And I think that commitment piece that you said is so important. So if they're not going to be committed to a more non-surgical outcome, are they ever going to be committed to a surgical outcome?
[00:23:12] Anita: Yeah, the reality is we are Americans and we live in an instant gratification society. So when you tell people that they have to go through this one big hoop, but that leads to 800 little hoops, you know it's not necessarily what they want to hear. They are willing to go through the one hoop, but they want it to be done.
[00:23:33] They want it to be taken care of. And unfortunately with any of these options that. It really, we're talking about a lifetime of a journey. You know, I tell our pediatric patients and their families that you were going to see this through to high school because your kid needs to finish high school. A lot of children with hearing loss don't get that opportunity because the system doesn't work for them.
[00:23:56] Not because their intelligence is remotely an issue, it's just a system fails them. So that applies to the kids with single-sided deafness and the, and the literature shows that.
[00:24:08] Carrie: Yeah. I, I know it's been such a hot topic along, along the journey of working with families who are going through these different decisions.
[00:24:20] So if a patient decides to do nothing and you kind of mentioned this earlier, what can we do to still be supportive?
[00:24:30] Anita: So I, I think that is complete, you know, we have autonomy in our world and I think as long as they've heard their options and they decide to do nothing, that is not the worst thing in the world.
[00:24:46] I think things we need to do, we need to We need to not dismiss the patient just because they've chosen to do nothing. Doesn't mean they're not a patient still. We need to watch and see how they're doing in school. These kids have a high degree of depression and anxiety. So we need to make sure that we're not missing the boat on other things going on, that we can support them with.
[00:25:07] And it might be things like support groups, you know? Yeah. They may not be wearing technology, but maybe they'd benefit from meeting a peer who also has single-sided deafness to say whether it's an older peer that has been successful to say, how have you navigated the world? You know, what kinds of things, peers meeting peers has always been a win.
[00:25:27] You know, the biggest deficit that I always Personally is that I personally do not have hearing loss. So while I've read and read and read and I listen and all of these things, I truly don't. And you know, it's like saying a, guy's supposed to know what it feels like to have a baby. Well, good luck. You know, I mean, you can only do so much research.
[00:25:49] You really don't have an idea, but the peers know what the peers need. And there's something to be said for a support system that they can bank on. The one caveat, I would say the only one that probably as far as we know right now that does have a time. Limit on it is if someone is born with single-sided deafness and they don't, and the parents say, you know, they're doing okay, they're in speech, they're meeting their milestones.
[00:26:15] We're going to wait for them to have this decision as an adult. Well, that decision may not exist as an adult. And that's the one thing that is really hard for parents to understand. They're like, well, it's the same anatomy. It's the same brain. They have access to sound on the other side. The literature just doesn't seem to support that.
[00:26:35] Giving them access to sound when they're 10 plus years into a journey is going to be successful. But there are lots of caveats to that. We don't know if it's because they don't have therapy to match it. We don't know if it's because the commitment is not there. We don't know. We think that there is basically a.
[00:26:54] Neuro-plasticity that goes away why that would go away when they have access on one side, don't know, but that's just the data that we have. So I would say that's going to be an evolution. Hmm.
[00:27:07] Carrie: Interesting. So there's. I guess one of the questions that I wanted to throw out at you is that, is there anything that I didn't ask you that
[00:27:18] Carrie: I should've asked you about unilateral hearing loss and what, you know
[00:27:24] Anita: gosh, I think.
[00:27:26] You know, how do we create more awareness among our peers is what I'd say. I think, you know, we are an informed clientele, probably the people listening to this podcast, me and you. This is what we do on a daily basis, but how do we continue to keep the conversation going? How do we make sure our primary care providers know that this is an issue that their parents and patients deserve a conversation?
[00:27:55] How do we make sure general audiologists who haven't been in the CI world are made aware of that the conversation has changed. So people who are struggling past their hearing aid really should have that conversation to the next level. I think that's a nice thing about this. You know, getting the awareness out and continuing to have an open candid conversation is important because there are way too many patients that come to see me that say You know, we didn't even know this option existed and that's crazy to me that they wouldn't, but why would they, if they're not in the right circles in the right place?
[00:28:32] The other thing is a whole cohort of patients who come to talk about an implant because their insurance won't pay for hearing aid. Well, that's a whole different can of worms and probably its own podcast. But, you know, I would say that there there's some legislature going through to hopefully change some of that.
[00:28:50] To me personally, it's very exciting. It breaks my heart. When I see people come through and I think to myself, gosh, all you just need is a good hearing aid. And we have good hearing aids that you haven't reached the level that you should be talking to an implant surgeon, and that's no fault of theirs, but the reality is they figure, Hey, this is paid for that one.
[00:29:11] Isn't so I'm just going to go for the one that's paid for. And that’s Crazy to me. And I think more of the conversation to make that happen will be helpful to pay. That's my view anyway. No,
[00:29:23] Carrie: I think that's good. And I think what you had said previously, too, when I asked you about, you know, when a patient decides not to do anything, to keep them informed, because our conversation today is going to look really different in a year from now or five years from now, 10 years from now, when we have more data and research and evidence of what is supporting.
[00:29:47] Anita: Absolutely. I mean, the reality is when you think about medicine and the evolution implants have really only been around since the eighties, that is not a long time and we've come leaps and bounds ahead since the eighties, but obviously there's a lot more we need to know. So, you know, sometimes when people talk about, well five-year 10 year, well, it's only been since the eighties, we don't actually know the answers to a lot of these questions.
[00:30:16] So I think, you know, within our industry, a lot of people are talking about more standardized testing so we can report things more transparently among the companies. I think all of that is needed, but hopefully we'll continue to come forward because our consumers are Need transparency to help make better decisions.
[00:30:38] And right now, as you know, Carrie, if you send them out on the web, it is a Smorgasbord of stuff that it is going to come away with. I mean, Dr. Google is sometimes a tough place to be. And you know, we, we need to guide that conversation. I think a bit better. Right.
[00:30:53] Carrie: Yeah. We have come a long way. When you think about our conversation about unilateral hearing loss in the seventies was like, we, we don't do anything about it.
[00:31:04] And then with the eighties and more research, but again, I think we still have a long way to go in educating just the general public on the impact, but also I have families and patients who are experiencing that firsthand.
[00:31:20] Anita: Absolutely. And you know, when some of the, my primary care colleagues have said to me, things like, oh my, my patients like that are very quiet and I enjoy them.
[00:31:32] And, you know, with masking things have been particularly hard for anyone who has any level of a hearing issue, really. I mean, you'd never realize how much you lip read, even as a normal hearing person, how much you use facial cues until they're all gone away. And so. I just think we need to continue to be cognizant and we need to fight for our people.
[00:31:57] I had someone say to me recently, oh, I thought all people who are deaf and hard of hearing knew sign language and, you know, You hear things like this and you just realize, okay, we need to do a better job educating our own peers and our community because someone who's in my circle should never think that.
[00:32:17] Then I haven't talked about it enough or created aware enough awareness enough because that's clearly not the case.
[00:32:25] Carrie: Right. Yeah. And I guess masking there is a silver lining and the fact that like what you just said, individuals with typical hearing are seeing the impact of degraded speech, and hopefully it helps other individuals put themselves in the shoes of those who actually do have mild unilateral or any degree of hearing loss.
[00:32:51] Anita: I hope so. I hope so. We are much more and more very I guess this is a philosophical discussion as selfish and self-centered world. And it's hard to think about how much people are struggling around us, but man, people are. Really, really struggling. I mean, people have changed their lifestyle completely because of masking.
[00:33:11] Not because they wanted to, but because they had to, because it was miserable for them to do things as simple as going to the grocery store or, you know, certainly going out to dinner was a disaster. Because they couldn't, they felt dumb because they had to keep repeating themselves and they didn't understand what the menu was.
[00:33:29] you know, all kinds of things that just really are, are, are unfortunate and shouldn't happen. You know, I have people who are scared about their jobs because they have single-sided hearing loss and with masking, they're like, oh, their colleagues are mad at them because the colleague is sitting on the wrong side and they're afraid to advocate for themselves.
[00:33:50] So, you know, we just need to continue to encourage the conversation. That's really, really important. I think.
[00:33:58] Carrie: I think you're right. And I think that's a great way to end is that we need to continue to encourage the conversation and we'll have to have another conversation in the future because I'm sure what we talked about today is going to be updated in some way or form with research and, and new information.
[00:34:16] If anyone would like to get ahold of you, how could they do this.
[00:34:21] Anita: Well, they can always email me. My full, my email is an 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 go on a Facebook group for all of you young ins out there. There was no Facebook. I mean, barely, I don't even know if we could go. If you could Google a thing, you were waiting for your dial up internet.
[00:05:09] I mean, I, so finding support was really hard. And so that brings me to all these years later, I created a space and a place for people. That is what I wished would have been available when my son was identified with hearing loss. And then 21, 1 months later, my daughter was also born and has the same syndrome to 25% chance of also having hearing loss.
[00:05:37] And she. Also has it, so we're, we're a hundred percent, we're two for two. So that's kind of how the 
[00:05:47] Carrie: 16 and a half and for 
[00:05:48] Valli: what she did, she just turned 15
[00:05:49] Carrie: 15. Okay. I said to two wild teenagers and has 
[00:05:55] Valli: said, yes, they're a freshman and a sophomore. So I have both my babies in high school this year. 
[00:06:02] Carrie: Oh, wow. Well, that's at least they're both at the same school now, right?
[00:06:07] Valli: Yes. And my son is driving them to school. Oh 
[00:06:11] Carrie: yes. So when did, so you found out about your son right from the get go and obviously, probably your daughter since then with the family history  in the newborn hearing screening. At what point did you. Can you share a little bit about intervention and when you decided to go down the cochlear implant route, 
[00:06:34] Valli: so I'm going, I have to kind of piece it together because it's now so long ago.
[00:06:41] So I think there's probably lots of details missed in how we did have early interventionists from the state and city or county. We found an amazing audiologist. Who referred us to an amazing auditory verbal therapist. He got fitted with his hearing aids at three months of age. And so we started down that route to see how he would do, but also he has enlarged vestibular aqueducts.
[00:07:13] So we knew there would be fluctuations in the hearing. So it was a lots of retesting getting him conditioned behaviorally, which he's a champion. I mean, the, my, both my kids are so accurate. Their audiologist is like always kind of amazed by how accurate the information is. They give anyways. So because of that fluctuation in his right ear, it was a deteriorating pretty quickly.
[00:07:43] And so we came to the decision to get the cochlear implant on that, that time they weren't doing bilateral. And we still didn't know what would happen with his left ear. And I think somewhere in there was a sliver in us, hoping it wouldn't deteriorate. Which looking back, that's kind of funny because it's, it is going to deteriorate.
[00:08:04] It's just a matter of when. So we went ahead with the cochlear implant on his right side. Just so that we would no longer have to be worrying about whether he was getting access or not. And we came to it with nobody telling us to do it, but a lot of people guiding us with good sound information.
[00:08:26] Carrie: Okay. So he was how old, when he got his first implant then? 
[00:08:30] Valli: I think he, it was 14 months. 
[00:08:33] Carrie: Okay. So yeah, you've been on this cochlear implant journey for a while. And then what about your daughter? When did she get her first one? So 
[00:08:42] Valli: her hearing loss was not as severe when she was born. So she did get a lot more information and use out of her hearing aids.
[00:08:49] And we kept watching to see what the shift was going to be. And we did made the decision when she was 18 months old. She got. Her cochlear implant. So she's doing a ladder. She only has one she's. What do you call when it's implant hearing aid? Bi-modal bi-modal I always get the terms mixed up. She's bi-modal and we ended up getting his second implant when he was in kindergarten.
[00:09:14] Okay. So he calls that his baby ear, his infant year, and he still prefers just to wear his right implant only even though we make him wear both when he actually really needs to hear I shouldn't say make him put, put people off. We don't, we, he knows when he really needs to hear, he wears them both, but around the house, he is leaning towards.
[00:09:38] Wanting to just use the right ear. It's really interesting. Yeah. 
[00:09:42] Carrie: I've heard that a lot from different kids, especially when the time is a little bit different. In between set the 14 months to the five years your has not caught up to as mature ear yet 
[00:09:55] Valli: says he can't really explain why. Because he does know he gets a lot more access with both.
[00:10:03] He knows that. Cause when it really counts, he wants them both. But so it's, it's, it's really interesting. 
[00:10:11] Carrie: Yeah. And every listener, a little bit different with a whole cochlear implant journey. So one thing I wanted to ask you is you talked about your experience of not having a good experience and the initial kind of diagnosis and getting that information and then finding someone that you knew in your heart that didn't feel right there and finding someone else.
[00:10:39] Do you have any advice for like parents or I would say even audiologists out there. Really prompted you as a parent to explore something else and then feel, I guess, at home somewhere else. 
[00:10:54] Valli: Well, I think my biggest piece of advice I like to give parents is always trust your gut and your intuition is usually almost always right.
[00:11:04] And I don't know why we think when it comes to dealing with hearing loss and people in that expertise that we're not allowed to get a second opinion, third opinion, or. If you don't like your, the haircut you get, you have no problem with going to a new hairdresser. So if you're not okay with somebody's bedside manner, or you're not sure about the information they're giving you, or you just don't feel like it's the right fit, get another opinion or try something new with we've had to do it with auditory verbal therapist, because that relationship so important.
[00:11:42] And we just I think we didn't know anything about hearing loss, but we did know what right would feel like. And we know it didn't feel right. There was no empathy. I mean, none. And that's what I would tell audiologists. And I've spoke to classrooms of budding audiologists and that relationship is so important.
[00:12:05] I mean, our audiologist is Mo the most important person to me. She has been. So much so that we traveled we're military family. And when we were living 3000 miles away and we, I would still load my children up on a plane and fly cross country for her to do their mapping for their implant, because I just trusted her.
[00:12:25] And our rapport was just that good. And one thing that she does that I highly recommend for audiologists or anyone working with kids is she spoke to them. When they're in the room, she doesn't talk at them or about them. She talks to them and it's, they really love her. And I think part of it is because she really does make them feel seen and she makes their input.
[00:12:56] It's valuable to her, not just mom, sitting there doing all the talking for the kids. So. For anybody who's studying to go into this line of work. I think if you can look right at that child and ask them the questions that's so important, 
[00:13:13] Carrie: and it also empowers that child, but as well to take leadership of their own hearing and hearing journey and know that they're just as part of the process as anybody else in the little village.
[00:13:27] Valli: Right. So. Sometimes I'm telling you we're in, I love going to audiology appointments now, which is so funny because when the kids were little, they were excruciating because, you know, you're just trying to get it out. Especially when you're traveling across country, you're trying to make sure everyone's rested and fed and ready to attend.
[00:13:45] And, you know, I've got the fish crackers in the pocket doing the bribes for ice cream after and the whole thing. But now, I mean, we make it like a field trip and I just enjoy listening to what the kids have to say. When it comes to their hearing or anything else, but they can articulate things that I would have no way of articulating.
[00:14:07] Like I, and their audiologist is so proud of them. She was like, that is so well stated. I know exactly what you're trying to convey. So it's really powerful for kids to establish that kind of ownership of theirdevices and they're hearing. 
[00:14:26] Carrie: Yeah. Which kind of brings me to my next question. I think that's amazing.
[00:14:30] And like to develop those types of skills and to really listen to what I have to say. And I always tried to do that as an educational audiologist, talking to the students that I work with because they do, they have so much insight into the everyday life that nobody else is going to have because they're not sitting in those shoes every day.
[00:14:52] But you developed My Battle Call. And I am assuming that has a lot to do with a lot of the experiences that you as a mom, as a family have, but also continuing that with everything that your kids have to say about their own journey and kind of incorporating that. But can you just share a little bit about My Battle Call and how you came up with it and then name as well?
[00:15:18] Valli: I'll start backwards. The name is my son's name is Battle. Okay. And my husband's in the military, so we're a military family. So, and
[00:15:33] being a hearing loss advocate and parent of children who have hearing loss just became really my. Passion or purpose. So it just My Battle Call just seem to just sum it all up. And the first essay I ever wrote about it said I studied journalism in college and I was a writer. So writing was not something I was new to.
[00:15:58] However, I, once I had kids, I'd kind of transitioned and stopped doing that as a career. And I was on a girls weekend with my two best friends and they asked me how come I never write anymore? And why don't I return to writing? And I'm like, well, I don't really even know what I would write about. And they're like, are you kidding me?
[00:16:21] So that kind of set planted the seed. And I, my first essay I wrote in this genre was after my son had accomplished like a little bit of a milestone and my husband and I kind of just threw it away. Like took it for granted. I was like, this is sad. Like we need to remember how far we've come. So I wrote about it, so I wouldn't forget.
[00:16:53] And that was the first piece I published. When I finally decided to just put it out there into the world and then. And my profession I've worked for the YMCA as a director and as a writer, I've always just kind of let things happen organically and not been too stuck in a box and said the platform grew into something completely organic and it's everything I.
[00:17:20] Could I could have never hoped or dreamed for it to be what it is. Just what a privilege to get, to have these connections with other parents and professionals and people that had I not hit publish. Never have met and then gone on to write. I think you've know about the book that my daughter and I wrote together.
[00:17:42] I mean, I would've 
[00:17:43] Carrie: never guessed. 
[00:17:45] Valli: Oh, yay. Yes. Oh, right. That's right. That's awesome. So anyways, that, that was the long answer to the, the question is it's just really a place that I wished would have been available when we had our kids. And then also I don't sugar coat. Yeah. And I think 
[00:18:06] Carrie: that's so important for parents to have that information because a lot of times, well, first of all, I love that you write aboutit right away.
[00:18:15] Like it's kind of authentic. It's fresh in your mind. And it's real because I think like you said, if you wait longer than. It's not as fresh or I don't know the emotion, isn't always there as much unless you do it kind of as you're going along in the moment. So I do appreciate you sharing that way and I'm sure other parents really appreciate hearing what you have to say.
[00:18:43] So I thought we would I love reading your posts just for that reason, because I think they are authentic and encouraging. Informative as a professional. And then also as someone that also has a cochlear implant and a hearing aid too, it's thought provoking to hear. But your kids have to say too, but I thought we would go deeper into a couple of your recent posts if that's okay with you, for our audience.
[00:19:14] So the one, and I'm going to read some of it just so that I don't get it. Quote anything, but the first one I'd love to go deeper. And it's something that you posted August 5th which really prompted me to kind of reach out to you and the, and the post to explain that someone had commented on one of your heartfelt post and said that you really should drop the last part of the term hearing loss and instead add deaf gain into that.
[00:19:42] So I thought I would just ask Ask you what you thought about that or how you can kind of expand a little bit more on that? 
[00:19:53] Valli: Ooh, well, one thing you realize right away when you write on the internet is you have to get thick skin and really take the personal out of it. Because when I was a writer for a magazine and a newspaper, If someone had a complaint, it was a letter to the editor.
[00:20:19] I mean, this is, that is a lot different. Right. But it did make it, so you didn't have a relationship with your audience either. So I much prefer this format that we can, I can get to know the people who are reading my work, but I just have decided I will give people the benefit of the doubt. Until they show me that they aren't willing to think of things in a different way, or maybe they were missing.
[00:20:53] They didn't mean what they wrote or they used different words. So I just kind of reached back out to that commenter and just nicely asked her to really think about what she's saying and how it. Make the writer feel and other parents reading it, he was, it ended up being fine. I think there was a, more of a mutual respect that I was willing to give her grace, but then I also have very little patience for people dropping rude comments on someone's page for the sake of just.
[00:21:40] Causing controversy or just spreading mean rude things. So I wrote about her and I wouldn't want to call her out specifically cause I've gotten other comments that are equally strange to me, but I realized it was really about her pain and not feeling seen as somebody who was deaf. And I have so much empathy for that, but I'm the truth is I'm telling our story and I'm actually telling my story as the mother ma this is not my kid's story either.
[00:22:23] I can't, I don't tell their stories. I tell it from my point of view, I did not. Their stories are not mine to tell, and that's a real fine line. And I see other people try to jump into this. Platform really speaking for their kids. And I think you have to remember, they're going to read this. Mine do read it now.
[00:22:43] The lot. I eye-rolling a lot. Oh my gosh. My daughter and I are somehow connected on our phones as a family sharing where our photos and she's like, mom, all your PR. She just said this to me yesterday. All your ridiculous memes And she was mocking me no. And encouraged. I was like, well, too bad. So sad.
[00:23:09] They're not for you. 
[00:23:12] Carrie: Oh, well I obviously that posts. You know, responded to garnered like 550 likes. I think it was for that comment. And you had like 120 different comments and lots of shares. So it really, I think struck a chord with a lot of people. And really, like you said, it was an opportunity to have some grace, but open up a conversation.
[00:23:38] And you know about that. And I think that's something that. And I don't know if it's just because of everything else that we talk about with diversity and inclusion, that's happening more on a global level. And then it trickles kind of took us down to our little community of deaf and hard of hearing or, you know, individuals with hearing loss.
[00:24:02] I don't know whatever you want to call yourself, but. I've had that comment, you know, to me too. And I was kind of had the same reaction. It was like, this is me. This is what I have chosen to say about myself and why I don't need someone else I don't even know who you are commenting about how I decide to identify.
[00:24:30] And I think that's why your post really struck a chord with me is because I had personally experienced that as well. 
[00:24:39] Valli: Yeah, I think it's well, that's why it got so much engagement because people related and I think it's a lot of hearing parents feel a lot of judgement. And shame. And on my page, I don't tolerate it.
[00:24:58] So I will delete comments or ban ban somebody who's just being hateful and, and shame shaming another parent for the choices they've made, because then. That's not creating a space where people feel supported and have sense of belonging. And I could try to keep reiterating that are each one of us, our stories are unique and valuable and let's learn from one another.
[00:25:27] We don't even have to agree. Like I have changed. I've gotten more involved in collaborating with people in the disability sphere and I've learned so much. Like I've taken the  the word special needs parenting special needs out of my vocabulary, just from what I've learned by listening. And that's what feels right for me.
[00:25:53] Now. I wouldn't go onto somebody else's page and comment rudely, why they shouldn't use the term special needs. I might have a private conversation. Hey, have you ever thought of it this way? Or this is something I learned, but I. You know,
[00:26:12] it what's the goal, you know, what is the goal to make people feel supported and encouraged, and you're never going to change hearts and minds by shaming and judging period. 
[00:26:23] Carrie: Right. And I think your comment about being open and changing and talking to other people is, is important because over time when, if you think about, you know, 20 years ago, our vocabulary was much different than it is today.
[00:26:40] And just like you said, being open to new terminology and how we identify. Is is always going to be something, but again, what feels right for you is also important 
[00:26:55] Valli: Right. And the other thing is I take my, I follow my kids lead, so I that's the term they use. And if I say I asked them, what would you say if instead we called you deaf gain?
[00:27:10] They are like, what? Like that. This is them saying that would just be weird. Like they are not, I think it's generational. Perhaps they are not easily offended either. They really aren't. They, if somebody says, what are you deaf or something, they go actually, Where, if I heard someone say that I might go, Hey, that's very insensitive.
[00:27:38] Or you might want to consider your audience, but the, my kids are like, yeah, I actually am. And they, I mean, they, it doesn't do anything to their feelings of self. And so I don't know. We're not over. I don't think we've gotten to a place where we're too sensitive, but I think you have to listen to the person who has the disability and follow their lead.
[00:28:05] Carrie: Yeah, no, I agree. 
[00:28:08] Valli: Even using that word, I'm starting to get okay with it because my kids say it is a disability mom. They use it, but a lot of people don’t consider hearing loss of disability. And they're like, well, without accommodations, we can't go to school. And so anyway, they have their feelings about 
[00:28:33] Carrie: you.
[00:28:33] Can't get, you know, IEP services and different things like that. So it's definitely something I would say for me. And this is just me talking, I would say yes, I do have. Disability. I'm the only person in my family that has hearing loss. It's not something that is part of like our culture, I guess. And I I've I've family.
[00:28:59] This is just how I grew up. And however, I don't feel like my disability has  limited me, but like what you said I need accommodations and supports in order to navigate through my daily everyday life. 
[00:29:16] Valli: Yeah. That is well said, and maybe there's other people. I know there's other people who feel differently and that's okay too.
[00:29:26] It is. 
[00:29:27] Carrie: So that's why we're all 
[00:29:28] Valli: unique. There's no one size fits all. That's the tagline on my website. 
[00:29:34] Carrie: There you go. That's a great tagline. So what just thinking about parents and a lot of your follower, both are parents. What nuggets of advice would you share today for parents who are on this journey? 
[00:29:49] Valli: Well, I think I touched on trusting your gut.
[00:29:55] And then the other thing that I think is one of the main messages in the book that my daughter and I wrote is. For your child set the bar high because that's what they're going to reach for. That was advice we got early on, early on when my son was still a baby in this amazing auditory verbal therapist.
[00:30:25] He's legendary. I won't name his name, but he told us that right away and it just stuck like. You know, the sky is the limit. Doesn't mean there won't be challenges and they won't be times where, you know, it's really hard. There's times. I want to just cry for my kids when I just, you know, they come across some experience.
[00:30:49] That's just so hard, but I've, we've never told them there's anything they can't do and they believe it. So that's the biggest nugget is. Your kids are going to believe what you tell them and what you show them. 
[00:31:10] Carrie: Yeah. And the parents are the greatest example. So this is just a question for you. So has anyone outside of your family ever told you kids?
[00:31:21] They can't do something. And how did they respond? 
[00:31:26] Valli: Oh, I don't know. I think so. I don't think so. I mean, our family and extended family I'll tell you, a lot of them have learned a lot about our family by reading my work. I've even had some very close friends who said I had no idea how hard those early days were the early years.
[00:31:56] Well, when we were, I told you military, so we were living remote. A lot of the time, not near good family or good friends and family. So one specific instance, I just republished it for deaf awareness month was how, when people use the word, nevermind makes someone who has hearing loss feel. It's probably one of the most powerful pieces I write and reshare I'll ask readers how it makes them feel, and then I'll edit it to add new comments.
[00:32:35] But my sister who I love and who loves my kids has always just treated them amazingly, read that. When I originally posted it and she, she called me and said, I am so sorry. I'm like, what she's. She said, when you're, when Battle, sometimes doesn't hear me. I'll just say nevermind, like instead of just repeating it, and I'd never thought about how that might make him feel.
[00:33:06] Okay, well, there you go. You know, better, you do better. And that's why I write it and publish it because it might just reach somebody who didn't have any idea that certain things and behaviors they had were hurt could be hurtful. 
[00:33:23] Carrie: Yeah. I don't like that comment at all. And of course 
[00:33:26] you 
[00:33:27] Valli: go universal. I think it's universal hearing people don't like that.
[00:33:35] So I can only imagine, well, I can imagine cause people keep telling me how it, so isolating and makes you feel not important and frustrating and makes you want to you know, my son would say when he's in a group conversation after the third, fourth, fifth time, he's had to ask for. Clarification, he just forget it.
[00:34:02] Like, so if you have people who are more conscientious and just willing to just repeat it, then rephrase it if necessary or turn your body, get where they can see your lips. Turn off the background radio. That's blaring. One of my daughter's friends. If she reads my she reads my blog. She was taking my daughter somewhere and she said, I made sure to turn off the radio when we were driving.
[00:34:33] And just so she'd be able to follow along the conversation easier. And I'm like, thank you so much. Like how thoughtful that you put in because maybe the other girls wanted to hear the music. But anyway, it's just, I think understanding is key. 
[00:34:51] Carrie: It definitely is. So what about some advice for audiologists or SLPs or teacher of the deaf or anybody else that works with children who are deaf and hard of hearing?
[00:35:05] What would you want them to know? Nuggets of advice? I know you shared some, but what do you have any others?
[00:35:16] Valli: Well, I think the setting of the bar high is good one. And I think celebrating successes is pretty key. We had one therapist that we left because every session she would report to me, all the things Harper wasn't doing. And my, I brought my mom with me. And when we left. The session. My mom's like, I just don't understand why look at all the things Harper is doing.
[00:35:53] She didn't point one of them out. And I said, that's why I leave here defeated. She's like, there was not one bit of encouragement. So again, you're not lying to the parent or the child, you know, you can always have things you're working on, but not. You've just got to point out things that are, people are doing well, successes to keep being, feeling encouraged because also for professionals, particularly if you don't have a child who has hearing loss, don't pretend like, you know what it's like?
[00:36:37] And I had the same therapist would do this to me. She had kids about the same age as mine and she acted like it was just the same. And like, it's not, it's, it's very different for you to spend one hour with my child then to  to be that child's parent. So don't,
[00:37:01] don't presume to know, learn and empathize, but don't presume to know because you're an expert. That you know what it's like to actually parent the child.  That’s really good advice
[00:37:17] Yeah. It's tricky because you do know, you all know a lot, but 
[00:37:24] Carrie: right. We don't live. Yeah. We don't live your life. And when I in your house, 24 7. So 
[00:37:33] Valli: yeah, I had a note. We had another therapist we were going to for OT. And what I appreciated about her so much is if I had run into like a roadblock somewhere with like something behavioral that was related to the vestibular sensory issue, she would give me strategies and like, literally look me in the eyes and go, it's going to be okay, let's try this strategy.
[00:38:01] And I'll be darn if we couldn't end up finding things that would work. Sometimes it took a couple of different techniques or tactics, but that having somebody that's like an ally and a resource was lifesaving for me. 
[00:38:18] Carrie: No, that sounds like having those different strategies and supports and being able to, as a parent, go home and try and navigate and see what works for your own child.
[00:38:29] 'cause you never know what I wanted to also ask you a little bit more and you've kind of mentioned it about your most recent endeavor of publishing a book with Harper. Can you share a little bit more about that? 
[00:38:45] Valli: I can talk about this book all day if you want. I am so proud of it. It's been one of the most meaningful experiences of my life.
[00:38:55] We published. Ironically, February, 2020. 
[00:39:00] Carrie: So right before the show shut down, 
[00:39:03] Valli: we had ones, we got, we went to one school visit to do a read aloud, and then all our whole book tour got canceled. It was kind of a, but we did switch right on to zoom doing lots of zoom, readings and presentations. But anyways, so the book, how it came to fruition is.
[00:39:24] Rather than me writing my own book. I, my daughter came home from fourth grade and unpacked her backpack at the last day of school. And I pulled out her writing journal from school and they had done a daily prompt and I just got mesmerized by this journal. She's a really good writer and just reading through it.
[00:39:46] And I came across an essay. One of the prompts was said, what's something that makes you unique. And she wrote that how she was unique because she was deaf. And part of why she played basketball was to show other kids hearing or not that anything is possible and how to help other kids who might have challenges feel encouraged.
[00:40:08] And I mean, it was just this, well, here's the book Harper, this is a book. It's not my story to your stories, the book. And so we started, she didn't really believe me if you interview her, it's kind of funny. She was like, what? She, she just didn't believe me that we'd really make it into a book. And we started just flushing through the manuscript draft after draft.
[00:40:34] And then we finally hired up illustrator who started putting some of the pictures to the story. And then that's when Harper. Well, it's like, oh my gosh, this is really gonna happen. Yeah. So it was, it's pretty special. It's so it's encouraging. It's funny. So it's told in her twelve-year-old voice, very witty. It's a lot of words because she is such a reader.
[00:41:05] She wanted it to be something you could reach your small child, but then once your child becomes a reader, They won't grow out of it. Yeah. You know, till I, we, I have a friend who's sixth grade are still reading it and then the back is a glossary of terms. And then real life pictures of the family and the people in the.
[00:41:30] Carrie: I cannot wait to get it. 
[00:41:31] Valli: Yeah, it's fun. It's it's really cute. 
[00:41:35] Carrie: It was called Now Hear This, Harper Soars with her magic Ears. 
[00:41:39] Valli: Oh yes. Thank you. And it's available on Amazon. And also we do signed author copies, all get a shipment of author copies and we can sign those for people so they can just message me. And we write a personal message.
[00:41:54] So I find out I just signed two today. We find out about the child it's four and right. Personal message. Both me and Harper. Right. Like something about the kid. And because Harper had a book that was like that did somebody had personally signed. I mean, to this day, we're never getting rid of this book. So anyway, that's, that's been something really fun.
[00:42:17] Carrie: I think it's amazing because I think kids Of all ages really want to see themselves represented in a book. And so for you and Harper of really her experiences and two words and pictures, other kids are going to be able to relate. And, you know, if you're, I'm just thinking from an educational audiology perspective, to be able to share this with the kids I work with and several kids.
[00:42:47] Prompts different conversations about what might be happening and has this ever happened to you? Whatever happens to be in the story, it's just a whole way for them to have a conversation about their own journey. 
[00:43:02] Valli: Yeah. That's what we wanted kids to see themselves. And we talk about her other deaf and hard of hearing friends.
[00:43:10] You know, might use different some use sign language, some have hearing aids, some have bone conductors, some have a combination and kind of some of the hobbies those kids are into that are different than what her and her brother are into. And so. I agree with you. It's so important for kids to see themselves reflected in what they read and see.
[00:43:31] And when they, my kids were little, there were not a lot of options in books, particularly. So it's fun to see more and more books coming out. We're in the creative part of the next book, because now Battle is going to get his turn. He's not going to write it. Me and Harper are going to write it. Okay. It's going to be about him.
[00:43:52] It's going to be fun. Because he's funny, like it's I wish I could tell you the premise it's real. It's going to be more picture bookish. This is not picture book. This is wordy book as a book is don't be afraid. I only got one bad review. Well, it's not even a bad review, but, but the woman said it's very.
[00:44:11] And Harper said, thank you.
[00:44:16] And we like words. So we, we are happy someone called it wordy, but. Yeah, 
[00:44:23] Carrie: well, obviously like your background in journalism and then your path having two children with cochlear implants really intersected nicely, but,  
[00:44:34] Valli: and did I? It did. And when you're a writer, everybody says, are you going to write a book?
[00:44:40] I even got an, I reached out a literally office agent reached out to me about me writing my own. And I just was like, I'm not really ready to take on that kind of project, a hundred thousand words. Like I don't really have that story in me yet, but this is again organically just, and we really hope it ends up in front.
[00:45:03] People are buying it for their schools, for their libraries. That's we want it on every kid's nightstand. They'll send us the kids, send us pictures with the book. Oh, my gosh, I videos one little. Girl's like my new name is hopper. She's dribbling a basketball cause her foot plays. We talk about basketball in there and she's dribbling.
[00:45:24] Same Mike, call me Harper. Like she sent us a little video. It was so cute. Yeah. 
[00:45:29] Carrie: I bet. Hope I love that too. She, I don't know how she 
[00:45:33] Valli: feels. I think. I don't think she realizes the impact yet. So I think it's going to be even, they have her do the reading at her school to her whole. It was then seventh grade class.
[00:45:49] She was so embarrassed. I mean, in a lot of people at the school, her classmates bought it because they just thought it was so cool that Harper written a book. And then she read some of the lower grades at her school. And I don't think she really gets it yet. Yeah. 
[00:46:06] Carrie: Someday, 
[00:46:08] Valli: someday 
[00:46:08] Carrie: she will. So a couple other questions before we wrap up, but I know you have your website and your social media pages and.
[00:46:21] You have a store too, right? You sell like shirts and other fun things. Could you share a little bit more about your webpage and your store and how people can find you? I have 
[00:46:33] Valli: a store. I love it. Yeah. So I'm My Battle Call on Instagram and Facebook are my two big social platforms. Please come to Facebook people.
[00:46:44] We really. Engaged heavily on Facebook, but then also Instagram, my Instagram is growing. I've met some great people there. And then my website, my store I've created and designed a couple of different shirts. So proud. Cochlear implant, mom, proud hearing aid. Mom. I'm grateful. There's a shirt with the design grateful.
[00:47:08] And then I created a bunch of resource guides. So my biggest one, my favorite, well, I have an ebook that I wrote, it's just a collection of essays. And then I wrote a teacher's guide and it's nine page document with both hearing aid and cochlear implant versions.  And it's a document my kids and I wrote together that we give out to the school stuff every year.
[00:47:35] And so included in it is all the nuances and ways. It's above and beyond an IEP or 5 0 4 plan. It's like the actual humanizing of, you know, shut the windows, closed the doors, turn off the background music like real life, tangible things. Teachers can really. It makes sense to them, the nuances, and then there's a sheet in the back where people can personalize it so that, and then we wrote one the same kind of way for coaches.
[00:48:12] So I highly recommend people. Send this document to their teachers and their coaches way before the first day of practice or the first day of school. So the teachers have time, the coach has time to read it. Then you set up the meeting to go over it, but not on the first day of school and not on the first day of practice.
[00:48:34] We plan ahead because we made this mistake a couple times before I came up with this. Guide you can't grab the coach on the first day of first grade basketball, they have 20 kids there and they're just trying to herd cats it's too much. So you need to make, go the extra mile and make that appointment, or just ask for, you know, 10 minutes of their time to just kind of go over it.
[00:49:03] And they appreciate it so much. 
[00:49:06] Carrie: I'm sure they do. I know that's always a struggle for parents of like, what do I do for, you know, the coaches, especially when it's a parent coach, you know, just things like that, that you didn't even think about that. And you're like, oh, you get to practice. And you're like, oh no.
[00:49:23] Now what? So we have that resources, such a great opportunity for parents to have, and for professionals to have to, in order to share with families. So as we wrap up today, is there anything that I didn't ask you that you want our listeners to know about you? 
[00:49:41] Valli: Oh, well, I am a real, you know, I haven't really put this out there, but because I get approach rather than pitch myself, but I am available to do a speaking and it's something I'm super passionate about and was starting to do kind of regularly before COVID.
[00:50:04] I mean for real. So if you have a parent group or a professional group, students, whatever you need a guest speaker, I'm happy to come and, you know, work with you to in any way to kind of shape the speech for that group. We're always happy to come and either via zoom or in real life, share our book, share our story.
[00:50:28] So I think that's one thing I would like to the people might not know when they see my work, that that's something I'm really passionate about doing so. I think, I think we covered a lot. We 
[00:50:44] Carrie:  We did discover a lot. I think this was a great conversation. I'm so glad that you were willing to come and the empire ear ideology podcast and be a part for our listeners today.
[00:50:55] And I hope that all the listeners, whether you're a parent or you are a professional, will get onto your Facebook and Instagram pages and explore your website so that they can follow you and get all of this great, authentic, real information. Real time experiences that you are. So I guess gracious to put out there so other people can learn.
[00:51:22] So thank you, Valli for being a part of this. I really appreciate it. And I am so excited to put a name and a face together, and I hope that in the future we can actually meet in real life.  
[00:51:35] Valli: I would love that. Thank you so much for having me this was fun
[00:51:39] Carrie: All right. Thank you listeners for being a part of the empowEAR Audiology Podcast.
[00:51:45] Announcer: This has been a production of the 3C Digital Media Network. .

Episode 28: empowEAR Audiology - Dr. Samantha Kesteloot

[00:00:00] Announcer: Welcome to Episode 28 of empowEAR Audiology with Dr. Carrie Spangler.
[00:00:17] Carrie: Welcome to the empowEAR Audiology Podcast, which is part of the 3C Digital Media Network. My name is Dr. Carrie Spangler, and I am your host. I am a passionate audiologist with a lifelong journey of living with hearing challenges in this vibrant hearing world. This podcast is for professionals, parents, individuals with hearing challenges and those who want to be inspired.
[00:00:46] Thank you for listening, and I hope you will subscribe, invite others to listen and leave me a positive review. I also wanted to invite all of you to visit and engage in the conversation on the empowEAR Audiology Facebook group. Transcripts for each episode can be found at www dot 3, the number three, C digital media network dot com under the empowEAR podcast tab.
[00:01:19] Now let's get started with today's episode. Ah, well, good morning everyone. My name is Dr. Carrie Spangler and welcome to the empowerEAR audiology podcast. I am really excited to have this guest today, Dr. Samantha Kesteloot with me and she is currently a full time educational audiologist that Trenton.
[00:01:42] Um, oral program for deaf and hard of hearing in Detroit, Michigan. She graduated from Wayne state university with her AUD, and then prior to completing her AUD, she worked as an audiology assistant for four years. Gaining multiple experiences, working with children who are deaf and hard of hearing.
[00:02:01] Samantha also dedicates her time and talents through volunteer. She has been active. She was active in a doctoral program with a student academy of audiology. She's active with a teen program in Michigan. She's active with Michigan's EHDI family matters conference. She's been active with summer camps for children who are deaf and hard of hearing.
[00:02:25] And she also volunteers with the educational audiology association, Samantha is both a personal and professional journey to share with all of us today. So thank you for joining. 
[00:02:37] Samantha: Thank you for having me. I'm really excited to be on this podcast and, um, just talk about everything and share my journey and, um, yeah.
[00:02:49] Carrie: I always like to ask my guests how we met and that we kind of have a longer history. 
[00:02:56] Samantha: Yeah, well, I think so. I know when I was in Lapeer and I had audiology assistant with Kate Salathiel, we drove down to. Um, oh, gosh, I want to say, is it stuck or where were you at 
[00:03:11] Carrie: Stark county educational service center?
[00:03:13] Samantha: Yes. And then we, we went, we met, we went and got lunch with like some, uh, like Asian place, hibachi place. And then, um, cause we were trying to figure out different ways to accommodate, um, my, having my hearing loss and providing the services for kids and Kate had known of you, I think just from working in the field.
[00:03:32] And so we set up. And we got some good ideas. Um, and that's, that's how I remember meeting you. That's 
[00:03:39] Carrie: how I remember meeting you too. It was, and that was a long time ago because county, but a long time, 
[00:03:48] Samantha: that's probably eight years ago, at least because I mean, in between that time, I had my first year as an audiology assistant and that was out for.
[00:03:56] And then I got my doctorate and that was another four years. I mean, there's a little bit of overlap, so maybe six years, but yeah. Then 
[00:04:04] Carrie: in high school, 
[00:04:07] Samantha: no, I don't think so. No, I was, um, uh, I was definitely grad because I had just graduated from UGA in 2012 ish. So, um, I think, I don't remember being in high school and meeting you.
[00:04:22] Okay. 
[00:04:22] Okay. 
[00:04:23] Carrie: But I know it was at least six. It was probably at least 10 years ago. I mean time flies. So it was a long time ago and you guys had a great little road trip from Michigan and I got to meet you for the first time. So it was great to meet you. And I was so excited. To see someone else with a journey like mine going into the field of audiology.
[00:04:50] So it was a great connection from 
[00:04:52] Samantha: the beginning. I experienced this definitely like kinda, I don't wanna say mimic each other, but they're very, very similar. So that is at its cool to be able to be here on the podcast. But I feel just to work with you and have you as a colleague. 
[00:05:05] Carrie: Yeah. So Samantha, can you just, well, back up a little bit, and could you share a little about your own childhood journey and growing up and your diagnosis and amplification journey and school, things like that.
[00:05:21] Samantha: Absolutely. Um, so I'm actually an identical twin and my sister and I were born, um, pretty poor. We were very premature with three months early. Um, and so, uh, we were given, uh, this ototoxic drug called gentamicin to, um, keep us from going septic basically. Uh, and so that was sort of the cause that they definitely believe that the cause of my hearing loss, but, um, so then I was late identified.
[00:05:49] But when we go, when you're going to preschool, you get the hearing screenings done. And so, um, that's when I, they caught my hearing loss then, so I dropped three and a half to four years old when I was diagnosed and fit with, um, hearing loss. I'm sorry, hearing aids. Um, so I had bilateral, um, like normal.
[00:06:07] Precipitously sloping to profound, um, sensorineural hearing loss. So I had the good, low pitching and then almost like nothing in the highs. Um, and so, yeah, I wear hearing aids my entire life growing up until about, uh, well, 2017. So about five years ago, I got my, um, I got a cochlear implant in my left ear. So, um, it's kind of a, I have a hybrid, so it's a shorter electrode, array that will, um, like replaces the highs.
[00:06:35] And then I have a hearing aid portion for, um, my lower frequencies. Um, so that's kind of my, you know, my device usage and my diagnosis there. Um, in school, I received services from educational audiologist and teacher consultants, uh, for the deaf and hard of hearing. Um, I think I saw education, the educational audiologist about once a year, just for updated testing and then the TC, like once to twice a month.
[00:07:02] Um, and then that tapered off as I got older, um, when there wasn't as much of a need for, um, TC services. Uh, um, but I definitely, um, Hm. I don't know where to stay. I usually FM system that you've preferential seating, um, captured if they were available note-takers in college. Um, and those types of things, um, let's see.
[00:07:30] So those are the kind of the technical things. Um, what it's like emotionally in school too. Um, I definitely think that, um, there were lower expectations of students who had hearing loss. Um, but I, my, I had an identical twin. My parents always made, like, expecting me to do this. Like. on Target with her. And, um, so I think that that was a huge reason why I, a quote, unquote, successful person with hearing loss.
[00:07:58] I think that everybody can, but, um, you know, just in terms of kind of shadowing those lower expectations for kids, with Hearing loss, at least in my district and in my experience from what that seemed like, um, my mom was also really involved. Um, once she was. You know that I needed services and those kinds of things, she really fought for me to get the most.
[00:08:20] And so I, um, uh, I was actually, uh, put into a special education classroom, like preschool And then, um, then it was mainstream from kindergarten onward. Um, in high school, I, uh, you know, I was, I wasn't, I was a cheerleader. I just didn't count. So I was in class council, so I took on a lot of leadership roles and, um, those kinds of things.
[00:08:44] So I was also. You know, very involved. And that is, I think, a stereotype that a lot of people with hearing loss get, I thought you can't be a leader. You can't be involved in sports and, um, those kinds of things, but you just have to find a way around that. Um, and, and, you know, kind of accommodate for what you need.
[00:09:07] Carrie: What about friends? How was that? Did you tell you them about your hearing loss 
[00:09:14] Samantha: that. I've always been like a social butterfly. Um, but I feel like a lot of that, a lot of hours. Um, yeah, because, uh, growing up with hearing loss, I get pretty isolated. So I think that like you would just kind of, I would just kind of get to know anybody that I could get to know.
[00:09:32] And I mean, maybe it wasn't like the deepest relationship or whatever, but, um, I knew a lot of people, um, cause I really wanted to like try to fit in and all of those things. Um, but. I think socially, I had a lot of reliance on my twin sister, uh, to like interpret situations and those kinds of things. And then, um, sometimes I could just come to the point where you just can't keep up.
[00:09:55] And so you just sort of like retract back. Um, but I definitely think that that is something that. Always kind of been a problem. I just have a feeling of isolation and a left outness. Um, I don't know. I don't know if it's a problem, but I mean, it was always like a struggle or something that, um, just stopped.
[00:10:16] I, somebody who like I'm, my nature is very social. Like to feel like I couldn't be. Um, so I want it to be with always like, 
[00:10:25] Carrie: Yeah. Yeah, no, I could relate a hundred percent to that as well, because I feel like I was always the 
[00:10:33] Samantha: social butterfly. Definitely. Um, yeah, it's just something that always just will always carry through, but I definitely feel like I'm getting my implant has helped me like realize that and like be able to be that person we want it to be.
[00:10:48] So that's kind of like cool that the technology is able to do that. Um, and then I had the option, an opportunity to do that. 
[00:10:57] Carrie: Right. So your next, I guess, um, a step after high school was applying to college. And so how did that go? And, and how did you pick a major. 
[00:11:11] Samantha: Oh, gosh. Um, okay. So in high school, I always like, I, um, I first wanted to go into fashion, but then I quickly realized that that wasn't for me and my teacher consultant.
[00:11:23] So I actually, my teachers consultant from elementary school who her name is Shannon Williams and she, I mean, Uh, like give her so much credit for, um, the self-advocacy skills that I have and just like everything. Um, she just did so much for me when I was young and struggling and everything like that.
[00:11:42] Um, but I came full circle because when I was a senior in high school, she came into my district. And so she was like, why don't you do. Uh, junior, I should say, uh, why don't you work with kids who have hearing loss? And then that just was like, duh. And so ever since high school, I've always knew that I wanted to work with kids who had hearing loss.
[00:12:00] And, um, initially I was like, oh, I'll be like a psychologist or a therapist who works with, um, kids with hearing loss. I drive away and I. I actually started a CMSD at the University of Georgia, sorry. That's communication, sciences and disorders. Um, but I really, really struggled with anatomy and I had to take it like two incompletes and, uh, in that class and my brain just wasn't or just wasn't working for me.
[00:12:27] So then I looked, I just went for my psych. My bachelor's in psych, uh, thinking that I would, you know, go through that whole path and become a therapist for kids, with hearing loss, um, that get it like entirely pan out. I ended up moving back to Michigan and then that's when I became the, um, my, I got my educational, um, audiologist assistant role, but in terms of applying for college and all of that, um, I mean, there was a lot of guidance from the school, you know, there are all those like matching programs and, uh, That's how it was so long ago.
[00:13:03] I'm, I'm going to really think about that. Um, I will say like applying for disability services, um, my  my mom took a lot of like, kind of control over that. I feel like, um, the transition part between high school and beyond. So kids with kids  hearing loss is really just, um, I don't want to say a place where we're failing, but I kind of think it's the place where we're failing.
[00:13:25] Those are like, um, So many things that children just are not getting about, like the transition to adulthood or applying for college and like, um, I don't, I don't think it's anybody's fault necessarily, but those, um, there's just so much it happens. But in that transition, I don't think our kids are prepared for, um, I feel for me, I would say like, I didn't, I wasn't even, I mean, I work in the.
[00:13:53] And the industry now, I wasn't prepared to buy my first pair of hearing aids that I wasn't prepared to. Um, you know, disclose my hearing loss when I was, but I mean, just closing your disability to, uh, future employers, you know, all those kinds of things. Um, I think just kind of, I don't, they just don't really click and I don't know if it's because we are talking to teenagers or, um, just, you know, how we're trying to reach them.
[00:14:21] Um, but that transition to adulthood, I think because I had a very strong support system. Wasn't as hard as that is first from others, especially from other people. And then I got, I mean, I had all kinds of accommodations at UGA, but they gave me an FM system that was pretty old, like 1980s style. Um, so that was terrible, but I ended up kind of being pretty vocal about that.
[00:14:47] And, um, we were able to get like brand new FM systems for the university, by the time I graduated. So that was. Really proud of and pretty exciting. It was shocking to go to like a, you know, a school as big as the university of Georgia and not have top of the line equipment and stuff like that.
[00:15:10] Carrie: Right. They don't the disability services, especially if there's not like a strong program, that's connected with them on campus. That's, you know, has those types of services available for audiology and speech? They may not know that they like a comtex FM system is probably not appropriate for students right now.
[00:15:34] Samantha: I mean, like I still come back to like the whole thing of like, people know. You know, students not being ready to, to addition is they don't know that they can ask for better equipment. Right. Or, you know, oh, this is what we're getting, but like, you always have to. Like be willing to ask, you know, and like advocate for the things that work for you.
[00:15:54] And if something's not working, you also have to make them aware of that too, because legally the school's obligation to help you in the best 
[00:16:01] Carrie: way. Right. So you advocated for the FM. Did you get any other services in college? 
[00:16:09] Samantha: Um, I didn't know. I had a couple of note takers, um, like, I mean, preferential seating.
[00:16:15] I mean, that was sort of self-driven because you see yourself wherever in college, pretty much. Um,
[00:16:24] I think I might've had extended test time, but I've, I've never really utilized that as a, um, um, as an accommodation, 
[00:16:38] Samantha: I also, at one point did have like written notes, like copies of if the teacher would just lecture, I'd have copy of copies of the notes, um, or the, you know, oh my gosh. Um, overhead projectors, they do have at all.
[00:16:51] Yeah. They do the little like sheets of paper and you could, I would just fill those in, um, I would also like I would meet with my professors too. I think that that was something, uh, I mean, UGA is a huge school. There's 30,000 kids. Um, and so you'd have the accommodation letter and I would set up meetings with all my professors, um, before, or even during.
[00:17:16] You've been doing like those semester. I think that was a huge help because it just, it, you know, differentiate yourself and put you, you know, from all those, whatever, you're more than just a number, you know, face. And they know like they all, they would check in on me, um, those kinds of things and make sure that I understood the assignment or.
[00:17:37] So that was something I think also that, um, was very helpful in 
[00:17:41] Carrie: college. Yeah. A great tip by a teenagers and our parents who are trying to help navigate students or their own kids who are deaf and hard of hearing to be like, you need to meet with your professors. 
[00:17:55] Samantha: I mean, they don't, they're not like they do seem scary and intimidating, but they're there to teach you and help you learn.
[00:18:02] And if you can do anything. Um, apart and I mean, take, you're taking control and you're at, you have your own voice. Um, they know you respect that and they look out for that. So, um, I, I definitely, um, advocate for meeting with your professors, for sure. 
[00:18:18] Carrie: Definitely. So one of the other things kind of just segwayed a little bit, you ended up getting the audiology assistant position and then that did that drive you then to apply for the AUD program.
[00:18:34] Samantha: I’m sorry, you said, uh, my audiology assistant position, you 
[00:18:38] Carrie: had your audiology assistant position for about four years. Is that what drove you to then eventually apply and do the AUD program? 
[00:18:49] Samantha: Well, shout to Kate Salatheil again, because she was, um, she, I mean, she was just like, she taught me so much and she just saw how much I cared and how much I wanted to be involved.
[00:19:01] And she just really just was like, I would just respond like soaking up everything from her. And she, um, at that point I kind of like, what am I going to do? I know this isn't like, um, you know, like I knew that I had the personal experience and I mean, in Lopera they were so. Just supportive of that and like really, uh, respectful of it.
[00:19:22] And they would always do. Yeah, they would always want my input. And that was amazing. Um, when I felt like I had that personal experience, but I really wanted like the credentials to back it up and I really wanted the education because I, I don't want to say I felt like a fraud, but I was kind of like, I don't know if I have like all the right, um, qualifications to be providing this input.
[00:19:44] Right. So then, um, she was like, and then Kate was like, you have to go, like, you have to go. You'd be like an amazing addition to the field. And it would be started exciting. So then like, yeah, now it's pretty cool to have like the personal experience to bring to it. And then I also have the professional, you know, um, expertise and experience.
[00:20:03] Uh, so I feel like. Just kind of, I feel much better about saying things and doing things. 
[00:20:12] Carrie: No, that does make sense to be able to, you have such a gift to provide to the students that you work with and the families, because you can say this is my journey, but then you have the professional knowledge to, to direct them in different ways 
[00:20:31] Samantha: and being involved in different.
[00:20:35] You know, different programs, different, um, uh, uh, groups and stuff like that. I think it is a really, really unique and kind of a necessary perspective because when you're talking to parent and you're talking to these people who are, you know, sharing their anecdotal experience, um, the there's a lot of misinformation out there and it kind of can get spread pretty quickly.
[00:20:56] So I feel like, um, I feel like when I'm going into certain situations, I'm pretty unbiased, but I know that there's like a very scientifically backed like clinical reason for XYZ. And I've been in panel than on an indifferent cause, uh, on different cars and say, um, where I feel like that perspective needed to be shared because what, whichever, whatever was interpreted was.
[00:21:25] Does it make sense clinically? Do you know what I'm saying? Like as an audiologist, you're like, oh no. So let me, like, let me clarify this kind of, um, so I think, but I think it a less intimidating way of doing it than when you're in the clinic or at a doctor's appointment or whatever. So it's, it's cool to be able to kind of, um, provide both of those, uh, perspective.
[00:21:49] Carrie: Yes, definitely. So going, you know, you graduate with your AUD, which is awesome. And then you end up getting your job. Were there any roadblocks that you feel like you encountered as just an individual who's deaf and hard of hearing and getting a job? Or did you feel like it was. Kind of a good segue because you already in that kind of deal.
[00:22:17] Samantha: Oh, interesting. I mean, I don't really feel like I've felt any like huge systemic roadblocks or anything like that. I feel like there were some, uh, like comments that were made and stuff that could have been pretty. You know, if I wasn't me, I think it would have been like really upsetting, but I I'm, I've had people say like, there's no way that you can be an audiologist.
[00:22:40] If you have hearing loss, how can you do that? You can't hear, um, And that kind of thing. And it works out is that most of those comments came from other people with hearing loss and a lot of them were older or whatever. And I, I know it's because you know, the, their technology, isn't the technology that I have and that my technology isn't the technology that the younger kids younger than me have.
[00:23:03] So, um, that was kind of the, that was really shocking, I would say, but I wouldn't necessarily call it, um, a roadblock. Um, I feel very lucky. I've always been very supported by the audiology community here in Michigan. Um, and so I haven't really experienced many roadblocks, um, getting my implant, which talk, I mean, adjusting to, um, I mean, I got my implant and I was activated and then the next week I think I was back in clinic.
[00:23:35] Um, so that was really, um, That was really tough. Like that change just in back to being in the clinic and every little sound was so loud. And I couldn't like my, like my professor to my supervisors would like, like rush all their papers and I would be like, oh my God, what is that noise? That is so loud.
[00:23:57] That a 
[00:24:00] Carrie: little bit for that. Cause I wanted it. That was one of my question for you is. When did you decide that you needed to explore the cochlear implant process and kind of go backwards a little bit? That. 
[00:24:18] Samantha: So it actually started when I was still an audiologist assistant. Um, the woman who previously worked in that district was also a cochlear implant and she was a cochlear implant rep.
[00:24:30] And then, um, just like through going to the different conferences, we. Kate. And I were kind of like, oh, there's this hybrid implant. Like, why don't you do it? And I'm like, ah, I don't know. I'm kind of nervous. So, I mean, it probably took me a good two, two years, three years, um, of like being aware of the new, uh, implant and that I would, I was a candidate and that kind of thing, um, for me to actually pursue it.
[00:24:57] But, uh, a huge reasoning why I did that was because I felt, um, as a.
[00:25:05] And I wasn't, uh, performing my best. I wasn't doing the most for me to be able to best understand the kids I wanted to work with and that type of thing. I mean, children are pretty soft spoken and a lot of them have like speech errors. And then if you put like a child with hearing loss on top of it, you know, I need to make sure that I have all the tools.
[00:25:26] To make sure that I am doing my best job and show. That was something that, that was a huge motivating factor. Um, for me to get my implant, I was definitely just be my future goals and working with kids, um, as an audiologist. 
[00:25:42] Carrie: So you didn't have any like sudden change in your hearing or anything like that.
[00:25:46] You just knew that this technology was out there that now make you a candidate. 
[00:25:53] Samantha: Yeah, I guess I would say I had a lifestyle change. Right. But my hearing, um, was stable, has been stable my entire life. I've never had any sudden changes. Um, getting the implant in my left ear did change. Um, my hearing it did decrease in the low pitches.
[00:26:09] So, uh, that's something that. Which it's pretty hard. It's pretty hard still because when I don't have my implant on, people have to switch sides. Cause like my, like I consider, so when I have my implant on my left, did my good side of it. Then when I have it off my right, it's my good side, because I'm used to hearing with that residual hearing, like I've used it my entire life.
[00:26:30] So, um, it's something that I always kinda joke about. But, um, but yeah, so that would be the only time that my hearing ever changed. 
[00:26:39] Carrie: Okay. right  So. Can you go back and just kind of explain how you came to, um, I guess like make an appointment and kind of determine whether or not you really, I mean, I know you knew you were based on your audiogram, but like actually
[00:26:58] Yeah, the process of the cochlear implant. Um, um, 
[00:27:02] Samantha: yeah, I mean, it's pretty tricky to navigate and it's really intimidating. Um, I think for, you know, for parents or for, um, individuals to make, to take that first step, um, kind of a different. Journey, I guess, because, uh, like I said, a woman that I knew was a cochlear implant rep.
[00:27:20] And so she was aware of some, um, like research trials and stuff that were going on. So she had informed me of that and then put me in contact with the audiologist. Um, I think via email. And so I just emailed the audiologists and said, I'm interested in being in this research. I want to see if I'm a candidate, et cetera.
[00:27:39] So then I actually, so the closest research center or. Where they were doing this trial was at Vanderbilt in Nashville. So I actually, um, my mom and I went down there and I did my entire, the whole test battery there. And I didn't qualify for the initial research study, but I qualified for the other one.
[00:28:03] Um, and then. I came back home and my husband at the time, it said, why don't you keep it in Michigan? I go to Michigan. So then I ended up making an appointment at the U of M CI center. And then, um, I went there and it was kind of, um, I mean, there was conflicting results. So it was just, you know, um, just in terms of EAS.
[00:28:25] So like, uh, Vandy fell my left ear as a candidate. You haven't found my right as a candidate. And I always thought my right ear is stronger, just an understanding and stuff. So that was kind of like, ah, I don't want to wait. Like I want to get this done. Um, and then. So I just went back to Vanderbilt and, um, they w they were, I mean, I will highly, always recommend Vandy that the continuity of care has been something I've never experienced.
[00:28:52] I mean, I would email, I would email the surgeon and he would email me back the same day, same thing with the audiologist. So, um, that was just something I was like, I feel comfortable here, you know, and I think that that's something a lot of people need to do to just like, just make sure that you're comfortable with the people that are helping you.
[00:29:11] Um, yeah, I mean, if you just, I know here in Michigan, like if you just call. MCI center, which childrens hospitals, audiology clinic, those, you can just schedule an appointment for CI eval. Um, I always try to tell my parents too, because people are really scared about CI’S and, um, you know, I always try to, I try to tell them, like, if you just go in for the appointment and get an evaluation to see if it even a candidate, um, cause I know.
[00:29:42] Like when I was younger and my mom, like my mom and dad were told, I wasn't, I would never be a CI candidate, but the thing is that technology changes and you know what, 27, whatever, 24 years later, I'm a candidate. So I think it's, you know, it's important that audiologists continue to encourage their patients to like seek out the best and just seek out information, like having information isn't doesn't necessarily warrant, uh, needing to make an immediate decision.
[00:30:12] Yeah, 
[00:30:12] Carrie: I agree. I think. We cochlear implants have changed so much as far as candidacy goes, and we need to recognize that it's not a last resort anymore. It's part of that continuity of care and you know, you and I have. Similar. I think they like probably identical, um, ski slope audiogram. 
[00:30:40] Samantha: Yeah. I remember seeing the audio going that one of your presentations know, I was like, oh, that's really creepy mine.
[00:30:47] Carrie: It was like a mirror image of each other's audio grams. All of these great sound low-frequency sounds, but all of the high frequency sounds have been, never been audible. 
[00:31:01] Samantha: I know that's something that I think is just, I don't know if, I mean, that was one of the most amazing things was like, wow, I literally have profound hearing loss and these ranges, and now I'm detecting these steps.
[00:31:16] Carrie:  25 dB and a hearing aid would never touch frequency. So 
[00:31:26] Samantha: I don't know. I mean, for you, I, this was one of the things I was just kind of a side effect and I never really like realized it until my surgeon asked me, but like my fatigue level. Uh, so much less. I said, getting the implant. Is that something that you've experienced?
[00:31:43] I'm just curious. It is. 
[00:31:45] Carrie: I feel like. I definitely for me started having discrimination difficulties, uh, prior to the implant. And that's what prompted me to think about an evaluation. So I was definitely having a lot of fatigue prior to the implant, just because I had to concentrate so much harder with my hearing aids and.
[00:32:10] so that Prompted me to go for an evaluation. And then of course, like what you said initially after you first are activated and your brain starting to get used to a whole new language. I was exhausted just trying to figure that out, but as time has gone on and I feel like that focus, so the speech is more like speech rather than.
[00:32:34] chirps and beeps, it's a lot different now. So I, and I'm the same way when I had my implant on I'm like, you need to be on my left side because that's my good side. And then the vice versa, if I don't have my implant on, for whatever reason, like you need to be on my right side because that's my right side or my good side.
[00:32:56] But I do like having. The residual for me, just because I have so much residual low frequency hearing, having that was the residual low-frequency hearing just brings back, I guess, the natural acoustics that I'm used to of escaping. It's 
[00:33:15] Samantha: almost like a, it's an a to like a comfort thing. I, you know, in a way too, cause I can only, I have always heard this right now.
[00:33:21] I'm just hearing better this way. Um, when they do my testing at Vandy, like there's a huge difference in noise. Like if I had just had my implant on versus if I had my hearing aid and my implant on so, you know, somehow my point is using both that like both of those, um, To make a lot more sense of it and noise too, which is like the most challenging environment.
[00:33:44] So, um, yeah, the combination of the two is like the best 
[00:33:49] Carrie: that is in that. Most frequently asked question by people who don't have, you know, experience, uh, where they aren't pushing off his name. So it's like, how is your brain going to get used to this signal? That's total electronic and natural acoustic signal.
[00:34:09] How is it going to bring it together? And it does. 
[00:34:14] Samantha: We don't know, but it works
[00:34:18] Carrie: so was there anything after your implant that you felt like you did to kind of speed things up? I know you kind of got thrown back into work obviously, very quickly, and that can be a challenge, but did you do anything on your own or did you have therapy that you felt like kind of fast tracked to progress?
[00:34:38] So I 
[00:34:39] Samantha: didn't do any therapy per se. I would listen to podcasts. Like I would I'm stirring the pot that I would be. So when you're in clinic, there was a lot of driving. Um, so I would turn on a podcast in my car and just. Leave my implant on and try to listen, um, through that, or, I mean, when those are too hard to podcasts, a difficult for me already, uh, are still, I would say, but, um, like even just listening to music, like songs I knew and, um, you know, I knew what the lyrics would be.
[00:35:12] So I could, you know, with like figure out what the lyrics were just using my implant. So, I mean, that would probably be the only thing I did do audio books for a little while. But everything was just kind of on my own, like using my commute, that sort of thing. Yeah. 
[00:35:28] Carrie:  Maximize that dive time, right? 
[00:35:30] Samantha: Yeah.
[00:35:30] Might as well. Well, 
[00:35:36] Carrie: we definitely have a similar journey with a cochlear implant. I just want to say to thank you because I got my implant a couple of years after you did and  great sounding board for me when i was making that decision
[00:35:53] Samantha: That's terrifying. You don't know if you just don't know what to expect, you know? And like now I'm like, dang it. Why did I wait so long? But I mean, you really just don't know. And it's like, the fear of the unknown is, is pretty intense. So, um, I mean, I'm glad that I was able to, uh, you know, be a good, safe, like sounding board too, because I mean, I think that's what we do.
[00:36:16] Right. I see. As audio audiologists who have hearing loss, I think that. You know, you just kind of want to tell parents to go for it and you just want to like, know, let them know it's going to be okay. So I think that's a huge way that we give back and it's cool to be able to give back to colleagues 
[00:36:31] Carrie: as well.
[00:36:32] Yeah, it is. And I think what you said about it took you about three years to kind of come to that point where you're like, I'm going to make an appointment like you. And it is, I think it's a whole different Ball game when you're a patient. Oh, 
[00:36:48] Samantha: absolutely. 
[00:36:50] Carrie: So to be able to have that perspective for parents and, but, you know, teens and adults, um, to say, Hey, like you're still a human being and you still have to go through that emotional process of, um, getting to the point where you feel comfortable.
[00:37:08] Samantha: Absolutely. Absolutely. Yeah. I mean, sometimes I feel like I, maybe I'm a little bit, I don't wanna say aggressive, but I'm like, just do it, just do it. Like, you know, I think, you know, most of the time it's cleaner, it's gonna work out better than you could ever imagine, but it's got to be more judgment. So it's really, you know, it's kind of tricky sometimes I want to be respectful, but it's like, oh, if you could just do this, you know, like, um, shout it out.
[00:37:33] We see that obvious cochlear implant. You candidates, it's just heartbreaking. Cause I, you know, we've experienced the power and the change and you know, how much easier it makes life. So that's hard. I think that's one of the hardest things. And, and doing what we can do it anyway. I do, or whatever. It's just like, man, oh, I just want you to do it.
[00:37:57] Don't hold back. But no, well 
[00:37:59] Carrie: right. But everyone has their own process too. So I have to be, I guess, a support along the way in wherever, like part of their journey that they're on is, is important to. So kind of switching gears just a little bit before we wrap up today, I just wanted to ask you, um, you have been an integral part of a campUS experience, which is a overnight experience, at least pre COVID that we, um, my colleague, Dr.
[00:38:31] Gail Whitelaw and I do at the Ohio State university. And that you were gracious enough to be a counselor for. So, can you just share a little bit about what your experience was being a counselor and how that, you know, kind of paying it forward is helpful? 
[00:38:51] Samantha: Absolutely. Well, it was so much fun and like, just so rewarding and to me, Like, you know, campUS and all of that, like, that is just why I do this.
[00:39:01] Right? Like, um, like I said, I feel like that spot where teens are transitioning into adulthood, it is one of the, one of the most under-serviced. And I just feel like making it fun and doing this camp and bringing peers with hearing loss together. That is such a, um, Critical point in life to do that. You know, these kids are like facing the unknown and they don't really know what to do, but then here's adults with hearing loss who are kind of cool.
[00:39:27] Just, just getting Jasmine, like we're fun. But anyway, so it's like, you know, we have those conversations. Um, can't have with anybody else, you know? And so when they're talking to their students or talking to their peers with hearing loss, like the laughing about awkward situations that they've been in because of their hearing loss and, you know, I think there's so much stress and anxiety that comes with, you know, going to college or going to the workforce or doing whatever you're going to do after high school.
[00:39:57] And so knowing that you aren't the only person out there with this and developing. Those friendships and those bonds and seeing these mentors in the okay. It's going to be all right. Um, I think that's just, that's a powerful thing to be a part of. And I was honored to be asked to be a part of it and work with you and Dr.
[00:40:16] Whitelaw. Oh my goodness. She was amazing. Um, I think, you know, when like people like me and Jasmine and like, because the other people who were there, I feel so bad, but I mean, we, Jasmine is like one of my close friends. So I just keep saying that I think that, um, we can talk about our experiences transitioning to adulthood and they're all different.
[00:40:40] Right. So. It also just normalizes the differences of experiences that we all have, and then we have fun and that and then it's just a good time. And, um, I loved it. It's fantastic. 
[00:40:55] Carrie: So did you feel like meeting some of the other counselors? How was that experience? I don't know if you've ever really had like a peer mentor kind of before meeting 
[00:41:08] Samantha: other.
[00:41:09] What I owe and never forget. So this is a different camp. It's called Bear lake camp in Michigan. And so it's a, a camp it's like a week long camp for a kid who, uh, is an oral program for kids with hearing loss. And it’s a camp and. I will never forget the first day. I like we were checking everybody in and you see these kids come in and there's literally a weight lifted off their shoulders.
[00:41:34] You're going to see them relax. And still like how it feels. Um, when you meet, when you're in a group of people with hearing loss, you know, um, I think about at the AAA conference, we always have the meeting of audiologist with hearing loss and it. This amazing people, amazing place with all these people, and we're all bouncing ideas off each other and trying to figure out how can we all help ourselves and sharing experiences and just to kind of a different sort of a safe place, um, where it's like, okay, yeah.
[00:42:06] You know what I'm talking about? And, uh, so I think that that is obviously something that I experienced with the counselors and, um, my. Yeah. It's sometimes too. It's like a little bit like, oh, I will say sometimes I get a little bit of anxiety. Sometimes meeting somebody else with hearing loss because you just don't know like, Where they are.
[00:42:27] And some diff that makes sense. Like, cause I have a pretty like open book about anything. Like people can ask me anything I'm, I'm not going to hold back. People can like say jokes, you know, say something offensive and I won't be offended, but other people might not be there. So sometimes I'm always trying to gauge that.
[00:42:44] Um, but when I meet people with hearing loss, Right that weight off your shoulders. 
[00:42:51] Carrie: It is, it is. And I just, that was one of the reasons I really wanted to start something like that. Then be able to have the, in the shoes experience with someone else and recognize like, all right, I might be the only person at my workplace or my school or wherever you might be, but there are other people out there that.
[00:43:16] Samantha: Absolutely, And like the internet, like Facebook, like Instagram just took all of these like ways that we can communicate. Um, I think makes it so much easier for everybody to like, stay in touch, you know, like if something happens, something funny happens or something awkward happens, or you're like, oh my God, Jasmine and I we'll text each other, you know, and it's just like really cool to, you know, those friendships and those relationships don't they only come from things like this.
[00:43:40] You know, the majority of people with hearing loss are in the hearing majority. So we're not finding each other. And I don't think that we innately seek each other out. You know, I think that we have to be brought together because we don't identify as, you know, only somebody with hearing loss and it's not.
[00:43:57] Like, there's not like a deaf community around it with like the hearing community around it. So it's just a place that we have to carve out and relationships that we have to develop. And campUS is such a, an amazing way for us to do that. 
[00:44:12] Carrie: Yes. I think it's just important for professionals who are listening or parents or individuals that do, uh, who are deaf and hard of hearing to hear that because.
[00:44:24] We can, we, we can make these connections for people, but if sometimes needs to be, I don't want to say forced, but brought together so that people understand the value of it. 
[00:44:37] Samantha: I feel like I just like, because there's this middle that we're in, right. You know, like not big D deaf. We are hearing, we, we identify as hearing.
[00:44:47] We're all we can hear. So we're always, you know, Well, making it work in that world, but then there's this part of us. That's not necessarily like, I don't know what the word for those as part of us is, is a little bit of a void or whatever. I don't even know if it's a full void, but like, it was just like, oh, there's something missing.
[00:45:06] Oh, I'm just always trying harder in this world. And then the other, well, let me go. This is what, this is the coolest space. Like this is like not taking away from who I am here, but it's just adding like a deeper connection and understanding. 
[00:45:21] Carrie: Yeah, because there are a lot of challenges in the hearing world.
[00:45:24] So to be able to talk to someone who is experiencing the same challenges and how they navigate is important. So I think that's, yeah, that's 
[00:45:34] Samantha: helpful. I hope I hope. I hope I can others too
[00:45:38] Carrie: And I hope we get to be back in person sometime too, because the virtual connection is, is hard, but it's better than nothing. So I have to say that much.
[00:45:48] Absolutely. As we wrap up today, is there anything else that you want to share with any of our podcast listeners that I didn't ask you? 
[00:45:57] Samantha: No, I don't think so. I feel like we've covered the gamut of everything. 
[00:46:02] Carrie: Yay. And if people want to get connected with you, if they have questions, is there a way that they can connect with you?
[00:46:10] Samantha: Yeah, absolutely. I mean, um, probably just my email would be the best way to be honest. I don't have like any other, um, like I don't have any of the websites or anything like that. 
[00:46:22] Carrie: Um, active and like LinkedIn. 
[00:46:25] Samantha: Oh yeah. I am active LinkedIn. 
[00:46:29] Carrie: And I can put your LinkedIn, um, 
[00:46:32] Samantha: yeah, if you want to just put my LinkedIn and my email, or maybe LinkedIn would be the better one.
[00:46:36] If you want to just put my LinkedIn on a, in the blurb or whatever, that would be fine. 
[00:46:41] Carrie: I put it in the show notes display us. So, but I just wanted to say thank you so much for being part of this podcast and sharing your Professional and personal journey. I hope our listeners will gain a lot, which I'm sure they will.
[00:46:55] And I just appreciate all that you do as, um, and your own field in Michigan, because I know you, um, certainly do help, uh, have a ripple effect on the kids that you serve as well as the professionals that you get to interact with. So thank you again for being part of this. 
[00:47:14] Samantha: Thank you so much. Carrie. I am honored to be a part of it.
[00:47:18] Carrie: All right. Thank you for joining us on the empowEAR Audiology Podcast. And please feel free to share this podcast with any other listeners that you think will benefit. Have a great day. 
[00:47:32] Announcer: This has been a production of the 3C Digital Media Network. .

Episode 27: empowEAR Audiology - Dr. Michelle Hu

[00:00:00] Announcer: Welcome to episode 27 of empowEar Audiology with Dr. Carrie Spangler.
[00:00:17] Carrie: Welcome to the empowEar Audiology Podcast, which is part of the 3C Digital Media Network. My name is Dr. Carrie Spangler, and I am your host. I am a passionate audiologist with a lifelong journey of living with hearing challenges in this vibrant hearing world. This podcast is for professionals, parents, individuals, with your own challenges and those who want to be inspired.
[00:00:46] Thank you for listening, and I hope you will subscribe, invite others to listen and leave me a positive review. I also wanted to invite all of you to visit and engage in the conversation and the empowEAR Audiology Facebook group transcripts for each episode can be found. www three, the number three C digital media network.com under the empowEAR Audiology podcast tab.
[00:01:19] Now let's get started with today's episode. All right. Hi, everyone. Welcome to the empowEAR Audiology Podcast, and I am really excited to have a return guest with me today. I have Dr. Michelle Hu and, uh, from mama who hears, and she is a pediatric audiologist who also like myself has bilateral hearing loss and she uses cochlear implants.
[00:01:46] And I actually interviewed Dr. Hu and the episode 16 of empowerEAR Audiology. So please go back to that episode and you can hear more about her personal journey.
[00:02:00] Michelle: Today,
[00:02:01] Carrie: however, I have Michelle on this podcast because she has a new adventure and a new resource that I want to find out more about. And I think all of our listeners are going to want to know more about this amazing resource called “My child has hearing loss now what?”
[00:02:21] This is a great question. And I can't wait to hear more about this resource. So welcome back Michelle, to the empowEAR Audiology
[00:02:30] Michelle: podcast. Yeah. It's I love hanging out with you, Carrie. Thank you so much for having me here. Um, yeah. I have a new adventure for the past several months. I've been working on this program.
[00:02:42] Um, and how it came about is I started my Instagram and I said, you know, what, if I still have fun with this in a year, I'm going to do something, a big project, something that can really. Help others hope, you know, and maybe change the world of audiology. Um, I started getting so many questions from parents and I just wanted to step up to them and give them a hug.
[00:03:12] I wanted them to say, schedule an appointment with me, come and see me. But these parents are all over the US all over the world. In fact. So I started putting together. Basically a curriculum or a list of things that should be addressed or that I wanted these parents to have information and resources about it started.
[00:03:36] Oh, go ahead.
[00:03:37] Carrie: So how did you come up with this list? Like, what is it because of your personal experience, your professional experience, how did you come
[00:03:46] Michelle: up with the list? The questions I was getting from parents were very similar to what I would get in the clinic, but in the clinic, while we have protocols in place, we have got my phone.
[00:03:59] Um, we have we have a system, we have a path for them to follow and. I quickly realized, wow, like not everybody has access to pediatric audiology for one. Maybe they're going to an adult clinic. Um, maybe families in rural areas, you know, can drive three to four hours away. I have patients that, you know, I'm in California, some of them drive from Mexico over the border to come see us.
[00:04:33] Some of them drive from four to five hours away in Arizona to come see us. And I was just thinking my goodness, I want to be able to somehow package everything that I talk about and give it to parents. How am I going to do that? Well, a video of course might be a good idea, but I don't want to. I don't want to, I can't, I can't test, you know, their child through the internet, through the computer, but I can give them all of the knowledge that I give to parents at the end of appointments, as I'm walking them out of the hallway through the door
[00:05:12] All of those things come from my personal experience. So, yes, um, I've collected all this information while, while being a clinician, but I also have, you know, 38 years of personal experience that I can share and that I think can help a parent get a sense of calm, more confidence, and, um, try to. You know, settle down the anxiety or the doubt that they might feel.
[00:05:40] All of the information is out there. I'm just packaging it up and. A nice little package with a hug. Oh, I love
[00:05:48] Carrie: that idea. So I was just looking at some of the information that you have put together and the different topics that you do have, and they're all very important topics, but I thought we could just highlight maybe a couple of the topics that are going to be included in that, in your book.
[00:06:07] And maybe before we do that, can you just explain. Uh, the package that you're going to be offering for parents and possibly professionals
[00:06:16] Michelle: too. Absolutely. Yeah. I started off with the idea of, I want to create video modules for these parents to be able to watch. I am a mom of two little kids. I really don't make time to sit down and read books.
[00:06:33] Um, and maybe that's the way I learned to, I just want to see things and be a little bit more interactive. So I started writing down, you know, I have eight modules. The first is processing the diagnosis or when your child is identified with hearing loss. Uh, family, some families are devastated. My mom was, and some families actually feel a sense of relief.
[00:06:59] Maybe that parent has been suspecting something's going on with their child, but all the doctors are saying, no, no, no. They're just, you know, just give it time. They're lazy. Or whatever, um, that parent might feel a sense of relief when they finally find out what's going on. Um, I go over audiological testing, what kinds that we do for different ages or different cognitions.
[00:07:24] Um, and. I explained, I also told the parents, how can you prepare for this appointment? This one will be longer. This one will be shorter. Um, you want to be well rested or maybe for a sleep test. You actually want to bring your child super cranky. There and we're, we're SO we're very happy to see your child with cranky.
[00:07:46] So that means they'll sleep through our test. Um, and with, with that, I chose to interview several professionals that could help with that. It included an ENT. I included a marriage family therapist and SLP and auditory verbal therapist. I also included, um, Interviews with a mom of two teenagers with hearing loss, a deaf mom.
[00:08:13] Uh, so Emily Burke, is her name's, she grew up in a hearing family. She uses ASL as their primary mode uh, primary language. And she has a deaf daughter and a hearing son with incredible to see her journey as you know, a deaf parent from different. Different walks of life. I interview my own mom. I, that one made me cry because I got to see a part of her.
[00:08:42] And she shared different emotions about her journey that I had never known. Maybe she was afraid to share before. Cause she thought it would hurt my feelings, but I was just like, oh my gosh, mom, like you, you felt the way you felt. And it had nothing to do with me. Um, anyway, so back to the curriculum, I, I go.
[00:09:05] What are some options? If you want your child to be amplified, I go over different languages. You can use the auditory verbal spoken language. You can use sign language, whichever one it is. It's important that your family that is completely a hundred percent on board. Um, So it's not easy either way, you know?
[00:09:29] Um, but talking about those decisions, they included some exercises, um, in the handbook that are there other conversation starters, so conversations to have with your child conversations to have with yourself conversations to have with your co-parent, if you have one. So there's eight modules in the program.
[00:09:51] There's 13 bonus interviews in these video modules. And then I thought, oh, I want to create some supplemental material. I thought it would be a few PDFs. Well, it turned out to be like 130 pages, so it made it into a handbook. Um, and it was just, this project was just growing bigger and bigger. And I couldn't a lot of these things I couldn't say no to.
[00:10:14] So I was like, you know what, we're going to do a complete package. I'm offering just the handbook alone. You can get that on or without the video, you can get the handbook and the videos, if you'd like that, um, that's the complete package. And then for people who need some extra support or one-on-one sessions, I've offered the handbook, the program, and then a 75 minute, um, where at least to start a time to chat with me.
[00:10:43] Um, and see, you know, talk about what your specific situation is like, where your anxiety is, how can I help you and how can I support you?
[00:10:52] Carrie: Wow. That is an amazing package and 130 some pages that is a lot of resources for people for, I mean, as a parent and just what you commented about your mom and the emotions she was going to talking about it and a video now, how do you think this.
[00:11:12] Package or what age group for a parenting does it really target was the all age.
[00:11:21] Michelle: It can apply. It's mostly targeted to those parents of children who, um, from birth to that first year post identification or post-diagnosis I do include, um, how to take care of yourself as a parent of somebody who with special needs.
[00:11:40] I had to also talk about how to advocate for your child. And then we get into school age. So it's a wide range. The first part is really that first year post identification or diagnosis. And then the second part is more school age. What can I do? We talk, I interviewed Tina Childress who is an educational audiologists like yourself.
[00:12:00] And she talked all about IEP. Then what kind of services that schools can offer? Whether your child is going to use spoken language, or if they're going to use sign, assigned language. So it's giving the parents resources of how do I navigate school now, wait, there's an educational audiologist. And I have somebody in the clinic, what are their different jobs?
[00:12:23] And I really pose these questions to these professionals so that parents can. They can kind of meet an educational audiologist or a speech therapist, so they can find one in their area and also have a little bit more confidence going to meet them and knowing what they're there for. Instead of, I don't know, you're a professional.
[00:12:45] You tell me what to do. Okay. So if they can go into that appointment with two feet firmly planted on the ground, this is what I want. This is what I'd like to get out of this appointment. They can work that much closer and better with that professional and really reach the goals that they want for their family or for their child.
00:13:04] Carrie: Right. So empowering that parent is so critical and this whole process, and it's obviously a journey.
[00:13:12] Michelle: I remember like when we were young, we had Dr. Flexer and I think the parent support group with only just starting, they were stumbling their path and figuring out what to do. Um, and our parents didn't have Google back then.
[00:13:30] They didn't have internet. They didn't have Facebook support groups or Instagram,
[00:13:37] what they could, they did the best with what they could.
[00:13:41] Carrie: Yes. Yes. So there's so much out there, but I think sometimes it's overwhelming. So to be able to have a resource like this, where it's packaged. So parents have a go-to resource and they can get other information, but to have a kind of a, a baseline I guess, for where to get that information
[00:14:04] Michelle: and it's all out there.
[00:14:06] Um, my stance is I'm going to give you the resources. Point out to you where they are, where you might find them and you make the decision that's best fit for your child and your family. You know, um, a lot of resources or some, some groups feel like, oh, I don't have the freedom to make this, this choice for my child.
[00:14:28] Oh no, you're the parent. You do, you know, your child best. You know, these are the ingredients for whatever journey that you want to partake and go on and try this, try that, try whatever, find what, what is best fit for your family? Really?
[00:14:47] Carrie: This resource sounded very comprehensive, especially if I'm a pediatric audiology audiologist.
[00:14:53] And like you said, 38 years of personal experience and this journey, do you think this resource would also benefit other like professionals and who do you think it might be beneficial for?
[00:15:07] Michelle: Yeah, I created this thinking or with having the parents in mind, however, then I thought, you know, what? Audiology students might be able to benefit from this too.
[00:15:18] A speech language pathologist would benefit from this as well, early interventionists. We, it seems, it feels like. All of the different healthcare professionals, you know, where we specialize in something. Well, how much do we know about the other team members? Um, I think it would be a great resource for them to watch, to see me, somebody who's had hearing loss and, um, has navigated.
[00:15:46] You know her journey one in one way, for example. Um, so I think definitely a lot of different healthcare professionals related to hearing or spoken language or ASL could definitely benefit, uh, from either just the handbook or, or the videos as well.
[00:16:05] Carrie: Yeah. I was just thinking sometimes I have families in different areas may have like an early interventionist, but the early intervention.
[00:16:15] has a more global view of early intervention, which is great. You want that view too, but to be able to have a resource that they may be able to walk the family with the family and help them guide them through that too. Um, at the, you know, another person on the advocacy team that work with.
[00:16:36] Michelle: Or even therapists or counselors who work with children with hearing loss are families with hearing loss, um, can definitely benefit and say, oh, well, I watched this program.
[00:16:47] I know that there are these types of resources out there. Maybe he, or she has never met them, but this is where you would be able to find it includes so many different resources all over the world. Uh, since I do have some, um, followers that are like in the UK and in Australia now, the portions or other, the video that the, an interview with Tina Childress.
[00:17:12] She mostly talks about schools in the United States. So that part might not be able to offer as much resource or information to those families. But I mean, it's, it's all of like, it's so much, there's so many other parts to it too.
[00:17:29] Carrie: Wow. That's great. So is there anything else, I guess one other question would be if that had kind of a book format, how do you suggest.
[00:17:40] Um, parents or professionals end up getting the book going through it. Do you think of sequential or whatever's happening in their life at that moment?
[00:17:50] Michelle: I wrote an essay about this in the introduction of the book, take a look at all the different topics, see where you're at in your, in your child's journey, but also see where you're at in processing all of the emotions and thoughts and.
[00:18:05] You know, stories that are, might be swarming in your head around what's going on and take it at your own pace. Do what works for you. Don't try to learn everything all in one sitting. There's no way, you know, our moms took years to figure out what was gonna, um, what they wanted to do, or even figuring out what goal there's journal prompts in the book as well, too.
[00:18:29] Uh, identify the emotions and identify the stories that might the parent might be creating, or family member might be creating. Um, the videos go fairly, really good in terms of chronological order. Okay. Well, let's talk about the diagnosis and let's just only talk about that. Don't worry about, you know, testing or amplification just yet. The audiologists.
[00:18:54] We'll we'll get there. Um, so it's really. Take what works for you right now, leave it, process it and go back. When, whenever you have a little bit more information or when some of your thoughts and stories have settled,
[00:19:10] Carrie: I like your idea of having the journal prompts within the book. I think we all. For a couple of reasons.
[00:19:19] I think writing things down is helpful to kind of get that out and then to be able to reflect back on what you journaled too, and maybe kind of follow up with the journaling, how much you learned along the way or what you might do differently. And when you write it down, it just gives you something to go back to.
[00:19:38] Michelle: And no single no one's journey is the same as anyone else. I tell cochlear implant patients. They get, you know, frustrated how come I don't hear as well as that person. Well, it's not fair to compare you to them who might be five years out. You need to compare Carrie uh, three months post a cochlear implant activation to Carrie at day one.
[00:20:04] Look, wow. That's a huge difference. Did you notice that, you know, and everyone's journey is really unique and different.
[00:20:13] Carrie: Yes. So, is there anything else that you want to share about this launch that you just had in August and what? Um, I mean, I, I think obviously we want to know where to find this information, but is there anything part of this package that you want to share that I haven't asked you yet?
[00:20:34] Michelle: Hm. And it's available on my website, a mamahuhears.com. And it's literally me sending a hug out to those parents. I think I was, I think I created it for the little Michelle's out. I didn't necessarily have the language when I was in grade school to know how to advocate for myself. My mom was figuring out her own way too.
[00:21:04] And it's trial and error, of both of our lives, you know, 30, 30, 40 years of experience of figuring out what has worked for us, going forward with that, throwing away what hasn't worked for us. And we can only learn from other people's sharing is such a gift if we share. So yeah, I thought of this program, it started snowballing into an even bigger project.
[00:21:35] And at one point I was just like, I can't stop like this, this absolutely needs to happen. It needs to be out there. And I have three goals for it. One is that. Pediatric audiology, um, and clinicians, the standard is I think that we all, um, should really strive to be on the same page to strive, to be, uh, in an excellent level of care that we provide.
[00:22:02] I see parents becoming more confident in what to do, where to bring their child and where to go, or how to search for information to navigate this journey. And then I see those little kids being growing up in a supportive village. It really does take a village and a team and really just truly growing up knowing I can do whatever I want.
[00:22:28] I can do. I can achieve anything that I dream of. You know, hearing less doesn't have necessarily have to define the trajectory of my life or what I accomplished. I can, I can still do anything that I dream of, but those were my three goals for this
[00:22:42] Carrie: program. Yeah. Those are excellent goals. And I love the title.
[00:22:47] My child has hearing loss. Now what? it gives you that next steps of where to go next and how does. Take your journey to the next level. And I love the goals for this, but I am going to go ahead and put in the show notes, link to your website so that people can get on to the website. They can read more about it.
[00:23:08] They can find out how to order the book and if they want the book in the video, or if they want the book, the video, and some VIP support with you. I think parents really appreciate that at some points in time. And then for our professionals that there, they can take a look at it as well. And see if it's something that might be a benefit for them and early intervention or that clinic, or just to have as a resource, to, to learn more, um, about this journey, because you definitely have, um, both that professional and personal expertise with really.
[00:23:43] Like you said it speaks from the heart too, and that it gives everybody a big hug because you have so much empathy for what you do. And so much insight into what you do, that parents are going to really value this resource. So thank you for coming onto the empowEAR Audiology Podcast and sharing about this wonderful resource.
[00:24:06] And I hope that other parents and professionals will take a look at it and get ahold of you to find out more information.
[00:24:14] Michelle: Yes, absolutely. Thank you so much, Carrie, for your time and letting me be here.
[00:24:19] Carrie: All right. Thank you all listeners for listening to the empowerEAR Audiology Podcast, and, um, be sure to share this information with all of those that may benefit from it and have a great day.
[00:24:33] Announcer: This has been a production of the 3C Digital Media Network.

Episode 26: empowEAR Audiology - Drs. DeConde and Cannon

[00:00:00] Announcer: Welcome to Episode 26 of EmpowEAR Audiology with Dr. Carrie Spangler.
[00:00:17] Carrie: Welcome to the EmpowEAR Audiology Podcast. My name is Dr. Carrie Spangler, and I am your host, a passionate audiologist with a lifelong journey living with hearing challenges in this vibrant hearing world. I wanted to have an empowering audiology podcast for all of my listeners. Many of us learn and grow by being in communication and connecting with others.
[00:00:42] It is my hope that all of my listeners will learn something new and be empowered after each episode, whether you're a professional, a parent, an individual with hearing challenges, or just want to be inspired. I am glad you are here with us today, and I am extremely grateful that you're with us for today's episode, which is a recap of the live Facebook event that took place on August 24th, 2021.
[00:01:13] If you didn't catch us live. No worries. Today you're with us on this podcast and you will get the recap of everything that happened on the live event. This live event was , featured two incredible individuals, Dr. Cheryl DeConde-Johnson and Dr. Lisa Cannon. And the topic was back to school, hot topics and serving students who are deaf and hard of hearing in the school setting.
[00:01:45] You can find more information about the empowerEAR Audiology podcast on the three C digital media network based website. And you can also find the transcripts on the website as well. So without any further ado, let's get started with today's episode. Okay. Hey everyone. Welcome to the empowEAR Audiology live Facebook event.
[00:02:14] I'm really excited to have this event today. We are going to be talking about back to school, hot topics for students who are deaf and hard of hearing. And I think this is a great topic as we get into, um, the new school year. So for those of you who don't know who I am, my name is Dr. Carrie Spangler, and I am an educational audiologist.
[00:02:38] I also have a lifelong journey of living with hearing challenges. Um, vibrant hearing world. I have a cochlear implant and I also use a hearing aid and I am the host of the empower Audiology podcast. And one of the reasons we're going live tonight is because we are celebrating one year anniversary of empowEAR Audiology with 25 episodes over the last year.
[00:03:06] And we thought we would have another great event tonight. And so if you haven't listened to the empowEAR Audiology podcast, I encourage you to go to apple or Spotify or wherever you listen to your podcasts and you can find it there, or you can visit that three C digital media network web page, and you can get online and listen, and there are transcripts available online as well.
[00:03:36] So I just wanted to introduce, I had two amazing guests with me tonight, and we are going to have a conversation with all of you about back to school, hot topics. And I have Dr. Cheryl DeConde Johnson with me today, and she was brave enough to be my first guest on the empowEAR Audiology podcast. And brave enough to be the first guest on Facebook live tonight.
[00:04:01] And she. Has such a, uh, bring so much experience to the field of educational audiology. And I'm so excited to have her tonight too. And then we have Dr. Lisa Cannon, who is, um, the president of the educational audiology association. And she also has her boots on the ground running as an educational audiologist in the Denver public schools.
[00:04:28] So, um, she's going to have a lot to add to this conversation because she has been running about just like I have, I'm trying to get, uh, the year set up. So welcome Cheryl and Lisa, thank you for joining me.
[00:04:46] Lisa: Great to be here. Thanks for having us good.
[00:04:50] Carrie: And I just want to welcome everyone who is joining us live today or tonight or wherever you might happen to be you, but the time of the day it is.
[00:04:59] And, um, and could any of you to, um, give us a thumbs up emoji, write a comment, um, the, whatever you feel as we're having this conversation tonight, we're going to try to pay attention to the comments and, um, make sure that whatever you're thinking about you are engaged as well. And, um, so those of you who are listening or paying attention on the replay, um, we hope that you will engage with us on the empoweEAR Audiology, Facebook page, um, as we kind of keep this conversation going with this view beginning.
[00:05:36] And so, um, I think just start, um,
[00:05:44] That's okay. That's why won't lie, but we have technical difficulties sometimes it's kind of a good segue. Um, so last year was a crazy year. I think we can all admit that. And we had no idea going into last school year, what to expect. Um, so I think my first question would be going into this year, I think was still going to be in a very flexible mode.
[00:06:13] We don't really know exactly what to expect for the whole school year, but what can you guys think of that happened last year that we can bring positively into this year as we begin the new school year that we want to bring forward and keep doing.
[00:06:34] Either one,
[00:06:35] Lisa: I will start because I think there are quite a few positives that we can take forward. I actually, as I was thinking about it and talking to a lot of our colleagues and listening, I really think that we are going to, um, continue the amazing connections. That's what I kept hearing. Like the ability to connect with families.
[00:06:58] Um, during COVID even, even during the shutdown while challenging, it was also in a little bit improved than a traditional school year. You know, we were able to get more parents were able to join in their kids' IEP meetings. And more professionals were able to join in those meetings. And we were, we were just a little bit more connected and I don't know if that's because of like the efficiencies of virtual meetings then while we're all sick of zoom.
[00:07:28] I think that zoom and zoom and Google meet those kinds of virtual meetings are here to stay. Um, at least there are in my district, we're still having virtual IEP meetings this year. So, um, I think that's a positive. And even though I'm sick of looking at the screen,
[00:07:49] Cheryl: I cannot have some, yeah. Um, I think we learned so much in the last year and a half about technology and how to make technology work for our students and what kind of support that teachers needed. So I think our toolkit grew a lot over the last year and a half and hopefully. We don't have a lot more, we have to learn because we've kind of done it all.
[00:08:15] And so I think we're just better equipped for whatever brings, whatever technologies come our way. We've kind of done it all in the last year and a half. And so hopefully it's not as challenging this year as it has been in the
[00:08:28] Carrie: past. Yeah. We definitely have some tricks in our toolbox this year and moving forward as far as what we needed to do and flexibility and, and things like that as well.
[00:08:40] So I think one of the greatest things about technology too, is it makes you think outside of the box. And we've had so many, I think, advancements with, um, some of our technology, whether it's, uh, you know, some of the automated captioning and being more available on different platforms. And I think I was telling both of you, um, before this, one of the things that I, um, did was record, uh, like kind of front loaded overview inside of it.
[00:09:10] It's about hearing and, um, hearing challenges in the classroom that really applied to any of our kids, um, to be able to share with, with whole teams of teachers and just be able to send that out. So have you heard or talked to anybody who've been doing things like that?
[00:09:30] Lisa: Definitely. I think, I think teachers are a little bit more open to it.
[00:09:36] It's easier to get them a message or to get them the information electronically these days. Um, and then, you know, showing up in their classroom and doing an in-service. And so I think those resources, like you said, that we created are where they're sticking around, for sure. We're still we're using them.
[00:09:56] And I, what I do love is that I think, um, going forward throughout the year, rather than me running over to do some troubleshooting, um, for kids in person, which for me, it's only a 20 minute drive maybe to my furthest school, but some, some for some of our educational audiologist, it's like an hour and a half, so that they can get on a video.
[00:10:16] You can hold up the device, it can talk through it. And I'm, I'm loving that even in a, you know, even just having. Get not be in my car quite as much for small issues. And that's, I I'm excited about that for this year.
[00:10:32] Carrie: Yeah. I just had that happen to me yesterday when I had a teacher who, um, texted me and she's like, I, I can't get the boot on.
[00:10:42] And I was like let’s face time. And so she should just show me and I'm like, oh, so-and-so got new hearing aids. That's why you can't get the boot on. So it solved the problem really quickly. So we could move forward instead of me driving over there and realizing like I'm going to need some other pieces and parts in order to get this fixed.
[00:11:04] And, um, but it was a great way to quickly figure out the problem and go on with the next step.
[00:11:13] Lisa: Because everyone is so comfortable with the format that, you know, with the video format. Now you can do it on your phone, on the fly. If everyone's comfortable with that. So I think it's, it's, it's kind of a cool thing.
[00:11:27] Carrie: It is. Yeah. So kind of thinking about, I mean, I think they've learned so much. Am I going to take so much forward moving forward. I haven't, but I think we also have a lot of hot topics that we can talk about as we move forward into the end of the school year. And I know Lisa you've been on the ground running as we started at the school year.
[00:11:52] Is there any hot topics that really have stuck out? Um, so far.
[00:12:01] Lisa: I'm trying to think, you know, I can't pinpoint one particular hot topic, but I just want to like address kind of the, the mood, right? The mood that's out there. Like there's this, um, there's this kind of, I think kind of like, uh, it's, it's cautious, but it's so hopeful. Everyone is really happy too. The kids are so happy to be back in school.
[00:12:28] The teachers are so happy to be back in person, but yet there's so much unknown about where we're all going, like you mentioned. So I think that, um, That I noticed myself the first few days, I was just grinning ear to ear just from seeing my kids and starting a new school year. And their parents were so happy and nice.
[00:12:51] And it was just, um, that's, that's kind of been refreshing, you know, it, it reminded me of kind of what I love about my job and what's, so it's not necessarily hot topic, but COVID, and where we're going, that is where we're going this school year. I mean, that is the big unknown. And I guess we can chat about that here real quick.
[00:13:14] Cause we're S we're still in masks, at least in my part of the country. And that's, um, was a challenge last year and that is still a big challenge. Um, so that audibility in the classroom, that visibility of speech reading, that seems to be probably the one that's sticking around, you know, the most from last year,
[00:13:37] Carrie: Yeah, that's sticking around for us too.
[00:13:39] And I cover quite a few different districts and every district has their own policy right now. And so it, you know, figuring out what their policy is and, you know, the level of comfort with teachers and students and what they're coming in with. So it is kind of hard. There's no one right way to do things.
[00:14:03] Um, so I think we have to take a lot of what we learned last year, which is, I think it came down to at least what I think. Individual kid and evaluating each individual kid and determining what type of setup is the best for them, because some of our kids did really good with a clear mask and some didn't do so good with a clear mask.
[00:14:29] Um, some of them needed, we needed to really, um, reintroduce, maybe technology that they may not have wanted to utilize in the past. And now they're realizing that they really need that technology. Um, so I think those, those were some of the things that I've seen so far. Cheryl have you heard anything like nationally?
[00:14:55] I know you kind of sit more on national level, um, consulting.
[00:15:00] Cheryl: I think it really has so much to do with what the, uh,the infection rates are in the communities that you live in. You know, I, I know in some states there's so many kids that are being quarantined because if you do our tests a you're positive, and of course there's no shots for our younger kids, then they have to stay home and quarantine for 10 days.
[00:15:24] So I think it's going to, it's just challenging. Um, and you know, we just have to. Go with the flow, be flexible, have some grace, um, and just know that this is still a very challenging time. And while in Colorado, where Lisa and I are, things look pretty good. The elementary new elementary school, where I live is everybody's back on board.
[00:15:45] And, um, they're not even wearing masks, but yet at another location, other school districts in Colorado, it's very different. And as Lisa said, and then in other states, the thousands of kids that aren't in school because of exposure. So, you know, um, we'll talk about this more, but I just think our teachers are angels for what they do.
[00:16:07] And they, um, you know, they're responsible for so much and they have to deal with the various viewpoints and what parents want for their children. So kids may be flowing in and out of school. I don't know. I just think that our teachers are really needing lots of kudos and support for everything that they are challenged with.
[00:16:34] Carrie: Yeah, no, I agree too. Um, so I think this kind of goes along with the mask, but, uh, most, you know, all of our kids and all of us are having more difficulty understanding because the, the mask are going, gonna be around. Um, and it really decreases audibility to any kind of sound. So, uh, what have you guys seen as far as classrooms go and trying to improve that signal to noise ratio?
[00:17:09] Lisa: Well, I've seen a number of, of things, you know, since my services are directed at students who, um, who do have reduced hearing I'm going in and I'm, you know, I'm, uh, implementing our hearing assistance technology. Um, and oftentimes that is, um, so lately that has been so welcomed by teachers. When they see me bring, um, a classroom audio distribution system with speaker system in there, they are like, Ooh, please.
[00:17:40] Thank you. They're so happy. Um, I've, uh, I know that that has, um, at least in my last couple of years, while teachers are, um, excited to have that. Uh, have that assistive tech. So that's basically improving the signal for all the kids, typical and reduced hearing and, uh, saving their voices. Um, so I've heard a lot of teachers just talk about, I just pass the teacher in the hall yesterday.
[00:18:07] She's like, oh, I'm not going to be able to talk at the end of the day. You know, there's, there's so much that we can do as educational audiologists, to support teachers with, with that. I've also seen some. Um, creative, you know, when I, our, of course our budget is designated for kids, um, on our case loads that we're serving for either 504 plans or IEP, but I have, um, I have seen some schools where they've gotten creative and, um, Carrie, you and I were talking about this, but the little mini PA systems that hang around the neck with the little boom mic, that is one of the more popular things I've seen just off of, you know, I think a $40 lift off of Amazon and it gets the job done in some, in some ways for the average everyday kind of struggles that the masks bring because, um, it is a challenge.
[00:19:04] Yeah. Uh, and, you know, just speaking personally to Carrie, cause I have, I have a moderate hearing loss as well. Um, and I find myself walking into buildings and turning, you know, putting my hearing aids all the way on the speech and noise, highest program they'll go on and, and I'll be a little bit behind and hearing kids and teachers, and it's just, it's just, uh, it's a lot of effort to a lot.
[00:19:32] It's a lot harder and everyone's more tired than I think, um, you know, in a regular listening environment, you know, before masks. So what about you? What have you, have you seen some creative, like sound field solutions? I have,
[00:19:50] Carrie: and I think one of the things is, you know, um, Making sure that our teachers and educators and the teams that we work with realize that kids who are deaf and hard of hearing that, those specific technology, that it needs to be prescribed for them based on their hearing needs and that the, you know, creative solution from Amazon is really not going to be appropriate for those students.
[00:20:20] Um, so I think that's one thing, cause we've had some. Uh, you know, directors who have asked that question, can we use this? You know, because I get it. It's a it's affordable. Um, however, I think, you know, when, uh, when we're talking about our kids, that's probably not going to be a solution that they, um, would be appropriate for them.
[00:20:44] I, but I have seen that. I think one of the things too is, um, some of the, um, classroom, audio distribution companies, and, um, some of the, you know, for the personal technology, we're seeing a wait time there, not in stock. And so then what did we do? Because we have a student or a student who need this improved signal to noise ratio, but we're 90 to 120 days out before we can get it.
[00:21:15] We're like halfway through the year. So what did we do then?
[00:21:22] Lisa: Well, I was shocked to hear that and I don't know what I would do. I honestly, I'm not sure, you know, I'd be digging in the back of my closet for some old, old stuff. Maybe I think, you know, that brings up another point too is just that there's this, you know, we, at least in my, we were lucky enough in our district to use some of the CARES act funds last year to get some of those added to our department.
[00:21:47] So we kind of used last year to, um, and I feel really fortunate when I hear what's going on now, but we weren't able to, you know, kind of pad our inventory a little bit so that we would be ready to go this year, but I really feel for, yeah. Feel free. You guys that are it's on back order.
[00:22:06] Carrie: Yeah. So Cheryl, I know you mentioned like by more of a national perspective, you've seen some districts, so, um, stapes be able to use funding that way.
[00:22:16] Um, how, how has that come about.
[00:22:20] Cheryl: Well, I think it requires the audiologist and the district to understand what monies are available through the American rescue plan or the CARES act. But there is a portion of money in the, um, American rescue plan that is specifically for technology and districts are spending money on technology, but it's up to us to give input, um, on what kind of technology is needed.
[00:22:47] And hope that, um, you know, they'll get, get their place in, in, in the line of how that money's going to be spent. So much of that money is not, it's a one-time thing. So it's not ongoing money that they can hire a lot of staff with. They can do some short-term maybe catch up activities for kids who missed a lot of school during COVID.
[00:23:08] But, um, technology's a big part of that. So I think as audiologists, we need to make sure we're on the administrative agenda about that. And then I worry about the districts where there is no educational audiologist and, um, yet schools know they have technology money and they may be unaware of appropriate equipment.
[00:23:30] And just order some of these things, they just see online where maybe there's guys out there, guys, gals, whoever. Going to schools and selling equipment that perhaps doesn't meet the needs of all kids. It may be great for class, but then if you have a deaf and hard of hearing student in a classroom that also needs to be connected, or you've got remote students at the same time who need to be connected.
[00:23:53] I mean, I think our role as educational audiologist is more critical than ever. And I think we've been able to show the value. Um, but, but I think there's so many school districts that don't have that resource and where do they go to get that kind of support? So, um, you know, looking we're fortunate in Colorado, um, you know, with Lisa, we've got great coverage in our schools, but there's other states where having the educational audiology there might be one for the whole state, um, So maybe that's something EAA can do more for, is something more general for school districts about how to promote this equipment, but yet what you need to do to contract with audiology services to ensure that it's being used properly.
[00:24:39] Because I always say our technology is great, but it's only as good as how well it's implemented. And so, you know,
[00:24:46] we
[00:24:47] Cheryl: need to be right up there with in helping and supporting teachers that it's implemented correctly.
[00:24:55] Lisa: That's so true. And I just want to just shout out to our EAA advocacy committee, um, who was Cheryl was our previous chair of that committee for many years. And Kathy Riley, um, is now at the helm and Cheryl's still on the committee, but I know that that our, um, we have also a really active group of state reps, um, in the EAA.
[00:25:17] And you do hear the differences, um, around the country. Um, and. And really, I think a good focus, I think both for EAA. And I think Ash has tried to do so is really how can we get, get our voices heard in a school district level? It's, it's not easy to ask for money in already strapped public education. And I think that, um, that as you mentioned, the value has never been, you know, I, I, that was one of the things I wrote is what have we learned and what was positive, I think is that our value as educational audiologist has really sh shine.
[00:25:56] You know, it's been shining throughout this time, but I think there's so much more we can do. And so developing some resources and, um, outreach materials and especially getting the word out about how to advocate for audiology services. So,
[00:26:11] Carrie: yeah, no, I think that's, um, Important information to, to have to. And then, um, I just want to say anybody that's joining us live.
[00:26:22] Um, please comment if you guys have some more to hot topics and give us some thumbs up, but if you agree with us, but one of, um, live participants that just kind of, uh, also wanted to, um, try chime in to just say, Hey, when we're ordering like those, you know, equipment as an educational audiologist, um, to remember like, Hey, why aren't you using, you know, service?
[00:26:46] And, um, that customer service part is going to be important to think about too. So, um, Yeah. Some of the, the $40 equipment from Amazon is not going to have any kind of, uh, quality support or one to use and is probably not going to be compatible or will not be compatible with any type of, um, equipment for a deaf and hard of hearing learners either.
[00:27:10] So just kind of being aware of that. So thanks for that shout out there. So any other kind of think about it? I think we've talked about the role of, of educational audiologist and how important they are with, um, especially in this time. What about shortages though? What can we do about that? I know just that one of, uh, um, districts that are nearby us, um, they had a full-time opening for a long time.
[00:27:42] Um, so, you know, how do we, how do we get more audiologists and teachers of the deaf and hard of hearing to be part of that team? Because we know our students really need us at the table.
[00:27:58] Lisa: Well, I killed here's another plug for EAA. We have a fabulous effort going on right now to get a graduate student or get students, audiology students, undergrad, and graduate students involved.
[00:28:10] And, um, I think the more that we can do, and of course, Cheryl, Cheryl has been. Instrumental right in getting educational audiology course work in, you know, various, uh, programs, but not all pro not all audiology programs have, um, the awareness of what, what a, um, what a career in educational audiology might entail.
[00:28:34] So I want to shout out to our student rep Brandon and a task force that is working hard, like to constantly working, to get the message out, to graduate students, to say, Hey, this is a great place to come and work. And, um, and here's why you, um, if you want to be a pediatric audiologist, great. Consider, you know, going to the schools, they need you.
[00:28:56] And I, you know, as Carrie, I don't know about you, but I've spent my entire career in schools and I would never go back and you'll hear that you hear that often. So we're, we're definitely a good, like the best kept secret that needs to just keep, get shared a little widely, but don't get, I hear you. It's, it's, it's hard, um, to fill the positions and I, I do worry about that.
[00:29:20] So, and our teachers of the deaf too, so it's, it's both, um, both of our low incidence kind of fields here in school.
[00:29:29] Cheryl: Yeah. And I think, you know, w we here for those audiologists working in the schools, all of the rewards of working with children through the whole educational process and the relationships that, that we develop.
[00:29:42] Um, but there's so many perks and I, you also, as a school employee, you pay into a public retirement system. And I have, I just got my letter yesterday from the Colorado public employee retirement system. And it reminds you how much you put in, in your careers working and how much you have taken out. And I have.
[00:30:06] Retirement. That's like 10 times what I ever put in. So, you know, you have to look beyond just that sort of role of the audiology, but the comradery that you get with the congeniality reality, with the team that you work with and the families that you work with, um, it, the re the rewards are unmet unmeasurable in, in my mind.
[00:30:28] Um, Over time, especially. And then, you know, so many of our audiologists are seeing children of the children that they supported in school. So it just kind of goes on and on and on and on. And it's, it's great.
[00:30:43] Carrie: Yeah. So if there's any, um, students listening live on the replay, um, please reach out to the educational audiology association.
[00:30:54] We would love to connect with you and, um, give more benefits of being in the schools. And I think that's another thing too, uh, for, I mean, as a seasoned, I say professional that educational audiology association, what a network of people, I mean, talk about hot topics and things that are going on. As soon as we have a hot topic, there's somebody that has some kind of a solution for it.
[00:31:21] So again, another reason why I think, like you said, Lisa, what kind of the best Um, kept secret. And when we talk about audiology and being able to be connected, um, with each other,
[00:31:35] Lisa: while you're speaking of shortages, um, you know, Cheryl was wanting to really just pay attribute to teachers. I have been seeing.
[00:31:43] In Mo in a lot of my schools right now that school nurses are really going through a hard time right now, I think being a school nurse in the time of the pandemic is not obviously easy. So, um, I just want to like throw out there that school nurses are, you know, they're invaluable and hopefully we're, you know, we really, as audiologists work really closely with school nurses, um, for universal hearing screening and that sort of thing.
[00:32:13] So shout out to our school nurses and, um, gosh, I hope they, they are probably even experiencing greater crisis them, you know, than we are. So it's just a, it's, it's kind of a, it's a, it's a challenging year to, to go into, I think in a lot of educational fields and just the. The climate and education is it's a little bit of a downer sometimes I think, but the kids are what keep us going.
[00:32:44] And you get a, you, the kids are definitely like, keep it. I just, before the podcast opened my email and I had emailed one of my sixth grade students this morning just to check in and say, and he emailed me back and it was adorable. Um, and that's the kind of stuff I'm like, he's like, no, but I got new hearing aids and I don't need the microphone.
[00:33:07] And, you know, he's just talking me through his needs. And it was just, it's just kind of a reminds you of why you're in the field of educational audiology. It's it's about the kids and you get to see them from, you know, preschool to graduation in their kids sometimes. And it's, it's just pretty awesome.
[00:33:29] Carrie: I agree, 100% too.
[00:33:32] So kind of going back to the school nurses and like hearing screenings. And I think about last year when a lot of our schools were remote all year and maybe didn't get a hearing screening or the ones that are remote and have academic loss, just being online and virtual, what are your, I feel like that's going to be a hot topic or kind of bubble up as we get into this new school year of being possibly in person for most of the year.
[00:34:08] What have you, what do you guys think about that?
[00:34:13] Cheryl: I think there's been some districts that have been very, um, um, proactive in terms of doing summer programs this past summer that, um, not necessarily are focused on deficits, but are creating ways of enrichment to get kids caught up. And, uh, I think that's been great.
[00:34:36] I think kids were ready to come back to school, even though it was summertime. Cause they felt like they'd been isolated for so long and there's there's money to support all of those, um, different initiatives. You've got. Teachers that are available to do this, the training. But I think there's a lot of kids that are going to fall behind or have fallen behind.
[00:34:58] They also already have some data on test scores and the loss I've heard about our kids who are in that last year with their transition, um, situation. And basically they lost all of transition because there was no school. And so will their, will the government allowed districts to extend. 2 22 or whatever the states time is for that transition year to fill in some gaps.
[00:35:26] So I think, I think teachers are creative if they're supported by their administrators about different things that that money can be used for to help close gaps. The mental health needs, um, is huge. That's a huge umbrella over all of this. And I have always felt that a child's self esteem and wellbeing.
[00:35:50] Totally impacts how they do academically. And we have to look out for those social emotional needs in our kids. And I think school districts may be hiring short, short term or social workers or psychologists for a year or two. I forget how much, how many years they have to spend this money. It's like three years maybe.
[00:36:09] Um,
[00:36:10] Cheryl: so, you know, they can do some short-term, whether it's instruction, social, emotional support, counseling, whatever it might be. I just hope schools are looking. And I think they are, they understand what our kids have been through. So I'm hoping to see a lot more social, emotional support also for our kids.
[00:36:31] I don't know. I either be aware of programs in your districts that are expanding on the mental health.
[00:36:39] Lisa: Well, I was just reading an article today. That's what our district has definitely been putting. A lot of the resources have been going as far as, um, focusing on mental health and I have good friends in the field and it's, it's definitely, um, taken a forefront, you know, I kind of feel like it should, and it obviously should.
[00:36:59] It is, um, it's on everyone's mind and kids need kids, mental wellbeing and emotional health far supersedes. I mean sure. Yes. Access is critical to instruction, but they're not, you know, that, that emotional, um, wellbeing even supersedes access in some ways it's pretty critical. So I think we'll see the spending there continue, um, for a few years to come.
[00:37:30] Cheryl: So.
[00:37:33] Carrie: Yeah. I think sometimes our kids, uh, you know, before COVID were they're at risk versus some of the social emotional, just due to the communication, uh, difficulties at times and, and, um, language, you know, and all of that. So then you add in this whole year of COVID, um, on top of it, I think paying really close attention to our students who are deaf and hard of hearing and what their social emotional needs are, is going to be critical in this upcoming year.
[00:38:09] Cheryl: And I think it's an opportunity because certainly we've seen in a variety of areas of COVID how those who are having more struggles are falling further behind. So it's really brought forward the needs of kind of our underserved kids or the kids that fall through the cracks because maybe they got by or did well enough.
[00:38:29] But, but you add now that layer. Access COVID has caused and they have really fallen for the behind. So it'll be interesting to see if we have more kids moving off of 504 plans back into IEP, you know, what's, what's the relationship
[00:38:46] Lisa: there. Um, so we'll see. I think that totally will be interesting. Cause I hadn't thought about that.
[00:38:53] Exactly. Cheryl, you know, Carrie, you mentioned screenings, I heard you talk about screenings and the bubble up. I, um, that's a really scary topic, a little bit for me now because we've gone a long time without our universal, um, hearing screenings. And so I do worry about the kids that are out there that have not had the opportunity, especially our little ones that might be coming through, um, our, uh, child find process.
[00:39:28] So I am kind of gearing up, I guess. I'm not exactly sure how it's gonna go. Um, I think I've seen it kind of can go both ways. I've seen our school-aged hearing screenings, uh, go from, you know, just screening are mandated grades this year. They say they're going to scream. Every single school aged kid in the district will get a, a hearing and vision screening.
[00:39:50] So they're looking for, they're looking for volunteers and they're looking for grants or, um, students to come in and they're trying to figure out a way to make that happen. And we'll see if that happens, but then I'm kind of seeing in the ch in child's mind and early childhood, there's a lot of still. Um, stuff going on in our part C agencies here in Colorado.
[00:40:14] So there's, we haven't fully opened up our screenings at that level. So, um, you know, I see that maybe losing some ground there, actually in what we've built up in, um, and awareness for the need for a hearing screening at that age. So I'm not really sure how screenings are going to go. I think we're audiologists are going to be busy though with a lot of follow up, um, from what I've heard.
[00:40:40] Yeah.
[00:40:41] Carrie: Yeah. And then there's going to be a lot of, um, gap catch up too, because we're going to be back to before we were screening and catching them early, and now we're going to have this, you know, late identification.
[00:40:59] Yeah. So another deep breath, right for that,
[00:41:06] Lisa: my audiometers aren't calibrated yet, so we haven't had them calendared. Their calibration was coming up. So I
[00:41:14] Carrie: got
[00:41:21] whoops,
[00:41:22] Lisa: frozen. Did we lose Carrie? We blew the internet up talking about screenings,
[00:41:31] Cheryl: which is really a hot topic because those have been on hold in most school districts.
[00:41:38] Lisa: And I still, I'm still getting questions about being in like infection control around doing universal screenings. I've had a number of people reach out and say, what are you recommending for, you know, protocols?
[00:41:52] And I'm like, well, it's not quite like it was last year. We're not sanitizing every single surface or, you know, there's so it's, it's definitely a hot topic and a lot of ways, Hey, Carrie, you're
[00:42:05] Carrie: back. Oh, I don't know. My internet got unstable for a second, so I'm glad I got back.
[00:42:14] Lisa: Awesome.
[00:42:17] Carrie: Well, I think one of the questions I wanted to ask you guys as seasoned professionals is what kind of advice would you give, like either a starting teacher of the deaf or a educational audiologist who was going in, um, to a more mainstream type team, educating the team about a student that they have, who has these different things on their IEP or their 5 0 4plan and the team, um, or maybe a particular person on the team does that.
[00:42:55] Want to do some things, um, whether it's like wear the microphone or wear maybe a clear mask of that was something that was recommended. Um, but what kind of advice would you give someone that kind of just starting out, getting their feet wet, trying to establish rapport with, with the school?
[00:43:20] Cheryl: Go ahead, Lisa,
[00:43:23] Lisa: just going to let you go. Um, that's hard one I, um, a couple of things come to mind because like we, we do as audiologists. I think we're all, um, we, we give a lot of information, you know, we're very, there's a name for that. I'm not thinking of it, but we like to give out information. We like to give out, um, Talked about all of the, you know, the areas of our expertise.
[00:43:51] Right. So I think it really is about building that relationship and that rapport. So listening and hearing the concerns of the, of the teacher, because they're probably coming from a place, you know, probably just not understanding fully. So, um, I would probably just, I would suggest that, you know, providing an article or providing, you know, the law in front, that those things are, might not really work in this situation.
[00:44:22] That's going to push that teacher a little bit further away when you say, oh, it's in their IEP, you have to do it. Um, I would not recommend doing it that way. Uh, although I think we've had to say, you know, occasionally it has to come down to that, but. Um, but really listening, perhaps, um, putting them in touch with another teacher, who's tried it, um, when it comes to wearing the mic, for instance, that's a good one, uh, doing some sort of demonstration, like you could even demonstrate with a clear mask versus.
[00:44:55] A cloth mask and show them, I am, I think they probably need to feel heard and supported. And, um, and there's, like you said at the beginning, Carrie, there's totally not always one right way. And although, um, we think that we, we all went through that learning process last year, if you remember the clear masks, right.
[00:45:18] And the versus the cloth masks or the surgical or in N95 and there, and subsequently various researchers and studies, um, really showed that, you know, the clear masks don't, don't have this good of audibility. And so you really have to take it, you know, student by student. And so I think, you know, we, we have learned.
[00:45:43] That things aren't always better just because we think they're going to be better. So I don't know, working with the teachers working with, um, in a collaborative way, Cheryl, what would you do
[00:45:54] Cheryl: ditto to everything you've said? I think I'm trying it as let let's see what works for the child. So let's try this and if that doesn't work, let's try, um, a clear mask.
[00:46:06] If that's not going to give enough audibility, let's try a Mike look at the difference between a mic. If it's sitting on your waist versus a mic that's appropriately placed. Um, so I, again, I think many times it's fear. Um, because they aren't sure they're going to do it right. Or they don't want the student to look different because they're doing something.
[00:46:28] So giving them lots of different strategies for and support. It's all that is going back to I'm. Um, I'm right here by your side to help you do this. Tell me what your fears are telling me what your concerns are. Let's talk those through. So it's that, you know, the relationship, the knowledge, and then the evidence that it makes a difference for the kids.
[00:46:52] Carrie: Yeah. I think we have, you know, we want a new, um, Educational audiologist and teacher of the deaf they'd be successful. Um, but it also, you know, we know that teachers, I like just rockstars and they are the ones that are with our kids every single day. So we definitely want to appreciate them in whatever way we can.
[00:47:16] And like you said, show whatever we can do to support them, um, along the journey, but also that support our kids too, to make sure that they have the access that they need in the classrooms. Yeah. And I
[00:47:31] Cheryl: don't think we do a good job in our training program. I mean, I can speak for the university of Arizona where I teach the audiology course for our masters degree, teachers of the deaf, you know, I'm sitting here thinking my gosh, am I giving those teachers the strategies they need to problem solve this with.
[00:47:50] Another specialist or the general classroom teacher, whomever, and you know, maybe I'm not giving them enough strategies. Cause when you're the newbie, either you're over exhibit over producing what it is, because you've learned that you got to teach advocacy and you got to advocate on behalf of these kids and you sort of bypass the relationship part or you just don't want to step on anybody's toes.
[00:48:17] And so you think, oh, well, okay. I guess I won’t push that. Um, so I mean it's hard. So maybe, you know, we need to think more about that in our training programs,
[00:48:29] Lisa: I would call those the soft skills, right. That we all need for a lot of working relationships. Right. I definitely see the value of, and I'm much better at it now that I'm old.
[00:48:41] I walk in, I walk into a classroom and I don't just say, Hey I'm and then start I'm like, how are you? You know, just starting with what the personal exchange I'm always sets and a smile, right. Always sets you off, um, on a really good, um, because you're, you're walking into a classroom and I walked into a lot of them the last few days and you get a variety of kind of, um, responses from teachers.
[00:49:08] And if you go in with that smile and that like just personal level, they're, um, much, much more receptive. So. That it's hard. It's hard to do, to do our job. Right. Cause that's one of the most challenging things walking into the classroom cold and you know, maybe unannounced. And, but if you're the person there to help, you know, I'm, I'm just, I'm here to support you then.
[00:49:35] How can they, I noted that really.
[00:49:38] Cheryl: So, you know, you have to be a little bit persistent, but with grace.
[00:49:45] Carrie: Yeah. I know. And it's that balancing act. And I think like what you said, Lisa, like over time, you just learn these different ways of, of balancing that and being supportive and. Um, inclusive by teachers too, which I think I wanted to bring this up too.
[00:50:04] Cause I know Cheryl, we had talked that ahead of this, the, um, program, the live event too, is how can we show more appreciation for teachers who are those rock stars who are, you know, learning this new equipment and, um, accommodations. And if they have an interpreter in the classroom, I mean, they learning all these new strategies that they have to incorporate into their everyday teaching.
[00:50:31] So what I know you had a great idea.
[00:50:35] Cheryl: Well, I'd love to see us have a teacher appreciation day. And, you know, even if it's a card that just acknowledges, we understand you're under a lot of pressure and that you're meeting the needs of so many different children. Um, and we're here to help, you know, maybe one day you bring a little box of cookies, you know, it can be anything.
[00:50:55] I think just the act in itself that reminds that teacher, somebody does appreciate who I am and what I do is huge. I don't think it has to be a big thing, you know, with as educational audiologist and we support so many teachers. So, you know, how would we spread that out over time? But, you know, we can, um, given my, trying to remember, I have the cutest, I love you stickers and.
[00:51:23] Somewhere on my desk, know even a little sticker like that, that
[00:51:27] Lisa: says Cheryl, building on your idea there. I think that EAA I've talked to our, um, our VP of public relations and she is going to check with our advocacy committee and EAA is going to consider a fall event called thank a teacher day. And maybe we can, I, for one, can think of like going into a classroom, taking a selfie and post with some of the teachers that I work with, who I just adore and think the world of and doing and all getting together as an organization and doing something like, like writing a card or, or taking a photo and posting it on Instagram or a sticker or.
[00:52:14] You know, a box of candy or something like that. There kids there's so many, just little things and I think they would, um, it would, it would be a great way for us to stay positive and really show appreciation for the teachers because they are the ones carrying the weight, a lot of the weight most of the time.
[00:52:32] And it's not an easy shining job that they have
[00:52:38] Cheryl: and they're doing our work for us.
[00:52:42] Lisa: That's true. We, we go in as the designated consultant, the expert, but they're carrying out the, the, the they're meeting the needs. They're the ones implementing. And I think we do, we do need to show them our appreciation.
[00:53:02] Thank a teacher Day
[00:53:04] Carrie: I love it. Stay tuned. I hear a lot of ideas coming out of this whole conversation too, if I have maybe some little marketing, we could have little stickers is something that EAA people could print them out and put them on a card. And like you said, just something simple like that, to know that you're appreciated.
[00:53:24] I know, even if I just get an email from someone that says, Hey, listen, you know, this really helped me. I'm like, oh good. Somebody appreciated something that I did. And then just that little, it wasn't anything monitored. I mean, I, it was just something as simple as getting a refreshing email from someone or a text.
[00:53:45] So, yeah. Great.
[00:53:48] Lisa: And I, I, I love the focus on positivity, Carrie, cause I think we're. You know, we, we feel, I heard it described kind of in a way that made sense to me what this school year is like, it's kind of a little bit like, not that you guys have know anything about this, but, or me, but it's kind of like a hangover, you know, you've had too much fun the night before, but the year sort of feels like a little bit of that, right?
[00:54:20] It's just a little, you're, you're a little bit weary. It's dry. It's dragging on because of the situation with the pandemic and not going away because we thought, you know, we might be in a different place now and we're just not, so we're not quite. But yet we're still pushing on through our, through our day, through our school year.
[00:54:41] And so I think that by staying positive and doing some positive things that we can really just, um, get through this, uh, get through whatever it is we're going through and, um, and keep ourselves going. Cause we need to do that.
[00:54:57] Carrie: All about the mindset.
[00:55:02] Well, as we kind of wrap up tonight, I just, we're kind of getting up to an hour and I thought I would give you guys an opportunity, um, because you guys have been so involved on so many different levels with educational audiology association, which I just think is an amazing organization. Um, and everybody should join the association, but there are lots of great resources, um, for advocacy and just resources in general, that even if you are not a member, if you're a teacher or a speech pathologist or a teacher of the deaf or a parent, you could get on.
[00:55:41] Um, do you guys want to highlight just a couple of those with in conjunction with all of my hot topics today?
[00:55:49] Lisa: Sure. And I want to just give a shout out to membership because with membership comes one of our greatest, um, benefits, which is our listserv, which has just our email, uh, Q and A and support group.
[00:56:06] It's so, um, active. And so many of our members say that was one of the best things about, um, EAA membership. So shout out to our lists listserv. I also, um, we also have great and I'm going to let, I'm going to save Cheryl, you, you point out the advocacy resources. I'm going to point out the fact that we also have some great, um, we have a discount code for if you're a member for the educational audiology handbook and some other great books from our summer conference, we have some, uh, we have great professional development by and for.
[00:56:46] Uh, just for educational audiologists. So I think that's, um, one major perk in those that's of course it's open to members and non-members so, um, the, the last thing I'll say too, I think. I want to get, we have great scholarships for students, and that is something I think is a little bit of a kept secret.
[00:57:10] We are in the process of trying to fund an endowed scholarships. So we're in the middle of a scholarship drive, but we're trying, we have a donor who's matching all dollars up until the end of this year, up to $20,000 for our student scholarships. So they're just, we are here to support the educational audiology community, the community of professionals who work with deaf and hard of hearing students.
[00:57:35] And, um, and so, and, and I think our advocacy resources are fabulous. So I'll let Cheryl talk about that.
[00:57:44] Cheryl: Well, and in addition to those, we had a great summer conference. And if you're looking to either get some new information or want to get some continuing education credit, you can still register and have access to all of those talks.
[00:57:58] It was all, um,
[00:57:59] Lisa: that might be over actually. Yeah, but we are looking at possibly re. Well, we may reshow a couple, one or two of the sessions, but they were amazing. And, um, and we were going to continue virtual a virtual event. I think even when we go back in person and I forgot to mention the summer conference too, which is amazing.
[00:58:24] Yes.
[00:58:25] Cheryl: So, um, we have position statements and we have advocacy statements, position statements, go into a little more, uh, depth. And they're really for the professional, for the audiologist or teacher of the deaf, the advocacy statements are short, maybe two pages and they are developed for a more novice, um, listener.
[00:58:46] Great to give your administrator or a general ed teacher about a certain practice. And we just finished one on hearing screening. That includes what we need to do for children who are difficult to assess. And so as we get back into hearing screening, remembering that we have children that may have difficulty participating in their regular school screening program, but the audiologists may be able to screen those children in their own way.
[00:59:16] So that one, we just finished up last night because so many of the disorders that are out there in special education have a concomitant hearing component. And so remembering that, so there's a whole variety of we're in the process of reorganization of the website. So that's going to change the accessibility to some of these, but anyway, there's a lot of just short advocacy statements that you can use with parents, teachers, administrator.
[00:59:47] Carrie: Uh, so definitely check out. EAA, or we have a Madam president here with us tonight, Lisa Cannon. So thank you for being with us too. And if you're
[00:59:59] Lisa: interested in getting involved on a committee or our board of directors, please just reach out.
[01:00:07] Carrie: Yes. Well, I think we're kind of up on an hour and I just want to thank both of you guys.
[01:00:13] Cheryl, and Lisa for joining and the hot topics as we get back to school. Cause I know we're going to have a lot of those, um, that just continued to evolve. So I think having the conversation now and, um, I thank you, but everybody that's joined us live tonight and who are on the replay. I hope you got a lot from that.
[01:00:34] Um, I encourage you to like the empowEAR Audiology Facebook page and we will continue to post some information on the Facebook page, um, including some of these amazing resources that we talked about. Today and the, so that you will have that link. Um, and there's, um, some videos and Cheryl was just involved in a video that is promoting, um, classroom amplification.
[01:01:00] So we can definitely highlight that. So that, uh, individuals who are in the schools who want to take advantage of some of this funding that's available, um, maybe able to watch that and get some great ideas, um, in order to go to their administration and advocate on behalf of, um, improved acoustics mask type classrooms and even moving forward, we know that the benefit of all of that.
[01:01:26] So is there anything that you guys want to add before we like log off with the night?
[01:01:34] Lisa: I just wanted to just say, I love your podcast. I like go on my morning walk and I'm like, wait, I'm just going to listen to my friend, Carrie, on her podcast. It's so cool. So I love it. That you're doing that. Keep it up and can't wait to hear what you've got coming out.
[01:01:54] Carrie: Thank you for that shout out
[01:01:58] Cheryl: It's nice to have podcasts that are in our own profession.
[01:02:02] Carrie: Yeah. It's not a lot of fun of doing it and getting to know a lot of people
[01:02:07] Lisa: people have happy one year anniversary.
[01:02:12] Carrie: We have a celebration as well. Thank you guys, both for being part of the conversation. And we look forward to more hot topics throughout the year, and we will definitely, um, I'll be in touch so that we can, uh, be positive and motivated and creative with all of our problem solving.
[01:02:32] So thank you guys.
[01:02:35] Lisa: Thanks Carrie.
Announcer: This has been a production of the 3C Digital Media Network.

Episode 25: empowEAR Audiology - 25th Episode Celebration

Announcer: Welcome to episode 25 of empowEar audiology with Dr. Carrie Spangler.
[00:00:16] Carrie: Welcome to the empowerEAR Audiology Podcast, which is part of the 3C Digital Media Network. My name is Dr. Carrie Spangler, and I am your host. I am a passionate audiologist with a lifelong journey of living with hearing challenges in this vibrant hearing world. This podcast is for professionals, parents, individuals, with your own challenges and those who want to be inspired.
[00:00:45] Thank you for listening, and I hope you will subscribe, invite others to listen and leave me a positive review. I also wanted to invite all of you to visit and engage in the conversation and the empowerEAR Audiology Facebook group transcripts for each episode can be found. Www three, the number three C digital media network.com under the empowerEar podcast tab.
[00:01:18] Now let's get started with today's episode. Welcome to empower you Audiology podcast. It is a time to celebrate. Exactly one year ago today, the empowerEAR Audiology podcast was released today is not only a celebration of one year, but also a celebration of the 25th episode, 25 is such a great number to celebrate.
[00:01:43] It's a birthday and anniversary or the 25th episode of empowEAR Audiology. What are you waiting to celebrate today? I encourage you to believe in yourself and make the most of what gifts and talents you were made for and celebration of one year and 25 episodes. I wanted to dedicate this episode to reflecting, refreshing and restarting.
[00:02:07] Today I will reflect on my own personal journey. Refresh on how three C digital media network made, empowerEAr audiology come alive as well as the multiple guests and listeners, and then restart for goals and year two. The first episode of empowerEAR, audiology was titled what is my purpose? And we reflecting on this question over the past year, I have been reminded that we truly do not know another person journey.
[00:02:36] We all have our own experiences that make us who we are, and I am truly grateful. That I took the leap of faith with the empowerEar Audiology podcast, to develop a unique platform for storytelling as it relates to personal and professional hearing journey. In episode number 20, I have the opportunity to interview Karen Weiser.
[00:02:59] She's an international career coach connector and storyteller. She also has a journey with a cochlear implant and this episode count goes deeper into why sharing your story is important, we open up emotion by telling stories. We make lessons stick by telling stories. What story do you have to tell?
[00:03:23] Reflecting on my own story, as it relates to being hard of hearing, as well as an audiologist, I hope empowEAR Audiology is helping to break down the stigma that continue to surround hearing loss and other, and that others gain a deeper understanding of the unique spectrum of deaf and hard of hearing individuals.
[00:03:43] I started thinking about stigma again, because it has been a topic of conversation at a recent conference that I attended. My reflection actually took me back to my childhood years. I thought to myself, this little girl me was born with hearing loss, not identified and fit with amplification until the age of four.
[00:04:05] Had significant articulation difficulties, wore analog hearing aids that really did not have the capacity to give me access to the full speech spectrum. I spent 12 years in speech language and auditory therapy. I attended my public school and was on an IEP receiving special ed services. I then went onto college and was told that because of my hearing loss that pursuing the field of audiology may not be a good choice.
[00:04:38] I persisted through. I achieved the doctorate in audiology. I became a successful. And, um, found a rewarding career path in educational audiology. I went on to the cochlear implant journey later in life. And now I'm hosting a podcast. Who would have ever thought that a little girl who was so difficult to understand with a significant bilateral, severe to profound hearing loss would be celebrating the joy of 25 podcast episodes.
[00:05:13] Life has a way of making your own challenges, your greatest purpose. And if you dare to think differently, you will emerge stronger. In my own spiritual, personal journey. I am absolutely grateful to have this lifelong human challenge. Yes, there are times that I'm frustrated, mad, isolated, feeling isolated in this vibrant hearing world, but I have learned how to be resilient and determined.
[00:05:43] From this hearing journey emerged, many positive relationships and a purpose for your career. If you have not already heard my story, take a listen to episode one. I hope you feel empowered after this little reflection to overcome your own obstacles with resilience and determination. And today's 25th episode.
[00:06:05] I also wanted to hit the refresh button and talk about 3C Digital Media Network, empowEAR guest, and you as a listener. I wanted to share a quick story about how I got connected to the 3C Digital Media Network. A good friend and colleague Dr. Todd Houston actually interviewed me about a year and a half ago for his own podcast.
[00:06:30] Titled the listening brain. You can visit his podcast and look for episode number 10, to hear this conversation or go to today's show notes and you can find it there as well. After that particular episode, Todd ask if I have ever considered hosting my own podcast and I've actually thought about it, but with a full-time job and family, I did not have an abundance of extra time to figure out all of the behind the scenes action that go into launching and sustaining a podcast.
[00:07:03] Todd went on to share about he, and two other colleagues that I also know and admire ,Scott Palasik and Tammy Bradham, teamed up and had created three C digital media network. They were looking for content creators. It was the exact platform support and expertise that I needed to be involved with to make empowerEar Audiology
[00:07:28] Come alive. Thank you Todd, for asking me and to the whole three C digital media network team, but yeah, for your ongoing guidance and support. Listeners if you have ever considered a podcast, webinar blog, or any other content creations, reach out to digital media network would be a fit for you. Thank you. Let's hit the refresh button again and talk about the amazing guests that I have had over the past year.
[00:08:01] This podcast would not be possible without each of you willing to give up your time and share your talent. I truly get excited each and every time I have an interview set up, you can visit the website to listen on Apple Spotify and Google play, and you can catch each episode. I am going to give you a brief rundown of each of the guests, because I am grateful for each of you giving up your time and your talents to be on the empowerEAR Audiology Podcast.
[00:08:34] And again, you can visit the website and find out more. Dr. Cheryl DeConde-Johnson. Thank you for being my first interview. And you can hear about her personal story as a parent, as a professional, as well as the conversation about return to score during the pandemic
Dr. Tina Chilress, she shares her personal journey and we discuss AKA shoes, um, and masks and accommodation that may be needed returning during the pandemic
[00:09:06] Camille Warren, she is a mom, extra ordinary mom who shares her story and advice to other parents and professionals about re-entry back into school during the pandemic.
Dr. Carol Flexer, my childhood audiologist. We have a conversation about lifelong learning, mentoring, the brain and passion for audiology.
[00:09:28] Dr. Gail Whitelaw. We have a conversation about teens, teen advocacy and the campUS experience, which is an overnight camp for teens.
I had Dr. Katie Colburn and Audrey Susz who, uh, counselors for the campus program share about teen mentoring and the importance of that.
I loved interviewing Dr. Oliver Adunka, who was my cochlear implant surgery.
[00:09:58] And we talk about the cochlear implant process and where it is headed.
Dr. Beth Walker, we talk about the significance of mild hearing loss in children.
Janet DeGeorge's discusses her parent journey as well as her new book, not a leader. Now, a leader,
Dr. Erin Schafer. We talk about the importance of wearing the mic,
Deanna Magna and her role as a teacher of the deaf or hearing impaired.
[00:10:27] And she shows her resources that she has developed.
Dr. Karen McGiver-Lux personal story, as well as my personal hero,
Dr. Ryan McCreary and the importance of research and audiology,
Dr. Michelle Hu and happiness with peer to peer connections by deaf and hard to hearing.
I also had the opportunity to interview four moms, Nancy, Maggie, Stephanie, and Tina, and they should get it moments about raising a child or children who are deaf and hard of hearing
[00:11:01] Dr Mark Brennan and his personal story research and framing the hearing loss advantage,
Dr. Angela Alexander and her personal passion and dedication to the work of auditory processing and auditory processing disorder.
Karen Weiser career coach, cochlear implant user, and the importance of sharing your story,
[00:11:23] Dr. Sam Atcherson and his personal journey and finding the right solutions and supports
Juliana and Andrew Hebert from HearStrong foundation and being a HearStrong. Champion Dr. Renee Gifford shares about bi-modal hearing and
Jaime Vernon shares her mom journey and her 01C3 organization songs for sound. I know that was a lot.
[00:11:49] And thank you. But listening. All of the highlights of these gaps over the past year. I don't have a favorite episode because I truly loved them all. And I am grateful for your storytelling, whether it was a personal, a professional journey. I loved the learning from each of you and digging deeper into topics to empower others and cannot wait to meet more guests.
[00:12:14] As we kick off year two. Let's hit the refresh button one more time and talk about our listeners. Thank you to all of you for tuning in twice a month to catch the latest episode I've heard from many of you over the past year and continue to receive positive feedback. It brings me great joy to hear when a college professor shares this podcast with students to listen.
[00:12:41] It warms my heart to find out A parent was inspired by another parent sharing their story. I am encouraged when an adult who is deaf or hard of hearing realizes that there are others who are in their shoes. Listeners. I hope you keep on listening. I hope you share with others. I hope you engage with me.
[00:13:02] on the empowerEAR Audiology, Facebook page. Please give a five star review, consider writing a positive favorable comment. All of these actions help empowerEAR Audiology growth so others can benefit listener. There's someone that you want me to interview. Please reach out and let me know. Lastly restart.
[00:13:27] I am looking forward to year 2 and 25 more episodes. I strive to bring more empowering stories, cutting edge researchers and professionals, and additional practical knowledge and tips to all of you. I will be trying out some new ways to engage in the upcoming year, including some Facebook live events and learning opportunities.
[00:13:51] As I close today for empowEAR Audiology, 25 episodes, one year celebration. I just want to give a huge thanks again to everyone for believing in me and cheers to year two and 25 more. Thank you.
This has been a production of the 3C Digital Media Network.

Episode 24: empowEAR Audiology - Jaime Vernon

Announcer: Welcome to Episode 24 of empowEAR Audiology with Dr. Carrie Spangler.
[00:00:15] Carrie: Welcome to the empowEAR Audiology Podcast, which is part of the 3C Digital Media Network. My name is Dr. Carrie Spangler and I am your host. I am a passionate audiologist with a lifelong journey of living with hearing challenges in this vibrant hearing world. This podcast is for professionals, parents, individuals, with your own challenges and those who want to be inspired.
[00:00:44] Thank you for listening, and I hope you will subscribe, invite others to listen and leave me a positive review. I also wanted to invite all of you to visit and engage in the conversation on the empowEAR Audiology Facebook group. Transcripts for each episode can be found at www. 3, the number three, C digital media network dot com under the empowEAR Podcast tab.
[00:01:18] Now let's get started with today's episode. Hi everyone. Welcome to the empowEAR Audiology Podcast and thanks for being here today. I am really excited to have my guest today, Jaime Vernon. She is the founder and executive director of a nonprofit Songs as Sounds and just a little backstory about Jaime.
[00:01:40] Jaime turned basically something that might've been a devastating discovery. That, that her young daughter, Lexie was deaf into something very beneficial. And she has used the music as inspiration and a source of outreach through her nonprofit Songs as Sounds and strives to protect and restore hearing, and improve the lives of those suffering from very varying degrees of deafness.
[00:02:09] And Jaime is the executive director of this organization. And I'm going to just let her share a little bit about her role with Songs as Sounds as we get started today. So, Jaime, thank you for joining me and welcome to the podcast.
[00:02:24] Jaime: Oh, thank you. I'm so excited. And I really wanted to say thanks for having me and letting us tell our story and, um, help hopefully so many people.
[00:02:35] Carrie: Yeah. So do you want to start with just, what is your role with Songs as Sounds.
[00:02:39] Jaime: Yes, of course. So I'm the founder of the charity as well as I'm the executive director and probably 50 other titles as most charity directors. Um, the hats that we wear, but, um, you know, most importantly, I'm a mom of two amazing kids.
[00:02:57] Um, my son, Jacob, who is, uh, 16, and I always liked to include the siblings because of siblings of children with cochlear implants or hearing aids are very important. And I think we, I don't think we talk enough about that. And it's something we're going to talk more about that at our charity, but, um, also, uh, obviously Lexi who the charity was, uh, formed at her whole story, you know, is really what we tell almost every single day in the work that we do.
[00:03:22] Um, and so she is now 13 going on 30 and she is a bilateral cochlear implant recipient. So.
[00:03:32] Carrie: Well, do you want to share with the audience just a little bit about your story as a mom and Lexi and how you got to Song for Sounds
[00:03:41] Jaime: a hundred percent. So, um, so let's see was born, uh, seemingly typical with, um, you know, no delays, et cetera.
[00:03:51] However, at 10 weeks we were told by the pediatrician that she had never been given a hearing test, her newborn hearing screening. So, um, at the time the hospital here in Nashville routinely did them. It was before Claire's law passed, um, the, for your family who, who had helped pass that legislation. Uh, and however, it was just six months before the law passed.
[00:04:11] So they were routinely doing them. And they just skipped her, the deaf kid basically that day. Um, if I'm just saying it bluntly and plainly. Um, and so at 10 weeks when they, uh, they identified that that didn't happen, the pediatrician's office, we were scheduled to go get a test. Well, um, at that test, we were advised that she didn't pass because she was fussy was likely the, the, uh, that was the information we were given.
[00:04:37] So we didn't know she didn't pass. And then we were told to come back in six to nine months, and now I know the standard of care should have been two to four weeks. Um, so we left the point is, is we left feeling great little hearing loss in our family. Uh noise-induced you know, my, my papa, all my grandfather had you worked in a coal mine.
[00:04:55] And so he had noise induced hearing loss, but there were, there was no genetic hearing loss that we knew of. So fast forward, uh, around 10 months of age, Um, of course babies fool you because they still look and they're very aware visually. And, um, you know, they're playing in there, you know, it's just very difficult to diagnose.
[00:05:12] Uh, and at 10 months, her father. Uh, had, had brought it to my attention that he thought something was definitely going on and he clapped very, he's a farmer and he clapped behind her head and she never flinched, she was looking out a window sitting on the floor and she didn't flinch. So mom, internet straight to the internet, you know, there's this, oh my gosh, 12 years ago, um, straight to the internet.
[00:05:36] And I told myself that it was going to be fluid or possibly amount of hearing loss, where she needs hearing aids, um, back to pediatrician, by the time we got through all of that and doing the research and getting the appointment set, which takes a minute for you to process and do all of this. And then we get you in.
[00:05:55] I walked in and the pediatrician that the office was in Green Hills here in Nashville, which is a very wealthy zip code. That's where their office is. So I say that because we should get good service there. They, the doctor said, some kids don't talk until 18 months of age because I said, she's not saying first words.
[00:06:17] And I'm like, well, that doesn't seem right. She has a sibling. Um, and I said, well, what about our hearing? And he said, she heard the noise in the hallway. And I said, okay. So I know that this isn't an inexpensive test for my insurance company. So what's the reluctance, what are we doing? Cause I'm not leaving without you sending me back to, um, to get that follow-up hearing test, which they said, even though the timeline was off, they did say we needed to do.
[00:06:41] And I said, this makes no sense to me. So fast forward, I finally get the referral. It was a lot of like tug of war, which is ridiculous. Um, and so we go to Vanderbilt and we get a full evaluation with, um, our favorite person, Dr. Cathy Hayes, who is like my hearing angel, if you don't know her, everyone should.
[00:07:01] And she, so I sat there and I watched the test and I knew obviously something was going on, no idea what they were about to tell me. And she comes out and she does tell us that they, that Lexie is profoundly deaf. They're going to do the ABR the next day. And I'm just like, I mean, my world went, you couldn't have received the news from anyone more, more kind or more soft-spoken than her.
[00:07:25] I would never pick anyone, but her and my world went to, honestly, this place where I saw these, this school often it was a sketch of black and white sketch. And there were these trees with no leaves on the, on the trees. And I remember later thinking about that image I had, and it was isolation for her. So I immediately say, sign language, special schools.
[00:07:50] What do we, you know, what, what do we do? Just give me my list because I had her, her dad walked out. He didn't, he had a hard time with it, which I can understand. Um, just their relationship now. It's, it's a different connection and a deeper protection for me though. I, um, it was, it was just moms have to, we gotta go.
[00:08:09] It's go time. Okay. So I had like five seconds to get myself together and, you know, tears rolling down my eyes and I'm like, okay, now we got this, I got this. So, um, then she tells me that there's some miracle device called a cochlear implant that I never heard of. And again, it was 12 years ago and I'd like to think our charity has helped with a big, a big portion of the awareness, but there's so many great groups getting the word out, but I'm like, uh, what, so then I'm assuming like you can do what you can, you can restore sound in deaf and I've never heard about this is like a biblical proportion.
[00:08:41] It's like miraculous. And so there's hope, right. She gives us hope. And so Lexi goes through the ABR, confirmed what we already knew. Um, immediate, fast track into, um, mama you're hearing school, even though she still was in hearing aids and it was giving her maybe no access, but it was amazing. And four months later in that time, obviously we met Dr.
[00:09:03] Dr. David Haynes. Who's the director of the program and his team. And, um, you know, he's like family to us, probably one of the coolest people I know. Um, and we're immediately reassured that this is good for her. Fast forward. Um, she's implanted, you know, three weeks later she's activated and she heard a bird chirping the first day and pointed to it and it was just like, boom.
[00:09:26] It was, we were on, we were on the track for speech. So the, the songs in songs for sound now I want to make this very clear is, um, my mother, um, actually passed away one month or I'm sorry. One year before Lexi was born, she died of breast cancer. She was a single mom, incredible woman, like the pillar of the church.
[00:09:49] She was just amazing. Her heart was pure. I, I hope to be as good as she was. And she is every good part in me is because of her and her faith and she died of breast cancer. And so I'm, I'm rocking Lexi her whole first year of her life. And I'm singing her lullabies. My mom saying. Everything in our house was oldies music and gospel music and just the, the love and appreciation of what music can be in our lives and how up these, all these memories with her.
[00:10:21] Um, and so I'm singing to Lexi. And even when, like, I mean, just every, like I'm healing from losing this person, because it was so close to her passing. And I was told she was fine at this time. So I had no idea. She couldn't hear and I'm rocking her and rocking her every night. And every night she would squirm and cry while I'm trying to sing her lullaby.
[00:10:43] And I would hand her to her dad and I'd say, why? Like, what am I doing wrong? I cannot connect with my little girl and I would go and I would cry. And so the moment they said that it didn't hit me right away, but, um, that night I was processing it the day she was diagnosed. And I remember I still get choked up and I remember thinking.
[00:11:03] Oh, my word. She never heard me and how I, like, I wasn't upset with her when she didn't hear me, but I didn't understand it. And so I'm sure I projected that onto her, just with what she felt. And so to think of, of life without a lullaby, without a wedding song, without a breakup song, which like sweet Lexi would probably be the yeah.
[00:11:28] Um, and, uh, you know, without a fun song, without a friend song without music, which really is such a huge, huge part of how we heal and enjoy life. Um, as she navigated through all of her next year of hearing where she literally made up two years of speech in one year, thanks to I alternated Mama Lere Hearing School and a preschool for both worlds.
[00:11:53] And thank you to the wonderful people at Mama Lere Hearing school at Vanderbilt. We, I mean, she made up two years in one year of speech. And so, and she never stopped talking since then, because he's still, um, way advanced for, uh, with her speech. But so I watched this little girl this whole, like, and she loves music like to this day, you know, she's not a singer or anything like that, but she's a tic talk like diehard.
[00:12:17] She, um, you know, she's very social. And so everything that we did that we'll talk about today at some point with about the charity, our tagline is so everyone can hear the music. So people might get confused by our name, but that is the story. And it opens up really good dialogue for us to help people all over the world.
[00:12:37] And, um, I can't imagine not doing this for the rest of my life because of the most profound miracle that happened in our family when she could hear.
[00:12:51] Carrie: Wow. You're bringing tears to my eyes. Just hearing your story. And I love it, but I love how you can take something that seemingly was so difficult and devastating and turn it into a ripple effect that impacts so many people around the U S and your own community and internationally too.
[00:13:11] So I'm really excited to hear more about songs the sounds and really how the different programs that are impacting, uh, lots of different people about the world. So you got to this point where you were in the mom zone, and you're like, okay, we were going to do something. Think about this, we got this. And how, at what point did you decide that I need to do something like a 501 C3 charity kind of.
[00:13:44] Jaime: That's such a great question. So ironically, I wouldn't say ironically by God's design, I was already work, so I, I have a marketing and sales background. And then when she was born, um, I soon took a position at Vanderbilt university because Vanderbilt has incredible benefits. And, um, it just seemed like the right next move while I was in the university eventually was hired in the development office, um, on the university side.
[00:14:13] So I was already starting to learn, like for when Lexi was diagnosed, I was working in fundraising. At Vanderbilt, thank God because it allowed me to go over and they were so great. Um, Laurie McPeak was my boss, um, then, and she was, they were just fantastic about letting me make sure that I, I took my lunches creatively to go and observe her speech when I needed to, you know, to have the two way mirrors.
[00:14:36] Um, and so that was really helpful because we, we, you know, if you told us if I'm, uh, you know, we're both athletes, Lexi's a big time athlete. We'll talk about that. Um, I was an athlete. So if you tell me, and I also coach for many, many years, so if you tell me to do something, we're going to do it like three times.
[00:14:51] If you're saying, if you do this and you get these results, I'm like, well, we must be able to get like triple the results we, so I could go observe all that speech therapy and then go home and we could basically train and, you know, and do the training at home every single night. And, and, um, So I am, I'm just, I look back at that and I'm like, not only was I learning how to fundraise.
[00:15:12] I mean, what, how amazing that this was the precursor and how this all played out, but I could be with my kid, you know, when she needed me there, I could be at the graduation ceremonies at Mama Lere, which are the most precious thing. Um, and so through that though, I was watching this child that was just taking off and I was so troubled.
[00:15:36] I was very, very troubled by. The lack of information that I had for her through her first year. Like why didn't we know that it was two to four weeks should have been the followup. Why didn't I know that, um, she needed a hearing test at birth. Why didn't that happen at the hospital? Why did the doctor, why was, was he reluctant to give me just a simple referral back?
[00:16:01] Like, what is wrong? Like, this seems very simple, um, in the grand scheme of things and something that should be done in all kids. So originally my focus, what were pediatrics was pediatrics and helping parents be informed. And I was, I mean, I was like on a mission. Like every mom needs to know that, you know, I was really passionate and it met the phase of life we were in.
[00:16:21] I was with, you know, a young child. Um, and so I looked around and I started doing some research also on, at the time there wasn't a ton, there were a couple, um, nonprofits out there, but I thought, okay, I was having these conversations with their surgeons and audiologists such as you. And they were like, we just don't have the support to get the word out.
[00:16:45] So originally songs for sound was a huge focus on an outreach tour that supported, um, hearing programs across the country. So I did, I think over 25, hear the music concerts at four and fundraisers for hearing programs like Vanderbilt, like at NYU Lurie children's hospital, all these big programs. And then we cut them a check that they could then do some Goodwill in their communities, right?
[00:17:13] So we would package Nashville and these awesome songwriters that we have, and we would take them to new cities and then we would raise money and give them a bit of Nashville. We would do this in the round fundraiser night and they were great. However, I was a one man team and. Every time I was at events, I kept being nudged by these families or people that would say, can you help my dad?
[00:17:37] Who's a veteran. Can you help my brother who just returned from overseas? Can you get my dad who worked in a factory or my mom or whomever? And I kept saying, well, no, this is pediatric. And it really bothered me. So I started looking into how can we, and let me say this, that tour, the music portion of fundraising.
[00:18:00] Um, plan. We do plan to launch that very soon. We've actually had meetings about it because it was very successful. And, and now that we're coming out of the COVID era, um, people are hungry for events again, and we want to support those programs again, but I really felt called and led to do something on a broader scale.
[00:18:20] And most people, if they know me, they'll laugh because they're like, yeah, you're global. Like that's how my mind thinks. Yeah. Like you're global. And so, um, and, and some people don't think that way, but for whatever reason, that's what was put inside of me. And I, I love new things. I love new challenges and.
[00:18:38] I started evaluating the larger problem of hearing health and hearing loss awareness. And I realized it was a much bigger problem than, than what this look, you know, just the pediatric sector, um, the public, which still exists. So I thought, why can your kids, and I can still do so why don't we just start going around and testing people?
[00:18:56] And like, what would that look like? So I started doing research, um, and in the field of experiential marketing and I realized that's where you deploy mobile experiences, um, Pepsi Gatorade, um, you know, um, Nike, all these big companies, they'll go out to big events, big existing community events, and they'll put on this big experience.
[00:19:21] Well, I'm like, well, that has to be extensive. So I've got to find a way to do it on a dime and it needs to, we need to test people which opens up the opportunity to have a conversation about hearing health. So I, so I started diving into the health experiential marketing sector. I picked up the phone, I did all this research on the best experiential marketing companies in the country.
[00:19:43] And one of the first phone calls I made was to a man named Kevin Joyce at a company. And they were the best. And he said, you know, we've been looking at the hearing health sector. And how it, how it's completely underserved and a huge opportunity from a business perspective. So fast forward, we start working together.
[00:20:01] He becomes more of a consultant. I find ways to do it in house cause that's really expensive when you go through companies like that. Um, and so I found ways to do it far less expensive, like a fraction of the cost. And basically we deployed, I'd put in 2015, my first outreach tour, which is a mobile clinic that, um, sets up this beautiful experience at large events
[00:20:27] On weekends and we test, I mean, tons of people every weekend we give out free hearing protection. We have conversations, we have videos, we have all this fun stuff going on. We do giveaways. Um, cochlear was our first sponsor and is sponsored every year. Phonak was a huge sponsor. Eargo has been a huge sponsor.
[00:20:46] Um, Sertoma has supported, like we've had amazing support through the years. Um, and. Then during the weekday, we do these smaller, more high risk locations when there aren't big community events. So like a YMCA with seniors or everyone, senior centers, veterans organizations, um, boys and girls clubs where the kids aren't getting the right healthcare, um, or access to healthcare.
[00:21:11] And so to date, um, just that particular tour, we've served over 27,000 people and we're just getting started. So that's, that's the gist of, you know, how we do our outreach and how, how we reach our people. That's just one part of the, the charity
[00:21:29] Carrie: So, but that too, uh, how many stops do you typically have on your
[00:21:35] Jaime: tour?
[00:21:36] Such a good question. So I like to give a comparison. So honestly, when we hire a tour manager, because it's a unicorn of a person to hire, because he asked to be able to drive and operate equipment, take care of it, follow all the laws that exist for drivers, um, and be very customer service oriented and be passionate about hearing health and, uh, like, and, and look the part, you know?
[00:21:58] And so it is a, a needle in a haystack when we look for that person. And so, and then we ask them to do like triple the work. Um, so typically these tours, I mean, honestly, they're like, whoa. And I'm like, but, but you get to do good in the world. You know, they, they typically do like 70 events a year while we do anywhere from 225 to 240 in a year.
[00:22:22] That's how many stops. We make. And so, um, we follow all the rules and we, you know, we, we do pay, that's a big part of our budget because you have to take care of them and there's per diems involved in everything. But, um, we do 225 to 240 a year. And to date, we've done over 850 events and we have over 650 unique partners.
[00:22:47] Some of those we've served on repetitively. So yeah. So 650 partners, community partners across the country now that we have is, um, I'm very proud of that because it's, it's a lot of time away from my family and, um, you know, for my kids, me and my kids and, um, and it's, every minute has been so worth it because of the people that we've helped.
[00:23:09] Carrie: That's awesome. So, one other question about the community events. So the experiential events. In that community, that then those are you. Like you have partners within that community. So if someone would say, i have difficulty or, or need some help within the you have connections within that community, then to link them up to
[00:23:29] Jaime: yes.
[00:23:29] So I will segue then into a couple of things. So originally we provide everyone with an electronic, so our software let, oh, I can, this can not go without being said, auto hub is the parent company, um, of auto kiosk, which is the software we use. And I say that because Antonio Cocci is he, he developed the software.
[00:23:52] He's the genius behind it. He has donated, um, since 2017 when we met. So for the past three years, he's donated all the software licenses. Before that we had a company called Ultimate kiosk. They did the same super awesome people. And Tony are the AutoKiosk. Is insane. Like the, the, the, the, um, customization that we can do for the brands that support us, but even like the test itself is super, super easy.
[00:24:19] Um, it is, it has all of, um, I'm not as versed well versed on these things, but all the, all the compliances that audiologists look for from the NOAH to, you know, I could name a bunch of them and I'd say, yes, it is that, um, it, it detects background noises. Um, and then factors that into the test as well.
[00:24:38] There's a hearing aid simulator that you can activate. We have not done that yet, just because we're at public events. Plan on doing that. And, um, we, so, so when they said the point of all that is, is when they finish that test, they have several options of how they want to be contacted, how we can get in touch with them.
[00:24:56] Can they make an appointment, et cetera, up until now up until this year, they've either said I want to be emailed. I don't want to be contacted or, um, just, uh, yes, please give me a call, et cetera. And then immediately though, when the test is done, they get some follow-up material on what to do next, if they just want to navigate it on their own.
[00:25:16] Uh, and then we also print that stuff. And what that looks like is a checklist that I created. Um, obviously females are often responsible for the care, the health care of the family. And so with a female mind, um, I know we like checklists. I know we like, okay, we've got 50 million things to do in the day.
[00:25:35] And I just need to know, tell me what to do. So it basically says call your insurance company and make sure that, you know, go to our website, check out the clinic finder, um, make sure that your then call your insurance company, make sure that they're approved under, under your plan. Um, if not find one that is give us a call, if you need help.
[00:25:53] Um, here's some things that we also recommend. So it's a really good guide of, um, what, what steps to take to get to that audiology appointment. However, What I've found through the past five, five years, past five years is what keeps me up at night is I'm leaving them with instructions. And, and they're probably still a little confused.
[00:26:16] We only have 10, 10 minutes or so with them sometimes longer. And I started looking at the data and, um, really doing a deep dive into some of the things that they tell us. Uh, and I realized that people, um, need more and, and just still the data that's out there about how much, how many people are still not being reached or still not making decisions for their hearing.
[00:26:41] So we started developing over the past year. Well, two years ago, I realized I actually found it in a business book that I study that two years ago, I wrote what's happening now, what we're working on now, which is kind of cool to see that it's happening. I wrote what if there was able what if I was able to build a team that could take every single one of those people that do not pass and walk them through for the rest of their life of their hearing journey and hold their hand and answer questions and prep them for appointments and match them to the right personality, audiologists that have their title.
[00:27:14] A vet friend and me might want two very different types of firsts of personalities and audiology. So that's what we've been working on. Um, for the past six months hard, it's called the care team and it will be a group of individuals who are passionate about helping others. Some people like me who have a hearing loss story, um, and we get to call every person that wants to be contacted and we are going to equip them for that appointment.
[00:27:40] Here's why about two years ago, I started doing, what's called a hearing health profile on people, which means when they take the hearing test, that's just one portion of what we, what information we gather. We actually also gather information on their affordability. How do they rate their hearing? Because we might tell them they have severe to severe, but they might still think there are two that tells me we're going to have a very different conversation than someone that says, no, I'm a five one out of five.
[00:28:08] I'm a five and I have severe hearing loss, like they're ready. And we ask them, do you believe in hearing devices that helps us build a better conversation? If they're a yes. And they also say I'm a five and they're severe to severe. I think we can move that along a little bit more quickly than someone who's like, no, I can hear I'm a one.
[00:28:28] And you know, no, I don't believe in hearing aids. And you know, we have to have a very different nurturing conversation. So, um, and then how, how much can you afford? I, I do struggle with when I hear story after story, after story on the tour where they've walked into an appointment and they've said, I, I can't afford that.
[00:28:49] And they feel like they paid for something. And they made it happen. And either they didn't report back to the audiologist, like they should with how to hear best with the hearing aids and get those adjustments made, whatever the case is, they didn't get the full benefit of that hearing aid and they put them in the drawer.
[00:29:08] So the care team is designed to empower the consumer to make good decisions about their hearing loss and be in the driver's seat. However, to be very, very supportive and very, very. Um, what's the word, um, be prepared to be in partnership with the audiology and be respectful for what their role is in their life.
[00:29:30] Moving forward to understand how much that audiologist means to them and what, how much they need them. And to help bridge that relationship by making good personality matches, and then equipping the audiologist with that information prior to the appointment. So that everybody is we're skipping past a lot of steps and they can say, okay, I've got this in front of me from songs for sound and their team.
[00:29:52] Um, I totally understand where you're at. Let's review this. Am I correct? Yes. Okay. Well, let's get to work and help you here. And so now we're not losing people and you know, on the business side and audiologist has a better chance of retention with that, with that patient. Um, and it may not be the premium that they wanted originally, but you're going to get it over a lifetime and, and keep that patient.
[00:30:15] So, um, this is coming from a professional perspective, as well as a parent, as well as honestly, the best friend to thousands of people across the country that I've personally spoken with. And the things that we hear over and over and over is there's not enough trust in this industry. So the care team is ready to build the trust again and create those matches.
[00:30:38] Wow,
[00:30:38] Carrie: that's amazing. Because then you, do you want patients to be empowered with their own information, as well as you know, what those next steps are. And sometimes you need to have somebody walking down that path with you or you won't like take that next step. So it sounds like that care team would definitely help with that.
[00:30:56] Jaime: Yes, I it's, it's, I'm very proud of this, this one. Uh, it's it's hard work. We're, we're trying, we're scraping together all the change and the funding to get it together. And we're really excited about some things happening, but, um, you know, it's so important. This is the part where I can sleep. It's funny.
[00:31:11] Like we are putting a lot of resources into this, so, you know, in charity world, sometimes you're just like, okay, okay. You know, I have to pay my people out. The, you know, it's gonna, it's gonna work out, but I actually sleep more at night now than I have in a long time, because I honestly like this is, I know this is a game changer, especially let's be real.
[00:31:31] Um, let's talk. I mean, we know OTC is it's going to happen, whatever it looks like it's going to happen and we need to have a consumer focused land. And I feel like, thank God. We've been well ahead of that for a while now. And so a lot of the hearing aid companies and, and device manufacturers are calling us saying, okay, how can we w what's next with songs for sound, because you have been talking to the consumers for so long, and it's less about us kind of being in this power position and more about the information that we have.
[00:32:01] Just this fear, like, uh, a bank of marketing information, um, to have better conversations with, with those consumers. We just know what we know, what they.
[00:32:12] Carrie: Yeah. So what are your, do you have like a launch date or you already have pilot program in place for all this
[00:32:18] Jaime: of this pilot program is in place and we're hiring right now, a couple of individuals.
[00:32:25] So if you, we actually need one more, if you know of anyone interested have them email me. Um, but pilot is in place and it'll go four weeks. And then, um, I have no doubts that it's, um, yeah, I mean, even the software that we, we landed on, like it like even worked in our little tiny budget and, um, it's just, it's so exciting.
[00:32:46] Cause it's fantastic software that we can incorporate a lot of those love pieces, you know, my heart for people like the, the, the hearing health profile and how we talk to them. And, um, I'm so excited. It's yeah, I'm so excited. So yes. So hopefully we go hard launch in two weeks. Um, You know, fingers crossed, whatever.
[00:33:07] So, um, yeah. Thank you for asking that we're really excited. And then after a four week trial, we plan to go like go full, full go. So right now we're focusing on everyone that we've served, obviously, um, over the past five years with a heavy focus on the most recent and then working our way back. Um, really excited.
[00:33:25] Yeah. Thank you for asking.
[00:33:27] Carrie: I can hear the enthusiasm and excitement in your voice as you talk. So that's
[00:33:31] Jaime: awesome. Very much. I mean, I'm sleeping when I do sleep, but hours are longer and you know, it's just the long days, but it's good stuff. It's going to be fun to see this. Yeah, it's going to be fun.
[00:33:42] Carrie: So with all of that going on, are you still doing like you're here with the music kids camp or, and some of your other programs that you have going on for the songs The sounds?
[00:33:54] Jaime: so everything, as you know, was on hold for events. So hopefully the kids can launch. We have tossed around potentially the fall.
[00:34:05] We have to talk with our partner. I don't think that they're fully open quite yet. Um, and, but the latest would be next spring or next fall. So it would be hopefully this fall, if not next year. Um, and that's also depending on a sponsor to cover the year, the music kids camp. So that is by the way they hear the music kids.
[00:34:22] And amazing, amazing program that we offer. So we've served over 300 total people and, um, families to date, um, that we partner with the center for courageous kids who really host the camp. And they kind of look at us as like a sponsor, but it's heavily focused. It's a hearing loss camp and, um, they just take the heavy lifting off of us.
[00:34:43] So it's oh my gosh, I can't is it 400 acres that they have. There. And it's just amazing. They have horses and they have canoeing and they have fishing and they have bowling and they have all these amazing activities for the kids. Their living quarters are fascinating because you can, they design it because in the summer they have teens and kids, camps, no families.
[00:35:08] Um, but they have these big rooms where you could have anywhere from four beds to eight beds, if not more to 10 beds. So they put a whole family in one big room and it's super comfortable. These rooms are like these. They're like, it's kind of like college, but just bigger rooms with more beds, you have your bathroom and everything.
[00:35:27] So it's not like per se, like you're not roughing it per you know, but it is, um, an activity camp. And what happens is. As they hear the music. Um, you know, obviously we keep music at the center of all we all that we do and hearing it. And so there's a lot of programming of families just being able to be together and share.
[00:35:47] Um, but we also build in like this past camp, we did a teen panel where we had four teens with cochlear implants. Um, and here they were all CIs. No, no bilateral hearing aids. So CIs and hearing aids and do spoke. Phonak actually sponsored that as well. He's a Phonak kid. Um, he's a football player at Brentwood academy and he spoke and told his story of overcoming all of the obstacles and the parents were just blown away.
[00:36:16] The kids weren't even there at that point in time. Um, and so we do things like that, but it's a really great opportunity to just share and care and be together and have fun. And then at the last night that we're there, there's a big dance party. And for me to get to sit back and watch all these little, little ones just it's, uh, the age is five.
[00:36:39] to 14 is the average age, um, to watch them dance and have fun and see each other every year. Um, it's amazing. My favorite thing that happened there was the first and second year we brought in songwriters and we actually started to write our theme song. And it's pretty amazing. It's called Hear the Music.. It's gotta hear the music and like a country song.
[00:37:02] I mean, it's just very, I can, I promise you what we on the radio at one day, um, with all, all proceeds going back songs for sound, of course. But, um, anyway, it is, um, it's amazing and the kids helped write it. And so we did the, these sessions where the songwriters taught them, you know, all about songwriting and.
[00:37:19] music and words. And we would have them yell at words for, for, um, different verses in the songs. And so everybody participated in it over a couple years. It's amazing. So that's that. And so hopefully this year next, and then we do our mission work in Jamaica, which is our one model right now where we've been serving and we'll basically recreate the stuff we do here over there.
[00:37:44] Um, we did the whole bandaid approach where we did hearing tests for our partner. It's a deaf school. We started serving, um, and years ago, I'm sure everyone knows Dr. Fred Bess. Okay. So quick story years ago, Dr. Fred Bess and I were meeting about just when I was at Vanderbilt, you know, I just knew of him and I actually had already started songs for sound on the side.
[00:38:11] I wanted to gain more, um, Like, I just want him to be more immersed into the culture. So I went over and I worked for an otolaryngology department, um, actually in the voice center, but I was closer to all of that and just understanding that world and Dr. Bess and I met and I was like, I like loved him.
[00:38:29] Like, I'm like, I need to be I as any time I can just go chat. So I'm just go chat with him. And I said to him, one day, I said, Hey. So I feel like I'm supposed to, I feel like God's putting on my heart that I'm supposed to go somewhere internationally. Like, I don't know where it is. So he starts telling me, we start having these meetings about all of his work and overseas and Russia and everywhere.
[00:38:50] And he's amazing before, you know it, a woman named Kim who is incredible. She worked there, she came to me and she said, my church serves this deaf school in Jamaica. And no one's ever someone came and did hearing tests on a couple kids, but not everyone. And then they never came back. And she said, would you go?
[00:39:13] And I'm like, it's funny, you mentioned that. I feel like I'm supposed to. So Dr. Bess and Kim and myself went down for kind of a proof of concept mission. And six years later, we've been back, um, year over year, except for last year. And we've given two sets of hearing aids because they lose them and they don't know how to take care of which has led to, um, you know, us doing a deeper dive into hearing health as a whole for Jamaica.
[00:39:39] Um, the school is, the kids are amazing. I watched many, we actually, the identified that two kids had normal hearing. They had cognitive delays. Um, but we took, we've taken amazing, amazing, um, audiologists and, and, and parents and, um, nurses and all kinds of grad students. And we've done some incredible work.
[00:40:00] Um, basically though, right now we're trying to raise $5,000 for a demography report. I added an amazing board member. Who's from Jamaica. And she is also an audiologist for Cochlear. And so she's helping us be a liaison with, uh, she's, she's obviously a perfect champion for us. So we're working to work with the government on more awareness and then go in and do what we do here.
[00:40:23] So that's where we're at now. Um, but we can't go yet and hopefully soon we'll be back. I think in the fall, I'll go do another, I have another go at it and meet some of the, um, the, the, the, hopefully we'll be at the place where we have the demography report and we can have meetings with the government and start some, some thoughts on awareness and how we start with awareness.
[00:40:47] Carrie: Wow. The amazing big picture ideas. So that's awesome.
[00:40:52] Jaime: Yeah. Well, and really quickly, there's only one audiologist in the entire country of Jamaica. Wow. Well, a lot of your texts, you know, hearing texts, et cetera, but, and she Dr. Beavers and we're working with her, but she's about to retire. So, yeah, so like, it's like similar to like early intervention has to be, uh, uh, and we have to do that first, um, also outreach, like we do here.
[00:41:12] We have to find a way to recreate that outreach there and get testing there, but we have to have their support. Um, you know, we need to, we need to create incentives and, and understanding of how these people can actually function in society. If they can have help, um, as can be minimal for them, for what it probably costs them to, to take care of them if they're not treated.
[00:41:33] So, um, yeah, so that's it. And then we plan to re you know, hopefully eventually my son wants to one day, you know, um, he wants to run our international missions. And so whoever, if it's him, um, Jacob would be great at it. And he's great. Um, after he, you know, goes to college and all that fun stuff, but we do want to recreate that in other countries.
[00:41:52] Once we have that.
[00:41:53] Carrie: Wow. That's awesome. So obviously like all of these projects and visions and continued vision, take money as well, and fundraising.. So can you share a little bit about how you follow and what your top fundraiser?
[00:42:12] Jaime: Well, so there's that part that does keep me up at night, to be honest, when I wake up now, I'm like, oh, we need money.
[00:42:22] Um, and we do, you know, it's just been so hard on nonprofit. It's been hard on everyone. I'm not going to for-profit non-profit people who are out of work. Um, you know, first of all, shout out to all our first responders and all of our, our nurses and doctors who have been working so hard in the pandemic and, um, But I want to give a big shout out to the people who've been barely, you know, trying to figure this out in the charity sector, because it, it hurts our fundraising style.
[00:42:48] It was a, it was a stop. There was no, it was a cliff. If it wasn't for the government, you know, um, creating opportunities for us to continue to get support through the PPP. Um, I don't know. I can't even imagine. So, um, we were still able to pay the staff. We kept working, you know, we started looking forward to, we had time to plan.
[00:43:07] So, um, all these great programs, um, So we have several events throughout the year, um, that we do fundraising. And now I finally have some team members where I can actually start to make those really successful before it was like me and a part-time person. And I mean, I can put on a great event, like you've met me in person, so I'm going to put on an amazing event.
[00:43:32] And then, you know, like, we'll forget to ask people for money. So I'm, I'm glad I have a team now that, um, is, is going to help me make this more successful, all these events more successful. Um, and having said that we have our hear the music gala, which is what I explained earlier. And so we've done that here in Nashville almost every year, except for last year.
[00:43:53] Um, and that's our big annual fundraiser. We just had that as you know and attended it..
[00:43:57] Carrie: Yes. And I, that was my first time attending and I got to meet you and it was such an amazing event. I was, I loved hearing your daughter speak at the event. Yes. And that was just amazing to hear her side of the story. And then also to hear your side of the story and also, you know, Derrick Coleman and the other, um, gentlemen.
[00:44:22] Yes. Who interviewed, interviewed him. What kind of had that conversation with him was so inspiring. And of course the music was good, wonderful as
[00:44:31] Jaime: well. And it was a little different because it was outside. So I. I love you have to go back next year. So I love that event, my team. So I have to give my team a shout out Miranda Weidle
[00:44:41] Do you all know she's was, is an audiologist. And she, um, came on as co-director recently and she manages our partnerships and just amazing. And she oversaw all of that. And, um, you know, my, my team Joy and Gina, they're like, Gina's our master coordinator. I've been with for three years coming up. And she's my niece.
[00:45:01] And, um, actually my, my niece in law, um, she's married to my nephew who is a Sergeant in the army. So there's that veteran passion that she has for the vets with hearing loss. Um, and then Joy, who just came on Joy, Scarborough. She's amazing. She's like a little go get her. And she knows a lot of people and she's really helping us to expand our vision for what we could do with these events.
[00:45:20] So, um, all of that, they did such a fantastic job. So I want them to know that, but I can't wait for you to come next time indoors only because I've got that down to like, uh, like, uh it's uh, it was beautiful outside. I have it down to like a science, like it is. I know exactly like how did you four hours of constant entertainment.
[00:45:41] So, um, I'm excited to get back indoors, but I did love, it was so beautiful. Like it was whether
[00:45:47] Carrie: it was beautiful that the venue was perfect and
[00:45:52] Jaime: cool, really neat. And our musicians, I mean, they were amazing. Um, they were awesome. So, um, so we do that and then we actually just, this launched this year and it was so successful.
[00:46:02] It's just for veterans, we do Skeet shoot. Um, so shoot with, you know, I don't know, sorry, people, if you're on, like, if you're not passionate about guns, but this is really nothing like that. It is for our veterans. So it's a good tie to like, you know, it's obviously a lot of men that want to come out and support vets and we had some women as well, but we did a skeet shoot.
[00:46:23] So you basically have a team that you bring in, whether you sponsor it or. Just put together for, you know, three, three in yourself. And, um, there are four somes that come and it's very fun and it's a competition and it's at a place called Nashville gun club, which is amazing. And, um, they did a great job and then we had a reception with some music.
[00:46:42] It was awesome. A lot of fun for all our work with veterans. So that was great. This year. The second thing or that, I'm sorry, the third standing fundraiser, which we haven't talked about today, and I'll, I can wrap up with this Hardaways Hope is our third pillar. So we talked about the things that we do, um, outreach, the first one, which is all the big touring and testing and, and helping people learn more about hearing loss and giving them a benchmark test in a conversation.
[00:47:09] Then we move them into the Care team, which we've talked about today, where it's my team for life. They're your friend for a lifetime. And then the third part is Hardaway’s Hope. So now what I have my hearing device, I have my cochlear implant, my hearing aid. Um, I'm a child, I'm the mother of a child, or I'm an adult.
[00:47:25] Now, what Hardaways Hope is now what? Um, John Hardaway was on our board. He was a lifetime board member. He lost his hearing to cancer treatments. Um, the first time he had cancer and, um, it was his wife would tell you that. And he would tell you that, uh, cancer took his life, but the cochlear implant gave him his life back.
[00:47:45] He was, as you can relate to, he was in sales. He was the general sales manager for Brown-Forman Jack Daniels, all those big brown, like he was like salesman of the decade or something crazy. I don't know. He was very, very, very popular within their company. And he had, he had to communicate every single day for his job.
[00:48:02] We all do his livelihood, his communication board meetings, uh, phone calls face-to-face meetings in the car traveling, going out and seeing all of his clients. And suddenly he couldn't after meeting cancer the first time it was like another, just, just shot in below and. He was, I was introduced to him my first year for my first event.
[00:48:25] He actually brought, this is how great he was. So I'll tell you what happened and I'll go back this. He passed away two years ago, ultimately of cancer. Again, had a cochlear implant. I met him through Dr. David Haynes, CI surgeon who was his, um, he's been the breadth of this charity. He was my right hand, man.
[00:48:43] He was more than a board member. He was like a father to me. He was a friend. He was a confidant. He was my mentor. He was my peer. Um, we laughed, we cried. He was my, my bud. And I love his wife, his family. Well, um, the first event that he supported was our first hear the music, fundraiser in Nashville for Vanderbilt. And he actually brought.
[00:49:09] The man who had just shot some of inland that's how cool he was. He was at our first,
[00:49:19] um, oh, what is his name? It's it's skipping my mind Robin. Um, goodness. And so I found that out like way after, obviously we didn't know at the time nobody knew this, but he was there. He was home seeing someone and who came with John, like that's how cool John was. John would just do something like that.
[00:49:37] And I didn't even know it till years later. I'm like, you've gotta be kidding me. So was the Titans former head coach, um, um, who, uh, oh, Fisher coach Jeff Fisher was there like all kinds of people in the room because of John, like that's who he was. And, um, anyway, he left a legacy behind. He always said he picked up the tab when we ate and he always said it's for the kids.
[00:49:59] Number one. And number two, all you wanted was for people to hear. He just like me. He just wanted people to have the life back that he was given. And so Haraday’s hope is everything after. So we'll, we'll hopefully build our building. Hopefully have a place where we can call home where we will have virtual services, in-person services, meetings, parties, fun, trainings, everything, corporate training, helping companies be equipped for people with hearing loss, going out and do an education at like what we experienced on Sunday at an airport where the security guard was not going to let Lexi go through the metal detector versus the scanner.
[00:50:35] And she called a supervisor and it was very embarrassing for her. Like just better awareness, um, things like that, like all sorts of programming, all sorts of training, academic support. That's a whole other thing, girl. Um, but, um, we need to do better by our kids and understanding them better and their unique needs.
[00:50:53] So Hardaways Hope is all the after. And it's just a seed right now. So we need a lot of funding so that we do the golf tournament. And the fall, and that's the Hardaway’s Hope. And that's an October this year. So, um, all of this will be up on our website soon, but just so you know, like those are our three main fundraisers.
[00:51:12] Um, and we hope to launch the, here, the music concert, national tour, again for fundraising, um, and go across the country. But, um, mostly we get sponsorships for our tour. That's a huge part of our funding, some grants, um, and then annual dinners. So we're always needing cash.
[00:51:32] Carrie: I try. That's a huge part of what you guys do is the fundraising.
[00:51:37] So you can do all these amazing programs that you have. Um, I already launched and, and about to launch. So it just. Totally blown away and amazed by everything that you guys do. And, um, I, I'm glad to have been a small part of that with your last fundraiser, but what people, our listeners today, um, are hearing this and they're thinking to themselves, how do I get in touch with you?
[00:52:04] How do I donate? How do I serve? What would you say?
[00:52:08] Jaime: Oh my goodness. So we love donations. We would take any. And I really do like, I don't, I don't think people understand that. We're truly, honestly, I see my background at Vanderbilt in fundraising was annual giving and we would always say every dollar counts and it really it's true all these little dollars.
[00:52:24] If we have, you know, a thousand people give up $50 or a hundred dollars that adds up. Um, and so. Anytime that you can give, we have opportunities to even do a monthly gift. If that's easier on you. Um, I cannot stress the importance of supporting something that is meaningful to you and that you connect with.
[00:52:44] And then the second part to your point is once we launched this tour, come out when we come into your city or we're near you and come serve with us, we believe it or not. We have a hard time finding people to come out on a Saturday and just talk to people about hearing health. Um, it's, it's Cochlear has been a great partner there.
[00:53:01] Um, and Phonak where they would have a Cochlear has a whole volunteer. Like, I mean, their network is insane. Um, and so they did a great, they've done a great job about helping us have some folks on site at the big events. Um, and I know people are busy, but I promise you every time these volunteers leave.
[00:53:18] They're like, oh my gosh, this has been so awesome. Like this has been so healing for me, you know, I just got to, I'm not just at work. We're telling my story, the same person again. Um, I'm, I'm literally helping change someone's perspective because believe it or not, if you knew how many times we had the wife twisting her husband's arm, like, okay, it's here now.
[00:53:40] You're taking the test. We're good. We're doing this. We're doing this. Um, or, or in honesty. The mom who says my, my child really they've diagnosed him with ADHD, um, all these things, and we haven't been given a hearing test yet. You think that could be something that could be an and there you go, they've got a moderate and one ear and a mild in the other.
[00:54:04] And they're being given, you know, ADHD medications when it could potentially literally be the child needs hearing aids. Um, and so I, I do have to say this because Christine Church, who used to work at Cochlear, um, remembers this story in, um, Chicago, our first event ever. And this woman brought this little boy on who I think the family had little means and he had no speech.
[00:54:31] He was three and a half years old. He failed. He ended up, um, I believe in the Luri hospital system, um, for further services, but he, and, and he was with, uh, his, his parents were deaf. And nobody like, even, even with deaf parents, they truly, honestly didn't understand that this child had hearing loss. It was, it was the craziest thing.
[00:54:54] I was satisfied. I have his picture with me and him. Like, I know I can still see this child. And, um, the grandma was like, I'm here, we're getting this figured out. They're not with me today. So they can't say anything about it, you know? And it was in this child was as happy as can be, but had no communication whatsoever.
[00:55:11] None, no sign language, no nothing. So because no one would simply diagnose. So I get all the time we get that dramatic versus mild hearing loss or unilateral hearing loss and kids, um, which is very, um, underdiagnosed. And so, um, and the adults, I can't even imagine. I can't even tell you, we do the American Legion national convention with veterans who have access to VA benefits and they don't even know.
[00:55:37] And they fail their hearing tests and we walk them literally to the VA and we help walk them through and they come back the next year and they're like, look at me. I got my hearing aids. So anyway, so just getting involved money is super important. We need support financially. If you're a sponsor out there, if you're hearing company in any kind of audio, anything, and you want to get involved, reach me.
[00:55:57] Um, but being onsite with us and watching our events and watching our event page and come in and be with us, it'd be a lot of fun.
[00:56:05] Carrie: Oh, good. Well, I will definitely link your website to the show notes today. So people can just link on to that after they hear the podcast. And I guess just to wrap up, is there anything that I didn't ask you that you want to share?
[00:56:21] Huh?
[00:56:21] Jaime: Well, um, if you don't mind from a mother, I would like, I actually would like to give a shout out to Dr. Emily Lund, who is a PhD from Vanderbilt. They let her keep Lexi as our only, only patient when she was doing her PhD. Thank, thank goodness. Um, oh my gosh. Um, because she was she's amazing and Ginger Jones was actually
[00:56:43] Ginger Jones. She's an audiologist as well, or no, I'm sorry. Speech pathologist. And she was at Vanderbilt too. And she started in practice and it was doing great things with tons of clinics, but we were then handed to Dr. London. Um, she is now at Texas Christian university leading the department and we still go see her and Dr.
[00:57:01] Berger out there. And he's the audiologist. And here's the thing. I learned a lot with this process, and this is something that I want, whether you're in speech or audiology, because they worked together on Lexi's case per se. And this is a part of the Hardaway’s hope that I'm super passionate about when it comes to academic support.
[00:57:18] So we, uh, in about third grade, we started seeing that that's when you go from learning to read, to reading, to learn, obviously, and we started seeing the teachers were coming to us saying, um, we think she has maybe focus issues or ADHD or whatever long story short, I call Emily. And I'm like, I mean, I mean, I don't know what's going on there.
[00:57:43] Should I have this evaluation? And she's like, no, come out and see me and let's start doing, I want to do some, some different things to flag. So she started with a non-verbal IQ test to see where would Lexi be if she was just, um, if she'd been born hearing, like what's her natural intelligence, which was, I was like, I was just, like devastated is a good word.
[00:58:06] I was fascinated. By this thought process, because this is brilliant. Like we want our kids to, like, I think every kid should have this, first of all, because it's like my, like if I know that my child has a natural intelligence within reason, like I want to push them and help them and nurture them, but I need to know where they need support.
[00:58:24] And also I need to know where it's okay, where they don't have to be like everyone else. My son is he's like, he wants to, he loves cars and he can tell you every single part on a car. He can. I mean, he's just, and he's emotionally intelligent. He understands people he's he feels for people, but he works really hard at academics.
[00:58:42] So he's still gets good grades, pretty good grades. But, you know, I don't have me telling him he has to be a 4.2 GPA student at a, at a private school may not be the best thing using my time. Right. So, anyway, so with Lex, so she did this thing and she did say, Lex is naturally pretty, you know, she is an academic.
[00:58:59] And, um, so if we see she naturally, she probably get all A's. She was on the high side of a higher set of average on her, her IQ tests. So then we looked at, so where are the dips? So she started, she didn't just do, like, we're going to do this test, this test, this test, this test, like four tests. And that's what, that's it.
[00:59:17] She started here and if she didn't see any moved on to this next, it was kind of like an if then scenario everything. And then if we've saw a little gap here, she'd say she, she went deeper and she went a lot deeper with that issue. Everything went back to the gap of language and mental fatigue. So I don't the, the Hardaway’s hope is super important to me because our kids, like, I know for a fact what I'm doing with her, with her school grant, when academy and her, she went to a different school for K through five at CPA.
[00:59:47] It's totally different than what's happening and especially public school systems and the attention these kids are getting. And it's frustrating to me because I know that they could be performing much at a much higher rate than I think that because of the support just isn't there. Um, what we identified was basically a personalized plan for her, um, with a set of guidelines for what she needs.
[01:00:10] And again, it went back to language. So we know if she gets an, a grade, she gets a, B, we need to take a little look like, is it her? Cause like Lexi and she likes to take, talk and study, um, and she's has a busy schedule. Um, and then, or is it. You know, is it something more? And then usually, almost always, if it gets to that B to C range, it goes back to language.
[01:00:34] And let me tell you where we've noticed it, the most test taking questions. So with that language gap, number one, my point is, is please. When you guys see these families, there's never a stopping point. Learning language has to be like, you have to pound. I felt like it fifth, it's it? Kindergarten. We graduated, you know, like we're off now, we're off to school and she mainstreamed all this stuff.
[01:00:58] No, please just tell your families, this is a lifelong journey because you'll never, she'll never get those two years back. She don't, you know, by the time she was really processing language and really like going, it was almost two years, let's be honest. And so she'll never get that back. So. Number two, putting on a cochlear implant.
[01:01:17] Isn't like putting on glasses. It's not at schools need to know this. And number three, we need a better individualized plan for these kids based on what their natural intelligence is. And we've noticed Lexi needs most support on the test questions and preparing for tests and things like that. Um, decoding those questions cause she usually knows the answer, but she can't get to it because it's a difficult question.
[01:01:37] So just, um, just continue. Like the kids, I think is still, you know, such a big passion of mine. And I don't know if everyone knows this, but you know, Lexi is, I'm so proud of her. She is the, you know, she was just recently. Number seven in the country, um, in her grad class for pitching and she's on this major travel team.
[01:01:55] And I just received her first questionnaire from a D one school. And she's 13 today. Um, it's super cool. Um, a couple came out a couple of big D1 coaches came out to see her play this weekend she's hurt. So sadly she couldn't perform, but, um, but anyway, these kids should not have a limit. They should have a limit list.
[01:02:17] And, um, I think that if you want to, if you're an audiologist or speech pathologist and you want to get more involved in this Hardaway’s Hope thing, um, contact me. Uh, I hopefully Dr. Len will. Um, I know she, she's so busy and amazing, and I'm going to try to hopefully help this, you know, her roll this out one day across the country, this whole approach.
[01:02:37] Um, she's very busy doing great work there. Um, but I want to say thank you to her and thank you to all our team and you for having us today. Um, if anybody needs me, I love, I love helping people one on one too.
[01:02:51] Carrie: Well, thank you Jaime so much for everything. I love your personal story and your passion and purpose that you have because it really shines through.
[01:03:02] And it's a ripple effect for so many different people, whether they just need to hear more about hearing and hearing challenges or they're a family or a veteran or another individual who does have hearing loss. So thank you for everything that you do. And boy, yeahe 501C3 songs. The sounds. And when you come to Ohio, I'm going to jump on board and be one of your volunteers.
[01:03:29] Jaime: Yeah. We have to give them a shot at, so the Ohio state university, you didn't remind, like we haven't talked about that. My, my I'm a Buckeye and raised 31 years before I moved to south to Nashville, which is where I'm at now. Um, yeah. Shout out to their department. So Dr. Gail whitelaws, we both, oh my gosh.
[01:03:46] Love her. And we just, um, helped a woman. Um, we, we purchased her hearing aids and moved her through. She actually screened on clinic at Easton town center, went on her own, trying to, you know, this again, the care team. If we had made that call, you know, we would have kept her, you know, with us for a while, but she tried some things on her own did not pan out, left frustrated, came back to me.
[01:04:09] She is absolutely loving. She's got the Phonak. Um, oh, the paradise, the latest, like, uh, Cadillacs appear. Anyway, Dr. Gail Whitelaw and her team. Um, they, I asked them to help because I wanted her to be like, I want an eyes on this. She does her hearing loss is a little like. It needed some extra attention.
[01:04:30] And so I called them and Jodi Baxter is very familiar with Phonak system. And so she took care of it and she had a sub like a sublime experience. They were amazing. We actually set our clinic up, um, at a football game each year in the fanfare area and do your hearing screenings and the student audiology department, um, or the audiology, the students in audiology are there and they support it.
[01:04:52] So we love go bucks.
[01:04:56] Carrie: Yeah. And I loved the Gail Whitelaw too. We had colleagues and we actually have a camp tonight that we're doing virtually through Ohio state university, for teens with, um,
[01:05:12] has the parents and I have the kids. So it's going to be a good evening.
[01:05:16] Jaime: Well, next time I want to kind of
[01:05:18] Carrie: camp. Yeah. Well, next year we have to be in person and then you can come to the Ohio state university and we live experience.
[01:05:28] Jaime: So that's Lexi’sdream school actually. So one of, one of her top five, so she's
[01:05:34] Carrie: come to the camp.
[01:05:35] Jaime: Oh my gosh. She has,
[01:05:36] Carrie: she would, we're just going to sign her right now. And 2022, she'd come to Ohio, state by camp and that'd be a great experience.
[01:05:47] Jaime: It's actually, the softball camp is next week, but she can't go because she's still on. She's going to be out on the injured, but they have to do that. So the coaches can see them, you know?
[01:05:57] Um, so yeah, so anyway, so, um, but if it's around the same time, that would be amazing. We'll just stay. There you go anywhere now, the world is our oyster.
[01:06:10] Carrie: Well, thanks again for being on the podcast. And I just want to thank all of our listeners for listening. And if you, um, share this podcast with others, then the others will be able to learn as well.
[01:06:20] So thank you again,
[01:06:22] Announcer: This has been a production of the 3C Digital Media Network. .

Episode 23: empowEAR Audiology - Dr. Rene Gifford

Announcer: Welcome to Episode 23 of empowEAR Audiology with Dr. Carrie Spangler.
[00:00:16] Carrie: Welcome to the empowEAR Audiology Podcast, which is part of the 3C Digital Media Network. My name is Dr. Carrie Spangler, and I am your host. I am a passionate audiologist with a lifelong journey of living with hearing challenges in this vibrant hearing world. This podcast is for professionals, parents, individuals, with hearing challenges and those who want to be inspired.
[00:00:45] Thank you for listening, and I hope you will subscribe and invite others to listen and leave me a positive review. I also wanted to invite all of you to visit and engage in the conversation on the empowEAR Audiology Facebook group. Transcripts for each episode can be found at www. 3, the number three, C digital media network .com under the empowEAR Audiology podcast tab.
[00:01:18] Now let's get started with today's episode. Hi everyone. Welcome to the empowEAR Audiology Podcast. I am really excited for this conversation today. And I'm gonna welcome our guest today, Dr. Rene Gifford. She is a professor in the department of hearing and speech sciences with a joint appointment in the department of otolaryngology.
[00:01:42] She is currently the director of the cochlear implant program at the Vanderbilt Bill Wilkenson center and the division of audiology, as well as the director of the cochlear implant research laboratory. Her current research interests include combined electric and acoustic stimulation with cochlear implants, speech and auditory perception for adults and children with hearing loss and spatial hearing abilities of individuals combining hearing aids and cochlear implants.
[00:02:13] Dr. Gifford's research has been NIH funded for nearly 20 years. She has published over 125 peer reviewed articles, multiple book chapters, and she authored a book now in its second edition and tied on cochlear implant, patient assessment, evaluation of candidacy, performance, and outcome. She was the 2015 recipient of the Louis DeCarlo award, but recent clinical achievements based on her work with hearing preservation.
[00:02:45] Implant recipient. And finally, Dr. Gifford received the 2017 Vanderbilt chancellor's award for research, which recognizes excellence on the part of faculty for published research, scholarship, or creative expression. And she is the 2021 with that being the Jerger, Research career award. [00:03:07] From the American academy of audiology. So Dr. Gifford welcome today to the podcast. I'm so excited to have you.
[00:03:15] Rene: Thanks for having me. This is going to be a lot of fun.
[00:03:18] Carrie: Yeah. So I am really excited. I know we've never met until today in person actually virtually today, but I heard your conversation or your, um, your.
[00:03:31] Presentation at the sound foundation conference, which was just in March. And I was very intrigued both personally and professionally about your research in bi-modal patients. So I'm really excited to learn more about that today. But before we go into that, I always like to ask my guests, how did you get into the field of audiology?
[00:03:55] Rene: Yes. Great question. That is, I love to hear that as well. So mine is a little bit roundabout, as I think many of ours are. I started out as a pre-med, um, GRA know undergraduate student at Arizona state university. Um, I didn't really necessarily know why I wanted to do medicine. I just knew I loved the sciences and I particularly loved physics, um, as a high school student.
[00:04:16] So I knew I wanted to go down that path. And, uh, about two years into the program, I was really struggling to identify major, to go along with all those pre-med curricula and just, I felt like I was floundering. Um, didn't really love chemistry. Didn't do super well in it. And that's such a strong component of, you know, with the medical field.
[00:04:38] So I happened to just take a course in the department. Speech and hearing science at Arizona state, because I grew up next to a speech language pathologist, and I thought, well, let's try that out. You know, it's, it's, it's science, it's interesting. It's helping patients and my intro to communication sciences and disorders class.
[00:04:56] As soon as we got to the section on hearing. I mean, I was done. I just knew immediately. That's what I wanted to do. And it's so funny that it took me that long to figure it out because now here I am. Um, I'm nearly a junior undergrad. I did not have a major. And, um, the weird thing is I was raised by my grandparents.
[00:05:15] So my grandparents, um, from the time I was one year of age and my grandfather was a world war II veteran. He was in the 82nd airborne division a paratrooper and he received a purple heart. He had actually been shot down over the battle of Sicily and due to that, he had lost nearly all of his hearing in one ear.
[00:05:35] And he had a very steeply sloping, a precipitous hearing loss in the. So, as you can imagine, um, he struggled a lot. He was told for years by, you know, ENT audiologists, that there was nothing medical or surgical that they could do to help his hearing. And they were absolutely right at the time. Um, and then, you know, you tried number, hearing aids.
[00:05:55] Doesn't work so well for that type of hearing loss. And I just remember spending my entire life from the time I was maybe two or three. I remember having to grab a chin and kind of like moving it like, oh no, listen to me. I, you know, we're, we're talking now and having to, you know, really help facilitate effective communication.
[00:06:12] And so as soon as. Found this field, which I just absolutely love. Of course I was meant to do this. And, you know, and of course when my grandfather passed away in 1993, um, actually just before I switched to this major interestingly, and so I really felt like the timing was just absolutely perfect. And, um, while I wasn't able to necessarily help him and he wasn't able to get the, you know, the benefits that he needed during his life, I really sort of feel like this is me kind of giving back to, um, to them and, uh, for everything they did for me,
[00:06:43] Carrie: Wow.
[00:06:43] That's an incredible story of how like the little seeds in your life get planted over time and then it comes to fruition. So, wow. That's so heartwarming. And then, so then you ended up switching your major about your junior year and undergrad and decided audiology is your route and where you need to end up.
[00:07:05] So what was the next step then?
[00:07:08] Rene: Yeah, so what I knew I needed to, to pack my schedule, right. Because now when you're a junior and you're switching majors, I had to take a lot of prerequisites. Um, and so I took like the full 21 credit hours every single semester to make sure I graduated in four years. And one of the things I knew of course, we'd have to go to graduate school at the time.
[00:07:26] That was the master's degree. And so I knew I needed to start doing some volunteer work. Um, which I did anyways, but I hadn't done any in this specific field. So I, um, I did some volunteering work in Michael Dorman’s lab at Arizona state university. Who many of you know is, um, someone who has a long standing career in cochlear implant research.
[00:07:46] He's a speech scientist by training. Um, and I also did some volunteering in Bacon's lab who, um, the late physician, who is a psycho auditory condition who mostly focused on individuals with mild to moderate hearing losses, but very applicable, you know, hearing scientist, um, in the field. And so the interesting thing is, you know, I spent.
[00:08:06] Two semesters working alongside Michael Dorman as an undergrad. And it still didn't occur to me that I want to work in cochlear implant research until after my PhD. So I knew from there, I want to do research. I loved, you know, getting in there and playing around with like, When you form generators and looking at a scopes and checking on stimulate, and it just, I just loved it.
[00:08:27] Um, and so I, uh, did my master's degree audiology at Vanderbilt here in Nashville. Uh, went back to Arizona state, got my PhD, um, in the laboratory of David Bacon. So basic psychoacoustics normal hearing, mild hearing impaired, you know, like I, it was very, um, basic experimental psychology essentially. And then, um, The end of my PhD studies, I was having a conversation with Michael Dorman in the hallway.
[00:08:54] And he mentioned at the time he said, you know, there's this new surgical technique and there's this new implant where they're putting cochlear implants in patients who have. Good, low frequency hearing and they're able to preserve it. And now these people are listening with hearing aids and cochlear implants.
[00:09:11] And it was, again, one of those, like your moments where I knew, of course that's what I want to do. And, um, so I had about six months left in my PhD program. So I was finishing my dissertation, wrote a proposal to, um, look, you know, study these individuals and look at how they integrate electric and acoustic hearing coming from the same year and across ears.
[00:09:32] And, you know, I've never looked. So that was 18 years ago and I am still hooked on this, this topic and, um, just dedicate it to helping people hear better. Combining hearing aids and implants.
[00:09:46] Carrie: Wow. All of your undergrad and a master's experience and the people that you got to study under it really kind of drove you to this research and still involved in.
[00:09:59] And that's why I'm so excited to ask you these questions today, because from a very personal perspective and just getting a cochlear implant in 2019 and being a bi-modal recipient. And I think it's interesting to hear. Yeah. Search and then, uh, kind of reflect on my own personal experiences too, of what you find in your own research.
[00:10:20] And I'm like, yes, that's right. That's what, that's how I feel. So could you just share a little bit for our listeners today? Who might not know? Or can you just defined What a bi-modal, what bi-modal means.
[00:10:35] Rene: Yeah. So, um, by modal, I mean, it's sort of just a made up term, just means two modalities. And so in that particular concept, it typically is referring to individuals who have a hearing aid on one side, a cochlear implant on the other, but because it's just two modalities, technically it could also apply to individuals who have acoustic hearing preservation in the implanted ear and are combining electric and acoustic hearing that way.
[00:10:58] But that's not typically, usually when you see the term bi-modal it's meaning, you know, electric only on one side. Acoustic only on the other.
[00:11:06] Carrie: And so you've said you've been doing this research for about 18 years. And so what have you seen over time from that beginning of the 18 years till now?
[00:11:19] Rene: Oh, it was just so much fun.
[00:11:20] Yeah. So, um, in the beginning, I agree, this predates me a little bit, but I remember when I was a master student at Vanderbilt and we would talk to people who were getting, you know, interested potentially in cochlear implants, which was a very small proportion of our patients at that time. Um, but the advice that was given by most centers at the time was, you know, if you have a hearing aid that you're still wearing on the other side, It's recommended that you stop wearing that because you know, the brain's not going to know what to do with these two very distinctly different signals.
[00:11:51] And we need to really strike them that auditory pathway on the newly implanted side. But people started to learn pretty. Well, I wouldn't say quickly, but you know, over a course of about a decade that there weren't any data that were really driving that clinical recommendation. And so, and a lot of people started to notice, you know, when I wear my hearing aid, I'm actually feeling like I'm hearing better.
[00:12:13] I'm utilizing that more natural sound, quality, the acoustics of, you know, the lower frequency speech that I can't necessarily get from my cochlear implant and, um, the research and bi-modal hearing. And, uh, you know, bi-modal auditory perception really started to explode in the early two thousands. And it was quite clear from that point forward that, of course, this is what we should be recommending, you know, we should absolutely be ensuring our patients are using all of the hearing technology that potentially can improve their outcomes.
[00:12:42] And of course, most of this in the early days was pre bilateral. Um, in fact, I remember in my postdoc, there was talk amongst the lab that, Hey, there's a new bilateral cochlear implant recipient in California. We should try to get them to come into the lab. Like it was, you know, like one in the world kind of thing.
[00:13:01] And, um, and then you'd hear of another and then another, and then, um, It was exciting, but, um, so I got to sort of witness the, you know, the evolution of hearing preservation, cochlear implantation, widespread adoption of bi-modal hearing, as well as the, um, the adoption of bilateral cochlear implants and the transition to that being sort of considered the standard of care.
[00:13:26] Carrie: Yeah, so that I have so many questions, but I guess my first question would be about bi-modal and bilateral. And that what point from a research perspective, a clinic perspective, are you recommending or starting to plant that seed with patients? Okay. Didn't, you know, bi-modal might be your way to go or bilateral might be a better way to go.
[00:13:51] Rene: Yeah. So are we focusing primarily on adults right now? I
[00:13:55] Carrie: would like to start with, let's start with adults.
[00:13:58] Rene: So with adults, obviously, um, it's our goal to always talk about really what's the appropriate or the recommended intervention for each individual ear, right. Because we want to make sure that we're optimizing that hearing for that individual.
[00:14:11] So, um, we typically. From the minute I see them in the cochlear implant clinic, I'm going to assess each year individually, uh, with, you know, air audiometry speech. Audiometry. And then of course, with fitting, you know, the appropriately fitting hearing aids and looking at eight at speech recognition on both sides, as well as in the bilaterally aided condition and right from there, if someone technically meets the criteria for a cochlear implant in each year, we're going to discuss that.
[00:14:37] I'm going to say, you know, to that individual, you know, look, it looks like you really do meet the criteria for both ears. However, we do often recommend unless someone has, you know, profound hearing loss across all frequencies. Um, it has an, or had a very sudden onset. We definitely in the adult population are recommending that people start with a single implant and utilize the bi-modal hearing configuration because there's tremendous amount of benefit.
[00:15:04] Um, as you know, You know, that hearing configuration, having the ability to, uh, combine what you can't get from the implant, with what the implant really does a great job, which is audibility across the entire frequency spectrum. And, you know, the brain is just a remarkable, um, it's just remarkable organ and it has it's, you know, we see this neuroplasticity that happens very rapidly following activation of the device and having.
[00:15:30] Low frequency, more natural sound quality from the hearing aid ear really helps sort of drive their ability to use that new found signal. So that's kind of what we recommend, but we also sort of make sure that they know really from day one, that technically both of your ears are considered candidates for an implant, but we're going to start with this hearing configuration and then we'll readjust, or, you know, kind of reassess in, you know, 3, 6, 12 months.
[00:15:58] Um, and then of course, many of our adult patients retain that bi-modal hearing in fact about 80% of our adult population, at least at Vanderbilt, um, does retain bi-modal hearing. They, they just do so well with that combined configuration. Um, but it's the flip side on the pediatrics, our pediatric population.
[00:16:16] It's more like 80, 85% are bilateral and then the rest are bi-modal.
[00:16:21] Carrie: Okay. So though, a point maybe going back to adults where. Maybe an adult, like after 3, 6, 12 months, do they say, you know, the hearing aid, I take it off and I don't really use it that much. Is that kind of a tipping point where you're like, maybe you might want to consider bilateral cochlear implants.
[00:16:44] Rene: Yeah. So it definitely, I would say that a lot of the times it's patient driven, which isn't necessarily a bad thing, which I'll get to in a moment. But a lot of times I can sort of almost tell what, which path someone's going to go from that one month appointment. So I'll have some people who come in and they immediately go, okay, let's start talking about when we're going to get the second implant.
[00:17:03] You know, they just, they just know like, and these are often people who were very adamantly against it in the preoperative time point. Um, whereas some people will show up, you know, for that one month appointment. And they'll say, you know, I'm just shocked at how well I'm able to, you know, use the information from these two signals.
[00:17:19] You know, on the first day it sort of felt like I was hearing these. It's almost like two different. Uh, you know, completely different sounds and now it sorta sounds more natural. And so those are the people I started to say, okay, they're really adopting this technology. They're doing really well with it.
[00:17:34] We'll continue to assess. And of course, if hearing is lost in the non implanted ear, or if that ear, you know, is the speech perception drops dramatically, we might have a different discussion, but, um, we do tend to find that our patients are. Very, um, they're very good at identifying what they need. Um, in fact, uh, Michael Dorman and I have a paper that we published in 2019.
[00:17:58] Well, we looked at, I mean, close to a hundred people, um, that were broken down into bi-modal adults and bilaterally implanted adults. And we looked at the bi-modal adults and we basically did all of these tests on them. Laboratory-based tests, spatial release from masking speech perception, all these different things, um, in an attempt to try to figure out when would it be best to recommend that someone definitely, you know, pursue that second implant.
[00:18:25] Well, we didn't really find that there was anything dramatically, um, useful, at least not on the clinical measures. We found some, you know, more laboratory-based measures that you use multiple loudspeakers. Um, however, the one thing that was very, very sensitive and, um, was really highly correlated with the laboratory measures was asking him a simple question, which was, do you think you need a second implant?
[00:18:49] Okay. If the patient said yes, I think I do. It was more likely that yeah, they were actually not showing great benefit from that bi-modal configuration. Whereas those that said, no, I think I'm doing well with my current technology. They were absolutely right. So I think that that just kind of really reinforced my, um, what I kind of thought all along.
[00:19:10] But, you know, patients really do know what's best for them, for the most part, and really want to listen to them and take their guidance.
[00:19:18] Carrie: So on the flip side, that thinking about it. Good. And kind of, you said, you know, about 80, 85% bilateral cochlear implants and only about 20% who stay bi- modal. Is there a different, I guess criteria?
[00:19:33] Yeah, a thought process when you're looking at bi-modal versus bilateral for kids. Oh, I
[00:19:39] Rene: love this. Yes, there is. So, as you mentioned with pediatrics, the indications for cochlear implantation are actually quite different than they are for adults. And so on the pediatric side, at least the FDA labeling specifies profound, bilateral sensorineural, hearing loss, um, or severe to profound for children who are two years or older
[00:20:00] So that's in contrast to the labeled indications for adults where both cochlear and Medicare specify, moderate sloping to profound for adult, um, you know, bilateral sensorineural hearing loss. So we're already dealing with a population that has much more severe hearing loss for the most part. Um, on the pediatric side.
[00:20:20] Um, now granted we do get some children that are referred in that are more kind of, non-traditional maybe a little off label, better hearing in the low frequencies. And we're certainly trying to expand that referral base because we know a lot of children in that particular category would do better with a cochlear implant.
[00:20:37] But the reality is it's. Pretty, uh, you know, small proportion of our patient population on for our children receiving implants. So that's one of the reasons that we typically the children that we see are presenting with bilateral severe to profound sensorineural hearing loss, for which we know that bilateral cochlear implants is absolutely going to be, you know, standard of care, giving them the best option for maximizing their auditory potential.
[00:21:01] Carrie: Yeah, that makes, that makes a lot of sense. It'll just be interesting with your research moving forward. And I know we kind of always start with adults and see how they do, and then it kind of trickles down to the pediatric population, but what would this conversation be? Five or 10 years from now when absolutely about pediatrics.
[00:21:20] Yeah, I, I,
[00:21:21] Rene: I really, I, I, one of the big goals of my career is to expand criteria for pediatrics, because again, we, there are, there's a growing literature base of children who are, you know, better than severe to profound in, um, in the implanted ear and who are just, you know, they're deriving tremendous benefit from this cochlear implant.
[00:21:40] And so my goal hopefully is to really, if we can't get the labeled indications changed, if we can get more and more providers, you know, ENT audiology, To refer those children in for an evaluation, because that's the thing. I think a lot of providers are really more reluctant on the pediatric side to recommend someone because they might be getting some benefit from their hearing aids, but maybe it's not going to be the amount of benefit they could get when paired with a cochlear implant
[00:22:07] Carrie: Yeah. So do you see any disadvantages that you found with bi-modal patients or here.
[00:22:17] Rene: Yeah. So there are, there are a few, um, some disadvantages for bi-modal hearing and it's primarily related to more spatial hearing in general. So, you know, I'm, I'm kind of a binaural person. That's the thing I'm really interested in, in my research and the cues of course, that we use to orient, to sounds in our environment, to, you know, for spatial abilities.
[00:22:38] Interaural level difference cues as well as interaural time difference cues. So of course, sounds are hitting our head at various different times from where they were oriented in space and we are primarily using interaural time difference cues for lower frequency sounds and interaural level difference cues for higher frequency sounds.
[00:22:59] Now, the here's the thing though, is that. interaural time differences. We need access to bilateral acoustic hearing to be able to take advantage of those because our nervous system, our neurons have this ability to sort of fire on about the same phase of an incoming stimulus and it's called neural phase locking.
[00:23:17] And that allows our system to basically, um, identify immediately what's the, uh, where the sound originated from. What's the frequency of that sound and our it's just it's like instantaneous. Okay. The sound originated from the right and it was someone. Yelling my name. So immediately when you have bilateral cochlear implants or bi-modal hearing, you don't really have access to the interaural time difference cues because the cochlear implants don't preserve that fine timing information in their envelope based signal process.
[00:23:47] Um, so what they can use is interaural difference cues, which are most robust in the higher frequency region. Now they're present in the lows, but it's, you know, a few DB in magnitude, whereas at four and eight kHz, we're talking like 20 or more DB of a difference across the ears. And so bilateral cochlear implant recipients have access to ILD because they have high frequency audibility in both.
[00:24:13] Yeah. Whereas if you're bi-modal the typical bi-modal patient has, you know, good audibility across all of the frequencies in the implanted ear, but the non implanted ear tends to have a sloping hearing loss for the most part. You know, some people have flat losses, but with those sloping losses, we're just kind of getting audibility in the non implanted ear.
[00:24:34] And so that leaves that individual without, you know, a good ILD, um, sensitivity. And so what we found is that individuals like that do tend to struggle a little bit more in us, you know, localization where a sound's coming from spatial release from masking. Um, as well as in conversations where, you know, this has been a while since we're coming out of a pandemic, but think about being like at a, you know, a holiday party or at a, you know, group dinner.
[00:25:01] This person talks and then someone across the table and the other side interjects, and then this person over here, and you'd have to sort of follow that conversation. Um, that's going to be a little bit more difficult to do in a bi-modal hearing configuration where we don't have access to those high frequencies.
[00:25:17] Um, but you know, the nice thing is we, we know, um, that where we need to kind of sit and orient ourselves in conversations to optimize the hearing abilities that we have. It's just that. It's less of a need to do that when you have bilateral cochlear implants or bilateral acoustic hearing. So, you know, for example, in cases of cochlear implantation with acoustic hearing preservation, which of course is another great love of mine.
[00:25:45] Carrie: Yeah. Well, those are some of the things that you said. I feel like I'm experiencing now as a bi-modal user. And just for example, of like being in a more noisy kind of place. Kind of situation. I noticed that I really have to focus more on, you know, okay. You need to be on my good side. Do I need to really follow the conversation in that respect too?
[00:26:11] And I think what I've noticed. The most is, I feel like I have become more of a unilateral, um, user, because my implant side, like you said, gives great audibility across all of the frequencies. So that seems to be my more, that my stronger ear. But then I love my hearing aid side, but the acoustic aspects that you were talking about, so that natural aspect of speech.
[00:26:37] Um, but yeah, I never before would like tell my husband, like, you need to walk on this side of me, not on this side. And now it's like, he's like, oh wait, like, which side is which side should I be on now? So kind of this whole other evolution, you shouldn't have a conversation that we have to go through.
[00:26:56] Rene: Yeah, that's a great, I love how you brought that in.
[00:26:58] And that's, that's the one thing, you know, we found in this paper from 2018 that, um, we looked at a group of bi-modal adults and a bilaterally implanted adults. Um, they both performed very similarly. It's just that when speech was roped randomly, you know, from like zero or plus, or minus 90, when it was over to the poor ear, which for the most part was the hearing aid ear.
[00:27:19] Right. Our bi-modal participants were at a significant disadvantage, whereas bilaterally implanted adults, it's almost like they didn't have a better ear, you know, so, you know, preferential seating and sort of organizing where I'm going to stand relative to others just is not as much of a concern when you have bilateral.
[00:27:37] Carrie: Yeah. It's like, do you give up something to gain something to trade. Which I thought I would ask? Uh, just another question that has to go along with bi-modal users. Do you feel like programming? Um, the cochlear implant and the hearing aid are the different. Techniques that you utilize, or you have found that help.
[00:28:01] I don't want to say even it out, but kind of, uh, make sure that they compliment each other.
[00:28:07] Rene: Oh, great question. Yeah. For the most part. No. So there's a lot of, um, there's been a few studies that have come out in the last few years that kind of looked at, you know, what's the best way to program the hearing aid for someone who's listening by readily.
[00:28:19] And the reality is there's no real evidence that, you know, for example, NAL and a one versus versus DSL for adults, or it's sort of like, if you can just make sure that you have audibility in the frequency region over which they have the capacity to have audibility. That's going to give them the benefits.
[00:28:38] So that's, you know, I, I sort of, don't worry too much about picking one particular, you know, target. However, one thing we have found and it's in a relative minority of individuals, but we, um, in the lab, we routinely check for cochlear dead regions and then anytime there's acoustic hearing. And so if people are not necessarily familiar with that, it's just, of course, as you know, a region of the cochlea where there's little or no surviving inner hair cells So, um, so basically if you try to provide, you know, acoustic transmission, that range, it's just not gonna make it to, uh, those primary auditory neuron, because there's no inner hair cells, which are the primary afferents, um, in the auditory system.
[00:29:17] So, um, what we have found is that when patients have a region of cochlear dead regions, but yet we still have, you know, aided or we still have unaided audiometric detection there, which is of course, for the most part due to off frequency listening. Because we're just providing a we're driving that basilar membrane, and providing a lot of a high sound level that they can hear on the tip of the tail of that traveling wave.
[00:29:42] Um, but when we, when I see someone who has a very, you know, distinct cochlear dead region, we do start to play around a little bit with maybe restricting the frequency region of the hearing aid ear. Um, and we do have a paper that came out. I don't know about five or six years ago where we looked at a group of people.
[00:29:58] And when there were a cochlear, dead regions, and we restricted the frequency region, we did see a significant improvement in their ability to combine across those two ears. Whereas if the patient didn't have a dead region, And where you restricted the frequency region. They didn't show a benefit.
[00:30:16] And in some cases they showed a detriment in their performance. So I don't recommend this as kind of a blanket thing that we do for everybody. You know, like for example, all right. Anybody who has a threshold of 80 dBHL. Don't even try to amplify it. We don't do that. So we look and see really, is there a region where there's little or no surviving inner hair cells?
[00:30:36] And if so, we do experiment with restricting that range. And I've seen in some cases where you see acute benefits, you know, so we'll restrict the hearing aid, um, frequency response, and then put them back in the sound booth and their performance goes up dramatically. We typically, you know, we don't see that all the time.
[00:30:55] Um, but often in those cases we also see dramatic reports of improved sound quality. So that's something that I think could really be value added in our clinical audiology practices.
[00:31:07] Carrie: Yeah. I was just always curious. Cause we were playing around with my different hearing aid settings too. Just to see if there is one that kind of complemented or I felt like it complimented better than the other and it was just, just trial and error.
[00:31:24] Okay.
[00:31:25] Rene: Cause I really love to hear if there was anything specific that you felt really worked well in that configuration.
[00:31:31] Carrie: Yeah. No, and I. My, I don't want to say problem, but the, you know, technology and, and growing up with hearing loss, I mean, I was initially with analog power hearing aids, so I've always been a very much of a, more of a.
[00:31:48] peak Clipping, um, analog music. So like my switch to digital hearing games was very hard. So I don't know. I think I make sense of a lot of distortion of information in order to have more clear signal that if somebody was getting hearing aids today for the first time you would program it a lot differently.
[00:32:10] Sure. Right. Yes. So, so kind of going, um, back just a little bit. I would love to hear. More about your research and your experience with hearing preservation. Yeah. So
[00:32:26] Rene: I, this is something I just feel so strongly about and love so much. And, um, so I, thankfully, you know, I'm at a center where all of our surgeons really approach every surgery as if it were hearing preservation surgery.
[00:32:40] So, I mean, the goal of that of course is minimally traumatic, you know, surgical approach. Um, for example, limited drilling and. So using the round window, if at all possible for electrode, insertion, um, and, uh, you know, really kind of picking and choosing the, the cochlear implant electro array that you would use based on the patient's own anatomy and approach.
[00:33:01] So, um, so thankfully, so I remember back when I first started my post-doc in December of 2003, you know, the, the men or people. In the world, but here in preservation, I mean, you could probably count it on, you know, your hands. Um, and at that, at that time, most of them were in Europe where, you know, they weren't sort of regulated by, um, FDA.
[00:33:23] They had their own guidelines, they could do their own thing. Um, and we have a handful in the U S particularly those coming out of the university of Iowa because they had the hybrid clinical trial there. And, um, So I went from seeing, you know, hearing preservation patients who were, you know, very, very few and far between and hearing preservation rates being pretty low, you know, because this was a new technique and this was a new way to think about, um, cochlear implantation and, and, you know, audiologic, and otologic management of our patients to the point that now we've looked and we're getting, like, seeing that, you know, up to 90 to 95% of people who have hearing going into surgery, Do you have some degree of preservation postoperatively now not everybody's going to have usable or functional acoustic hearing preservation, but it is just so exciting to see that, you know, the, the electrode arrays are less traumatic.
[00:34:15] The surgeon, you know, the surgical techniques are improving. Um, we're learning more about the use of steroids for anti-inflammatory anti-inflammatory responses and, and potentially helping. You know, that preservation and the benefits that we see from just combining that acoustic hearing in the implanted ears.
[00:34:34] And I say yours because we know about, you know, more and more people are getting two implants and have acoustic hearing preservation in both ears, but it is just such an exciting thing. And to see that all three of the FDA approved systems have integrated EAS technology. Yeah, yes. Technology, you know, which allows like a hearing aid and an implant processor in one, it's just something I would have never, ever, you know, even dreamed of when I first started working in this field, um, you know, we used to split them with its along with the behind the ear, sound processors and talk about cumbersome.
[00:35:08] Um, and, and now it's just, you know, a Ric system or an ear mold on the middle system. There you go off you go. It's it's just, I just love it.
[00:35:19] Carrie: Yeah, it's amazing. And then your point about, from a patient perspective, I love the fact that. Even though it's not per se usable speech hearing, but to have awareness of sound when I don't have a device on is really powerful, like at night and you know, I wouldn't, I can still hear the dog bark, so it's different low-frequency information.
[00:35:45] And I know that's going to be different depending on the amount of hearing that is preserved, but to have that awareness is kind of. I guess, I don't know. It just. More like a safety net for
[00:35:58] Rene: me oh, absolutely. That's I mean, that's a big deal and I can understand, especially when you go for example, to bilateral, right.
[00:36:06] Because one of the things, you know, I did mention we're up to 99 to 95% of people being able to have hearing preservation, but that's not necessarily for the longterm and it's not something that we can guarantee, you know, everyone's body and physiology has a different sort of. Uh, an inflammation, response to surgical trauma and, and, um, and that, and so we just can't, you know, reliably predict who's going to have hearing preservation.
[00:36:31] And like you said, I mean, there's definitely a safety component and, and just sort of peace of mind in general, right? Like you said, you take your processor off, you can put earbuds in, you can hear your dog barking, you can. It's just, you know, you don't have to necessarily rely on just one side and make sure you hear one.
[00:36:47] Cause you got hearing in both years. So I think that's, you know, it's something that we. Um, I definitely appreciate when we're making these, you know, clinical recommendations to our patients and something that I know myself I would want to have as well.
[00:36:59] Carrie: Yeah. I mean, that was certainly something that when I was making the decision was a plus, um, knowing that, Hey, there's a possibility that you can still have hearing in that ear.
[00:37:11] And it helped a lot with that decision too. And yeah. Yeah. So, um, one other question that I kind of had, we were talking at the beginning about how your brain is so amazing and it can integrate that acoustic signal on that electric signal. Is there anything that you, or at Vanderbilt that you are recommending and for your patients to help drive that integration a little bit quicker, uh, so that your brain adapts to those bi-modal signals?
[00:37:44] Ah,
[00:37:45] Rene: great question. Yeah. So there is actually, and it's nothing that's particularly exciting or fancy it's, um, it's just wearing the devices. And so, um, one of my colleagues, uh, Dr. Jordan Holder, who's now, um, on faculty at Vanderbilt, um, for her dissertation, she was looking at. Basically the, the causal, the potential of a causal relationship between cochlear implant, wear time, which we get from data logging with our, with our cochlear implant systems and how much benefit one would get on measures of speech understanding.
[00:38:17] And for years, you know, we, you know, as audiologists, we've told people for years, you know, you have to wear your, your devices. That's the only way you're going to get better. Eyes open ears on that sort of thing. Um, but we didn't, you know, it made sense at face value, but we didn't necessarily have evidence to support that.
[00:38:33] And then about 20 years ago, uh, hearing aids came out with data logging capabilities, and we realized that people weren't wearing the hearing aids as much as they had, you know, suggested they had been. Um, and then later on, we got data logging in, in cochlear implants and then a number of studies have come out as you know, that have shown this correlation between.
[00:38:52] You know, average daily wear time and auditory performance, but we never really knew, is this a, is this a chicken or an egg thing? You know, is it something like someone who gets their implant and does well, of course they're going to wear their implant longer or is it really, they wore their implant longer and they're doing well.
[00:39:08] So, um, as part of Jordan's dissertation, she, um, brought in a group of adults who had all been using their device for a minimum of. 12 months. So these are people, you know, experienced cochlear implant users, and they all had to be wearing their devices less than 10 hours a day, so that there was room to sort of improve, right?
[00:39:26] Because if they came in wearing the device 16 hours a day, we wouldn't want them to sacrifice sleep time, you know, just to improve their, or increase the wear time. So they were all instructed to wear their cochlear im;ant as much as possible. But the goal was for them to increase their daily wear time by a minimum of one hour.
[00:39:45] Minimum. So, um, with these 20 people, uh, she did find a significant correlation. And in fact, she saw that for every one hour you can improve or increase your daily wear time that translates it to a seven percentage point improvement for sentence recognition in noise. Which is the most difficult situation that we have.
[00:40:06] Right. So to put that into a little bit more clarity, so let's assume that someone came in wearing their implant 10 hours a day, and they were able to increase to 15 hours a day, which would be close to, you know, kind of all, all day, um, that person would be expected to improve. 35 percentage points for speech recognition in noise, which is quite dramatic.
[00:40:29] And it was also shown that it, we believe anyways that the, you know, the, the driving mechanistic factor might be their ability to, um, parse out the individual frequency components of that signal and something that's happening from like a neuroplastic, you know, compensatory, neuroplastic perspective. So, um, so Jordan Holder's going a little bit more down that road.
[00:40:52] Kind of, you know, investigating a little bit more of the causal link and I'm going in a slightly different direction and really trying to describe those neuroplastic changes that are happening from a audio and visual perspective, following cochlear implants, uh, and we're using, um, a relatively newer tool functional near infrared spectroscopy or , uh, to look at this and, um, pediatric and adult cochlear implant patient.
[00:41:17] So you have to stay tuned, but yeah. Um, where it gets your, get your hearing aids, get your cochlear implants and wear them as much as possible.
[00:41:26] Carrie: And do you ever recommend, like, even just for a therapy kind of perspective, just listening with the cochlear implant, just so that your brain is like, okay, this is what that signal is.
[00:41:37] Rene: Absolutely. Yeah. So this is one of the things another where we recommend, you know, auditory training or rehab at could, because at face value, it makes sense. Um, but similarly, we don't have a lot of, um, evidence in the peer reviewed literature anyways, that is really, you know, rigorously investigated the effectiveness.
[00:41:57] A specific or type of auditory training, at least in the adult population. Now, of course, that doesn't mean it's not a good thing to do, but I definitely think we as audiologists and hearing scientists and otologist, we really could stand to benefit from, you know, rigorous prospective studies that are looking at the effectiveness of various different types of auditory training, uh, dosage.
[00:42:20] So is once a day for an hour. Good enough. Do you need more maybe? Just a few hours a week is enough. Um, and really to identify because, um, you know, in many other areas of the world, our auditory training is just considered a given when, you know, even when adults get cochlear implants and in the US we don't really necessarily do that.
[00:42:40] For better or worse, but, um, you know, I would love to see the outcomes of, of some studies that have looked at that because it's, you know, I can say that anecdotally, at least the patients of mine who commit to doing this do tend to be my better performing patients. But again, is it a chicken or egg thing they're doing better?
[00:42:58] So they're motivated to do these exercises versus those who are struggling and they say, yeah, forget it. So,
[00:43:05] Carrie: yeah. Yeah. From my personal perspective, I think we, we definitely need more work in that area. And I think for me, at least, I was just blessed that I had a therapist who was one of my professors when I was in grad school.
[00:43:22] And I have kept in touch with her, but she was an auditory verbal therapist. So she said I would love to work with you. And so her name was Dr. Denise Wray. And so we, we have just been meeting like on kind of a weekly or biweekly every other week basis. But I think from a patient perspective, especially at the beginning, it was.
[00:43:46] Almost that coaching perspective of being like, okay, she's documenting this and she's seeing the little small changes. Again, motivated me to be like, okay, I'm going to continue this on my own. So that next time I see you, I might perform better. So it was almost for me that coaching auditory therapy was a huge component of me kind of mixing, you know, getting the signals together.
[00:44:15] That's the other thing. Yeah. The other thing that I love to do. And I just coined it, my, my own name and I call it bi-modal switching. So I like to sit outside and just kind of be mindful of what's going on in the environment and just flipping my magnet off my head and listening and just kind of taking them.
[00:44:38] You know, what's happening in the environment and I'm putting the magnet back on and seeing what sounds end up coming in. And so I don't know, it just, for example, like sitting on the porch and hearing the wind chime when I take the magnet off, the wind chime was gone when I put it back on, it comes back.
[00:44:57] So it just kind of brings in. Well, it makes you aware of what you're listening to with your hearing aid only, then what you gain with your cochlear implant in that situation. So,
[00:45:11] Rene: yeah, I mean, that's like, you're, you've sort of inventing your own like perceptual training, um, types of paradigm, right.
[00:45:17] Where you're sort of. Okay. I'm going to teach my brain that this is what I gain when I add the implant to my acoustic hearing. I love that. Is that something that you would recommend to, to patients who are, um, pursuing cochlear implantation?
[00:45:32] Carrie: I would. I call it bi-modal switching and I think it just lets you.
[00:45:38] Experience everything that you haven't heard and jotting down those different sounds that you hear and, and, um, experience on a, on a daily basis. So another motivation tool, I think
[00:45:52] Rene: too. That's great. Yeah, I might, I will, of course cite you on that, but then encourage my patients to also journal, you know, to say like, what is the additional added benefit that you get?
[00:46:02] Because you know, it really makes them more mindful of the process.
[00:46:06] Carrie: Exactly. So this was an amazing conversation. I'm so glad that we're able to have this today. Is there anything that I didn't ask you that you're like, I want to make sure that listeners hear about this.
[00:46:20] Rene: Yeah. So the only thing I think I would want to just say is that, um, we are still at, you know, on the adult side, we're still only getting about 5% of people who actually could benefit from a cochlear implant are getting them.
[00:46:33] And, um, you know, we just, as we have to do better at getting more people in and taking advantage of this really life-changing technology that could really benefit another thing. When we tend to see at least on the adult side, when someone actually initially presents for a cochlear implant evaluation, for the most part on average, that patient has been a candidate for 10 to 12 years.
[00:46:55] So again, you know, we get this one shot to do this, and I really want this. Take advantage of this and in getting these referrals in much, much more earlier than they're doing right now. Um, the second thing of course is that I want to see more and more referrals of people who have, you know, residual hearing in the lower frequency region, because as you said, you know, we can.
[00:47:16] We are actually able to preserve acoustic hearing, um, in most cases, most cases. And even if we don't, which of course is not our goal, but you can still combine that electric and acoustic hearing across ears in a bi-modal configuration. And I can tell you that I have not met a single person who has said, well, I really regret getting this.
[00:47:35] You know, it's almost like as soon as they get it, they say, why didn't I. Five 10 years earlier. So that would be my recommendation. Um, and, and then third, let's get more and more children in the door who have maybe these non-traditional, you know, hearing losses, non-traditional cochlear implant candidates. If a child is struggling to, um, for, you know, with socialization in, in school and, and understanding and various different, um, listening environments dependent on their FM or their, you know, remote microphone system, uh, and really struggling.
[00:48:05] Um, it has speech production, um, delay. I say that it's at least worth a referral. We might not necessarily recommend a cochlear implant to start, but it's, it's getting that conversation started with that family so that we can really be helping more and more people than we are.
[00:48:21] Carrie: Yeah, no, those are all great ending points.
[00:48:23] And I agree 100% that the referral process shouldn't be thought of as a last resort. And I think that's where a lot of our, especially in the adult population, if they're seeing an audiologist who is fitting for their hearing aids, maybe that audiologists doesn’t realize that the cochlear implant process continues to, uh, I guess candidacy continues to change and.
[00:48:48] It takes, I mean, I know it takes a while to make that decision. So if we don't start planting the seeds a lot earlier and having that conversation a lot earlier than that, that delays the process too, because from a patient perspective, you still need to go through all of the emotional journey that it takes to get to that decision-making process.
[00:49:08] Rene: Absolutely. I, you know, I was encouraged from the moment hearing loss is diagnosed. Start having the conversation. This is the hearing healthcare continuum. We start with hearing aids. We have additional, you know, um, FM remote microphone systems. We might transition to various different types of auditory implants.
[00:49:24] Like you said, it's not a failure. It's not a last resort. It's just one of the options on that continuum.
[00:49:31] Carrie: Well, thank you Rene for coming onto the empowEAR Audiology Podcast today. It was a great conversation and I really appreciate your time today. Thank you.
[00:49:42] Announcer: This has been a production of the 3C Digital Media Network. .

Episode 22: empowEAR Audiology - HearStrong: Juliana and Andrew Herbert

Announcer: Welcome to Episode 22 of empowEAR Audiology with Dr. Carrie Spangler.
[00:00:16] Carrie: Welcome to the empowEAR Audiology Podcast which is part of the 3C Digital Media Network. My name is Dr. Carrie Spangler, and I am your host. I am a passionate audiologist with a lifelong journey of living with hearing challenges and this vibrant hearing world. This podcast is for professionals, parents, individuals with hearing challenges and those who want to be inspired.
[00:00:45] Thank you for listening, and I hope you will subscribe and invite others to listen and leave me a positive review. I also wanted to invite all of you to visit and engage in the conversation on the empowEAR Audiology Facebook group. Transcripts for each episode can be found at www.3digital media network that come under the empowEAR Audiology Podcast tab.
[00:01:18] Now let's get started with today's episode. All right. Um, I am excited today to welcome two guests to the empowEAR Audiology Podcast. Today I have Juliana Hebert and Andrew Hebert from HearStrong foundation. And I'm just going to share a little bit about the HearSTrong foundation, and then I'm going to let them share a little bit about themselves.
[00:01:44] So HearStrong was founded in 2013 with a goal of inspiring. Hearing healthcare awareness movement, an estimated 48 million Americans experience, you know, in last and 80% of these individuals, let it go unaddressed. This could be due to barriers such as social stigmas, financial difficulties, lack of awareness and resources and monies and response to this need.
[00:02:12] HearStrong recognizing and sharing the stories that we might talk about. People. With hearing loss and an effort to empower and inspire others to take control of their hearing, help. These individuals are known as Hearstrong champion. And today I'm really excited to have Juliana who is the program director.
[00:02:34] for Hearstrong and Andrew, the chair of the board of directors with me today to share a little bit about themselves and the HearSTrong foundation. So welcome both of
[00:02:45] Andrew: you. Yes.
[00:02:50] Carrie: I don't know who wants to start. Can you just share a little bit about yourself and how you got invested in the HearStrong foundation?
[00:03:05] Julianna: So, um, let's see. So my background was, I went to undergrad for speech therapy and audiology. Um, and then later on. I went to get my master's in teaching and special ed. Um, and the speech therapy audiology component of my, uh, educational background was due to my father who had hearing loss. So growing up, my dad always tried to wear hearing aids.
[00:03:32] He lost his hearing at a young age from chickenpox, and he was born in 1945. So at that point, It wasn't very, uh, well welcomed, I guess, having a hearing loss. Um, and he was treated, you know, in, in bad ways, I guess, through the educational system. And he always thought that his hearing loss kind of put him down and he wasn't always open to wearing hearing aids.
[00:03:59] Um, But nevertheless, you've kind of persisted. He got, he went through school education, he did great things. He was an educator himself. Um, and it wasn't until recently, um, getting involved with Hearstrong, that I got to hear a little bit more about his story about when talking to him and talking to my mom and just hearing about kind of all the struggles that he went through, but he never led it.
[00:04:24] Kind of keep him back or anything like that. Um, and now he wears hearing aids. He loves them. He loves them. He can stream all of his show. It was through that. I can talk on the phone through them, so he loves them. Um, but he was one of the main reasons why I went into speech therapy and audiology. Um, and then later on, in special education, I was able to see within the schools, um, some children with hearing loss with the FM systems and all that.
[00:04:50] So it really opened my eyes. So in that there, I dunno, components of what else I could do. Um, Andrew was working with EarQ, um, and your cute, the founder of EarQ decided to found Hearstrong. And I decided to get involved and asked Andrew, you know, do they need any help or anything? And, um, I signed on in 2019.
[00:05:16] Um, and I've been with HearStrong. Um, now I'm helping with all the different programs and working on our fundraising campaigns. Just trying to get the word out there and helping as many individuals get fit with now through some of our programs as possible.
[00:05:33] Carrie: Wow. That's great that you brought your undergraduate speech and hearing and your family experiences and then your special ed experience all into one place.
[00:05:42] So what a great background to bring the, to here, Andrew? How did you get involved?
[00:05:48] Andrew: Yeah, so, um, I was less intentional with getting into the door into the audiology industry. Um, you know, I was looking after I graduated with my undergrad, I went to school for food and nutrition. So I was really into like, you know, healthy lifestyles and, um, it, I wasn't sure what I wanted to do.
[00:06:11] Um, but I was looking at different jobs in the market at the time. Uh, this was back in 2008. Um, and it was looking into a lot of pharmaceutical medical device sales, uh, Juliana. And I worked together back then as well. Uh, so she definitely had an influence and, uh, along my career search, I started interviewing at various companies, you know, the, the companies that I've just mentioned as well as this small company called EarQ
[00:06:38] Um, and you know, I got several job offers, uh, and I ultimately decided to go with EarZ. Um, one Juliana said, Hey, it's a great industry. She told me a lot about it. And it was really important to me that whatever I was going to do was going to have a positive impact on individual's lives. And, you know, based off of what she was telling me, it sounded if I got into that field, there would be something there.
[00:07:05] Um, and to, you know, it just really loved the company culture and the mission of the organization to help audiology practices and hearing practices in general succeed, uh, and educate more people about hearing healthcare and ultimately get more patients connected to practices. Um, so I started with the company right at the beginning of the national expansion.
[00:07:28] It was really fortunate timing, uh, ended up growing as the company grew, uh, was fortunate enough to grow into be the organization's president, um, and, uh, and had a lot of fun with that. We were working with independent practices, just helping them to run a more efficient practice overall and really take a look at their marketing efforts, uh, in, you know, more of a light of patient education.
[00:07:56] And how do we adjust, um, you know, educate more people on the importance of hearing healthcare and then motivate them to come into the practices. So, um, we learned a lot while we were doing that and, and had a lot of fun. Um, and ultimately in that is along the way, the journey of creating EarQ, which grew to this 1500, you know, practice location, distribution network, um, here's Hearstrong was created because you know, the, the focus on, you know, we, we saw the needs.
[00:08:28] Um, for more education out there and also just changing the dynamic around the conversation of hearing loss, um, you know, hearing just saying that it's like, you know, it comes across as a negative and in some ways, but it's really not. Uh, it's just, you know, it's just like somebody that has to wear glasses, but somebody wearing hearing aids to help them hear altogether.
[00:08:49] Uh, and we really wanted to redefine what it meant to do something about hearing loss. So we. We got this idea that, Hey, why don't we start telling people stories? Let's, let's talk about, you know, the folks that are doing something about their hearing healthcare and talk about the amazing things that they've done and accomplished with their lives.
[00:09:08] Uh, and that's where, you know where Hearstrong. Started to start it from a, it's just this idea of, Hey, why don't we tell more people's stories and start to change the conversation around, uh, hearing healthcare in general? Um, you know, it morphed into like really big thing. All of a sudden, uh, Ed was extremely passionate about it.
[00:09:29] Um, you know, linked up with, uh, one of our other board members, Brian McCaskey, uh, of the McCaskey family that owns the Chicago Bears. Um, and, you know, we started to find other individuals that were passionate about the same cause. And I started to really just snowball. So we ended up, you know, we've, we've grown over 200 champions that we've recognized.
[00:09:54] Uh, the programs are expanding to more directly help, uh, individuals with hearing loss. And Juliana is way better at talking about some of that stuff than I am. So I'll let her do that later on. Um, but it's just been a really cool experience.
[00:10:10] Carrie: Yeah, no, I think your, the idea of storytelling is so powerful and there's so much research about how storytelling can be so positive and it really sticks with you.
[00:10:22] Like we can talk about what 48 million Americans experience hearing loss, but when you share a story, it really that's where that emotion really sticks with people. And we can really have that positive spin on it that you were talking about. So you shared a little bit about how HearStrong got started. Is there anything else you want to add to how that started?
[00:10:46] So it was really what it was like the nonprofit arm or a 501c3 of EarQ. Is that correct?
[00:10:55] Andrew: Uh, it was always a separate organization, but EarQ is definitely driving it. So the staff members of your key, we're putting together a lot of the materials that we were creating and helped us create, you know, websites and they still do today.
[00:11:09] We're really thankful for everything that EarQ provides. Um, but, uh, yeah, so it was, uh, there were, there were technically separate, but a lot of the same people were working on the materials and everything like that. Um, so it was a. It was, uh, it was a great effort and I like it. One of the things I really loved about it is it helped reconnect the staff to like what we're doing and like the people that we're impacting.
[00:11:36] You know, we obviously had a for-profit business that had great intentions, but it's a traditional business. So, um, you know, you have the for-profit side of it, but the non-profit non-for-profit allowed us to really focus on, you know, what it is that we were ultimately doing, which was helping people, you know, improve people's lives.
[00:11:56] Carrie: So you guys have both been with HearStrong for a few years now. So what are your exact roles, Juliana, what's your exact role, if you would have to define
[00:12:08] Julianna: it? So there's only really only 2 employees for HearStrong it's myself and my, um, and my other employee, which is Scarlett. Um, and she does like all the social media and she does a lot of the stuff behind the scenes, which we both do.
[00:12:24] Um, We kind of run the day-to-day operations. I communicate a lot with the champions as she, as the shape. Um, but I reached out to a lot of providers. Um, I work with other nonprofits, um, to match up people who are in need of hearing healthcare and don't know how to access it. Um, we try to match them up and help in any way we can.
[00:12:44] Um, it's just the day to day operations and just trying to work on fundraising, trying to, um, Get applications in for either HearStrong champions or through our pay it forward program, or people just reaching out in general, um, which we've seen an uptick recently of, you know, I need hearing aids. I have a hearing loss.
[00:13:06] I can't afford them. I don't know where to go. Where do I start? So it's kind of connecting those dots and seeing in all of our power, how we can possibly help them. Um, just cause when you hit someone that reaches out to, you know, like what you're saying with storytelling. They put it all out there for you and you know, all of their troubles and everything that's going on and why they're in this position.
[00:13:30] And it's hard to just not say like, yes, let's help you. So that's what we've been doing a lot lately is just trying to help those individuals were really a need. Um, and we're, so it's been a lot of children lately. Um, families reaching out to us for that help. So. That's what I do most of the time each day is just the daily day to day, like emails, communication with providers, families, and other nonprofits.
[00:14:01] Um, and just trying to help people. Yeah. So I love it. It's. The
[00:14:07] Carrie: sounds very rewarding
[00:14:10] Julianna: Yeah.
[00:14:12] Carrie: So Andrew, what's your main role?
[00:14:16] Andrew: So I, I get the fancier title than Juliana as the chairman of the board. But, uh, I have to say she's the one that just drives the organization forward. I mean like, and she inspires me to continue working as the chair.
[00:14:31] Um, you know, I see her. 10 o'clock at night emailing patients or emailing providers and trying to connect people and it put all this together and it's just truly inspiring. I mean, it's amazing what she did. Um, but you know, as, as the chair of the board, I help organize the, the, uh, board meetings as well as, uh, we're looking to expand the board, uh, as we're looking to grow as an organization and get prepared for that next level.
[00:15:03] Uh, so it's starting to bring in some expertise from different areas. Uh, and you know, ultimately, you know, do some networking and helping out with some of the fundraising side of things. So, uh, it's, it's really rewarding when I get to hear the stories. Um, but it's, it's, it's been a lot of fun.
[00:15:20] Carrie: Oh, that sounds exciting about the growth too.
[00:15:24] It seems like. Yeah. I think HearStrong is built around your champions. So could you share a little bit more about how champions become champions? Like how are they nominated and selected and celebrated?
[00:15:42] Julianna: Um, yeah. Do you want it to start into that ? Had the process all began.
[00:15:47] Andrew: Yeah. I mean, like, uh, the process began at first.
[00:15:50] I mean, when we didn't have, uh, you know, a lot of recognition and people didn't know who you were, we were doing a lot of outreach. So it was about, you know, just, we would scan the web. We would look at, uh, you know, Google alerts and hopefully get some good stories and then we'd contact people and tell them about what we were doing and talk about amplifying their message and, and all of that.
[00:16:13] So there was a ton of work that got put into. Um, it's evolved now where, you know, we start to have some inbound, um, uh, re uh, people being, um, nominated to be HearStrong champions. Um, but, uh, you know, honestly going through some of those, the stories are, you know, that's the, one of the favorite parts of being with the organization is just being able to see them for the first time.
[00:16:38] Um, but Juliana can talk more about what we're up to.
[00:16:42] Julianna: Um, so yeah, like Andrew was saying, now we have a lot of people that are reaching out to us, you know, on our web page, we have forms where, you know, anybody can nominate someone that they know who has a hearing loss and share their story with us. Um, and you know, for the most part, you know, in terms of selecting champions, it's we really select everybody because all of the stories are so, um, Interesting different, um, empowering in their own way.
[00:17:10] Um, just to kind of see all the different backstories of individuals and they range in ages from young children to older adults. Um, so I think in that sense, it kind of gives a different highlight too. I think the stigma is only affects people who, old age, like hearing when you're older. Our organization highlights.
[00:17:35] No, it affects everybody from birth to 99 years. You know, it, it affects everybody. We share all those stories. Um, and yeah, the stories are great. And the people that nominate the individuals, um, they don't always tell the person that they're nominating them. So then we kind of get to surprise that person like, oh, you know, so-and-so nominated you.
[00:17:57] And this is what they said about you. Some of the times when people are like, oh my gosh, okay. I wouldn't think of myself as being nominated for something and they're, you know, they're honored and they're just so happy. Um, so it is wonderful. And, you know, from those stories, we gather all the information and we send out a questionnaire to the champion and then we write up like a little bio to kind of encapsulate their whole story and who they are and what they're doing.
[00:18:24] Um, what their plans are. Um, so we put that on our website and we put it on our social media platforms as well. Um, and then, you know, in honoring them prior to COVID, we would have in-person events. So we would, you know, do events and we would partner sometimes with EarQ, um, and have attendees time.
[00:18:46] And we would have them come up to the stage and we would, you know, tell them everybody about them and what their story was, and then honor them. Giving them a metal, plaque and making them like a HearStrong champion. Um, obviously that is changed. So being married to Andrew, he and I were kind of stuck in the house together, uh, with COVID and we were trying to.
[00:19:08] Put our brains together, you know, saying like, what do we do now? You know, we can't have in-person events and then zoom, that was like all the rage, everything. So we decided, you know what? We have these kits that we were trying to get people to do their own ceremonies at home if we couldn't have an event.
[00:19:28] So we wanted everybody to have a ceremony and we thought, you know what? We have all of these kits that we just had made. You know, what, why don't we do virtual ceremonies and we'll send out a zoom link and we'll just see how it goes. And Andrew and I will kind of moderate and we're both in the same house, so it's easy to do.
[00:19:46] And it kind of took off and it's been a lot of fun, just Andrew and I teaming up and getting to talk with champions as well as the people or the individuals who nominated them. So it's been a great experience. Um, so that's how we're kind of. Highlighting and celebrating individuals now. Um, and I don't know if we're actually going to move away from it because it's been so nice.
[00:20:08] Um, because there, in some sense, you know, everybody gets their own ceremony, um, that we get to then push out on our social media platforms and share. And, um, yeah, it's been really nice.
[00:20:20] Carrie: That's awesome. I know just from personal experience of being nominated, um, said Derek Houston, who is a colleague of mine that is at Ohio state University.
[00:20:33] He nominated me and I was so surprised too. When I found out I was like, wow, it was just nice. As I think, as an individual with hearing loss or hearing challenges, I don't really know. I don't always think about my story and then have the opportunity to share it and know that maybe someone else will be inspired by just everyday life.
[00:20:59] And this is what my journey is like. And hopefully. Uh, what you all said, you know, breaking down that stigma of having a hearing loss and wearing devices and it's okay. Um, but we need, I think the nomination process is a great surprise for the champion too. Yeah. And you said you have now was that over 200 champions?
[00:21:26] Julianna: Yeah. So as of today, I, I double check. We have 233 champions. So
[00:21:34] Carrie: you asked who they US or all over. Um,
[00:21:39] Julianna: I have a couple in other countries, primarily United States, but we have a couple international, there's
[00:21:46] Andrew: a couple of international ones. I think we got a rugby player, uh, that was international. Um, maybe. Yeah.
[00:21:53] Maybe a singer too. Um, but the majority are here in the US yeah.
[00:21:58] Carrie: Do you, either of, you have like a favorite champion story that sticks out, I mean, there's 233, but is there anyone that, or a couple that stick out to you?
[00:22:12] Andrew: That's a really tough question just because so many of them do, but I guess I can talk about one that like personally impacted me.
[00:22:20] Um, So this was early on in Hearstrong. When we were doing a lot of our events, I was with EarQ a, we were having a lot of events where we would get. Uh, like 90, a hundred, uh, audiologists together, hearing instrument specialists talk about, you know, you know, programs that EarQ was offering or the manufacturers would also, you know, do some manufacturer product training.
[00:22:48] Uh, and we started doing Hearstrong ceremonies at these events. Uh, this one happened to be at the Oticon headquarters. Um, and I, it was. It was earlier on in my career. So like I was, I would just started getting really into public speaking, like in front of like an, a group of like 90 or a hundred people.
[00:23:09] And I remember I had to give some presentations for that event and that was like a nerve wracking for me. I had to prepare a lot of practice in my room and hope that everything was going to go. Uh, cause I don't think it came as natural to me as I would have hoped. Um, but I, so I remember being nervous about all those presentations that I had to give.
[00:23:31] And then the event was almost done. We had our HearStrong ceremony to go. And this young man, Elliot Gross, who he must've been 13 or 14 years old, I showed up to because he was going to be recognized as a Hearstrong. Uh, and he showed up with his electric guitar, which was just really cool. Um, so I didn't host that ceremony.
[00:23:56] I got to sit on the sidelines and watch it. Um, but why it impressed me so much is like I was kind of this business executive that was nervous to talk in front of this group of people. And Elliott shows up this 14 year old kid walking in an auditorium full of strangers with all the confidence in the world, brings his guitar that nobody was even expecting to happen, plugs in, into an amp and just starts, you know, rocking out in front of this group.
[00:24:26] And has everybody just like in awe at his talent? And then we got to hear his story. And I just remember saying like, oh my gosh, that's so cool. If he can have that level of confidence, I can too, uh, so like, you know, he, like, he was inspiring to me and like, I definitely carried that with me when, you know, I've had to do so many presentations and public speaking events over the years and everything like that, I think.
[00:24:53] But he really had a significant impact on me at that event. And it was just really cool to see him. He was a great guitar player, too. Super talented guy. I wonder what he's doing today. It's just, you're asking that question. I want to look him up cause he's probably doing some really cool stuff.
[00:25:13] Carrie: Yeah. He's probably some famous musician somewhere, but think about how that impacted you and then all of the professionals who were in that room with you and the impact that it had on them and probably, yeah.
[00:25:30] As a professional thinking, this is why I do what I do. When you see that who HearStrong story and that here, Hearchampion. Juliana. Do you have, uh, anything that impacted you? It doesn't have to be a favorite, but maybe something that impacted you
[00:25:48] Julianna: there's been so many. Um, I mean, there was one audiologist that we did our first virtual, Hearstrong champion ceremony for, um, and she was in, she became an audiologist only after finding out that she had hearing loss.
[00:26:04] So she went through. Until she was in college with hearing loss and it totally went undetected because I get stuck with me is because she did well in school that she kind of fell through the cracks because she was told like, oh, well, if you weren't doing well in school, maybe you would need hearing aids or maybe we would have done something more, but you were doing well in school.
[00:26:26] You were fine. And the fact that she made it all the way through, and I think she was going to major, um, in, I think like opera singing or theater, I think she was saying, um, and she had a severe hearing loss and then she was in a class and I think one of her friends, um, did a hearing tests? And she was like, oh my God, And so she decided to take the path of being an audiologist.
[00:26:50] And I loved talking to her to hear that she, um, is a true advocate for patients because she tries out all the hearing aids prior to fitting her patients with her so she can figure it out. And, um, and she gets back. So she stood out to me, just the fact that, you know, here's. I don't know, this is a girl that went through school this entire time had hearing loss and no one did anything about it.
[00:27:19] And then she's now taken upon herself as her profession to help people. Um, and then the other one that stands out is when I first started, um, it was this young girl. And I just started HearStrong, or we're looking at stories of, you know, nominating through HearStrong champions and these two little girls, um, we're hearing loss, but their older sister decided to start their own nonprofit called lemonades.
[00:27:44] Um, and the older sister. She decided to sell stuff, design these lemons and sell them for money. She would ship them out. And the money that she made, she would help other children get hearing aids because she realized when her sisters were diagnosed, how expensive they were, our insurance didn't always cover it.
[00:28:05] So she made it her mission with her sisters. They would try to get any child that who needs to fit with your needs. Um, so we did that story with them and that stood out to me because she was only eight years old when she decided to do this. And we actually ended up teaming up with them, um, and doing a fundraiser.
[00:28:24] Um, and that was when I started in 2019. We're still partnering together and I've become very close with their mom and our two organizations together. Um, I think we've helped almost 10 children. Get fit with hearing aids through, um, her programming of getting applicants that apply, we read through their story, and then we try to find a provider that's close to them and get them evaluated and get devices for them, um, all at no charge.
[00:28:56] So those stories really stick with you. Um, and then doing the follow-up and actually getting to talk to the child or the parents afterwards. And just seeing the impact that you have. So it's been, that was one of those things where, you know, were looking for a champion found a champion and then it kind of just, I don't know, it took like a natural course of events where now we're close with them and we work together.
[00:29:20] Now both of our foundations are nonprofits, um, to help more people, which is ultimately. You know, that's, that's really all that we really want to do. So yeah, those, those two stand out to me.
[00:29:31] Carrie: Yeah. That is a great story. I remember when that first came out too, and I think you guys were featured on Good Morning America to that story.
[00:29:42] So the girls, everybody was on stage and they had the lemon and. Yeah, we talked about the story. So what did great outreach and awareness that really started with, with a HearStrong champion and being able to partner with them further, which you brought up the point about. Finding providers who are willing to partner with you, obviously you're a nonprofit and organization and depend on people, also kind of doing this share of volunteering, whatever they can, whether it's a services or, um, you know, time and all of that.
[00:30:23] So how can professionals or providers get involved and what is the criteria for that?
[00:30:32] Julianna: Um, well, we have on our website, we have a form that, you know, providers can fill out a form just with their contact information, you know, their name, their practice. Um, if they're interested in partnering with us. So in the case that we have somebody, um, through our Pay it Forward program, where is a program that we allow champions to nominate somebody who's in need, um, said they nominate somebody who needs to be evaluated and fit with hearing aids.
[00:31:00] We find a provider near them. So if we do get a provider who is interested and we put them in our little database and hopefully, you know, we'll, we'll have somebody who's in need and that provider would be able to help us out, um, by seeing the patient, um, which, which is ultimately what we want to do. We want to kind of try to build like a network of providers that we can always depend on.
[00:31:22] I guess have our same, um, um, mission and they want to help individuals. Um, and they'd be willing to do that with us and partner with.
[00:31:34] Carrie: Yeah. So can you share a little bit more about the Pay it Forward program and the, how that, that works? So it's part of your Hearchampions. If you're nominated and you're a champion, you have the opportunity to Pay it Forward.
[00:31:50] Can you share it?
[00:31:50] Julianna: Yeah. So this is a, it's the most reward. It's the best part because, um, you know, champions who have hearing loss, they have here needs, um, they've done something about it, but we share their stories. We kind of surprise them by telling them like, you know what, now you have an opportunity to pay it forward.
[00:32:08] You get to nominate somebody, give us their information, we'll contact them. Um, you know, somebody who might just not know how to go about getting hearing aids or who do I see to get tested or, you know, I don't have the financial means necessary to access this year in healthcare. So we partner, we find providers near them who will then test that individual.
[00:32:32] Um, we get devices donated from hearing aid manufacturers. We reach out to various manufacturers, and they donate devices that providers them fit on the patient. Um, and then we get to. We follow up and find out their story afterwards. Um, as you can imagine, usually it's a shock because this is the first time they've ever had hearing devices.
[00:32:58] So it's, their whole world has changed. Um, and it's been so interesting to do because you know, our champions range in age from child to adults. Um, and so do our pay it forward recipients. So it's so incredibly rewarding. The family members are so grateful individuals grateful, and you see how it impacts them down the line and how it changes their life.
[00:33:27] I mean, it's, it's a wonderful, wonderful program. Um, but the only way we do it is through donations and having providers to help us. So it's an important program and a rewarding program.
[00:33:41] Carrie: Yeah. So hopefully more providers will jump on board because I think it's such an important aspect of audiology that we participate in things like this, because it does benefit so many different people.
[00:33:58] And I think we just have a. Just part of who we are that we need to be doing this. It's like paying it forward that way. So I'm thankful that you guys also have that program too, because it does really impact. And I know from my experience to be able to pay it forward was such a blessing. It was a mom who I've known.
[00:34:21] since her children who two out of a three kids had hearing loss and hearing aids. And I had known the mom since her kids were preschool and now they are like teenagers. And so she always put her kids first, which I would too. I always put my kids first. And so their technology in hearing aids were always, you know, came out first.
[00:34:46] And so she was like, I'm just gonna wear it. My old devices. And, and so to be able to pay it forward to someone who like this mom who is always put her kids first, I am, she was the excited and emotional about the whole process. And it really did change her life. So thank you guys. But, but that program
[00:35:08] Julianna: too, that was such a touching story to, to hear from you about that mom, and then to get her.
[00:35:15] Reaction like when she was notified, what she was receiving and what the program was that, I mean, I started crying, reading the testimonial and then started crying. And then I was like to Andrew was, and he was like, no, this is very touching. We shared them with our board members and I was like, this is why we do what.
[00:35:38] Because this mom always put herself first, like you said, that's what parents do. Um, and she wouldn't have done this for herself. If you hadn't stepped up and give it your. Like just so surprised and shocked and just so grateful and yeah, I mean, that's you get, I get shows now thinking about just because now I see that you're kind of tearing up, so yeah, everything.
[00:36:05] It was wonderful
[00:36:06] Carrie: though, you know, so it was, it was a great process to be involved in and I'm so thankful for that program as well. So you talked a little bit about sponsors and getting donations. How do you guys, how can people get involved with being a sponsor or donating to Hearstrong?
[00:36:29] Andrew: So, uh, they can reach out to us through our website, which is Hearstrong.org
[00:36:35] Um, we have a fundraiser going on right now. Um, so we're looking for some sponsorships for that our, our next fiscal year fundraise, uh, that we're doing where we want to help 50 individuals, uh, and get them fit with hearing aids. Um, you know, that's, uh, I do want to just mention this because it's kind of a really, uh, touching thing that just happened.
[00:37:02] It's a new milestone. Someone who recently passed away, had it in her will, uh, that they wanted to have, uh, donations instead of flowers and the donations we're going to HearStrong. So that was, uh, that was kind of an incredible thing. If you think about like somebody's last wishes, uh, and what they're asking folks to do, uh, and for them to say.
[00:37:25] Uh, we'd rather have, you know, money to go to this great cause then, you know, flowers or whatever it is. That was, that was just a really, really cool thing that happened recently. And we're, we're so grateful for that. Um, but there's all different types of ways that people can get involved. Um, and we have a sheet of different, uh, fundraising ideas for our, our, um, our helpers out there and our volunteers.
[00:37:50] Uh, so if you're interested in getting involved, uh, let's say. Maybe you can't make a direct donation yourself, uh, but you want to get involved and you want to help out with stuff. Just reach out to us through Hearstrong.org. Uh, and we can help get you set up and ready to, to help us out with that effort.
[00:38:09] Uh, Juliana, you want to give some more detail on, um,
[00:38:12] Julianna: the current one there's boxes, so we've kind of changed our route. Um, so when we were tied with EarQ, um, you know, we're completely separate now. We worked a lot with hearing aid manufacturers who would help us sponsor in the past, um, and presently, um, and now we're kind of trying to branch out more just to, again, raise that awareness of hearing loss, what we do, what can be done, how you can help.
[00:38:42] Um, so we are trying to kind of branch out and reach out to, you know, more businesses, other different types of companies, um, even individuals. Um, and you know, when they sponsor or donate money to Hearstrong, all of that money goes towards, um, you know, fitting people and giving them that gift of hearing, where we pair them up with a licensed professional who will test them, take care of them, guide them in the right direction.
[00:39:09] And then, um, with brand new devices, um, that will hopefully enrich their lives for the better a great changes. So that's, you know, when people are interested in donating or sponsoring, like that's where the money goes, that's what it goes towards. Yeah. So yeah, if anybody's interested in donating or sponsoring, you can always find all the information on our webpage.
[00:39:32] Um, like Andrew said, um, or, and can always reach out to us too. It's Scarlett and I, so we're, we're behind the scenes, so it'll just be talking to me or her. So, yeah.
[00:39:46] Carrie: Oh good. That's a great. And I show notes after the podcast. I'll definitely link that Hearstrong website, people can click on it and they can get involved that way as well.
[00:39:58] But before we wrap up, I know just from exploring your website and seeing your social media posts, you also have a couple other things that people can participate in such as you have a sports scholarship. Could you share a little bit.
[00:40:15] Julianna: Yeah, we partner with, um, the NFL players association. So we grant, um, scholarships two scholarships.
[00:40:23] Um, I mean, out of $2,500 each to a student athlete with hearing loss. So they have to be. We have all of the, uh, the criteria on our website, but, you know, they have to have a 2.0 grade point average. They have to be at least playing on a varsity level for a year. Um, and they have to be either a high school, senior to college, sophomore to apply.
[00:40:45] Um, you know, they have to get a letter of recommendation from a coach, um, or faculty member and they write in and apply. Um, so we have that. Um, and then we also pair up with walk for hearing. So they now have turned because they can have virtual events, um, hopefully there'll be transitioning to in-person events, but they do virtual walks now.
[00:41:07] And so we're an Alliance. So being an Alliance. If you want to do one of the virtual walks, you can choose HearStrong as your Alliance. So the money we get, just a small portion of any money that's raised and it goes to her strong. Um, and yeah, again, like any small amount, any little bit helps, um, cause it just helps us to continue to do what we're doing, um, and helping more people, which is really what we strive to do.
[00:41:32] Carrie: Yeah, that's great. Is there anything that I didn't ask you that you want to share?
[00:41:42] Julianna: What do you think Andrew? Anything?
[00:41:45] Andrew: No, I mean, we covered a lot. I, it's not, it's just such an important thing. I definitely want to thank your listeners for tuning into our story. Just, um, learning more about Hearstrong, um, that's, uh, uh, it's really cool that you're doing this podcast.
[00:42:02] I mean, we just can't have enough positivity focused on, um, you know, our space right now. Uh, and I hope we can continue to, to grow the industry and just really grow the amount of people that are stepping up and doing something about their hearing loss.
[00:42:20] Carrie: Well, I want to thank, do you want to say anything else?
[00:42:22] Juliana, let me cut you off. I just want to thank both of you guys for your time and just as a HearStrong champion, I think your mission is so important and to be able to have different people's stories that there is so. Critical and empowering and positive for others to see whether you're a professional.
[00:42:48] Like you said, Andrew, listening to that, Elliot, I think you said his name was playing the guitar and having that impact. Or A parent who might be starting the journey and to be able to go to the HearStrong champions and be like, wow, look at all these different people. And they all have something unique and talented about themselves that they are sharing with the world or a teenager or a young adult or an older adult
[00:43:16] I mean all anybody to be able to read somebody else's story and get that inspiration. Yeah. So important and really thank you guys for everything that you do with HearStrong.
[00:43:33] I thank you, listeners for tuning in, and I will put information right here, starting on the show notes, and please tune in again to empowEAR Audiology and share this information with all of your friends. Have a great day.
[00:43:48] Announcer: This has been a production of the 3C Digital Media Network.

Episode 21: empowEAR Audiology - Dr. Sam Atcherson

Announcer: Welcome to Episode 21 of empowEAR Audiology with Dr. Carrie Spangler.
[00:00:16] Carrie Spangler: Welcome to the empowEAR Audiology Podcast, which is part of the 3C Digital Media Network. My name is Dr. Carrie Spangler, and I am your host. I am a passionate audiologist with a lifelong journey of living with hearing challenges in this vibrant hearing world. This podcast is for professionals, parents, individuals, with your own challenges and those who want to be inspired.
[00:00:44] Thank you for listening, and I hope you will subscribe, invite others to listen and leave me a positive review. I also wanted to invite all of you to visit and engage in the conversation on the empowEAR Audiology Facebook group. Transcripts for each episode can be found at www. 3, the number three, C digital media network.com under the empowEAR podcast tab.
[00:01:18] Now let's get started with today's episode. Let's get started with today's episode of empowEAR Audiology. Today I am looking forward to interviewing a colleague, friend and a cochlear implant mentor. Let me tell you about today's guest. Dr. Sam Atcherson. Dr. Atchersonis a bilateral cochlear implant user, and a long time user of hearing aids.
[00:01:46] He received his bachelor's and master's degree in communication, sciences, and disorders from the university of Georgia and his doctorate in audiology and speech pathology at the university of Memphis. He is currently professor of audiology at the University of Arkansas for medical sciences. He has given over 200 presentations at local, regional and international levels.
[00:02:13] And he is an author. or a coauthor, of over 50 peer reviewed articles, 22 books, chapters, and three books, his research and clinical areas of interest include face mask related to speech perception and acoustics, auditory electrophysiology, audiologic rehab, and health literacy. He serves on the board of directors for the accreditation commission, but audiology education.
[00:02:45] And then the board of trustees as vice president for the Arkansas School for the Deaf and Blind and Visually Impaired. He is the co-founder of the Association of Audiologists with Hearing Loss, a former president of the Association of Medical Professionals with Hearing Loss and one of the original founding board members of the Arkansas Hands and Voices Chapter.
[00:03:12] Today, I'm not only excited to learn more about Dr. Atcherson’s research and study, but I'm also looking forward to hearing his journey, um, from hearing aids, the cochlear implant. And I'm so excited because by storytelling, we really can share it and empower others who may be on that hearing journey.
[00:03:34] So welcome. Dr. Atcherson. Thank you for being on this podcast.
[00:03:40] Sam Atcherson: Thank you, Carrie. Please call me Sam. We are friends. We are colleagues. Um, and it's weird to hear my bio, but, um, I'm proud of it. Um, I wouldn't be where I am without, um, audiologists and speech pathologists and my, uh, childhood and upbringing. So anyway, I'm so glad to be here.
[00:04:03] Yes.
[00:04:03] Carrie Spangler: Well, thank you, Sam. I'm so excited for you to be here too. And I was just trying to think, we've known each other for a while.
[00:04:10] Sam Atcherson: We have. And I was racking my brain, trying to figure out when we actually first met. And I still don't even know that cause really cross paths so many times. Um, but since you had mentioned in my bio, um, the association of audiologist with hearing loss, um, I do remember.
[00:04:36] Treading a round table request for audiologists hearing loss. I think there's sort of back in 2001 and you probably came to one of those very early on, and that was probably my first introduction to you. Um, but you, you ended up being one of those rising stars too. And so we've been able to do this.
[00:05:01] Follow each other's trajectory. Um, and we've gone on to do some great things.
[00:05:07] Carrie Spangler: Yeah. I know I was thinking about that too. And I have specific memories of, um, I think Clarke means steam. We were both there and you were the, I think the keynote at that point in time and I was helping with the teen program.
[00:05:26] And you ended up coming over and spending time with us and the teenagers, which was a really great experience too.
[00:05:35] Sam Atcherson: That was so fun. And, uh, I think there were a couple of other colleagues of ours. Um, wasn't there a physician with hearing loss too, and he was helping out. That was a great time. That was a great time.
[00:05:47] That was a
[00:05:47] Carrie Spangler: great time. It was so, yeah, I'm sure. Although moments will come, come through, um, as we have this conversation today, but, um, Sam, I would love for you to share with our listeners a little bit about your hearing journey growing up.
[00:06:05] Sam Atcherson: Oh, my, um, it is the question when people want to really get to know me.
[00:06:11] And I've tried to tell that story to my students. Um, it gives me a little bit of credibility if you will. Um, well, the story kind of goes, I was probably born with normal hearing. Um, as far as we know in my family, I am the only person, um, in our family tree going all the way back to my great, great grandparents on either side to have any kind of hearing loss like I have.
[00:06:44] Um, so the way my parents tell me I had a babysitter, her. Thought that I really wasn't responding to sounds in my environment. And so my parents recall just kind of blowing the babysitter off. They're like out now, he's a boy. He's hard headed. Listen anyway, but I don't know. One thing led to another and I think they started noticing it themselves.
[00:07:13] Um, my father was in the air force, so we went to an air force hospital. Has had an ENT look in my ears, didn't see any signs of infection or anything. So, yeah. That was the first referral to an audiologist. Um, and of course at my age, at the time, I think it was three and a half or four. I can't remember exactly from their story.
[00:07:38] Um, but they put me in a booth had headphones on yet. And they'd got minimum response levels that was skirting on a mild to moderate hearing loss. But again, I was just the better ear. Right. So. Um, as a typical audiologist would do, let's see you back in three months or six months or whatever. And they started seeing a pretty rapid progression.
[00:08:07] Um, I think it had dropped to about a moderate to severe hearing loss. By the time I was five or six, and then it just stabilized for a little while, but because of that time period, They very quickly enrolled me in a pre-K program with other deaf and hard of hearing kids. And that was the first time I had ever seen other kids with hearing aids and, uh, I noticed some of the other kids were wearing colorful ear molds.
[00:08:38] So I was like, I've got to get some too. And I think I had red, um, And what I was said also about that time period was I was in Denver, Colorado, and rehab relapse, some colleagues in Colorado and they led the country. In leading efforts in early intervention. Um, and so everything was taken care of in Denver, Colorado.
[00:09:04] I mean, I, I had itinerant teachers. I was in a special classroom and first and second grade with peers and also we're hearing aids and we were all oral. I don't think I was exposed to sign language until middle school. Um, But I'll tell you more about that in a little bit. Um, but anyway, so my time in Denver was great and then my father had to be stationed somewhere else.
[00:09:31] So we went to New Mexico and not trying to throw anybody under the bus or any state, but. The services in New Mexico, where I lived was not the same at all. And so we started seeing some, some difficulties in the classroom, anyway, so as I moved in various places, um, the thing that really changed my life and taught me self advocacy skills was when I ended up in Portsmouth, New Hampshire.
[00:10:07] I was there in um, eighth grade and ninth grade, sorry. From the time I left Denver to the time I was in New Hampshire and high school, I was in public school with very little services at all. I might've had a speech pathologist. I certainly went to audiologists for regular checkups, but no one was really keeping an eye on me.
[00:10:34] And it wasn't until I was in New Hampshire, that I was again, placed in a classroom for one hour at the end of the day. With other students with hearing loss, some signed, some were oral, and it was there that I learned how to read an audiogram for the first time there was there that I learned how to sign.
[00:10:58] And I discovered there was another way to get information. Um, and I joined a boy scout troop there that also had deaf. Children. Um, and so, oh, and I, I learned how to use a TTY. I was just exposed to things that I have never been exposed to up until that point. And that really helped to set the stage for my future.
[00:11:28] I'll just share one more thing about my childhood. Living in New Hampshire really helped me to identify who I was and who I could be, but I have to give credit to my grandparents. I lived with them in sixth grade and seventh grade in Maryland. And during that time, my grandparents taught me the value of hard work.
[00:11:55] They taught me to pay attention to school and academics. Um, they fought with the board of education to make sure that I was placed, um, and, and an appropriate classroom setting. Um, I got my own personal FM system at that time. So, um, that. That period of my life is what helped me do better in school and pay more attention and take pride in my work.
[00:12:26] And then I got the self-advocacy skills in high school and that's just carried me through.
[00:12:34] Carrie Spangler: Wow. That's great. Like, and just some of the things you said, I just like making my wheels turn right now. I mean, you know, you start out in Denver with like basically the great, you know, spread of all kinds of services.
[00:12:50] And then to know that. From one place to another. It's so vastly different. And, um, and unless parent, so empowered with information. And thankfully you started in Denver, so that at least you had an idea or your family had an idea of what they could ask for what you should be getting, because if you would've started in New Mexico, your parents may have never known that.
[00:13:20] You should have had any of these types of support.
[00:13:24] Sam Atcherson: Absolutely. Absolutely.
[00:13:26] Carrie Spangler: So, yes, we have a lot of work to do in education, but I love the fact about the self advocacy, because I think that's a skill that we can start with kids when they're preschool. And it takes if the lifelong skill that kids and adults who are deaf and hard of hearing need to have.
[00:13:46] Um, and, but you did mention that you were in a class at the end of the day, for an hour with other peers who were deaf or hard of hearing. And how did that help you? How did the having other peers, any of the mentors for you,
[00:14:03] Sam Atcherson: or did that impact you in any way? Oh, my, uh, I spent a long time since I've thought about that, but this is what I was say.
[00:14:12] Um, we probably inspired each other for different reasons. For me though, personally, I felt. Alone and isolated, you know, in all these years of school, without other peers with hearing loss, I really felt like no one understood what life was like for me. And then suddenly I'm with peers that are the same age, we're all teenagers.
[00:14:43] We're kind of going through this, you know, personality development, trying to figure out who we are. And it was really cool for me to see. Otherwise, well adjusted deaf and hard of hearing kids. Um, Being good at what they do. I think it gave me some self-esteem that I didn't have. It gave me a little bit of courage, um, uh, learning sign language at the time.
[00:15:15] I don't use sign language as, as my primary means of communication, but I've used it socially. I use it to work with patients if I have to, but learning sign language opened my world. Socially, at least at that point in my life. Um, um, I'm grateful for it. I'm absolutely grateful for it. Um, part of the isolation and feeling lonely was I didn't get the side conversations that other kids were having.
[00:15:51] That was no longer an issue. Um, when I was around my deaf and hard of hearing peers. Um, so that was great. They were just really great.
[00:16:00] Carrie Spangler: Yeah. I know. I w most of our kids are in the mainstream and they don't have those opportunities to meet others. And I know from my own experience, you know, Karen MacGiver-Lux, uh, she was like the first person I haven't met with.
[00:16:18] You know, who was wearing hearing aids at the time. And I went to, and she was going to college and I was starting college. And I thought that was such a pivot point in my life where I was like, oh, there's someone else like me out there. It was like, like what you said, that kind of self-esteem. And, you know, having someone that.
[00:16:40] Was relatable to you in the same situation, so that it's important to have those peers. And we still do. We have a
[00:16:49] Sam Atcherson: whole network. I keep collecting them. It's like Pokemons. I'm just like, oh, this person, this person. And. Yeah. I no longer feel alone. Yeah. Yes.
[00:17:01] Carrie Spangler: So, and I just have to say, and it kind of gets to my next question about your cochlear implant, but you were like one of my, um, messenger audiologist with cochlear implants and my group texts when I was pursuing that path just a short time ago.
[00:17:21] But what, at what point did you pursue that cochlear implant?
[00:17:27] Sam Atcherson: Oh, my, um, So let me backtrack a little bit. So when I was in my master's program, I was wearing hearing aids very successfully. Um, this formal instruction was getting a little more difficult because at that point I think I had a severe to profound hearing loss, but I was doing well.
[00:17:57] By anyone's standards. And so no one ever pushed, no one ever pushed me or encouraged me to get a cochlear implant. Um, and then somewhere close to the end of my master's program. My great aunt who, who passed away a few years ago, she lived in San Pedro, California. Um, right outside of Los Angeles, she attended.
[00:18:26] Some kind of a workshop and they were talking about cochlear implant technology, and they were talking about the research that was coming out of House Ear Institute. And she was so inspired by this technology that she have never heard of before that she called my grandfather, told him my grandfather called my dad, told him, then my dad called me.
[00:18:55] And says, Hey, Sam, your aunt called your granddad, your granddad called man, I'm calling you, have you ever heard of a cochlear implant? And I'm like, yes, dad, I'm in graduate school. I've learned about cochlear implants, but we're still talking 20 years ago or more. And I said, you know, dad, I'm just kind of at this point where if my hearing goes.
[00:19:23] It goes, I know, sign language, I belong to a deaf and hard of hearing community. I might still be able to function as an audiologist, just in a different capacity hours, like ready to go deaf if I'd had to. And I could just hear figuratively my dad's heart break. What I didn't consider in that moment was so what.
[00:19:52] I can communicate with people in the deaf community. What I was effectively doing was cutting off my family. It just did not register in my brain at that moment. And so there was probably weeks or months after that, that I finally started thinking, well, I don't need a cochlear implant right now, but I'll cross that bridge if something changes.
[00:20:24] So fast forward to my first year in my PhD program, I went straight from the master's program, right into the PhD program. My hearing started to change. The content. Uh, uh, of my PhD courses was getting harder. I was having difficulty understanding some of my professors. So I started mentioning about the cochlear implant again, and with that hours, like what the heck?
[00:21:00] Why not just go and do a cochlear implant evaluation. See what they say? And we'll make some decisions as a family. What I didn't know at the time was that my aunt was willing to write the check for the entire surgery. Hmm. Wow. And I saw her, right. It. Hmm. Um, she really, truly gave me the gift of hearing back in 2001.
[00:21:33] And. To honor her. I went all the way to Los Angeles, California to do the surgery. So she got to watch the whole thing. She was there when I woke up after surgery, she was there along with my dad when they activated the device for the first time. Um, I know I wouldn't be where I am right now, as far as I've gone without the implant.
[00:22:01] And I'm not saying that. Everyone needs an implant I'm saying for me, it opened doors that I don't think I otherwise would have had. If I was just wearing hearing aids, I would have found a way to succeed no matter what, but this was life-changing for me. Wow.
[00:22:23] Carrie Spangler: That's so amazing about, you know, you get to.
[00:22:27] It was the, um, the coconut implants went covered at that point in time through insurance
[00:22:34] Sam Atcherson: while I was still in school. So I didn't have the kind of insurance that would have covered it. Right. Um,
[00:22:40] Carrie Spangler: basic level insurance
[00:22:42] Sam Atcherson: at that time. Um, before we move on, I want to share one other interesting story related to all of this.
[00:22:50] When I went and had my cochlear implant evaluation. It was there. They discovered that I had large vestibular aqueduct, but it saw my CT scan and course up until then we had no idea why I'd have hearing loss because no one else in my family had hearing loss. So it was kind of an interesting feeling and moment to go, oh, I now know what caused my hearing loss.
[00:23:22] I now know why there was progressive. I now know why. And he kind of rough sport that I did probably contributed to those changes in my hearing. I do remember getting hit in the back of the head when I was working, um, at big glass. Um, it's a, um, That's a big store, like a Walmart or something. So anyway
[00:23:46] Anyway, I was hanging up hammers and the, the wall buckled and all these hammers started dropping on my, I wasn't injured, but it did change my hearing. So when I got that news, I sent an email to my entire family and I said, I now know why I have hearing loss and guess what happens? My grandfather sent me an email back.
[00:24:18] This is hard.
[00:24:23] Wrote me an email saying that he was so relieved to know that that was the cause because when I was around three or four years of age, he came to visit me and my family. My parents went to work. My granddad was at home with me. I put on my Superman costume and I wanted to show my grandfather some tricks.
[00:24:53] So I'm jumping back and forth between two beds. My last step I misstepped and I hit my head really hard on the side post of the other bed. And it was right around that time that my hearing loss was diagnosed. My grandfather held for over 20 years, guilt that he had caused my hearing loss. He never told anyone else about it.
[00:25:23] Carrie Spangler: Wow. That's a lot hold on right?
[00:25:26] Sam Atcherson:
[00:25:33] Carrie Spangler: But I always feel like. I experiences as audiologists to, you know, have hearing life, like just your story right there, finding out during a cochlear implant process about EVA, I'm sure you have a patient that you would want. It'd be like, okay, we're getting an MRI. You need to get an MRI or, you know, like, not that you would prescribe that, but you would recommend that.
[00:26:00] Because just the things that our experienced that we went through, I think make us stronger. However, we also have this insight and intuition in us that says, Hey, maybe you should look further into this or that because of our own experiences.
[00:26:19] Sam Atcherson: I hope it makes me a better investigator, a better diagnostician, um, But most importantly, I think living with hearing loss has given me a sense of, uh, empathy, um, how I want to share about the whole person and not just what's on the audiogram, what I got from them in the booth.
[00:26:47] And I think that's something that good audiologists do anyway, whether you have hearing loss or not, we just need to be able to see the whole person. Yeah.
[00:26:58] Carrie Spangler: So kind of backing up a little bit. I know you said in grad school, and when you started your PhD is kind of when your hearing had dropped a little bit more for the, um, and you pursued that cochlear implant path, but how did you pursue the field of audiology?
[00:27:13] What got you started?
[00:27:18] Sam Atcherson: I'm laughing because. Right. So when I, when I was in high school, I got called into what I thought was going to be the principal's office. Well, actually it was a guidance counselor who wanted to talk to me. And so the guidance counselor noticed that I had a really high GPA and wondered if I had thought about college.
[00:27:43] I hadn't even thought about college. I was just so focused on graduating from high school and getting a job somewhere. So I bring that up because it was this guidance counselor that really got me thinking about higher ed to begin with, which meant. What do you want to major in? I don't know. Well, what are you good at?
[00:28:09] I'm good at art. I work in a restaurant with my mom. I'm good at cooking. I have good customer service stills. I'm like, I don’t know. So I ended up taking, uh, Uh, I don't know what they're called now, uh, of jobs. Oh, like a career inventory, their inventory. Right. And it says something about, um, health care. And so I chose.
[00:28:42] A field that I thought would allow me to be in healthcare, but not have to work with patients directly, or this is the extent of my knowledge. Okay. So it has nothing to do with any of the disciplines out there. They're all wonderful. But I was like, well, I don't want to be on the front lines working with patients.
[00:29:02] So I'm going to do pre medical technology. But I'm going to completely embarrass myself here because at the time I had no idea what that was. I just thought I'd be working with computers or doing something in the healthcare field. So I'm in college and that's my major. I'm taking all the biology, the chemistry, the human anatomy, I'm doing great and all of those things.
[00:29:30] And then I needed new hearing aids. So at that point, I was living with my mom to spend the last two years of high school with her. My parents divorced when I was seven. So I wanted to spend time with my mom before I became an adult. Um, so I go to an audiologist I had never seen before. Um, and his name is Richard Wright.
[00:29:58] He passed away to cancer probably about 10 years ago. So I miss him. But when I came in, my mom has sent him some of my old audiograms and he thought I was completely deaf and probably signed and he's freaking out thinking he needed to get an interpreter somewhere. And here I am, I show up and I'm talking.
[00:30:24] So he does the evaluation? My hearing hadn't changed much, but yes, I needed new hearing aids. Well, during the counseling session, he asked me, um, what I was majoring in, in college. So I said pre medical technology and gosh, oh, health care. That's cool. What do you think about audiology well I blew him off
[00:30:51] Because I was like, How am I going to be able to do the speech test? You know, that thing like he's like, well, we have speech materials on CDs. Now you don't even have to say those words yourself. And clearly you're a good lip reader. I still blew him off. Well, as year later, I go back for my annual checkup.
[00:31:16] See how my hearing aids are hearing. See if my, my hearing has changed and he had just hired a new audiologist and her name is Kim Carr, and I'm going to embarrass myself again. I thought she was the most gorgeous woman I had ever seen in my life. She asked me the same question. What do you think about audiology?
[00:31:41] Well, I didn't say yes right away. I said, well, that's what the other guy asked me last year. Why should I go into audiology? And so she was sneaky about this. What she did was she asked me if I would come and speak to parents of children with hearing loss. So I said, sure, what am I supposed to talk about?
[00:32:06] She said, just talk about your life and answer the questions that they have. And that was the pivotal point for me. I saw the difference that I could make in the lives of parents who have children with hearing loss. And so after that, My audiologist. Kim asked me if I get an application from the university of Georgia, would do you at least fill it out and send it in?
[00:32:37] I said, yes. Um, that's how the story begins. Wow.
[00:32:44] Carrie Spangler: That's awesome. It's always interesting to hear how I, you know, peeps, who I audiologists who have have grown up with hearing loss, how they kind of got navigated. Into the field. And my story is very similar. It was my audiologist who I was going for annual hearing test.
[00:33:06] So I'd, have you ever thought about audiology and I was undecided health. Major.
[00:33:16] Sam Atcherson: We have parallels too. I
[00:33:18] Carrie Spangler: know. Right? So it was, I had no idea. I don't think many people know what they want to do at age 17 or 18. And I did the same thing career inventory and and said, I might be good working with people. And so I chose.
[00:33:35] Health care as a, you know, more broad and a couple of years later, okay.
[00:33:42] Sam Atcherson: I'm going into audiology,
[00:33:48] Carrie Spangler: but kind of goes back to grad school. And once you got accepted, did you have any road blocks going, you know, getting through your graduate program or your Ph program or PhD program because of your hearing challenges?
[00:34:07] Sam Atcherson: Um, I did not. Other than what I was saying earlier. Um, the year prior to getting my cochlear implant, I did have struggles, but I also knew that the rehab period would probably be difficult.
[00:34:25] And so I spoke with my major advisor and, um, The advisory committee and they allowed me to go part time, not really part time, but I lowered the number of credits for a couple of semesters to let my brain catch up and do a lot of intensive rehab. And that was actually great. I still spent a lot of time in the lab, but I didn't have the demand of the coursework.
[00:34:54] Um, and once that was over that the thing that changed was. I went into a PhD program thinking I would never be able to practice clinical audiology again, after getting the cochlear implant, I ended up getting my license in audiology and started practicing. So that doors swung wide open for me. Um, I would say the only real road block I had was.
[00:35:26] Learning how to do audiology as a person with hearing loss. That's what got me thinking about our group. My next
[00:35:41] Carrie Spangler: question, into that. So, because of your own experiences, you started thinking about this group that you needed to get together. So can you share
[00:35:53] Sam Atcherson: a little bit more about that? Yes.
[00:35:55] Um, and if you're looking for anybody else to bring onto your podcast, um, you have to bring Suzanne Yoder into the mix and it's because, um, Around that time. ASHA someone had asked her and I wish I knew who it was. Um, but someone at ASHA had, um, contacted me about a student at the university of Pittsburgh with hearing loss and wondered if I would be willing to talk to her about what’s like and I'm sitting there going, I'm still in school, you know, but.
[00:36:34] Fascia already knew. I had just gotten a cochlear implant. It was in the ASHA leader. Um, you know, I had finished my master's degree and was now working on a research doctorate. And so I just thought that maybe I might be a good person for her to just bounce ideas off of, and Suzanne and I started emailing quite a bit and we realized that we had many of the same questions.
[00:36:59] How are we going to do speech audiometry. Um, how are we going to check hearing aids? Um, what, what happens if we don't understand what a patient says, what are some strategies that we can use to compensate for our own hearing loss and still be able to provide high quality services. And then we went to.
[00:37:25] One of the, uh, American academy of audiology meetings. And after that meeting, we realized how difficult it was for both of us just to attend the meeting. There was noise. There were people who were giving presentations and not repeating the question. So we had no idea what question was being asked by a member of the audience.
[00:37:50] We went to sessions. where the speakers would turn the lights off so we no longer could see face. I mean, it was just, so what did we do? We wrote article for audiology today called the Irony of Audiology. And I think AAA paid attention to some of that, that instead of us, um, Uh, sending a proposal every year for a round table.
[00:38:19] Yeah. They just said, Hey, did you need space this year? And so they've always created a space for us. Um, but they've provided, um, um, captioning, interpreters, uh, for that meeting specifically. And that's been great. And so from there, The group just grew, but we weren't just the association of audiologists with hearing loss from the get go.
[00:38:45] It was really more of a support group. Um, and what I was said has changed over the years is the people who came the first couple of years were really angry people. They came because they felt, I mean, we're talking 20 years ago, right? We had people come angry that they didn't get the support that they needed when they were in graduate school.
[00:39:13] Now talking about today, you don't hear that as much. Of course, every student is different. Every individual needs different things to be successful, but you don't hear that level of anger anymore. What you now see is all right. I'm having this problem. What solutions do you guys have? And we've just all jumped on that.
[00:39:38] We have a Facebook group page now for you to have a webpage. It probably needs some updating, but I, again, for the second time in my life, I don't feel alone, not as a person receiving loss and certainly not as an audiologist with hearing loss, there is no excuse anymore. I
[00:40:00] Carrie Spangler: know, and I, how many people right in that Face book group
[00:40:04] Sam Atcherson: group, um, This might've been a couple of years ago when I checked, I think they were like a hundred over a hundred people subscribed to it, and that could be unilateral, unilateral hearing losses.
[00:40:21] Bilateral hearing is. Um, cochlear implants. We might even have some people in there with auditory neuropathy spectrum disorders, um, some have private practices. Some are in universities, some are in hospitals. I mean, it's a very diverse script.
[00:40:40] Carrie Spangler: is, but I agree too, to have that support and to be able to mentor the younger, um, rising professionals, I think is important to you.
[00:40:53] And I think you, like you said, you've been contacted by other. Uh, professors at other universities who are kind of trying to help someone navigate. So how, how has that changed you? Can you share some experiences of being able to mentor those students?
[00:41:12] Sam Atcherson: Yeah, absolutely. And I won't, I won't name specific schools or students, but, um, you know, some schools for whatever reason might have more students with hearing loss than others.
[00:41:26] And it's typically the schools that don't get students as often when they start searching around for, for help. Um, they'll often find me. Or maybe Suzanne or the association of audiologists with hearing loss. But if they're, if they're already in an academic setting and they know that I'm in an academic setting that’swhen they're like, okay, I'm just going to go straight to the horse's mouth.
[00:41:52] Um, and so we started having conversations about how can I help my student in the classroom? What has worked, what hasn't worked. Um, how do you guys You know, provide funding for captioning or an interpreter? And I may not have all the answers for that, but I certainly can point them in the right direction.
[00:42:14] Um, but probably the single biggest question is how can I ensure the students will be successful when they go off campus? Yes. And I think probably the number one answer is you've got to teach that student how to advocate for themselves. And you're not in your head because you and I wrote an article on this very thing.
[00:42:41] Um, they've got to learn their skills in graduate school, or they're just going to flounder when they're. When they graduate and, and they're having to do this independently, so why not learn it now in graduate school and what I would consider a safe space? Um, yeah. Also during that time, you really should look closely at the technology that they're using and do they need to be making some changes like now that will set them up for success in the future.
[00:43:18] So those conversations can go. And a number of different directions, but ultimately, ultimately that comes down to how can I help my student be successful in the classroom and in the clinic? Yeah.
[00:43:35] Carrie Spangler: I agree with you a hundred percent, because I think a lot of students who decide to go into audiology, they grew up.
[00:43:44] Kind of like we did in a more mainstream setting. And I mean, you were lucky to have that advocacy support, but I wasn't. So I didn't know what to ask for. I mean, other than knowing I have a hearing loss, like you're learning along with you, classmates about audiology, except that you have, you know, personal experience, but.
[00:44:05] I agree that advocacy and being okay with sharing your story and what you need and how someone else can help you is really important. And the technology piece, a lot of those students haven't used a DM system or captioning or anything before. In fact, these are things that are going to really open up
[00:44:30] Sam Atcherson: doors for you.
[00:44:30] Yeah, absolutely. Absolutely. So tell me
[00:44:36] Carrie Spangler: a little bit before we kind of wrap up today, I would love to hear a little bit about some of your PhD research and what your favorite part of research is right now.
[00:44:49] Sam Atcherson: Um, I'm laughing again because I spent five and a half years of my life learning everything about electrophysiology, you know?
[00:45:03] Um, I don't regret any of that training at all, because I think that training helped me understand the importance of plasticity in the brain. Okay. And. I knew that if I could at least learn that I could apply it to other areas of audiology. My mentor told me that part of going through PhD training is to prepare you to be an independent researcher, no matter what your topic area is.
[00:45:39] But certainly if you want to be an expert at a particular area, you have to do the time. Okay. So just because I switch from one thing to another, doesn't make me an expert at the next thing. You have to really get into the literature, learn what the problems are and try to be part of the solution.
[00:45:59] So I still dabble in electrophysiology a little bit. I'm fascinated by it, particularly with technology that works well and you see evidence of that change in the brain, but there. Other people that are far better suited to do that kind of research. But I certainly like to share that research with my patients, with my students.
[00:46:26] What I've been doing lately is I think I'm uniquely suited. As a scientist that can help people with hearing loss in a different way. Vocationally. Um, so you had mentioned in my bio that I've been part of the association of medical professionals with hearing loss, and these are. What I would consider very high caliber people with hearing loss who have gone above and beyond, and they are truly helping other people and their only obstacle hearing loss.
[00:47:08] So when I joined that organization, I was. Maybe one of two or three audiologists there, everyone else was like either a physician or a nurse or a dentist. Um, you name it. I very quickly learned one. Stethoscopes was a problem and two face masks were a problem. So very early on, I tried to see how I could.
[00:47:43] Assess study the use of stethoscopes. So, um, I started doing some recordings with conventional and amplified stethoscopes, and one of the most important things I've learned in my research is that hearing aids and cochlear implants because of the design and the size and shape of the loudspeaker and the microphone, they don't.
[00:48:12] Amplify low frequency signals very well, fast, problematic when you're trying to listen to some very low frequency heartbeats. Okay. So when I started sharing that information with my colleagues, they're like, well, that explains everything, you know, because no one else had explained that before. Um, and. And now we're starting to see some newer, um, amplified stethoscopes.
[00:48:45] They're certainly amplifying things better. They're saying, just take the implants off, take the hearing is off use headphones, which will boost the low frequencies. And you'll be able to hear everything was this. You hear everything including all the noise in the room too, because it's so sensitive. So, so I'm still trying to help.
[00:49:07] Um, solve some of barriers, um, uh, problems and answer questions about that. But because hearing is, and cochlear implant technology seems to be. Changing all the time and everyone wears different devices. It's really hard to tell any one person exactly what to do. So I have to deal with this on a case by case basis, and I've been able to help some people in that regard, the face mask stuff.
[00:49:41] I was doing this before. COVID 19. Okay. I simply wanted to find out, well, one. Does the use of face mask alone, distort speech to the point that we should be paying more attention to this? The very first study I did was, uh, uh, using dental office noise. Um, and we used the connected speech test as the material that our participants would have to repeat and the presence of dental office noise.
[00:50:19] We did normal hearing and we did moderate hearing loss and. And yes, noise was a problem for both of them, but to a greater degree for the individual with moderate hearing loss. And this was the, the non transparent or opaque mask. But what we didn't know was how it affected people with severe to profound hearing loss.
[00:50:42] So I did another study later and that study also incorporated the transparent mask too. And we saw that. Um, just to summarize it really quickly, um, the severe to profound listeners benefited from the transparent mask, um, and they were affected by the noise in a different way. But what I wasn't prepared for is that we had some participants who didn't wear hearing aids at all.
[00:51:13] And they weren't affected by the noise. So they were completely dependent on what they could see on the mouth. So they had 0% with the opaque mask, but with the transparent mask, they were getting like 20%. Correct. I was like, wow, that's really cool. So that led me to working with one of the inventors of a transparent mask, um, Genie Han.
[00:51:41] She invented the face view mask. And so we were able to get some NIH funding. So I did another study and I'm working on the results of that for publication. Um, but during COVID, since everyone was wearing the mask and. An article came out very early on. I think it was February saying that surgical mask and N 95 mask were lowering and distorting speech.
[00:52:13] I jumped on that because my question was, if that's what's happening to surgical mask and 95 mask, what's happening with the transparent mask. Matt, you have this other barrier in front of your lips. And so I was starting to see levels drop like 12, 20, 28 dB, if you will. And so one of the best ways that I've heard this being described as that, if you have normal hearing.
[00:52:49] And you're around people waving masks. It like, you have a mild hearing loss, but what if you have a moderate hearing loss, man, you just made that hearing loss even worse because of the presence of a mask. So that's what I've been working on these days. Um, and now that people are getting vaccinated and the restrictions are being relaxed in health care.
[00:53:18] Masks are not going away. So I'm going to continue this, this line of work. Um, and, and hopefully that helps because it all started with how can I help my colleagues and medicine and nursing and dentistry when they have to wear a mask and they'd have to communicate with their colleagues who were also wearing masks.
[00:53:42] Carrie Spangler: Right. No, it's such timely research obviously with our whole pandemic, but at the same time, like you said, there's always going to be situations where masks are going to be needed and to be able to have solutions for accommodations and support is really important as well. Not just, you know, your research is critical because it's going to give the facts and the bottom line of why we need to have certain accommodations in order to support our patients or our medical.
[00:54:15] You know, faculty and professionals as well, so
[00:54:20] Sam Atcherson: important similarly. So that's, that was the conclusion of the most recent paper that we had published. So what mask obscure muffle reduced the intensity of speech? We now have to think about solutions. So if you wearing them, what can we do to overcome that?
[00:54:40] So, absolutely. I agree with you.
[00:54:43] Carrie Spangler: So just to wrap up, this has been such a powerful great content conversation. Is there anything that I didn't ask you that you were like, oh, I hope Carrie asked me this on the podcast today.
[00:54:56] Sam Atcherson: Um, you know, as I was doing this podcast with you, I talked about my aunt and I've talked about my grandparents, but I also want to give a lot of credit to my mom and dad.
[00:55:08] Um, my mom and dad treated me as if I were any other kid. And I think that is so powerful. You know, I can say that my grandparents did this, my great aunt, the desk, but what my mom and dad did for me was because they didn't treat me any different than anyone else. It made me believe that I could survive in this world.
[00:55:39] And they provided the things that I needed. They provided the opportunities. Um, they continued to support me in any way that they can. But because they are not treating me any different, that just builds me up. And, and I hope that parents do that for their kids. Um, whether they have a hearing loss or not a disability or not a difference or not, but the role of parents is so important.
[00:56:11] And I, I really appreciate my mom and dad for that too. Um, other than that, Sometimes, I feel like my story, isn't all that unique. Um, because I I'm inspired by others, um, including your story too. Um, but we are living in a day and age where it doesn't have to be about I can't anymore. Sometimes it's just a matter of finding the right solutions and having the right support team behind you.
[00:56:44] Carrie Spangler: Yes. I agree. A hundred percent. Well, Sam, I am so glad that you were able to come on to the empowEAR audiology podcast. And I know that your story is going to inspire families, going to inspire adults who are on this journey and the professionals who are out there who need to hear. The story as well. So thanks again.
[00:57:08] And I'm going to have you, is there any way that people can get a hold of you if they have any questions and I can definitely link your information to the show notes of the podcast as well.
[00:57:20] Sam Atcherson: Absolutely. Feel free to give them my, um, you AMS email address. Okay. I will. I love people all around the world.
[00:57:30] Carrie Spangler: Well, good.
[00:57:31] Well, I just want to thank you again, and I want to thank all of our listeners for listening and tuning in to empowEAR Audiology. And if you like this, please, um, give a favorable rating and share this podcast with your friends and family and colleagues. So thanks again.
Thank you Carrie
[00:57:52] Announcer: This has been a production of the 3C Digital Media Network. .

Episode 20: empowEAR Audiology - Karin Weiser

Announcer: Welcome to episode 20 of empowEAR Audiology with Dr. Carrie Spangler.
[00:00:15] Carrie Spangler: Welcome to the empowEAR Audiology Podcast, which is part of the 3C digital media network. My name is Dr. Carrie Spangler, and I am your host. I am a passionate audiologist with a lifelong journey of living with hearing challenges in this vibrant hearing world. This podcast is for professionals, parents, individuals, with your own challenges and those who want to be inspired.
[00:00:44] Thank you for listening, and I hope you will subscribe, invite others to listen and leave me a positive review. I also wanted to invite all of you to visit and engage in the conversation on the empowerEAR Audiology Facebook group transcripts for each episode can be found at www. 3, the number three, C digital media network.com under the empowerEAR podcast tab.
[00:01:17] Now let's get started with today's episode. All right. Let's get started with today's episode of empowerEAR Audiology. I want to share that one of the joys of doing a podcast is you never know what kind of connection you might make. So today I am really excited to have a guest who resided on the other side of the world and because of networking stories, I paths I'm connected in a personal way.
[00:01:43] Let me share an introduction about Karen. She is British by birth. Global by choice Karin has lived and worked in nine countries across four continents, extensive travel, European roots and cultural savviness. Give her a license to operate globally. 20 years of business experience spanning the pharmaceutical industry, executive search and market research in London, her passion for people and words has been uniquely combined during her career.
[00:02:16] She has taught English as a foreign language around the world and has more than a decade of experience in learning and development communications and people in change. Her own story has been rewritten many times, which has led her to work with storytelling. Her fascination with the human mind and resilience shown in the face of adversity means she always has an inspiring story to share.
[00:02:43] She started her journey as a coach and a mentor in 2008 after immersing, herself, and the world of neuro linguistic programming. She became ICF certified with coaching in 2017 and has not looked back. After hearing this internet introduction, you might think, what does Karen have to do with empowerEARed Audiology?
[00:03:07] Let me introduce Karen and we will find out so welcome to the podcast and thank you for being here.
[00:03:15] Karin Weiser: Well, thank you for inviting me, Carrie.
[00:03:18] Carrie Spangler: So do you want to share with all of my listeners a little bit of how we got connected?
[00:03:24] Karin Weiser: Yes. I'm happy to do so, so well. Let's just put it on the table. I'm also hearing impaired and I had quite a journey to get to where I am today as a successful cochlear implant user.
[00:03:41] Three years ago, I got my, my cochlear and I was activated and it's changed my life. And about a year ago, I started blogging for the IDA Institute, and I think I've done four blogs in total and the latest blog. Was published last month and you commented on it. And it was about my journey leading up to getting a cochlear implant, which I know that the Ida Institute has told me is, um, I don't think they've got many stories to share about it.
[00:04:16] I think it's still relatively new, even though they've been doing cochlear implants since the early nineties, I believe you might know more than more about that than me and I reached out to you and we got connected. We had a dialogue and I offered my story to share via this podcast. And we jumped on the opportunity and here we are.
[00:04:40] Carrie Spangler: I'm so excited that you're here. And then just for our listeners, if anybody's interested in the Ida Institute, it is located in Denmark and they are an independent nonprofit organization that works on building a community that embraces person centered care. So with clinicians and academics and people with hearing loss around the world, um, they help to develop knowledge.
[00:05:03] Skills and confidence to better manage hearing loss. So you can always get onto the website and find the many tools that they have to offer, um, for professionals and for families and individuals who do have hearing loss. So just a little plug in there, but for them. And I had told Karen that I actually.
[00:05:23] Was over in Denmark, um, several years ago, working on a project with the Ida Institute. So our paths have crossed, a different time because of a common connection. Um, but I was exploring your website and I love your motto of helping professionals and organizations to rewrite this stories and walk their talk.
[00:05:45] So can you tell me more about why you believe storytelling is so important?
[00:05:52] Karin Weiser: Well, basically the human brain is wired for stories. We tell stories all the time in our casual conversations without actually realizing it. And I've used storytelling in my corporate days and learning and development, or as in encouraging my subject matter experts to start their training with a story.
[00:06:13] And why, because that's how we learn stories, open up for emotions and make facts and figures colorful and make it stick. Then there's the stories we tell about ourselves and we're unaware of them less. Sometimes other people will point them out to you. And that's my, I'm going to say expertise as a coach, sometimes holding up the mirror to let the other person know.
[00:06:42] Do you hear what you're saying about yourself? Um, do you know, storytelling is an effective tool that's used in communication to influence and change behavior? But, you know, the stories that we tell about ourselves can really influence our beliefs and whether we think something's possible for us as well as affect the outcomes.
[00:07:07] So we need different stories for different situations. And, you know, we also need to be aware that we always have a choice about what story do we want to tell this? Let's give a global example. What story are we all going to be telling about the pandemic? I'll leave that one with a question, mark, but going back to hearing loss, what story do you want to tell about your hearing loss?
[00:07:32] Are you a victim or a survivor? And you know, just to highlight again, you can change your outcomes by changing the story.
[00:07:44] Carrie Spangler: I love that. I think storytelling is so powerful and you just put it, those words in such a way that makes us realize the importance of storytelling from many different angles. And I think after reading your blog that you did, um, I.
[00:08:05] Um, it seemed that you had to rewrite your own story as it comes to your hearing journey. So can you share a little bit more about that? How you read about your own story, about your hearing journey?
[00:08:17] Karin Weiser: I, um, yes, so I found out about my own hearing loss when I was 15 and, uh, that's going back more than 30 years and I was basically told to go away and get on with it because there's nothing we can do.
[00:08:34] Um, neither my parents, or I challenged that now, given that what I know today and when it was not that I'm that old, but it was in the late eighties. And I have an unusual hearing loss where half of it is pretty normal and the other half is pretty bad. And I actually believed that there was probably nothing around at that time technology wise that could help me.
[00:09:02] So I did just go away and get on with it and spent the next decade, living my life, studying languages, traveling, living abroad, teaching English around the world and getting a degree in, in languages, Danish and German, and I have had in France. So I, I speak three European languages. And when I started my first.
[00:09:28] Permanent full-time job, mid, mid twenties. It was in London and that was in the late nineties. And I experienced discrimination in the workplace. I had never been introduced to any information about what hearing loss meant. I had no tools. So my initial reaction just brought up all the feelings of.
[00:09:56] Embarrassment, not feeling whole, I didn't know what to do. Although I knew some of the things I couldn't do. And this was related to the particular job I couldn't transcribe from recorded conversations because I would not get it all. And I struggled with a role as a kind of switchboard taking telephones and passing them on to the consultants.
[00:10:19] In an attic, what was working in an attic? Five people, fax machines, you name it. Background noise is a killer. As you know, Carrie and I was demoted to shredding paper. I was deeply unhappy. I found another job and again, shied away from. Dealing with it. Although I did see a consultant in Harley street, but again, in those days, hearing aids were super expensive.
[00:10:50] I didn't have the money for it. And I considered myself living in a really noisy city and I just thought, but you know, there were many hours in my life where it was okay. I wasn't struggling. And. Cutting long story Short time when worked abroad again a bit more. And I ended up moving to Denmark in my late twenties and I was told, Hey, hearing aids are free here.
[00:11:14] I did explore getting two. And within a couple of years, they ended up in a drawer. I did not use them. I later understood more. What had happened. I had not received the emotional support that I needed. I have not received the patient centered care that I know that Ida Institute. Is promoting. And a few years later.
[00:11:40] Another story short, I decided I kind of pulled myself together and went back, go, right. I need to get some help. By then there was such a long waiting list in the public sector that I went private. I was in my late thirties at this point and I got my first hearing aid and this audiologist became my guardian angel in disguise.
[00:12:04] And that was my first experience of patient-centered care. And she dealt with the emotional side of getting a hearing aid and supported me almost for the next decade before I had got. Bad or that bad that I needed a cochlear implant and had to go back into the public sector. I know it was different from country to country by that because a cochlear implant belongs to the hospital sector, here in Denmark.
[00:12:32] And, um, yeah, so I struggled for many years, but a lot of it, I, I did innately, I developed my own, know how of what to do, but from. Just for example, in meeting rooms, making sure I sat with the window behind me so that I didn't have bright light coming into someone's face and asking people not to chew and speak at the same time.
[00:13:04] I mean, or to face me, but people forget, even though they know you have to keep repeating it, that becomes tiring and itself. Um, yes, it's been quite a journey. Do you have anything else to sort of add here before I go off on a tangent,
[00:13:23] Carrie Spangler: I kind of wanted to think back what you said, that the one doctor told you when you were 15 and your family, that there's nothing we can do and go home and get on with it.
[00:13:36] Did those words impact you at all?
[00:13:40] Karin Weiser: To be honest, not really. Only to the extent that that was what I used as my guiding star on that point though is not until we can do. I just have to go in and get on with it. And honestly, in the next decade, there was nothing that stopped me doing what I did. Yes. I had some situations when I struggled.
[00:13:59] Yes, I was no good. I couldn't have a proper conversation with me when I was at a disco, but most of my friends would remind me, nobody came, you know, you ended up sometimes building up little things of all the things you can't do, but people remind you, this is difficult for us as well. So it's even more difficult for you.
[00:14:16] And I have the kind of personality that's pretty determined and I persevere. And I kind of rolled my sleeves up and decided I decide what I can do, but obviously wind forward 20 years. Some of the things that I, or the list of things that I couldn't do was getting longer. And that's when I realized. My hearing was getting down and because I had moved around and lived in so many different places and switched from different or a couple of different audiologists, I didn't have somebody who had my hearing curves for the whole time.
[00:14:56] I didn't have that evidence but. You don't really need that to make that decision at the end. When you, when you know that you are a cochlear implant candidate.
[00:15:07] Carrie Spangler: Yeah, which I think kind of gets to my next question. Could you just share more about that journey to the cochlear implant?
[00:15:16] Karin Weiser: So it's something I didn't really know much about and you just, you just see the device on people's heads.
[00:15:22] Um, but I had, it was during the autumn of 2016, I had experienced that. Sometimes some of my colleagues were actually quite near, but I was saying, come closer. I can't hear you. And usually I wouldn't have an issue with their voice because there were some, as, you know, two pitches that are more challenging than others.
[00:15:46] Um, so I went to see my audiologist and, um, we did a hearing test and she said, I think it might be time for you to explore a cochlear implant. And I had to push myself back into The public sector and it took a few months to get an appointment. And then I went through various tests and that was a bit of a slow journey to get to those appointments, those initial appointments.
[00:16:09] But I remember the doctor sitting there and saying to me, we think you'd be a candidate and it would have a high. How can I put it? There's a really good reason, um, risk or opportunity for this to work for you. And he gave me the reasons is that you're, you're a linguist. You do something the rest of us don't do.
[00:16:39] And. Everything just, I mean, I was tested in Danish and English is my mother tongue. So I was obviously probably a scoring a lot less than in another foreign language, which is a bit of a mumbly language. Um, I don't know. I think it was like he held up a mirror to me and I didn't see that. I, I didn't want to wear the label that he gave me.
[00:17:00] You gave me a label as you're severely hearing impaired, and I'd always just sort of worn a label. That was, oh, I don't hear so well, you know, um, if you look at the meaning of those words, there's quite a bit different. So that was a shock in itself to actually acknowledge that I'm severely hearing impaired.
[00:17:20] But that is this sort of label. You have to have to be a candidate for the process. And I went through the various tests, brain scan balance you name it. And I think when the, the letter came through in the post and I saw it in black and white, that I was officially cause his estimate. It was only an estimate that 4bmonths later, I'd done various tests.
[00:17:48] Then that made me realize I've got to do this.
[00:17:54] Carrie Spangler: Yeah. I think one of the things that you said in your blog, um, you have a quote by Tony Robbins that states it is in the moments of decision that your destiny is shaped. Can you share, it sounds like that was kind of one of those moments. Can you share more about how your mind shifted and that impacted you?
[00:18:16] Karin Weiser: And, you know, it was seeing it in black and white. And I had obviously read that quote about the same time I realized I've come to the end of a road where I had nothing to lose. Of course, I didn't know what was waiting for me, but I had reached out to the international cochlear implant Facebook group a few months earlier, just as I had started these tests.
[00:18:40] And I remember two Comments really stick with me today. And I have written about them in the blog. One of them was somebody had said,
[00:18:54] expect nothing hope for everything. And I thought, great. And another lady had written make sure you're 100% ready. Don't don't. Do anything you don't want to do, make sure you, and I know she was talking emotionally, make sure it works a hundred percent ready. And that's the one thing I'm going to say about the diagnosis to not once.
[00:19:18] Did I feel any pressure I was told I could complete all these tests and then once you get the letter in black and white, if I didn't want to do it, I could put it on hold and these tests would still be valid. And it could be six months or two years before I have to, I could make the decision. And, and that was it really.
[00:19:40] I know there's another thing that I had told you. I told myself during the, the journey of studying my hearing loss and coming to terms with it, I had often said to myself, what doesn't kill you, makes you stronger. And yes, there is a risk and any operation that you might not wake up. I mean, that's just like, well, you know that one, but it's minimal.
[00:20:01] If you're a healthy person and you're going in for something that's not life-threatening. So I've kind of just decided to do it. And that was at the end of September. By the end of October, I had a date with a surgeon and I made the operation date with him for after Christmas. And I chosen the color of my device and which device we could choose between four different products.
[00:20:27] And I just sort of did it
[00:20:30] Carrie Spangler: . So once the ball got rolling and you made that decision, but I think your point. Yes, we have to be a candidate just from, you know, the hearing test itself. But that emotional part and being ready is important too. And I don't know if whatever, a hundred percent, but we have to be at least more ready than less ready in that kind of a situation.
[00:20:56] I know for me, it took me a while and I'm an audiologist to get to the point where I was mentally ready to make the decision too. So more
[00:21:06] Karin Weiser: than I did, you know, you probably have more information about hearing loss tools, you name it. So, so that, that, like you say, I think when you are emotionally ready, it increases your outcomes.
[00:21:19] Or gives you a higher chance of being open to all the different things. So I knew some facts and figures of what I would experience with the Mickey mouse noise to start with, because I still had some natural hearing and a hearing aid in the other ear. It was just funny to start with. And I must admit that phase when disappeared quite quickly for me, I still have to go back and think of some funny situations.
[00:21:47] They're actually five days after coming back to work after my activation. So I'd had five days of double up Mickey mouse noise. I did a presentation in front of 150 people, but I chose to take my. Device off because it was too confusing and I had. Um, my boss has already questions. You're going to repeat it.
[00:22:10] Cause she was sitting right in front of me because I was really worried about not hearing the questions from a big auditorium, but those are the kinds of things. And I just thought I've got to do this because it was holding on to who I was and what I could do, but I took it up. I didn't wear it because I didn't want that noise to, it was confusing.
[00:22:29] Carrie Spangler: Yeah. So I'm five days out. You're still, your brain is. Trying to figure out a lot of different information at that point in time. So there's not enough experience at that point. So is there anything that you've learned through this whole process
[00:22:47] Karin Weiser: to share with others who the going through it, but tell you what, going back to the stories, you know, when I think back to my journey, I did not have access to success stories. I did. This was three years ago. Podcasts only just starting then they were not the norm. They're becoming more and more readily available.
[00:23:10] I lacked information. I lacked, I lacked information with people who are living in a foreign country and dealing with two or more languages other than the mother tongue. And I think what's nice is to share a success story, to give people hope. Why can't my story or my journey happen to other people. I know it's very different depending on your starting point.
[00:23:39] And you know, more about that one than may with the types of hearing loss there are, and there are even people who are profoundly deaf, who are getting cochlear implants and hearing things for the first time in their lives for you. And I it's, it's recognizing sounds that we've lost from our past because.
[00:23:58] I've always been part of the hearing world. Um, as I suppose, just like getting hope, but hope also in the way the work you have to do on yourself to be emotionally ready. And for some people that might be researching technicalities and for other people that might be recruiting people to be part of your support group, whether that's both in the workplace, as well as in your private life.
[00:24:26] And, and for others, it might just be building up that trust and you,
[00:24:34] Carrie Spangler: no, those are all good. And I think you have a point of view. Finding that support network is so important. Um, and your point of sharing your story is so important too, so that others can learn and, um, started their journey wherever they might be. Um, everybody has a different starting point, but those stories that we're able to share.
[00:24:58] It impacts people in different ways. And I think your whole point of storytelling is so critical, but other people, um, to understand as well. So going back to your, um, profession of coaching, um, and coaching others professionally, you talk about own it, walk it and talk it. Do you have an own it, walk, talk it story that you want to share about, um, recent and bad events and your cochlear implant journey either personally or professionally.
[00:25:31] Karin Weiser: You know what I'm going to say? Uh, everyone talks about owning your own story and that everybody we've got, everyone's got flaws. And some people are really afraid of sharing them, go through life, feeling embarrassed by them. I've been there with my hearing loss and I've got to the point where. I'm using it.
[00:25:52] I've turned it around as a strength and the opportunity to blog for the Ida Institute has been out there to share. Hey it's okay. Yes. I've got a bit of a silver lining story in terms of that, the cochlear gave me some hearing back that I never thought would be possible, but it's as wish I'd known. I know you've got your own one.
[00:26:14] It's not been an easy one to get there, but everybody's got something, whether it's a. And, uh, handicap that you can see or perhaps a health issue that makes them operate under par. Um, but it's part of your story. So I don't hide hide anymore. And even though I can hear some amazing things, I still have some limitations and I'm now armed with tools and better at communicating what I need to make me function in society.
[00:26:50] I'm putting up my boundaries for saying no. Um, I'm actually really super grateful to technology. I mean, I just think about the pandemic and the amount of online communication I've had to do in the virtual space with videos. And I've been able to hear without the video where, before it was always a needed the video and the podcasts and audio books and TEDx talks that I've been able to.
[00:27:17] Listen to and, and grow from. Um, you know, I just wanted to say, coming to terms with a disability is a bit like eat, eating a big cake and not every bite tastes nice. And sometimes, you know, you can't eat it all at once, so we need to digest and then move on to the next phase. And I know for many years leading up to getting the cochlear, but not realizing that that was part of my journey at the time, but just living with hearing loss.
[00:27:54] I was fed up of going to the, you know, another bit of technology that I needed to try out and another appointment. And I just wanted to get on with my life, but I realized it's because I couldn't do won't anymore. And I didn't want the attention. I just wanted to do what I wanted to do, you know, enjoy my life.
[00:28:12] So it's about that one bite at a time. And not everybody is tasty, but. Once you accept yourself. And I suppose a little bit of self compassion and self love coming through here because when you embrace your imperfections, life becomes a bit easier and I'll have to say. I don't really think about my hearing loss on a daily basis.
[00:28:37] I do in terms of just basic care for my device. And, um, I have moments that I really enjoy my quiet time, so I don't put my device on too early in the morning. And there are some advantages, but it's just a, it's not the elephant in the room anymore. And I'm so grateful for that. I put it in perspective, put it that way.
[00:29:01] Carrie Spangler: Yes. I like that. The cake analogy it's it does put things in perspective. So, and it isn't, you know, it isn't always tasty and other times it, it tastes really good. Right. And it just kind of, um, accepting all of those points along that journey. And I love your point about sharing. Sharing the silver lining, but also sharing like some of the struggles and challenges along the way so that other people realize, Hey, this not every person has a walk in the park, right.
[00:29:36] I'm experienced with it. So I think knowing that other people have these challenges along the way makes your journey a little more, you're able to self accept it a little bit more when you hear those stories from other people.
[00:29:52] Karin Weiser: As well as remembering not to have that victim story, but the survivor and, you know, I'm reading Glennon Doyle Untamed book at the moment. And I just, the other evening I dip in and out, and there was a quote that she went past on her lunch break to want to reread on her fellow teachers wall or something that said we can do hard things. And I've been saying that to myself too. And it's actually helped me when I think of what we've gone through on the pandemic.
[00:30:23] I thought, Hey, I've actually gone through something. That's a bit harder on a different level of personal level. And just before we opened up for the podcast, we talked about another quote that I love to share about Steve jobs. And this I think is really relevant for anyone on a journey, a hearing loss journey.
[00:30:44] No, you, you can only connect the dots Looking back, but you have to trust forward and yeah, you don't know what the future is going to bring, but we are so lucky to be living in such a society that is full of technology and things are changing all the time. New gadgets new everything. So it's all to our advantage.
[00:31:09] Carrie Spangler: It really is. I love that quote too. So is there anything else that you want to share that I didn't ask you?
[00:31:20] Karin Weiser: Um, so I work with international professionals who are ready to write the next chapter of their career story, but I also have a dream of actually working with other hearing impaired people. Who needs support to get to grips with their hearing loss journey or to prepare for the cochlear implant, or just actually deal with a hearing loss while they discover what their next career chapter is going to be.
[00:31:53] And perhaps they are fully, you know, there's no issues there, but they're sort of still exploring. I'd really love to work with people like that who might needs support from someone like me, where they can see, Hey, anything is possible because that's what coaching does for you. It removes your barriers and your obstacles and helped you see possibilities that you didn't think were open to you.
[00:32:16] And I think as a hearing loss individual, we we've had to change that perception of ourselves because there was a point when there were many things we couldn't do.
[00:32:27] Carrie Spangler: I love that. And then you have that vision from a personal perspective of going through that process and taking your professional expertise of coaching and just kind of putting that into perspective, but other people too, helping them put that into perspective for themselves.
[00:32:46] Karin Weiser: Definitely. And you know, I will be the biggest cheerleader. And accountability buddy, because I do have this belief that anything is possible. And I know that can be used to be put into the perspective. You know, we're not all going to fly to the moon, but do you know what I mean? And, and we are the ones that are getting in our own way.
[00:33:08] Carrie Spangler: Right. We are unique and that's what makes us our individual. And we all have different dreams that we want to achieve. So I love that you want to kind of put both your personal journey with your coaching perspective. I think that could be very helpful for people. So if people are interested, individuals who are deaf and hard of hearing or other individuals who want to, um, have some coaching experience, how can they connect with you?
[00:33:37] Karin Weiser: So you can look at my contact details and more about me and, um, on blogs and everything on my webpage, which was my name which is Karin Wiese.com. And you'll put that in the podcast notes and I'm also very active on LinkedIn and, um, yes, so email contacts from my website, and I'll be happy to, to have an initial chat with people and see if there's some chemistry there, but also if they just need to.
[00:34:05] Share that perspective and need some support.
[00:34:10] Carrie Spangler: Thank you. I really enjoyed this opportunity to connect with you and I think your. Ideas or your passion for storytelling is so important for other individuals and listeners to recognize that their story holds a lot of meaning and what we choose to tell is so important for others to hear.
[00:34:33] And it does carry a lot of passion and weight and influence when we are willing to share. I share stories with others. So thank you for sharing that. And thank you for sharing about your cochlear implant journey, because I know that is so important for others to hear who might be thinking about it or in the middle of the journey and want to have that support with others.
[00:34:57] Um, but again, I want to thank you so much for coming on the empowEAR Audiology Podcast. Is there anything else you want to share before we wrap up today?
[00:35:08] Karin Weiser: Yes. Just one last thing. That's come to my mind now about our own stories and what we choose to tell about ourselves. You know, life's a journey and we are constantly changing.
[00:35:18] So your story needs to change as well. So don't think that you've ever going to have a story and that's going to be static and that's it. You know, it needs to be changed as you go along and as you evolve, because we are different people from what we were 10 years ago.
[00:35:36] Carrie Spangler: Right. So there's different chapters that can make you keep adding on to your story.
[00:35:46] So that's a good thing. Change is a good thing. Uh, well, thank you so much for being a part of the podcast. And, um, I will put all of your information in the show notes so that our listeners will be able to reach out to you. Uh, if they want to connect.
[00:36:04] Karin Weiser: Thank you so much, Carrie. And I look forward to keeping in touch and, um, wish you all the best as well.
[00:36:09] And thank you again for this opportunity.
[00:36:12] Carrie Spangler: Thank you.
What did you think of that interview with Karen today? For me, this conversation validates why storytelling is a critical piece of the cochlear implant journey, the hearing loss journey. Whatever journey you might be on whether you are a parent, a patient or a professional. Own it Walk it talk it that's what Karen quotes parents own it. Walk it, talk it story about getting her hearing back through the cochlear implant journey is a powerful example of how to look at the silver lining and be grateful for the possibilities that open up. When we realized the power of taking small steps along the way to embrace imperfections.
[00:37:03] Karen, in this interview, she quotes Steve jobs, his quote, saying you can't connect the dots looking forward. You can only connect them looking backwards. So you have to trust that the dots will somehow connect in the future. She compares this powerful quote to her own cochlear implant journey. After this episode.
[00:37:28] Karin offered me a one hour personal coaching session. And it was just an amazing experience for me. Karin's personal experience of having a cochlear implant and her professional experience shines through and in a unique way that provided a positive coaching session. During this session, Karin asked just the right question and allowed me to have.
[00:37:56] Some aha moments about refining my own vision and how courageous storytelling with the words create a positive ripple effect for others who are willing to listen. She also challenged me to start a gratitude journal, which I challenge all of you to do as well to refocus my vision and achieve small and long term goals.
[00:38:19] I just wanted to say a huge shout out to Karin, but her storytelling and coaching experience. If you want to learn more about Karin, look it up in the show notes and you can click on a website and get in touch. Thanks again for listening to the empowerEAR Podcast, and I hope all of you will leave me a positive review, write a positive comment, and please share this podcast with all of your friends.
[00:38:50] Thank you. And enjoy.
This has been a production of the 3C Digital Media Network.

Episode 19: empowEAR Audiology - Dr. Angela Alexander

Announcer: [00:00:00] Welcome to episode 19 of empowEAR Audiology with Dr. Carrie Spangler.
Carrie Spangler: [00:00:16] Hi, everyone. Welcome to the empowerEAR Audiology Podcast. I am really excited to introduce this podcast with Dr. Angela, and I hope you enjoy this conversation as much as I did about auditory processing and auditory processing deficit. Dr. Angela has so much personal and professional knowledge to bring to this topic.
And I think you're just gonna feel her passion and purpose come through. When you listen to this podcast conversation, Since we have had this conversation a couple of weeks ago, I wanted to let all of you know that Dr. Angela has just released her own podcast called Between Two Ears. And she's also active on clubhouse, the social media app.
And you can join her moderated conversation on Monday nights in the room, talk nerdy to me. So again, I hope you enjoy this conversation with Dr. Angela about auditory processing. All right. Welcome everyone. Let's get started with today's episode of empowEAR Audiology.
I am really excited to introduce our guest today. Dr. Angela Alexander. She is a doctor of audiology and she graduated from the university of Kansas in 2010 with a doctor of audiology. She has a passion for the treatment of auditory processing disorders. Angela was privileged to have been mentored by Dr. Jack Katz, who is a world leading expert on auditory processing disorders.
She worked with Dr. Katz for seven years, between 2004 and 2012 in her knowledge and expertise. Now Angela works as an audiologist in Australia. She has what is called the auditory processing institute. And she's looking to train her peers in the skills needed to provide effective APD diagnostic and therapeutic options.
She aims to double the number of SLPs and AUD professionals providing effective auditory processing services through the app online APD masters course by 2022. Welcome Angela to the podcast. And thank you for being here.
Angela Alexander: [00:02:44] It is my pleasure.
 Carrie Spangler: [00:02:47] I'm really excited to have you today that you won't be the first person that I have on the podcast of what you're talking about, auditory processing, so I'm really excited to have you!
Angela Alexander: [00:02:58] Well, congratulations on finally talking about the most interesting stuff.
Carrie Spangler: [00:03:03] Well, it was bound to happen sometime. So I'm so glad that you are here. And I just wanted to say I'm so excited that we got connected on an online platform.
Angela Alexander: [00:03:15] Yeah. Who saw that coming?
Carrie Spangler: [00:03:18] It's so amazing how I could meet someone on the other side of the world and through a closed Facebook group and then clubhouse as well.
Angela Alexander: [00:03:27] That's exactly right. Yeah. It's amazing. I love it when social media does good things and meeting you is one of those good things.
Carrie Spangler: [00:03:39] Yes. So I just knew when I heard you talking on clubhouse talk nerdy to me a group, and you had so much passion for APD. And so I knew I needed to immediately reach out to you to see if you would be a guest.
And here you are. So thank you for being here all the way from Australia. Early in the morning where you are, late in the evening for me here in the United States. But I thought before we kind of take a deeper dive into APD, I would love to ask you, how did you get involved in Audiology?
Angela Alexander: [00:04:17] Oh, wow. So when I was born, my mom was a home healthcare worker. She would go, she's a nurse and she would go to different homes to make sure that the children were like developing appropriately. And she noticed that I wasn't responding to sound. So she she took me, she had an audiologist come check me out and you know, this is back in the 1980s. And they noticed that I wasn't startling and I just wasn't responding in ways that she thought were typical.
Fast forward and I had audiograms constantly done when I was a kid. There were some complaints that I wasn't paying attention or I wasn't following instructions. And so they gave me a diagnosis of ADHD. So now looking back on things, I wonder if I may have had a bit of auditory processing disorder. I had been specializing in APD for about four years before I really realized that it probably applied to me as well.
So I'm wondering if I had, yeah, some processing difficulties growing up. I've been able to achieve, you know, fairly well, but I wonder if that could have been easier sometimes.
Carrie Spangler: [00:05:40] Yeah. I'm sure. So you kind of have this personal connection to your professional drive and passion.
Angela Alexander: [00:05:46] Yeah. One of the regrets that I have is not having an APD evaluation prior to getting started with this work.
With the courses that I run online, the very first thing I do for an audiologist is I put them through the central test battery. That's Jack Katz's battery of tests for auditory processing disorder. So, I run a test over zoom, and we check what an audiologist’s processing looks like. And you'd be surprised how many audiologists actually have difficulties with auditory processing disorder.
It's amazing.
Carrie Spangler: [00:06:24] Yeah. Well, it's definitely an important topic to explore and I'm excited to explore it today with you. So before we go a little bit deeper, I just want to ask, how did you end up in Australia too?
Angela Alexander: [00:06:37] My husband and I moved New Zealand 10 years ago, and we love New Zealand. In fact, a majority of my close friends live there.
But New Zealand is colder than Australia. Like it's cold at night and you know, we love the ocean. Right now being in Australia is a really nice blend of the USA and New Zealand. You get kind of like the New Zealand culture, some cultural components of New Zealand, and then commercial aspects of the U.S. It's a really cool a place to live. We live on the sunshine coast, which is, I mean, if you look at Australia in comparison to the us, it's like, New Jersey area.
Carrie Spangler: [00:07:24] I got ya. I have a picture in my head now.
Angela Alexander: [00:07:28] Yeah.
Carrie Spangler: [00:07:30] Oh, wow. So that's exciting. Maybe someday I'll get to visit you all the way in Australia.
Angela Alexander: [00:07:36] Hey, the spare bedroom has the bed made and ready to go.
Carrie Spangler: [00:07:43] How did you really, I know you kind of touched on it, but what kind of drove you into really diving into APD?
Angela Alexander: [00:07:51] Oh, so it was 2004, April of 2004. And I was in my last semester of undergrad, and I had bowling class. Right after bowling class was my speech perception class with Dr. Sarah Ferguson.
And I wanted to bowl one more game that day. And so I was really late to my speech perception class. When I got in there, I looked up and there was a man teaching and I thought, oh no, I didn't realize we had a guest lecture. There was only one seat left and it was front and center of the room. So I went and sat down and I tried to figure out what this guy was talking about.
And he was talking about auditory processing disorder, and it blew my mind like. I, my eyes must have been huge, because it felt like I was learning about something I had always known. And I didn't, like I said at the time, I didn't realize the relevance to my own life, but I just couldn't believe it.
And at the end of the lecture, I went up to him and I said, I have got to see how you test for this, how you treat it, because I cannot imagine it. And he said, come to my clinic any time. I work in Kansas City, and I said, sweet, okay, let me email you. And he was like, okay, it's my name@buffalo.edu. And I said, what's your name?
And he said, my name is Jack Katz. And here I'm like holding his book and I'm like this guy. Right. But if anyone knows Jack Katz, you know, he's humble, he's kind, he's hardworking. I mean, he just turned 87 last month, and he's still working clinically. All right. So I think a lot of people don't realize the level of ingenuity he has built into his evaluation and treatment methods.
Like you see a client you're able to categorize the difficulties. They're having you do a test, and then you can categorize the problems on the test. And then you treat based on those different categories. It's like, I cannot believe what an ingenious set up he's made. And he just, I think that, I think that the profession of audiology is about to realize that we have to be so much more than dispensers.
And one way to do that is to look at the specific difficulties a person is having and have us treat it. Why not?
Carrie Spangler: [00:10:35] Right. Essentially you had this amazing teacher, Dr. Katz. Can you just give us like a 360 degree definition of APD, but people that might not have all of the knowledge that you have.
Angela Alexander: [00:10:51] Absolutely. So, first of all, I like to put it on the same continuum as hearing loss, because I think when we do that, it helps people who work with dispensing feel a little bit more comfortable with this. So the way I like to put it on the same continuum, is looking at Erber’s model of auditory skill development.
So think about it as a staircase with four steps on it. The very first step is awareness. If a person isn't aware of sound, they may have hearing loss or auditory neuropathy or hidden hearing loss. We deal with issues of awareness with amplification, with devices. With cochlear implants, things like that.
So what we want to do with awareness is we want to boost that signal. The second level, after we get past awareness is called discrimination. Can you hear the difference between two sounds? Can you hear the difference between mm/ng. And now you've gone through the cochlear implant process, and you know that you had to learn how to do that.
You had to teach yourself how to hear the difference between these two things. Once you get past discrimination, which is step two, you have to get to identification, which is step three. Not only do you know the difference that there's two sounds that are different. Do you know that that is M and that is N you need all three steps to get to comprehension, to understand what is said.
And I think a lot of audiologists think we can go from awareness and jump to comprehension and. We miss out the important part, which is the brain. And so I think a lot of us as audiologists and dispensing have had a client come in and based on their kids' case history, we're like, wow, this person has like a moderate hearing loss.
They've never had hearing aids. I'm going to change their lives. That's right. We do. We put them in the booth and, and behold, their audio gram is within normal limits. Then it's confusing. Wait, it looked like this person had a problem with awareness, but it was actually potentially with discrimination.
It's because it's at such a low level that it looks to us. Like it's actually hearing loss. We've also had clients who come in who have hearing loss. We put hearing aids on them and they still don't go from awareness to comprehension. So I'm going to say something really crazy. It is possible to struggle with auditory processing.
Even if you have a hearing loss. In fact, it's amazing that more people with hearing losses don't have auditory processing problems. So auditory processing is what the brain does with what your ears hear. People will say, does my child have auditory processing? And I hope they do because auditory processing is the function.
Auditory processing disorder is the dysfunction. So, so if to me, and this is a different definition than most people would use to me, auditory processing is where auditory skills effect Well-being. all right. Is your ability to understand what understand and remember what you're hearing, affecting your ability to have a great life.
Carrie Spangler: [00:14:41] I like that, but it puts everything into real life perspective, right? It's about the whole person. And if something, if you're not processing information and you know, As human being that's communication is key. So if we can't communicate with others, then your wellbeing is going to be impacted.
Angela Alexander: [00:15:00] Absolutely. And so for me, like, I like to use the HHIA, which is the hearing handicap inventory for adults in particular. I don't like to use that second age cause it's just lame. So I like to call it the hearing inventory for adults, but just in case anyone's looking that up, it's a free tool and it's 25 questions and you answer yes sometimes or no, and at the end of it, you get a score. And so if you see a person who has a normal audiogram, but their HHIA score is really high.
This is a red flag that there's something else going on. Or if you have a client with a hearing loss and their AHI score is really high and you put hearing aids on them and the score stays high yet again, another red flag.
Carrie Spangler: [00:15:54] Yes, that hearing aids and cochlear implants, aren't just going to fix it. There's gotta be some steps in between, right?
Angela Alexander: [00:16:00] Absolutely. And we need to partner with those clients to help make that a faster, more efficient process. Yes,
Carrie Spangler: [00:16:10] I like that. So I'm going to like put a little twist in the conversation just to hear what you have to say. So I work in the schools and, and then talking to other people too.
But I think within my profession at some different universities and even a lot of outside of our profession, there is belief that maybe APD does not exist. So can you, what is your take on that? If someone says, you know, that doesn't, that's not a
Angela Alexander: [00:16:43] real thing as healthcare professionals. We need to do no harm.
And you know what, I'm going to honestly say anyone who pushes the idea that auditory processing disorder, isn't a legitimate issue is doing harm. So just because it's funny, I, I actually had a professor once who said auditory processing doesn't exist. Cause that stuff happens to me all the time. So it it's it's comments like that, where you see a lack of empathy in a profession that's supposed to be the one who advocates for people with hearing disorders.
I don't understand where we fell off the bus with this one, but I think that there is we actually have C ABR complex ABR that can pick up difficulties with auditory processing with, with this equipment. And that is going to change the conversation from, is this a thing too? Oh my God, this is a thing we need to treat it.
I can't tell you how upset. The clients that I work with feel after they've been to hearing test after hearing test and have been told that there is no problem when these people have an HHIA score, 88 out of a hundred and a hundred is the worst you can be. And they're at 88 with a normal audiogram and people have told them.
There is no problem. And my, my university was very skeptical about auditory processing disorder. And I'm going to actually say something here that I have not said publicly. But my. I applied to get my master's in speech, language pathology from a really highly
Angela Alexander: [00:18:36] respected university after my AUD to become dually certified.
And I was rejected because of my interest in APD.
Carrie Spangler: [00:18:45] Wow. Yeah, that's it that's alarming. But I think your point of patients coming in and saying, I have difficulty. Processing with auditory information and you give them a questionnaire and they have a normal audiogram. We, we can't just ethically and morally be like, see ya, because there's obviously something that they are experiencing.
Angela Alexander: [00:19:13] Exactly exactly. It breaks my heart. It's so funny because you know, if we look at hearing loss, we say, Oh, the client has so much denial, you know? And so we have to prove to the client, they have a problem. A lot of these people who have an auditory processing disorder come in and they have no denial.
They're like, I am really struggling. And for some reason, the clinician has more denial. But then if we look at other things like with tinnitus, the clinician has no denial. The clinician agrees and believes that the client has a problem with Misophonia. The clinician understands and believes that the client has a problem.
But with auditory processing disorder, a majority of clinicians do not believe that there is a problem.
Carrie Spangler: [00:20:04] Yeah. That's so hard. So what do you think audiologists can do to help people who come into the clinic or into the school? Start and say, they're struggling with auditory processing. What could they do and what would you do as an
Angela Alexander: [00:20:20] audiologist?
There are two things that you should do depending on the population. If you're working with adults, bring that HHIA form into your clinic. And I start utilizing it immediately. If I don't have it, I feel like I'm flying blind, honestly. So you need to see what that score looks like. And if it's below. 14, maybe things are about within normal limits, but if it's higher than that, that person may need an extra referral.
The second thing that I was going to mention is knowing who in your area does this work? So if you don't, so if you don't know who's doing this work, you can go to an online searchable map that I've created, where you can put in your address and find out the closest specialist in APD. And if you can't find one become that specialist, we've just added the very first APD clinician in Las Vegas and Nebraska in the last three months.
Wow. Unbelievable. Yeah.
Carrie Spangler: [00:21:29] And is that because of your course and everything, or they found another
Angela Alexander: [00:21:34] way? So, so when I, when I started this map in 2008, I added everybody who said they were specializing in it. And there were 250 people on the map. You know, if 5% of the population have APD, that's 300 million people worldwide who speak English and 250 of us doing the testing, then I.
I didn't update in 2018, still 250 people. That's all that we're doing. The testing or treatment. I did another update. I'm trying to do two different things to increase the number of professionals I'm running those online courses. And then I'm trying to search out people who are doing the work, who aren't on the map yet.
So our current numbers are 376. So we've gone from 250 to 376 feeling really good about that. But I've got my eyes on 500.
Carrie Spangler: [00:22:30] Well, that seems like you've had a good jump so far. So that's a good, positive thing too. We're trying to think some of it has to do with the undergraduate graduate AUD programs as well, where, you know, people aren't either they're not learning enough about it or they don’t spark nterest.
Angela Alexander: [00:22:53] 40% of graduate programs do not have a course in auditory processing disorder. And if we think about the fact that out of a thousand children, right, we may have one to five with permanent hearing loss, whereas. Out of a thousand children, we have 50 to a hundred children who may have auditory processing disorder.
So it is much more prevalent even in the, you know, early childhood education then than hearing loss. Yet we have very few clinicians doing it. The latest ASHA Survey said that 1.4% of audiologists routinely test auditory processing disorder. That is just insane. And I mean, there's a lot of, there's a lot of things that we have to undo from our profession.
Like there was this old school belief we couldn't test before seven years of age. Because the system wasn’t fully mature, what system do we wait until it's fully mature to help it develop. That is just crazy. Early intervention is the wave of the future. How is that different with auditory skills?
Carrie Spangler: [00:24:13] So what kind of testing with screenings do you do with some of the below seven kids?
Angela Alexander: [00:24:21] That's a really good question. Okay. So for screening, like you want to have a really good conversation with the parents because it is fairly obvious when it's child should have a referral for an auditory processing test because these parents come in, they, they say, Oh, I really feel like my child has a hearing loss.
You do a hearing test. And it's like, okay, actually that doesn't seem to match up with what the parent was saying. That should be an immediate referral. Also you can use acoustic pioneer, feather squadron. So Matt Barker created this wonderful software and it's an app that helps to assess some auditory processing abilities.
You know I would say that I really liked the app. It doesn't necessarily always catch all of the children who are having processing difficulties. And I've talked to him because. I think his idea was let's, let's kind of take the speech language portion out of it, but the speech language portion is the most important reason why we should do an auditory processing evaluation.
Matt and I are really good friends. I have no conflict of interest saying that I absolutely use his products constantly for me. It's great because I can do an evaluation with his testing. And then in addition to my battery, and then I can do post-testing using that iPad as well. And I can get an unbiased behavioral data from that as well, some pre and post testing.
So it's brilliant for me, as far as screening is concerned. One of my main concerns that I've got with almost all of the screenings Software and. Materials that we've got, is that not all of them are very sensitive. They're more specific. And I think with auditory processing, we need to go more sensitive because we need to make sure that we are absolutely not rejecting someone for a further evaluation, if they need our help.
Did that answer your no, it does.
Carrie Spangler: [00:26:28] Yeah.
Angela Alexander: [00:26:30] Yeah, we're also trying to create this HHIC like so that the parent can answer these questions, but it's just being created, but I can share that for me.
Carrie Spangler: [00:26:39] No. So that would be like the children version that the HHIA then, so yeah, I was going to ask you if there was some kind of a checklist or, you know, screening instrument that you could.
Have parents fill out that would give indicators, like you said, that, you know, above 14 or 20 and this form, then this is a red flag to say, Hey, we need to look a little further into it.
Angela Alexander: [00:27:06] Yeah. And, and like this, there are a lot of different APD screening forms. I want people to have access to something that's free.
Okay. All right. That will help identify things. And what I think the HHIA does really well in adults is it picks up on psychosocial issues. It picks up on issues of wellbeing due to hearing problems. Now. One thing that I should say is that there's also the Buffalo model questionnaire. Jack Katz created that Buffalo model questionnaire.
And that is a really good functional questionnaire to get an idea of, okay. Are there potential red flags here that for auditory processing as well, but just looking at it. What can a majority of clinicians do something like the HHIA, maybe the HHIC, the problem with the AJC that I've got so far as parents are sometimes, sometimes have a hard time understanding how much difficulty their children are having.
Yeah,
Carrie Spangler: [00:28:08] especially the younger ones. When they get a little bit older, they can, you know, to the questions and they can,
Angela Alexander: [00:28:15] but then, then when let's say the child is a teenager, it's really easy for parents to be like, Oh yeah, my kid doesn't care about anything. Oh my kid's not as intelligent. You know, like they can apply different labels to what they're seeing.
They may think it's a behavior issue or an intelligence issue or something like that, which is really sad.
Carrie Spangler: [00:28:36] Yeah, which kind of actually brings me to another question. So. Do you see APD coexisting with other conditions a lot. And what, what do you see it mostly co-existing with
Angela Alexander: [00:28:52] any kind of neurodivergence can have a higher potential for auditory processing difficulties.
So ADHD, autism dyslexia. I mean, I think. Jack Katz said that if you look in any specific population, you're going to see a high incidence. He said, for example, people with large noses have a high percnetage, people, auditory processing disorder. So basically what we're saying is it is highly prevalent, prevalent.
If you've got any kind of neurodiversity going on, there is the potential that a, person's going to have a hard time understanding what they hear, but in a lot of these cases, Where a person is multi-factorial and has a lot of different issues. We can work with auditory processing and make that better, and we can see improvements in other areas.
So for example, I've had a couple of clients recently that I've been working with who have. Anatomical anomalies in the brain. One has no Corpus callosum. And we're like halfway through her therapy her round of therapy. There's also a child that I'm working with whose mum could not get testing done for auditory processing.
Cause she had low IQ. Why shouldn't we be helping that? Like, would we, would we say we wouldn't do a hearing test or put hearing aids on a person with low IQ? That's absolutely ridiculous. Becoming a parent has made me realize that here's this child. We want them to have the best chance in life to be the best person that they can be.
What can we do to help that child get there?
Carrie Spangler: [00:30:37] So, Kind of playing a devil's advocate for that part of it. If you have a student who may not be able to participate fully in the testing, how do you do that? Do kind of quantify that a little differently or do you kind of have a, I don't want to say a disclaimer, but just kind of some wording that says, you know, that they weren't able to fully participate.
Angela Alexander: [00:31:04] Yeah, we get as much baseline as humanly possible. All right. So we go in there, we gather as much data. We see what that data is telling us, and then we do therapy and then we do a retest. So for example w there was a child that was only able to do there's 40 items, 40 items on the SSW test. I was only able to do 10 on them.
Last October. And, and now we're just at the retest. We're about to retest him. And and I actually expect that we'll be able to do the full test. Now, Jack Katz likes to use this wording. He'll say we're going to use auditory processing disorder as a working hypothesis. You know, ASHA and AAA had these position statements that came out that said a person had to fail two tests by two standard deviations or a single test by three standard deviations and even national acoustic lab national acoustics laboratory came out and said, those numbers are arbitrary.
We cannot say that a person does not have an effect on their lives based on these arbitrary numbers. Because if a person fails a test by one standard deviation, it means that 85% of the population, it could mean that up to 85% of the population, their same age does better than they do. On a particular task.
If 85% of the population is doing better than me at something, I'm probably going to feel like this is affecting my day-to-day life. So watch this space because it's a, it's an argument that's just kind of slowly started and now it's working itself into a fever
Carrie Spangler: [00:32:53] and I you're a part of that fever.
Angela Alexander: [00:32:56] You better believe it.
See, I don't, I, you know, I don't actually care about. Auditory for, I don't think auditory processing disorders, one thing. And I don't think that people need to like lock onto that disorder. Parents need that name to know what to call it, but it's more important to find out is this person a good candidate for therapy?
Can we treat this? Yeah.
Carrie Spangler: [00:33:19] And I think in the schools, I love. That we can work with the school psychologist and work with the speech language pathologist and kind of see what testing have, you know, have and, and see. And when you do your testing and you're able to put some of these pieces together, it makes so much sense of like, what are the, what the next step needs to be and what accommodations need to be put in place as
Angela Alexander: [00:33:45] well.
Yeah, absolutely. Completely agree. I completely agree.
Carrie Spangler: [00:33:51] So what do you wish more audiologists would realize then? You kind of said it, but I just want you to highlight it again.
Angela Alexander: [00:34:01] Yeah. Yeah. Oh my God. So many things. All right. I'm going to pick five things.
I
Carrie Spangler: [00:34:09] love it.
Angela Alexander: [00:34:11] Five things. Number one, we can test for auditory processing down to three and a half years of age.
There's also neurological testing that can identify children at birth. Number two. Middle ear disorders potentially have greater impacts on life than what we had anticipated. So take those abnormal tympanograms seriously. Number three, we can test for auditory processing when there are other things going on in a person.
Sure. They can have auditory processing secondary to Other things that they have problems with, but if we can treat this and make their lives better, let's do it. Number four. We need to make sure that we are actually listening to what our clients are saying. If they say that we have, they have a problem, we need to believe them in the famous words of Gail Whitelaw Audiograms don't talk patients do.
And number five, auditory processing disorder is treatable. We can do auditory training and we can make this better hearing AIDS are not the only solution to every problem. And the moment that audiologists can realize this, we will have better job satisfaction, lower cost of goods, and we are going to