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The Listening Brain Podcast
For most of us, we must be able to listen in order to speak. Put another way, listening plus speaking equals successful communication.
Fortunately, for children with hearing loss, listening has become less of a challenge due to the availability of testing that allows early detection of hearing loss and the early use of advanced hearing technology – like hearing aids and cochlear implants.
This podcast, The Listening Brain, will celebrate listening and speaking in the context of childhood hearing loss. Hosted by K. Todd Houston, Ph.D., a noted Listening and Spoken Language Specialist Certified Auditory-Verbal Therapist, speech-language pathologist, and Professor, the podcast will explore educational trends, new developments in technology, and advances in research.
We will interview professionals in the fields serving children with hearing loss, and, most importantly, families who are supporting their children on this journey to listening and spoken language success.
And, equally, as important, we’ll also hear from adults with hearing loss who will share their unique stories and experiences about growing up with deafness and how deafness is now being redefined for future generations.
Meet our Podcaster
K. Todd Houston
About K. Todd Houston, Ph.D., CCC-SLP, LSLS Cert. AVT
He is currently a Professor of Speech-Language Pathology at The University of Akron. In a career that has spanned nearly 30 years, Dr. Houston has been a photojournalist, an Executive Director/CEO of an international non-profit organization, a clinician, published author, researcher, and an academic. This professional journey has shaped a world-view that embraces diversity and supports engagement across cultures.
Dr. Houston has a passion for ensuring that others have an opportunity to fully express themselves. Combining his journalism background with more than two decades of focused work with children and adults impacted by hearing loss, Dr. Houston has co-created a company that is committed to producing a range of content that informs and inspires.
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Just What I Needed
As a speech-pathologist AND parent of two children with hearing loss I continually look for resources where I can gain support and expand my knowledge on pediatric audiology. I have found very few Podcasts on this topic. Very excited to follow Dr. Houston!
The Listening Brain Podcast Transcripts
Episode 30: The Listening Brain - Dr. Shelley Moats
[00:00:00] Todd: Welcome to episode 30 of The Listening Brain Podcast.
[00:00:12] Welcome to The Listening Brain. I'm your host, Todd Houston. In this podcast, we explore childhood hearing loss through the lives of the parents. And families who are on this journey and the professionals who serve them.
[00:00:33] Hi, it's Todd here at the 3C Digital Media Network. I'm here to let you know about some exciting changes coming to 3C and I hope that you'll want to be part of it. We're moving our website onto the LearnWorlds platform. We should have this completed very soon. And when we are finally on the LearnWorlds platform, we'll be offering even more webinars and courses as well as being able to provide more functionality, in general, to all of our subscribers and people who visit our website.
[00:01:10] But we want to do all that, but we need you. We need you to help us out. We want to greatly increase the number of webinars and courses that we're offering. So if you have a webinar idea or a course that you'd like to offer, please send me an email ar [email protected] and I will be in touch. Back to the interview.
[00:01:39] Today, I have the pleasure of interviewing Shelley Moats. Shelley is a board certified pediatric audiologist in Louisville, Kentucky. She founded little ears hearing center in 2010, which merged with the home of the innocence Open arms children's health in 2017. Little ears will become part of the Norton children's ENT and audiology effective October 1st, 2021.
[00:02:15] So it just happened. To Dr. Moats, the most enjoyable part of her job is using science and technology alongside providing family support to help children grow into their best selves. It's extremely rewarding to develop these long-term relationships. She says Dr. Moats has more than 25 years of experience providing comprehensive family care.
[00:02:43] Pediatric audiology service. She provides diagnosis and treatment for childhood hearing loss, including hearing aids and cochlear implants. She's active on numerous committees to promote quality pediatric cardiology services at both the state and national levels outside of work. Dr. Moats enjoyed spending time with her family attending her children's sporting events, being outside and reading.
[00:03:13] It is my pleasure to welcome to the podcast Dr. Shelley Moats. Shelley welcome to the podcast. Would you mind introducing yourself and telling us more about your background?
[00:03:27] Shelley: Sure. My name is Shelley Moats. I live in Louisville, Kentucky currently, and practice audiology here, loss. I have for about the last 15 years I've been an audiologist since 1996, which sounds like a really long time.
[00:03:42] I did my undergrad at the university of Iowa still bleed black and gold of course. Did my master's at Purdue. And then after being in the workforce for about 10 years, went back to school and got my AUD online while working full-time and raising my first child. And I now am a pediatric audiologist and I love my work and I'm excited to be here.
[00:04:10] Thanks for having me.
[00:04:12] Todd: So you finished at Purdue and what was that first?
[00:04:17] Shelley: Oh, my master's degree. Yeah.
[00:04:19] Todd: In audiology. Yeah. And then did the AUD, so that's, that's a double whammy there. Yes.
[00:04:28] Shelley: It was a long couple of years, but
[00:04:30] Todd: worth it. So what led you to audiology? Was there some some experience with hearing loss in the family or relative or.
[00:04:39] Shelley: You know, interestingly enough when I went to college, I was actually a mass communications major. I thought that I wanted to be a high school journalism teacher and in the state of Iowa, in order to get your edge, your license, to be a teacher, you have to take Just kind of communication disorders, 1 0 1.
[00:05:00] And I, so I signed up for the class and I took it and I thought, gosh, this is really interesting. And then I decided, because I had electives, I was like, well, rather than just taking a random elective, I'm going to take this introduction to audiology class. It just kind of sounds interesting. Did that, and then around the same time I was actually working for The parks and rec department in Iowa city as a summer camp counselor, and we had a child attend that had hearing loss.
[00:05:33] And at the time she was using total communication, I knew a little sign. They said, Hey, can you kind of be her, her buddy? And I said, sure. And just kind of there getting to know her and her family and all of these other things coming together at the same time ended up changing my major and he was.
[00:05:51] Todd: All right.
[00:05:51] You know, it's always interesting to me, those, those sort of spontaneous, sorry, my dog is I'll start again. So it's always, it's always interesting to me, those sort of spontaneous or, or unplanned situations that come up and, and how that will influence someone. Life and career I've had. Yeah, I've had people say, well, you know, I didn't know anything about this area until this one person came in and did a guest lecture.
[00:06:24] I mean, this one lecture, it changed their whole, you know, whole direction and what they wanted to do. So that one experience kind of cemented that for you. Huh? Awesome. You keep in touch with that child or is it
[00:06:42] Shelley: we did we lost touch, unfortunately the, the family actually was from another country. And I suspect that based on kind of the timing of when we last check that they may have moved back.
[00:06:56] Todd: yeah. Yeah. And so you, you were originally thinking of mass communications. Yeah, that was my first career was journalism. Interesting. See you, you say starting the field in 1996, I can say I was in a different field actually, when we had printed newspapers. Yeah. Old school. I was so, yeah, we, this was you know, back in South Carolina and that was my undergraduate undergraduate degree was in, in journalism.
[00:07:30] And, but it was, I had a deaf cousin growing up. And so I had that kind of influence, but what was also interesting at all the different newspapers I worked at, they hired deaf people to run the printing presses. Sure. And so I was one of the few people who took the time to communicate with them because, because of my cousin, I knew a little sign and most of them had gone through the state school for the deaf and printing was one of the vocational skills that they taught.
[00:08:01] And so I just liked interacting with them. And so I ended up sort of finding deafness, even within journalism. So it's interesting. Yeah. So talk to me about where you are right now. And cause I know you're doing so much work there now in Louisville. Talk to me about the program and how many kids you're seeing and how that has evolved over time.
[00:08:30] Shelley: So we're actually tomorrow getting ready to go through a big transition. So I'll kind of give you a little bit of history and then talk a little bit about the transition. So when I moved to Louisville in 2005 I originally started at the university of Louisville in a clinical faculty position in their AUV program which was a great experience.
[00:08:53] Somewhere along the way, I kind of thought, you know, I'm seeing kids, I really want to focus on seeing kids. I have a very specific vision of what I think that should look like. And so just. On a whim. I decided to start a pediatric only audiology practice that morphed into a nonprofit and started that in 2010.
[00:09:22] And then in 2017, we merged with another local nonprofit agency called home of the innocence. And as of tomorrow, October 1st some of the outpatient programs at home of the innocents are being acquired by. What's called Norton children's medical group, which is a large health care system here in Louisville and the surrounding communities that has both a pediatric arm and an adult arm.
[00:09:49] So, so we're getting ready to go through all of that transition starting tomorrow and into next week.
[00:09:56] Todd: Oh, that's exciting. So does this, does this bring new resources?
[00:10:01] Shelley: Yes. You know, Norton healthcare is a large non-profit healthcare system. They have great resources. We have a lot of administrative support.
[00:10:11] There's a real desire there to grow the program, to grow the programs that are coming in. So we're really excited to see what direction this takes us next. And
[00:10:22] Todd: so how do you, how do you get access to your. Clients are they, how does that work
[00:10:30] Shelley: locally? You know, we get referrals from pediatricians.
[00:10:35] We get referrals from ear, nose and throat physicians from early intervention program from the early hearing detection and intervention program, both in Kentucky and in Indiana, since we're a border city we get a lot of word of mouth referrals. You know, just patients and families who are happy with the care that they've received.
[00:10:54] And they happened to meet another family who needs audiology services. And so then they call and they say, we'd like to come in. So if you can get to us, we'll see you,
[00:11:06] Todd: how many cochlear implant teams are in Louisville?
[00:11:10] Shelley: You know, a couple of your implants have been really interesting in Louisville. So we've always had at least one and at one time, as many as three.
[00:11:21] Surgeons who are doing pediatric cochlear implants, but they were all located in different places with different audiologists. And you know, then of course we also have a really great set of neighbors to the north at Cincinnati children's who have an active cochlear implant program. It up until now.
[00:11:38] We haven't been affiliated with a particular ENT group. So we've really enjoyed nice relationships with all the providers. You know, unfortunately even under the Norton system, we are going to be able to continue to have some collaborations with Cincinnati, which is great. But the nice thing about getting more people underneath that umbrella is that I do think we're going to be able to kind of centralize our efforts a little bit.
[00:12:02] In terms of services for kids with hearing aids and cochlear implants. And one thing that we have that we're bringing to the table is we have a speech language biologist who is working on getting for listening and spoken language certification, which we're super excited about. We also have a clinical fellow so she is getting some training and that LSL focused background.
[00:12:24] And then we have an early intervention provider who actually is currently Lisel certified. So we're really trying to build up that piece of the program. And I think that's going to fit really nicely under the Norton umbrella. And we're going to be able to expand our reach a little.
[00:12:39] Todd: And that's great.
[00:12:39] I've, I've tried to send people to you at different points when you've had openings and you've reached out and I never know exactly what some of the students, if they follow up or not. So, but yeah. Keep us in mind cause we
[00:12:52] Shelley: always have, we're going to definitely, we're definitely now kind of. A rotating clinical fellowship that actually is relatively new to us.
[00:13:01] We had our first clinical fellow last year. So this is going to be a recurring thing, which we're very excited about.
[00:13:08] Todd: Well, that is very exciting. And so what is, what is sort of a medium and long-term goal is just continue to grow the therapy side and I'm sure. You may need another audiologist at some point, you need to have a life yourself.
[00:13:25] Shelley: You know one of the exciting parts of this Norton transition is that we actually are going into a group that Norton acquired in April. That has two audiologists already. So our team. So our audiology team is growing. We're bringing in our SLP and early intervention folks into this nice big group.
[00:13:47] But I have a feeling that our capacity is going to be pretty stretched almost from the get go. So I'm, I'm looking forward to seeing how we can add additional staff in the future.
[00:13:59] Todd: I have to train up these audiology audiologists that are coming in with. Make sure they, they really know what they're doing, especially
[00:14:09] Shelley: with P we have a great group here.
[00:14:11] So we're, we're excited about that.
[00:14:14] Todd: That's awesome. That's awesome. And so so continued growth. I mean, it sounds so exciting in terms of everything that's happening there and, and for you to see this. Sort of constant evolution from everything that you've done. How does that make you feel?
[00:14:33] Shelley: You know, if you ask me today, I'm a little dizzy.
[00:14:39] I'm like, Ooh, this is all happening so fast. And there are so many moving parts, you know, and, you know, changes, change can be, feel a little chaotic, but I think. When I think back to 2010 and where I started and where we are now, just, you know, just over 10 years later I'm really excited about just the prospect of really creating, helping to create a place where we can provide good high quality.
[00:15:14] Family-centered services and kind of under just a model where all of the different providers are talking to each other all the time, because what we know about that is that that makes better outcomes for our patients and for our families. Oh,
[00:15:29] Todd: exactly. Exactly. And, and it's, it is so great to have everyone in the same place and I've had.
[00:15:39] That experience and I've had the opposite experience. So everyone at different facilities trying to come together, trying to communicate, you know, consistently and trying to keep everyone, you know, on the same page with every patient. And it's just incredibly hard to do so. It just sounds like you're not only getting great resources, but everyone being together and being able to really, really.
[00:16:06] Shelley: Yeah. And we've managed that way, honestly, like you described for kind of a long time, you know, and then a couple years ago we brought the speech piece in and you know, now we're kind of taking that, that integration of services one step further. So I'm excited to see where it takes us.
[00:16:25] Todd: So if you, if, if there's someone out there who would listen to this podcast and.
[00:16:32] Sort of you 10 years ago, it was trying to get something off the ground. What advice would you tell them? How would you help them? Go faster, but with some of your experiences,
[00:16:47] Shelley: I think the biggest challenge for me, you know, and the part that ultimately led me to find a community partner was just sort of the billing and reimbursement stuff is, is hard.
[00:17:01] It's time consuming. The rules are always changing. You know, when, when you're a small agency, You don't have the benefit of somebody who is negotiating your insurance contracts and, you know, really doing a good job of keeping them up on your reimbursements and things like that. Some of the advice that I would give is you know, just know, figure out a way to kind of.
[00:17:27] Have that stuff handled by people who do that all day long. You know, sometimes I think it was hard to always balance the political needs, you know, which is really kind of where my heart is with all of the business stuff. And so for me personally, you know, finding a community partner who could provide that support and resources was huge.
[00:17:52] Todd: So have a community partner or a very wealthy donor
[00:17:57] Shelley: or a very wealthy donor. Yes. There are very many of those we tried. Yeah, we tried. Yeah. So, yeah, but it's just, it's just so important to have good people in all parts of your, in all parts of your work. Because you know, we want to continue to provide the care.
[00:18:14] Right. And we want to do the best job that we can, but. You know, there, there are costs associated with doing that. So we want to make sure that we're, we also want to make sure that on the flip side that we're not sacrificing quality for cost. So that's, that's the balancing act, which was my, for me, you know, kind of reaching out to the community to find good resources was so was so important.
[00:18:39] Of course for my patients and their families, but also. For my sanity.
[00:18:47] Todd: Sure, sure. There's a, there's a lot to be said about mental health these days. Right. Making sure everyone is staying healthy and, and all those areas, not only physically, but mentally. Yes. So yes, I, I certainly understand. And well, I just admire everything that you're doing there and, and just sort of taking the.
[00:19:10] Idea that you had 10 years ago and now to see where you've where you're going and tomorrow's a big day of starting this new relationship. It's, it's extremely exciting. Yeah. And it's, you know, the, the, the patients, the children will greatly benefit for all the work that you've done.
[00:19:31] Shelley: Yeah, works. We're excited.
[00:19:32] We're looking forward to, we're looking forward to the call that will come after the first few months of just getting settled. And then we can kind of get back to the business of making big plans.
[00:19:45] Todd: Right? And so if, if there's someone who would like to reach out to you or learn more about what's going on there, how can they reach you?
[00:19:54] Shelley: You know, I am on LinkedIn. You're welcome to track me down on LinkedIn. I can provide a personal email address if that's something that you. Normally do it's up to you. I can do that.
[00:20:07] Todd: The millions of listeners that we have, you know, you may be inundated, I'm going
[00:20:11] Shelley: to get a million emails a day.
[00:20:13] But my email is Shelley, which is S H E L L E Y dot moats, M O A T [email protected]. And I'm always happy to get an email, answer a question.
[00:20:30] Todd: Well, thank you for joining.
[00:20:33] Shelley: Thank you for having me. It was nice to see you.
[00:20:35] Todd: It was great talking with Shelley. I do appreciate her time right now. I know there's a lot going on with the mergers. So I really, really appreciate her being with us and sharing so many great insights in terms of working with young children, with hearing loss and their family.
[00:20:56] And with that, I thank you for joining us as well. And being here, listening to the podcast, if you don't mind, leave us a five star review that always helps us to attract new listeners. And until next time be safe and be kind.
This has been a production of the 3C Digital Media Network.
Episode 29: The Listening Brain - Ellen Rhoades
[00:00:00] Todd: Welcome to episode 29 of The Listening Brain Podcast.
[00:00:12] Welcome to The Listening Brain. I'm your host, Todd Houston. In this podcast, we explore childhood hearing loss through the lives of the parents and families who are on this journey and the professionals who serve them. It is my pleasure to welcome Ellen Rhoades to the podcast. Ellen is a consultant, a mentor, a researcher, and a writer across all continents.
[00:00:43] She serves colleagues early intervention, service providers and families, including their children with hearing loss. In 1977, she founded a nonprofit auditory verbal center in Atlanta, Georgia USA, and served as an executive director for 17 years. Additionally, she secured and developed and directed a three-year federal grant providing exemplary early intervention, auditory verbal services for the state of.
[00:01:20] She also established an auditory verbal program in Tampa, Florida, and was its executive director for eight years, as well as serving as an advisor to other auditory verbal centers. In other nations, her 100 plus published works include professional journal articles and chapters, as well as her co-author books entitled.
[00:01:49] Auditory verbal practice, family centered intervention first and second additions, oral rehabilitation for adolescents with hearing loss and auditory verbal therapy. Her areas of expertise include psychosocial aspects of hearing loss, families of children with hearing loss, infant development. Crossmodal learning.
[00:02:18] Communication skills, assessment, cross cultural competence self-determination and the development of listening, auditory memory spoken language and cognitive capacities. It is my pleasure to welcome Ellen to the podcast. So Ellen, welcome to the podcast. And I think you are someone within the Lisel community that if you don't know who you are, then something's wrong with them.
[00:02:52] They've lived under a rock or something. So thank you for joining me on the podcast. And I think most people know that you obviously have a hearing loss, so let's start there. When was your hearing loss? So then.
[00:03:09] Ellen: Okay, well I was identified when, out of the bag too. This was in 1947, so I'll be at the, I was born in 45.
[00:03:19] But keep in mind that I have an older brother who is profoundly deaf. And so he was a couple of years, about two and a half years older than me, meaning that at the time I was born, my parents were shopping around from doctor to doctor. So it wasn't until later in life that revealed a lot that my parents and I realized that we have we were deaf as a resolve to connect in 26, if none syndromic, definitely my parents were second generation.
[00:03:51] They were first-generation immigrants. I'm a second generation. And so, you know, we really didn't know that much about what happened back in. Eastern Europe. So I don't know, you know, who, if my ancestors might've also had a hearing loss, but obviously both of my parents had a recessive gene and being that they were both Jewish, they probably some tribal consignment.
[00:04:17] Now it's going on. But I did not. I did not have as great a hearing, lots of my brother, both of us with bilateral, but fit with profound. And mine is severe. Sloping was severe slugging, I should say. So that's how my parents found out and it really changed their lives to change their whole life, my family, because they, they neglected me the first two years of my life.
[00:04:47] My mother had a embrace it book by John Dutton, right. Who wrote in 1915, which is over a hundred years ago. The four letter of what is literally the 18 approach today, before I in laying the 4runner, BB and Pollock and all of that, she embraced. But she was still primarily I think visual. And then when I came along, okay, that's it.
[00:05:18] My father gave up the military, he did the may doing the army and decided, okay, we're going to stay in New York. And that was really the best decision they could make because not only at that time, New York and the forefront of what. With being done for children with profound loss, but it was where the first oil school in fact, John Denton right.
[00:05:45] Started out in New York and they were also focused in terms of hearing aids. So my parents gave both my brother and I, each of us. What are you the. It covered our whole body because they were the first ones in the 40 and they were powerful. So if the matter of how much power can we give out to kids you know, so I think just based on that alone, you know, my deafness and how it affected me and my life and my host, my family lives really need to be contextualized in.
[00:06:21] We have wherever you work, a timing and the plates and it happened. It just so happened that my mother met living in college, didn't know who she was a pilot that Columbia Presbyterian. And my mother would told, you know, stop shop in the van, just put the aids on and start doing what you need to do. But that was it.
[00:06:42] And then she met feel good who decided. To run an experimental auditory bait program in New York city. And That program was federally funded with a pilot program and it was quite successful. So I would end that program from the time I was two, till the time I was five and it was very successful for me and my brothers stayed there for the same to until the same year.
[00:07:13] And I laughed, he laughed, but he was well ready. Three grades ahead of me because they had skipped a grade. You're going to serve contained class. They had decided he should skip it. Right. So anyway, we moved them from the grounds to claims. And so I sent the photos great at that during that time in my preschool year, we experienced reverse mainstreaming.
[00:07:40] And at that time there was also a book being written. It wasn't published until 1952. And then it was by million Fiedler out of it's called deaf children and hearing, I didn't know about the book, but I knew there was a book and my brother and I were among the 12 children pictured in there.
[00:08:00] That book had a tremendous effect on me later. Of course. Anyway, so when. Mood. And we were fully mainstreamed if the finger swim kind of an atmosphere, but, you know, I think that just had a when you have negative. Or when you have, let's have, sometimes it can make you stronger. It can work both ways.
[00:08:24] And so we survived. There were, we were the only two chip, even though he was three grades ahead of me. I have him to commit to me with, in terms of hearing loss and we were the only kids in our school. Well hearing aids, you know, growing up in the fifties, he just didn't know anybody else except each other.
[00:08:44] And that's a big statement to make because my high school had 5,000 kids in it.
[00:08:52] Todd: Wow.
[00:08:53] Ellen: And I didn't know, visit New York city. Then they were big schools, oil children of immigrants or grandchildren of immigrants. So it was a really different time, but, you know, My brother being the first born here, the goody good shoe.
[00:09:11] The young get straight A's then did well. Me not so much. I would jump into socializing and I never did homework couldn't care less. But the advantage that I had had were that my father was street smart, even though he didn't have a college education, he had a lot of common sense and he's an army guy.
[00:09:33] So, you know, whatever was going to happen was going to happen. Whether you liked it or not, you know, and my mother, on the other hand, I would not like that, but she was very language savvy and she was the, actually B a, B a, I don't know if you know this actor rather than go with girls. That would my mother, the way she taught, the way she spoke, the language she you.
[00:10:00] And so the two of them actually made. A good combination for me. But there were some moments of, I guess you might call them critical consciousness that led me towards what I eventually did. I remember in the fourth grade I saw a picture of myself in a class photo and I said, oh my God, I was giving a body aid and I looked different.
[00:10:29] So Then a mill. My parents said, okay, we'll get you a BT behind the URI. And of course we're still unilaterally fit. But so we did, and I have the happy camper and some then. With me, it was never a question of, should I hide it or not? Because my hair covered it didn't matter to me, my brother, however, had he had some identity issue and he always felt then to think that he told me many, many years ago that he felt like he was Clark Kent in Superman clothing.
[00:11:05] It kind of thing, but yet he was deaf and didn't do as well. And he would often take off a day then irritating the rest of my family that anyway. So that was for me the first time I remember, okay, I am different and I got up and I got a hearing aid, but you know, no matter what those hearing aids were a part of me I never, never even think to take them off except when the battery froze up in the snow or something like that.
[00:11:35] And I really had basically a very normal childhood. I had a lot of fabulous experience, a lot of different friends throughout the city. And it was positive. I had a lot of summer jobs The next critical for me, moment came when I was in high school and a vocational guide a high school guidance counselor suggested that I become a librarian and I was done and I ran home, told my parents at dinner time.
[00:12:11] And my father bang the fan on the table and house stupid and Kelly doll and said, you know, he don't pay any attention to her. You do be whatever you want to be, but it was the first time. Looked at me as someone with a hearing loss. And so that worth kind of sobering, but an even more sobering moment for me, where, when I.
[00:12:42] What invited well out of the blue, after 15 or 16 years, I get a letter from this gal named Baba who used to be my best. So, and we're not at the preschool and that reverse mainstreaming. I don't know how in the world she found me, but I get the letter inviting me to come to her high school graduation.
[00:13:05] And she lived in another part of cleans, which wasn't too far from me. So I said, great. I'm looking forward to meeting her. My father drives me to her high school prom her high school graduation party, which is in her basement and dropped me off. I walked down I mean I work into the house and I realize, okay, her parents had.
[00:13:27] And they weren't talking that is signing, but okay. Then I went, I had never met, never met anybody who signed. And so I went down into the basement and I hear this music and I see your. Teenagers here dancing and they don't stop. They don't, they get continually dancing and they're not in sync with the music and they were all deaf and signing.
[00:13:54] And I was, I was so upset. I started to cry and so I, excuse myself. I mean, I didn't give cheery, I thinking bad and now Sorry. So I ran upstairs and I caught my father and I asked him to pick me up. It's such a shock for
[00:14:14] Todd: me.
[00:14:16] Ellen: And then I decided, okay, I need to know a little bit about what I do, what, why I am the way.
[00:14:23] And so. I a couple of sites out of the capsule and a camp for children who had different differences. One of them with the camp, for what the politically handicapped kids and another, with a Campo atypical children. And I found myself pro gravitating towards the kid that had a here. Ben again, you know, the door do a unilateral 50, then the 16.
[00:14:50] And then I did a summer internship at the teacher aid and Lexington school for the deaf in New York. But I still hadn't quite decided. But anyway, I was one of these, so I go work the college, happy, go lucky, not really knowing what I want to do. And I went to, by the time I finished, I went to seven different colleges.
[00:15:11] So I would not have student. I didn't care. I went there in college to meet guy, but I decided to make an element. And and after that got married and My husband was very, very supportive. He went to Vietnam, came back. We decided to live in Atlanta. So I applied to Emory university, which at that time had a two year master's not can exist anymore, but they told me, well, we'd like to consider you for an experiment for research purposes.
[00:15:47] But, you know, they won't, well, not considering me as, as a graduate student, my collared grades, so, so nothing much. But I was pissed. I was so furious that he would do that. And fortunately, my husband was. Angry about it as my father would have been if I had come home and told him, so I decided to go back and we observed, and I did.
[00:16:17] And at that time, which was the half a year later, they had a different administer. And so they accepted me. And the first year that I was there and that whole, that whole experience changed me. The, I got every course, I got an a in except for next because they were not giving me any latitude, none whatsoever.
[00:16:40] And so I had to listen to all the sounds and transparent then and that was cause I got a, B. It was not easy for me that cost, but otherwise I'd said, okay, this is what I'm going to do. And then I read my book that I did in deaf children in a hearing room. And I realized, oh my God, What they're teaching me with traditional oil stuff.
[00:17:07] The fifth key and I mean, you know, stuff that we just don't do anymore. And I'm thinking, how, how did this happen? Why are we doing this? And the whole thing did not make any sense to me because I didn't learn that way. So anyway, I went to my first two years of teaching in a self-contained class.
[00:17:28] I remember coming home. Really upset because my teaching colleague did not know anything about hearing loss and they certainly didn't know anything about hearing aids. I mean, they, they knew the basics, but they didn't seem to understand the importance appropriately managing though. They, they, they, they would make statement that that irritated me, but anyway so.
[00:17:54] And, and also during those first two years of teaching in the school system and the hearing impaired program, we had Derby in pilot, come up, come and give us say a, maybe a two-day three-day workshop. I don't remember that. That didn't that made all of a sudden she made so much sense to me. I said, that's where I was different.
[00:18:17] And I saw myself in that. And so I immediately apply to the workshop to be a pair on infant coordinator for the Atlanta. And so I. And auditory program and the early seventies and what's well with the visa and then decided, you know, what the kids are going from. The two or three years that they're with me in the parent infant child game, they're going to go into the oil self-contained primary classroom.
[00:18:53] And that was not what I wanted. So that point I decided to establish an 80 son is what I did in Atlanta. And so since then to I've really been an activist. This was in 19 77, 7, and I had to get funding and everything. Took me three times as long to do it because I was always getting a rejection.
[00:19:20] The first time United way said, no, we're not funding you with department of human resources said, no, we're not funding. And I would go back and I would yell at them and rent. I have done so many times when I'm sure I've made a lot of enemy, but if it's the only way I could go to get something that I've dealt with needed, I even yell at I've went to visit the Georgia school for the deaf, I won't mention names, but I was shocked.
[00:19:49] This is in the 70, and there's a black campus in a white kid. And I stormed into the door. What are you doing? You're no longer in the 15th and 40, and it's the differences between the camps as well. Phenomenal. So I would not the most loved person there, but, you know, I did what I wanted to do. And so that the vet, you know, with me as a Navy practitioner,
[00:20:21] Todd: So you, you left the Atlanta speech school and started the auditory verbal.
[00:20:29] Right. And so how long were you in the auditory verbal center there?
[00:20:35] Ellen: 18 years.
[00:20:37] Todd: 18 years. Wow.
[00:20:39] Ellen: And then I left to Florida and when to and I, and I, and we all took that. It's funny, you know, we had these fabulous shoots so that it would not. Right. It was if it's financially solvent, but then when to you know, they're all the way board issues or not, when you're an executive, a CEO or an executive director, whatever term you, whatever title you give someone of a nonprofit you're marketing, you have a staff training.
[00:21:11] You're married to that job. So, and also, you know, the photo three years of that center, I didn't take a salary. I would marry them, but then I got a divorce and started doing the salary. But it drains you can do so anyway. And then went to Florida and there were then the last oil teaching center, which I turned around into a ladies center.
[00:21:41] And that was my last critical consciousness moment, because back that was back in 95. And I lost my hearing. I talked on the phone, talking in the phone to my father one night and I said, dad, wait a second. I think my battery just went. It was instantaneous. I couldn't hear a same. And so I said, hold on a second.
[00:22:08] And I'm changing, looking, looking for my family about it. And then I plan because with a hearing aid, your battery, or at least did use to any day your battery died. But it didn't make sense that all of a sudden my bed anyway, I was a stoic and I was living alone at that time if I had left my son in Atlanta.
[00:22:33] And so anyway, I got implant, but that changed my her legs again. I had worked within plan to children since 1984 in Atlanta. So it wasn't the fact that I had. A cochlear implant. Oh, so the transition to that difficult, but I had a number of issues, which I really have not talked about much because I don't like to dissuade people from getting a cochlear implant, but from the get go, when they implant one good ear, when they implanted my one video, they something wasn't right.
[00:23:13] It was holding. To make a long story short. I was in the pain with increasing day to day. And finally, after a couple of months, I think it explanted itself. Oh wow. And the doctor had kept saying, you know, come, it was a mess, an absolute mess. And I had a staff that she had staph infection that I had contracted when they implanted.
[00:23:45] So I would not hearing, which is the worst thing that could have happened to me and well, not the woods, but next to the worst. And then so then I had to be on IV antibiotics for a couple of months and then I had to. I went shopping from doctor to doctor, from California to Florida, to Atlanta to see what can I do.
[00:24:15] And they said, don't implant. We implant for a year. So I got to, I have to do a year without hearing and I'm still looking and I'm relying on an oil and unchecked. And I know that they're fabulous woman was doing it out of the goodness of her heart, but it was so demeaning for me because I've been a very independent person.
[00:24:40] Right. So, and then finally the doctor said, okay, what you can do is we implant. Oh, and I was doing implanted and the other year, I forgot to say that when they X plan did me surgically, they implanted in my other ear, but I'm at the right age of 15. I have never worn a hearing aid in that year. And they said, oh, the brain it'll work.
[00:25:07] Don't worry. The brain get used to it and understand what I here. And I never did. I've worked for. At the daddy and different. And after two years, I just said, you know what I'm done with that ear? So when I got reimplanted, it was like, I could hear again, but you know, I think that whole experience colored me in many ways, positive and negative.
[00:25:36] Anyway, I just decided, you know I need, I want to go the independent route. So that's what I did. I left and became a consultant and a researcher and a writer, that kind of thing. So that was where,
[00:25:52] Todd: and we've, we've benefited from that, with all of the. Productivity that you have in terms of what you've been writing, you've written, you know, coauthored books, you've, you know, writing papers and doing all kinds of things and presenting and well,
[00:26:08] Ellen: it's been a lot been very positive to me as well because what I have been doing it.
[00:26:15] I love traveling. I'd spend months and months and months and Europe and Asia and every continent. And I absolutely love being a consultant giving workshops. So yeah, I mean, it hasn't been a steady kind of a thing, but it's been, it's been something that I've solely enjoy, so it's not just writing, but now is especially now with lockdown being two years in the.
[00:26:46] Todd: Yeah. Well, hopefully we'll get beyond this COVID thing at some point, and we'll all be able to get together in person again. So what what are you thinking? And we know in terms of the technology, obviously, that has changed over the years, but what do you think are some of the bigger changes you've seen in terms of how we work with kids with hearing loss today versus even five, 10 years?
[00:27:11] Ellen: Well, first of all, we have newborn screening, you know? There's really no comparison when you work with baby that are less than a year old. And it's fabulous though. I have to tell you, I am involved in a little bit of research now and we're finding some disparity for marginalized groups. They're lost to follow up.
[00:27:36] So we're doing a paper on that, but, but yes, I mean, the fact that more often than not children are being identified during the first year of life is fabulous. The second is the, the healing devices. I, I have only known. Power high hearing, but, but I know today they have such fabulous and I'm jealous of what the hearing technology can do today.
[00:28:03] Both implants as well as hearing aid, because they have Bluetooth technology, which I think is fabulous. My enemies have always been noise and distance as it is. And, and Bluetooth. Helps with that. And unfortunately you know, I can take advantage of that now because I'm the original generation, but you know, I've been talking to several people about it.
[00:28:26] I may decide to get reimplanted after twenty-five years of learning. So. So human and technology unquestionably had them food. What had not really improved so much is as a parents, if we don't educate them, they still go through the same thing that parents 70 years ago, or a hundred years ago.
[00:28:52] But on a positive note, the other positive thing is that we have. She was schooled for the deaf today. And the self-contained classes again, because of involved the needs, how hearing health disparity tend to be the more marginalized groups, but I think. Because of the consciousness we've been going through and lock down that that will eventually change as well.
[00:29:19] So I think we overcome, eventually we will overcome the hearing health disparity, but the parents, I don't know we have got, we are getting better in working with the parents. There's no question about. But the big issue there as well. If I'm a practitioner working in a facility of some kind I'm done to be encouraged to provide services that are reimbursable and talking to parents alone, it not necessarily be in bursts of activity.
[00:29:57] And I know. That one thing that I did pride myself on in that boat, that the sun to them, the nonprofit sector is that the AB practitioners that I hired would continue to do maybe therapy. But I took on the full load of parent education and that's the parent had to. Sit with me for at least an hour over 12 to 20 sessions within that folks here.
[00:30:26] And we talked about everything, you know, not a curriculum, but an outline that I followed and it never failed. But decades later parents would say, you know, I really appreciate all that information you gave me out of happen. We would put it in a notebook and. They need that information. And you know, our hands are tied when we cannot reimburse practitioners for imparting that But somehow I think we have to find a way to do it and maybe we should be having pre canned can packages are not as good because we need that one.
[00:31:07] I'm one. So this is how you understand your child. You know, understanding a general I've already brand doesn't really make any difference mean have that much meaning to the parent. So anyway I do believe that we need to change the parent. Let me change the parent. We will change the child.
[00:31:29] Todd: I agree wholeheartedly.
[00:31:31] Ellen: agree.
[00:31:34] Todd: You know, and one thing that I, that I have noticed you know, with, with COVID, obviously we've seen more telepractice.
[00:31:43] Ellen: You know, especially,
[00:31:45] Todd: well, especially in the beginning when everyone had to do telehealth and telepractice, but I think what I've noticed with even some of the Lisel certified people that are out there when they had to switch over to telepractice, then they really did have to do all that parent.
[00:32:07] Because they weren't in the room with those, those families, those parents. And I think it was a wake up call for some people, because even though they're little certified, they weren't doing really good parent coaching. And now they had to
[00:32:23] Ellen: exactly. I happened to me the whole heartedly. And now even when I occasionally see parents in Florida, where I am now, they want me to come and do a contract.
[00:32:34] I tell them what it's about. I'm not going to do a therapy session. I go, what do you do with the recession? But they're so used to seeing their practitioner and I, we can talk about it then it changed it. It had changed the whole bull game. And I think it's both though. I wish we did not. I mean, we didn't have the pandemic.
[00:32:57] It had been a saving grace for many parents, I think. And they feel so much more, so much more comfortable working at their children.
[00:33:08] Todd: Sure. They, they, they, they know what to do. You know, my, I think, you know, you nine times out of 10 parents just want to know, tell me what I need to know and what I need to do, you know?
[00:33:19] And, and when we don't. Do that, you know, they're, you know, off on their own, you know, getting information from who knows where on the internet and, and other places. Exactly. Exactly. And so, yeah. Let me ask you a question, cause this has come up before I have my perspective on this, but about giving parents information.
[00:33:44] You know, there are some people who say, oh, don't give them too much information. They can't absorb very much at one time.
[00:33:51] Ellen: I disagree with that. I think we underestimate the parent. Doesn't have a college degree. We, first of all, we need to stop using professional dog. Let me talk to parents. And I think if we space it out, you know, I said it turns all the time, even there, even as a non-profit, I mean, even as an independent consultant next week, I'm going to come back, you get all your relatives in here.
[00:34:24] We're going to talk about this and without the children and. You focused on a particular topic each time you can cover the whole thing. And not only that, I know I've always known that when it comes to audiology and hearing technology, it takes many sessions for them to understand the basics of it. And not only to understand the basic debit, but everybody learns different.
[00:34:52] So I will say it 20 different ways. I will have it visually or auditory, so important, you know, you have to get down on their level. And I said, if your child was visually impaired and we gave you an eyeball, would you take that eyeball out? You would never take the eyeball. And the, I will only say then that you have to consider the hearing aid at part of the child.
[00:35:24] It's more important. And I grew up where my parents didn't have any very little resources in the forties and fifties, and we always had a buyer hearing aid. The healing technology is more important than a second girl. It's more important than any, any of the toys that is the most important thing you're doing for your child and your child had to wear every finger moment of his waking hours.
[00:35:52] And if people don't do we have any sleeping fine, but except when he. You know, and you have to get adamant or I am good. And I still do, because parents need to understand how critical it is. How could you let them, their kids on gonna make it that they cannot hear that human divide is how they learn, whatever it is that we want them to go on.
[00:36:18] And I remember my father occasionally I would get, I had not occasionally a lot of ear infection because he had one ear mode all the time. And so I would take my year out my emo that vested That without, after about an hour, my father put me damn it. I'm talking to you. Listen to me, you know, put your hearing aid up.
[00:36:42] I'm sorry. I shouldn't have said that. My parents would get angry at us when we were not willing and I grew up that's how, that's the expectation level. You have the expectation that. And many aspect to that always has to be high. One is that you're going to hear me all the time and that you can do anything you want to do. And everything comes.
[00:37:06] You pay a price though. You're the good enough, there's an up and a down side. Nothing can be. And you know, it's sort of like a philosophy that's important to was important to me anyway. And. So, I don't know. I did feel like it, it really important that we devote as much time as we can, to making sure that the parents understand the gravity of the situation that the need for consistency and understanding.
[00:37:42] And the other thing, too, this is a side time. I get off on a tangent lately. What's happened a lot then, but I'm, I'm so focused on the hearing health disparities now that we need to reach out.
[00:38:01] Really make an effort to reach out to those families that have low resources are very constrained and where we haven't been doing that, you know, I didn't do it. I know at the beginning and I ran the AB center, I'll sort of whoever comes to my door, the middle-class come to my door, the working class doesn't we need to go out and find them.
[00:38:27] Because they're the ones that are underserved, underrepresented.
[00:38:32] Todd: Right. I agree wholeheartedly. And we got to find ways of, of making sure they're connected and getting the services that they need. And you know, not, not to. Think of telepractice as being you know, the answer for every situation, but it does for, for families that are in more rural situations or can't travel, have trash transportation issues.
[00:38:58] It may be a solution for some families, but I agree with.
[00:39:02] Ellen: Yeah. And also, you know there are a lot of the surveys that show, well you know particularly the, the, those with limited resources that they may not have access to computers, but you know, what do anybody has a cell phone? Right. And I know that there are many families, not just in this country, but in other parts of the world that I cannot see them.
[00:39:26] I never met them over two or three years, but they all have. And I can educate them by email. I can send them information and we can talk. As long as they can read an email, I can, I can, I can simplify my language. They can learn what to do.
[00:39:44] Todd: Right. And that's, and that's really what I'm seeing right now for some families that are continuing services with me at Akron children's hospital.
[00:39:57] And it's more of a telepractice solution for them just about all of them connect using their phone. And so, you know, the idea of, you know, families sitting at a computer with a big monitor in front of them, that doesn't happen as much anymore. It's on a screen. So big, you know, a few inches wide and, and, and you have to, you have to adjust.
[00:40:21] You know what you're doing, because they're looking at something this big, you know, very small and but it can be done. I mean, you just have to plan for it. And, and know what kind of technology they're using to access those services.
[00:40:36] Ellen: Yeah. We have to make adjustments. There is not ever one way to skin a cat, so we have to be flexible and what we do absolutely.
[00:40:46] And we have to be inclusive. And the other thing too, is that I think with parents, we need to let them know that their children, as they mature, can leverage the label. In other words Well, what I mean by that? If you engage in selective disclosure, I will and a Facebook post with a bunch of young deaf adults.
[00:41:16] And one of, one of them in particular was saying that she is having trouble getting a job. So we had a little Trident conversation and fam and I come, come to find out she, so from. With her deafness from the get go, maybe that an issue that she shouldn't be that fun, but the teacher let it come out naturally.
[00:41:39] You know, it's kind of like, I speed a lot. I shouldn't be saying that, but I do like, I'm a fast driver and I speak a lot. And so what happens when I get stopped by the cops is I take my hearing aid off and I, and I put that. Ah, the death ladle and I start to cry and I'm sitting
[00:42:01] and, you know, half of them don't give me. 'cause they feel inside for me. I mean, that's what I'm called. That's what I mean by leveraging the label of selective it's clouded, you know, you have to know when that's not a good thing that I'm doing, you know, speeding, but I'm saying there are appropriate times.
[00:42:19] And I, I admittedly, when I first came into this field an executive director of a nonprofit, you know, I had to go on TV quite a lot. And I had to publicize the fact that I was deaf and that was just a, not coming to me. I was just so torn. I didn't want to do that. I had to be comfortable with my, my own hearing loss.
[00:42:43] So it was the upside of it, where there was a growing process for me. But the downside of it is that I have to play on the audience, empathy. And not something with sympathy, I should say, not empathy, but sympathy. And the last thing I want to sympathy from anybody don't sympathize to me, but sometime that what I had to do to get money, you know, for the center.
[00:43:08] So, you know, you, you play yeah. Straddling, both worlds. Sometimes you have to know when to do it.
[00:43:18] Todd: Yeah, I agree. I I've had some experience with that and I, and I think I, my, you know, I, I don't have hearing loss that I know of. But what I have done when I had a cancer diagnosis, I posted things on Facebook.
[00:43:35] And then I, I put something in my LinkedIn profile that I was, you know, a cancer patient and had this diagnosis. I think that disclosure actually hurt me with a couple of opportunities that I had, because I think I can't prove it, but I think they saw that and said You know, we're not going to take the risk on him because he may not be around much longer or he may, you know, be out.
[00:44:09] And so, you know, it may take a step back and think about that where I, you know, with social media today, you want to reach out and share news with your friends and colleagues and let people know what's going on at the same time. You never know in the future. Who may go back and look at all those posts and how it could potentially be used against you.
[00:44:33] Ellen: Absolutely. You know, I'm a big fan of that hearing or not paper. I'm a big fan of appropriate calling the person, the person phone, and then following it with the label. But there's still a stigma attached to labor, whether we like it or not, I may not. The stigma of cancer, Chach T but somebody out there and that hurts, but you know, that's the reality of this world.
[00:45:04] We live in that not everybody sees things the same way that we see it. So,
[00:45:10] Todd: yes, I wholeheartedly agree. Well, Ellen, this has been a wonderful conversation and I really appreciate your time and joining me on the podcast and, and good luck with everything that you're doing. You know, you, you should be sitting on at the beach with your feet up and, and look at all the stuff that you're still doing.
[00:45:29] So I, I admire everything that you're doing for, for the field and for me, and for all the practitioners that are out there. So thank you very much. You're
[00:45:39] Ellen: very welcome. I love doing what I did, so yeah. Thank you very much. And it's been an honor to have you interview me.
[00:45:47] Todd: That was the incredible Ellen Rhoades.
[00:45:49] Thank you again, Ellen, for joining me on the listening brain. If you are in auditory, verbal therapy or listening and spoken language, and if you don't know of Ellen's work, then you're missing a big component that you need to stomp on those breaks back up, and really start reading the articles that book chapters and the books that she has written.
[00:46:16] You will not be disappointed in all the wisdom. Real research that she has done and collaborated with others to do so again, Alan, I know you're busy. Thank you for being here and wish you nothing but continued success and all that. You're doing all your many projects and thank you for joining us on this episode of the podcast.
[00:46:43] Please leave us a five-star review. That always helps us to attract new subscribers and spread the word about listening and spoken language. With that, I'll see you in the next episode until then be safe and be kind.
This has been a production of the 3C Digital Media Network.
Episode 28: The Listening Brain - Dr. Barbara Hecht
[00:00:00] Todd: Welcome to episode 28 of The Listening Brain Podcast.
[00:00:13] Welcome to The Listening Brain. I'm your host, Todd Houston. In this podcast, we explore childhood hearing loss through the lives of the parents and families who are on this journey and the professionals who serve them.
[00:00:33] Hi, it's Todd Houston. I just wanted to reach out to our really talented, wonderful listeners that we have. And just ask you if you want to join us. Yes. Would you like to be a content creator for the 3C Digital Media Network? We need you, we need content creators to come and join us. So if you have a blog, a webinar, or a course, or maybe even a podcast that you'd like to do, we would love to speak with you.
[00:01:10] So please, if you have some ideas, email me at [email protected] and I'll reach out and we can have a conversation. And so hopefully we could have you develop whatever you'd like to develop and work with us. Again, [email protected] and I will be in touch now back to the interview.
[00:01:43] We have a special treat on today's episode. This is actually an episode I did for my other podcast telepractice today on that podcast with my co-host Kim Nutro Allen, we interviewed Barbara Hecht and Barbara, as you may know, is is the director of Clark schools for hearing and speech in Boston. And they did this wonderful study looking at.
[00:02:15] Telepractice policies for early intervention. And of course they have a focus, a bit more on kids with hearing loss, but they had a very good study. They did with brown university. And because she works at the Clark school and I just knew that all of the content that we, we learned all of the information that she shared.
[00:02:39] Would be a great fit for the listening brain as well. So let me introduce you to Barbara Hecht. If you don't know who Barbara is. So Barbara is the director of Clark schools for hearing and speech in the Boston area. Otherwise known as Clark Boston. She received her undergraduate degree in linguistics and psychology.
[00:03:06] At Harvard university and her PhD in linguistics and child language at Stanford university, she has a long and accomplished career as an educator and deaf education specialist. She's also been an innovator in an advocate of distance learning prior to her work at heart at Clark school. Dr. Heck directed the John Tracy.
[00:03:33] In Los Angeles, California at Clark. Dr. Heck has been a leader in the development of tele services for families and infants of young children. So it is great to share this interview. We did with. Here on the listening brain, the Barbara, welcome to the podcast. Can you give us a little bit more information about your background and how you arrived at Clark?
[00:04:00] Barbara: Yes. I'm happy to I actually grew up in the Boston area and then my husband and I made our way to California for grad school and beyond. And I. Doctorate is actually in linguistics and the specialty in child language development and child language disorders. And I spent the early part of my career as a professor of special education through my graduate students.
[00:04:25] I actually learned about deaf education and found my way to. Center in Los Angeles called John Tracy clinic which specializes in working with families of very young, deaf, and hard of hearing children. John Tracy clinic had a long history actually of providing distance learning. To parents.
[00:04:46] It was called a correspondence course in the 1940s and fifties where parents wrote letters back and forth to, to specialists. But that gradually became a distance learning program for parents. And in my time there, we also started one of the first distance learning programs, training teachers. And so I was working both at the very young end and the adult end in distance learning.
[00:05:14] A great opportunity arose for me to return my husband and I to return to our roots in new England. And for the past 10 years, I've been the director of Clark's Boston area campus. And when I arrived at Clark Clark wood is now about 150, three years old and quite quite a venerable institution that was embarking on something quite seen by many as quite radical.
[00:05:40] And that was to to look at the possibility of providing telepractice for birth to three at, for our birth to three families. And so when. Arrived with a little bit of remote learning in my, in my DNA. I took on the role of one of the leaders of that that project. And so we Just a little bit about Clark first Clark provides early intervention services, preschool and early childhood services and mainstream support services to students who are deaf and hard of hearing who are in their neighborhood schools.
[00:06:15] And we do that in four states across five campuses. But the opportunity to. Kind of dip our toe into the water. Telepractice came up In Massachusetts and our tune, Massachusetts campuses in partnership with an organization in Connecticut. And so we actually did quite a bit of homework. We had a foundation that was, was willing to dip the toe in the water with us.
[00:06:44] And and so we we offered our first telepractice session officially in, I think January of 2013. So that was, that was kind of how it all started. And I would say, and I'm sure this must be true of many, many practitioners. We were a little skeptical about telepractice. We weren't sure if we would be able to establish a relationships with the parents through the screen.
[00:07:15] We weren't sure. If we could really deliver the same quality of services to families. And many of our many of our staff were extremely skeptical. When we first started.
[00:07:31] Todd: Well, Kim and I got started together at Utah state university. She was one of my graduate students there and we started an a, basically it was a feasibility study to look at early intervention services for kids, with hearing loss and.
[00:07:47] We had these really large Tanberg units that were point to point that we put in the homes of huge things and a, with a monitor and all of that. And, and with that, in what you're talking about, and cause we were skeptical, we were doing a research study. We didn't know if it was going to work. We didn't know if we could build the same level of rapport.
[00:08:09] We didn't know if we'd see progress with the kids. I mean, we. Sort of let's try it and see what happens kind of attitude. And, and fortunately we, you know, the rest is history, but we, we definitely saw the benefit there. And not only from the professional side of things, but the parents just love having that service available to them.
[00:08:33] Barbara: Right. Well, we really found the same thing. The interesting thing to us actually, was that the the more, I'll just say the more experienced among us we're the most worried about using the technology. And we thought that, that our younger staff who had been Skyping and communicating that way for quite a long time, we thought they would be the early adopters.
[00:08:57] And in fact, it worked the other way. And I, I, I bet you found that too. Yeah, yeah, yeah. You have to have a certain level of confidence, I think in your in your abilities as a practitioner to to do the kind of coaching that's really required in, in in this modality.
[00:09:15] Todd: So when we, we started that project and then that evolved into.
[00:09:21] A school that was set up earlier mentioned program in school sound beginnings, which is at Utah state university. And we had hired an SLP who Kim and I both know very well. And and I had that same thought, here's this younger, vibrant SLP. Who's gonna jump onto this technology and just run with it, you know?
[00:09:48] Not the case at that time. She struggled with it and just said, I'm not going to do this anymore. You know, it's not for me, you know? So at the time it was, it wasn't a good fit. Now she works for a telepractice company doing it full time. That's right. That's right.
[00:10:10] So you just never see. I mean, but at the time I had the same thought, I thought, you know, this young person and I was just looking at the technology aspect of it. Right. They love technology, you know, they're going to jump right into this, but I think you're right. You hit on something that maybe she, I don't know.
[00:10:27] I didn't really dissect exactly what was going on. I know we just had to get someone else at the time. But, you know, it could have been just not feeling comfortable with those services and with the parent coaching, especially.
[00:10:42] Barbara: Right. So when we, when we started this project, there were, there were two things actually.
[00:10:47] And, and some of the work that you had done Todd at Utah state was really helpful to us. We reached out to colleagues in Australia because Australia had actually been providing teleservices for quite a while. They, you know, Talk about a rural rural area. One of the people I spoke with said that it, you know, it took her five hours on a plane ride and then four hours in a Jeep to get to, you know, the sheep station where the family lived.
[00:11:16] And so that wasn't going to be a viable way of providing services. We really did look at at what we could learn from everyone around us and see what, how that could be adapted to our community, where we certainly have rural areas in, in Connecticut and Massachusetts where we started. But. Actually found, you know, urban areas can be just as daunting.
[00:11:39] It's it? Traffic traffic makes it really difficult to get to someone's house or for the family to come to us. And especially public transportation can be daunting with with a baby or toddler. So. We really started out deciding that we wanted we wanted to evaluate the project. And so we partnered with the university of Massachusetts Donahue Institute as our external evaluator.
[00:12:08] And they began with us when we started designing the project and they're still working with us on valuations of various aspects of our, of our telepractice program, we call our telepractice T visits. And that it's an acronym. Visits is a virtual intervention services for infants and toddlers.
[00:12:30] And but we really had this vision that home visits and center-based visits would be supplemented by T visits. And so from the beginning, We were hoping to get the kind of data that would push public policy. People in our area to accept telepractice as a viable way of delivering services and then COVID happened.
[00:12:54] And then they had to accept it where they, when they wanted to or not. Right, right. Exactly what, yeah. So, so we were very fortunate. I think most of the people in, in the deaf and hard of hearing field who've been providing telepractice have been doing it primarily with At funding with grant funding and foundation funding because of the the landscape was a little uncertain for how to get public funding, but we we decided that once we saw how successful this was and How much it improved, not only access, but even things like reducing missed appointments, you know?
[00:13:35] We, we found that when we looked at our telepractice visits, we really had more than N 95. Show rate as, as compared to, to in-person. But really more importantly, we found that all of these things we had worried about really weren't big issues. Parents and, and our professionals both said that they really felt that they were establishing very good relations.
[00:14:02] And that and parents, I think in one of the studies, 97% of the parents said that they had learned new skills that they could carry over in everyday activities. They. Loved the fact that, that it was more accessible. Do you know that services were more accessible? So once we knew that that both the professionals and the parents were we're seeing huge advantages, then our next hurdle was to figure out how to move the policy needle.
[00:14:33] And we worked in, in Massachusetts and New York, we were making some headway, in fact, Massachusetts department of public health, which is our Hartsey lead agency. They agreed to a pilot project that was initially for one year and then extended to three years where they actually provided funding for us to do T visits.
[00:14:58] And in New York, we were having some similar success in getting policy makers to, to pay attention. And so we, we started meeting with, with them and ask them, what do we need to do? How can. How can we get to the next step? And they said that really it's going to come down to insurers who provide a lot of the basic, you know, support behind the scenes Medicaid, and then private insurers are going to be key if if this is going to be you know, universally reimbursed.
[00:15:32] Practice. And and so we said, okay, that's fine. What do we need to do? What do we need to bring to the to, to these discussions? And they said, you know, it'd be really helpful to have a sense of what's happening nationally. So if lots of other states are doing this Massachusetts and New York, Where we were starting, don't want to fall behind.
[00:15:55] They don't want to. And so if you can gather some information for us about what's happening across the country, that would be really helpful. And yeah, and that's the point at which we we had this great opportunity to team up with brown university's public policy program. And we Found two wonderful graduate students in that program who worked with us full-time for three months as part of their master's program, gathering information and helping to put together recommendations that we were going to make to our state.
[00:16:32] So that's how that national scan came about
[00:16:36] Todd: now, looking through it, I'm very impressed. Yeah.
[00:16:40] Barbara: And it's difficult with early intervention that it is so different from state to state. I did early intervention, both in North Carolina and in Utah. And now I'm licensed to do telepractice, not necessarily through an early intervention in Idaho and California as well.
[00:16:57] And everything is so different from state to state. I am pretty sure that in Utah, we don't even bill private insurance for early intervention services. And in North Carolina, that was a big source of the funding for early intervention services was private insurance. So it's hard to keep track of and to know what's going on.
[00:17:20] So this was a nice study that summarized what is happening in each state. Yeah, it's it was actually. Amazing to us. How, how much of a patchwork there is. Right. And you know, we, we knew that each state had had sort of different, different criteria and even whether there was any telemedicine legislation or tele anything legislation differed quite a bit.
[00:17:48] But what we found was that yeah, in states like Massachusetts public insurance in particular really helps to fund early intervention through our department of public health. And then the department of public health is considered the payer of last resort. But even in that case, even when the department of public health, for example, wanted to move forward, they needed to figure out a way to get insurance.
[00:18:14] To agree to pay. And so that was really our, that was our conundrum. We found, you know, in some states like in California, where I spent so many years there were informal deals that were set up with Medicaid, but it wasn't even statewide. It was county to county. And so just imagine, you know, if you're a you know, a parent living in one county and just over the other county line, The rules are all different.
[00:18:40] So there was no consistent framework in, in California for for reimbursement at all. New York was fascinating because there actually is legislation in the state of New York to reimburse early intervention telepractice, but the infrastructure doesn't exist, put it into place. And so it's. The legislatively it can happen, but the various agencies that actually run early intervention had not gotten together and figured out if they wanted to do it.
[00:19:16] And how so? What a, what a. Yeah. Yeah. Yeah. Usually it's, you know, people like you that are like, okay, we want to do this. We want to push it forward. Not the other way around. You have to, you know, the legislation there and then you have to build the program. It seems like it's usually the other way around.
[00:19:34] Right. Right. And I think the the toughest part is that. Policymakers are often very focused on telemedicine, but early intervention is, is not usually front and center on their, their radar. So they may have legislation regarding telemedicine and I think especially post pandemic, they're going to have a big push for telemedicine.
[00:20:00] But we have to be sure that early intervention is part of. Discussion and, and other forms of teletherapy beside early intervention.
[00:20:11] Todd: Well that sort of brings up a question that I have Barbara, because, you know, within our fields of hearing, within hearing loss, the hearing loss area, we can have teachers of the deaf who are providing early intervention services and speech language pathologists.
[00:20:28] And in some cases you may run into audiologists, pediatric audiologist, or educational audiologists doing summit, some work, some of that work to be teachers of the deaf. What did you find there? Can they in Massachusetts deliver those services versus other states?
[00:20:47] Barbara: So in in Massachusetts, teachers of the deaf are.
[00:20:53] Qualified can be qualified to be early intervention providers. We're not talking teletherapy, but just in person and a teacher of the deaf services are reimbursable. And our state basically made a deal with Medicaid and with with private insurers to basically set a flat. For all providers, all specialty we're called specialty providers, whether you're a teacher of the deaf, an audiologist or a speech pathologist You, the reimbursement rate is the same.
[00:21:28] And the insurers loved that. So they weren't, it actually, they felt like they were saving money and it allowed us a lot more flexibility. But in other states that's not the case in other states. The reimbursement from insurers kind of drives who can actually provide early intervention services.
[00:21:53] Todd: We're not going to see that consistency around the, around the country.
[00:21:56] Barbara: Right. Right. And I think, you know, it'll be interesting to see how, how that emerges as we go forward. Because for example, in the field of vision loss the people that are providing early intervention services are almost always teachers not allied health professionals.
[00:22:14] And so. They're going to have to sort of come up with a broader way of looking at who can, who can deliver services. But right now it's, again, it's really a patchwork across the states.
[00:22:31] But there's quite a few early intervention programs that are also going to like a one service delivery, one service person delivery model to where they have, you know, it might be that the SLP consults. And then there's only one person that is their point of contact with the team. I know that there's some states that are doing that model also.
[00:22:53] And so that's another issue where we have to. You know, kind of think about, do we have that same level of reimbursement, whether it is the teacher or the SLP that is doing the telepractice specifically, and even, even the way that works, you know, in person from state to state is so different in, in our state, in Massachusetts.
[00:23:12] And I I'm fairly certain in most of California, actually teachers are considered that they can be the primary school. The liver and in our state and Massachusetts we actually have our subcontractors with the generic early intervention agencies. So the whole network of them, and then we subcontract as specialists.
[00:23:36] And the nice thing is that families can actually get services from more than one specialty provider. They don't have to choose. And in the field of hearing loss, Big deal because parents are often not sure if they want to go the listening and spoken language route or the ASL route or some combination.
[00:23:58] And so the nice thing in Massachusetts is that families don't have to choose. They can, they can start working with more than one specialty provider and then make a decision. As the child is turning three, what direction they want to go in?
[00:24:15] Todd: I've always, yeah, I've always heard that. It's great to have 50 states and us all these, you know, us territories, but we also have 50 different ways of doing things and, and that's, that's the challenge we have and our great country is every state's different.
[00:24:31] And then. And as you're finding, even within the state from county to county, it can be a different service model. And I can only imagine the frustration that among the professionals and the parents trying to figure out how to navigate all that.
[00:24:45] Barbara: Yeah. You know, it was interesting as as we were doing this scan, a few states kind of stood out as potential models that we could sort of point to.
[00:24:57] As, as our, you know, as our states, we're, we're developing their policies. So for example, Colorado really started to stand out as a model. And we know that Colorado helped, helped push us into universal newborn hearing screening and really early on had pretty extensive early intervention in the, certainly in the field of hearing loss in children.
[00:25:22] But what's really. Nice. And in that state is not only that, that reimbursement is available for telepractice, but also training and and quality standards for for providing telepractice. Because certainly now we're in this really interesting. Situation where every, it was just telling somebody, everybody and their cousin is doing telepractice pandemic.
[00:25:51] And we don't really know much about the quality of those, the services, people that were forced to jump into providing teleservices without any preparation at all. And that, you know, so as we look at data that some people are collecting, you know, the. We don't know what the quality of those services were, the preparation of those professionals, but some states are doing a couple of states, really are doing a nice job at least requiring some training and, and if not special certification, but certainly some training,
[00:26:30] Todd: I think here in Ohio, they in the state licensure law for speech pathology and audiology, they say.
[00:26:38] You have to be trained and have the knowledge and skills to do it, but there's there's really no re no enforcement for that. I mean, it's kind of like what Asher says, you know, you don't don't do it, you know, if you don't, how did, if you don't know how to treat someone ethically, you should refer them, but that doesn't always happen.
[00:26:58] Cause people just want to try to treat someone. Collect the money or the, you know, the insurance without fully being qualified to serve that patient. And I think the same thing, especially this past year, obviously it's a little bit different scenario with the pandemic where you really had no choice and everyone had to do telepractice, like you're saying, but ideally people should be trained before they do it.
[00:27:24] And. And I think what will come out of the pandemic is a bit of. People rushed in and jumped in and did it. And we saw probably some really terrible services being done because people were having to literally do, you know, go home on a Friday, come back on Monday, ready to go with telepractice, you know, and they have never done it before.
[00:27:47] And so.
[00:27:48] Barbara: I got a couple of panicky phone calls around March 13th, 2020 from two different agencies that said, oh my gosh, you know, we know you've been doing it. What can you, you know, what can we tell me right now on the phone that, that I need to know to prepare our, our practitioners that, you know, we had this hour long phone conversations where I was trying to download lots of information, but you're right.
[00:28:14] People had to jump in and often with very little preparation. And I think the biggest challenge has been for people that are used to providing therapy and in sort of a more therapy therapy, clinical model to make the switch to a coaching model and being a. About your side rather than the direct deliver services through a screen to a baby that doesn't come naturally to some people and learning how to be a good coach is really the, you know, what we've learned is, is the real key to doing a practice well, I wonder if that differs too, in those states where it is a contract provider that, you know, if it's all, they're all working for one agency, then you can kind of standardize like the information that everyone in that agency is getting.
[00:29:11] And when you have contract providers, then you might have some that have, you know, a more of a coaching background and some that have more of a clinical background and. That changes because that's definitely been my experience too. I learned a lot more about coaching when I moved from, you know, I had the background in auditory verbal, so I have.
[00:29:33] Background and coaching, but as far as implementing it more widely in early intervention, I feel like coming from North Carolina to Utah and with one agency that we were all doing that, then I learned a lot more about it and implemented it more than I was before. And. And from what I've heard from everyone, but they changed when they went to telepractice too.
[00:29:54] They were like, I thought I was doing parent coaching permanently, like smell when we first started in and we're getting ready in 2012, 2013 we invited Arlene straggler brown to come out in. Help train our staff. And she had just given a talk. I think it was entitled if you think you're doing family centered practice, try telepractice.
[00:30:20] And I think cause you cannot jump through the screen and rescue the parent. You can't, you can't help them get that hearing aid in you. Can't and the baby is not going to interact with you very long over the, over the screen. So I think that. What we were S we were hoping to see, and I think we're starting to get some data that, to verify it is that people who actually were doing coaching through telepractice found that they were coaching better in person as well.
[00:30:52] Cause they, they sort of had learned, had to learn how to do it.
[00:30:58] Todd: I agree. I certainly has informed my coaching you know, over the years going from telephone. You in-person and back and forth, depending on the family, it certainly has sort of upgraded the level of coaching I've done for sure.
[00:31:16] Barbara: We also saw an eye.
[00:31:18] I think this is the exciting part we saw definitely during the pandemic, but as we were collecting data, as well earlier, we saw that some children were making much better progress when they were. When the family was getting teletherapy, then when they were just getting in person services. And we, you know, I would attribute that primarily to the fact that, you know, we, we are really empowering parents in, in telepractice to be the, the main, you know, the main people interacting with their children.
[00:31:53] And there's so much research showing important. But when, when parents are, they, they are able to carry it through the rest of the day. Not just when the, you know, when the specialist is. So we we've been saying for quite a while that teletherapy has some advantages over face-to-face certainly face-to-face has some advantages as well, but a hybrid of the two, which is really what, what, what we were thinking about as the ideal, if, if possible,
[00:32:42] Todd: Yeah, that's certainly sort of where I've fallen with many of my families. Some families just want to come in. I mean, especially now post pandemic, or as we get to be move into that post pandemic. Period of time. It's like they've had a little bit of computer overload with, you know, home teaching and kids being at home and on the computer.
[00:33:03] And, you know, they just want a break from all that and come in, you know, and see me. So but I think the ideal is probably going to do a, it will be a hybrid of the two for most families.
[00:33:15] Barbara: Yeah, we were. So we started kind of thinking about all of these advantages. Another thing that happened as we, as we were implementing this pilot project in Massachusetts, and then expanding, we expand the telepractice at Clark to all of our campuses.
[00:33:30] And so all of our campuses are, are now doing T visits, but we found that. It was, there were other things like it's easier to arrange interpreter services for families who don't have English as a first language. Our state was really interested in having. Do co treatment with other specialists. And wow, was that so much easier when we didn't have to have two people arriving in person at the same, at the same?
[00:33:59] And so we actually tripled the number of coats rates that we were able to do. And we, when we started using. Teletherapy. That's an interesting idea too. I've been on some we had a auditory not auditory. AAC team that we would had an OT on it and an SLP on it. And usually a student intern.
[00:34:22] And sometimes we'd show up to a family's house with like six people and it's a little overwhelming and, and it was from a university. So yeah. Usually had students with you too. And just thinking about that, that like supervision, that would be so much easier over it. Or, you know, like, Mentoring or someone observing a session and how much easier that would be over a telepractice session.
[00:34:44] Then here we pull up to your house in a van, literally
[00:34:50] Todd: people entourage, and let's
[00:34:53] Barbara: just have a natural interaction with your child while six of us watch it. So intimidating for parents. And I've had parents say also, you know, that they love not having to worry about whether the house is clean. Right. But, you know, the other, the other thing that you mentioned just now, Kim is also a huge advantage that we hadn't quite thought about, and that is supervision and training.
[00:35:21] So, you know, we used to really struggle with how to supervise people that were doing home visits. Cause if you go out there then. It's you're another person and it's, it's kind of intrusive. And we, we had done some recording and had people record themselves, but that also gets a little intimidating and somehow just to be able to sit together and watch you know, a recorded zoom session or FaceTime session.
[00:35:54] Was such a nice way of, of providing supervision and mentoring and actually training our graduate students to.
[00:36:05] Todd: I think the recording is, is an incredible piece that people don't utilize as much.
[00:36:12] Barbara: Yeah. And we actually we asked our, our brown consultants to look into whether a recording was even allowed for state to state. It looks like it is in most states. There are only. Some three or four that did not allow recording of tele telemedicine sessions.
[00:36:34] Yeah, I thought that was interesting.
[00:36:39] Utah was one of them that didn't know. But yeah, how wonderful to be able to have a recording that, you know, the parent one parent can share with the one who wasn't able to be there or with the grandparents. Okay. So the recording, we struggled a little bit with how to make sure that we're, you know, we want to make sure the recordings are, are kept securely and that parents weren't going to post them on YouTube, you know?
[00:37:07] But once we figured out some of those security measures making recordings available to parents has been a huge, huge.
[00:37:18] Todd: It's a great video record of the child's progress too. It's just, it's a win-win for everyone. I mean, able to have that
[00:37:25] Barbara: yeah. Language samples from them. Right.
[00:37:33] Todd: So, Barbara, what, what's the next what's the next step with you? You've compiled a lot of information here on, on a national scale. And I know you are working to show the policymakers and the decision makers in Massachusetts and probably all the campuses where you guys are located how to, you know, how to better or improve telepractice service delivery, especially at the early intervention level.
[00:38:02] But what do you want to get out of? The study going forward?
[00:38:09] Barbara: Well, I think I think our next step is to kind of hit the reset button. You know, we were just at the point of, of having having, we actually had set up meetings with our DPH department of health. Partners and a couple of key people from from the, the insurers, the public insurers.
[00:38:29] And I think that really is our next step to now come back to them and say, okay, here's, here's some, here's some information. This is here's some states that are really doing this well. Here's the data that show that this is an effective and well received. Mode and find out really from them, what what they need to they do they think that are they ready to go without legislation or, or regulation?
[00:39:00] And I think my, my sense is that. W, you know, one of the silver linings of the pandemic is that this is now just sort of more acceptable. But how, how do we move forward? I think is going to take an effort in every one of our states, again, because there is this patchwork of, there is no federal legislation or, or federal guideline.
[00:39:25] So our next step really is, is to. Reschedule those kits that we had. We actually had one scheduled for March 27th or 28th, 2020. And just reschedule some of those meetings. The, the, a challenge for us is, is Some of the key people have now changed. They're different people than, than the ones we've worked.
[00:39:49] We've had some retirements and some new relationships to build, but I think that really is our, our next step. And then at Clark, we're going to be looking state by state who the key players are and who we really need to meet with. And my sense also is that we're going to need to. Speak to our legislators directly, not just to the insurers.
[00:40:16] And one of the best ways to do that. Is sometimes to bring a parent along like to meeting with you, you know, we, we are seen as sometimes having a particular perspective, but when, when legislators hear from directly from their constituents about the impact of these services, I think it can be really really an important way to get the message across.
[00:40:43] So we're really in the, in the stages of, of. Taking a couple of steps back and then looking at who, who we need to get face to face with maybe starting with zoom, but who we really need to contact. And start again, start up those conversations. And I think the, this this national scale. Is helpful.
[00:41:08] Although I think our goal really is to emphasize the the states that are doing it particularly well and what we've learned from them.
[00:41:18] Todd: Right. See what can be replicated.
[00:41:22] Barbara: Yeah. And every state wants to be, you know, best practice, right. To as a as a model. So. But I think the other question I, and I don't know what, what you're sensing, but I think we need to do a better job of teaming up with the telemedicine folks.
[00:41:40] Because I think they're going to be pushing ahead with full steam. Yeah. I feel like we need to make our voices heard with them when they say when they push that kind of legislature for word that we're not saying we're making them not forget about us. Yeah, I know. And in our state, right before the pandemic, just as we were gathering the data that it turned out, that there were three pieces of legislation before our state legislature re, re relating mostly to tell them that.
[00:42:14] But, and everything I think stopped at that point none of that legislation went forward, but it will. And the more we can sort of be tag along and get the benefit of, of of the telemedicine allies.
[00:42:36] Todd: Well, I think one thing to, to, to think about Barbara and Anna, and I don't know the answer to this, but You know right now at the federal level in Congress, there's some big bills, hopefully working their way through Congress that will be passed that will hopefully leave a lot of the, the new allowances for telemedicine and telepractice in place even after COVID.
[00:43:02] And I know Asher has been a part of that in AAA and, and but I don't know. I don't recall. There may be some organization there, but I don't recall any organization focusing on teachers, teachers of the deaf who may be. Well among them, it's all. From what I recall, it was all allied health and, and medicine and nursing.
[00:43:26] And because, you know, for a lot of this, like you're saying a lot of this the big push for telemedicine has come from the physicians because they want to practice across state lines. Right. And, and that's been sort of something that they've been focused on for four years. And the American telemedicine association has been really.
[00:43:47] Pushing all that. And then COVID hits and now everyone has jumped on. And luckily there is, there seems to be much more of a re receptivity to it at the federal level. But, you know, I'm hoping that the teachers that may be providing early intervention don't get lost in all that.
[00:44:06] Barbara: Right. And I, I, that's a really good point.
[00:44:08] And I think I, one of the things that we learned when we did the scan is that there is a consortium of. States not quite half of the states, but almost half of the states have formed a consortium to allow for, for practice across state lines for allied health professionals. But you're right.
[00:44:30] That there's, there's there, isn't kind of the same, I guess, lobbying organization. For teachers, the, the one organization I'm thinking that could be very helpful as a council and education of the deaf. And that's part of the larger organization of the council council for exceptional children.
[00:44:51] And possibly there, there also may be some, some support from organizations like the national center for hearing assessment and management. But it's going to your right. It's really going to take some attention to the range of practitioners that are, are qualified to provide these services.
[00:45:16] Todd: That's right. Well, Barbara, this has been educational for me now. We really enjoy having you on, I think it's time now for our moment of Zen, as she says This is, this is our version of the Proust questionnaire. So if you ever watched a inside the actor's studio, never have. So, you know, that was on for awhile and Bravo and they would interview these actors.
[00:45:45] And at the end, the host would ask these 10 questions and. You just respond how you want, you can one word answers or you can elaborate as much as you want or as little as you want. Okay. So we'll jump in. So what's the most used app on your phone? Photos. Photos. Good. Good. What's the last TV series you streamed?
[00:46:12] Barbara: See, I just streamed It's a, it's a French TV series called call my agent. It's about, it's about a a talent agency in Paris.
[00:46:25] Todd: Okay. Cool. What's your favorite book or a favorite book?
[00:46:31] Barbara: Favorite book right now. I'm just, you know, just have a new favorite starting yesterday called the, the mole, the horse and the Fox.
[00:46:41] Have you heard of this really? Highly recommended it, beautiful drawings and, and wonderful, wonderful ideas about life.
[00:46:53] Todd: Awesome. What's your favorite genre of music?
[00:46:58] Barbara: So
[00:47:00] Todd: I pictured you more of a metal head football, just kidding. Oh, that's good. What's your favorite food?
[00:47:09] Barbara: Oh, it changes from moment to moment, but favorite food?
[00:47:14] One, one of my favorite, I'd say pasta.
[00:47:19] Todd: Awesome. What's your, what's the most exotic place you've been or the farthest place you've been.
[00:47:30] Barbara: Farthest actually Israel would be the farthest. We're about to take a four day trip to St. Croix. And so I'll let you know how that goes.
[00:47:42] Todd: That sounds great. What's the scariest thing you've ever done.
[00:47:50] And scary can be defined in any way you want to define it.
[00:47:53] Barbara: I would say scariest and also most rewarding is having children.
[00:47:59] Todd: No one else has said that a couple of times curious thing is, oh, definitely having kids is the scariest thing. Yep. What's what's your pet peeve or a pet peeve.
[00:48:15] Barbara: I guess I, my pet peeve is narrow thinking or people who are not willing to, to think
[00:48:26] Todd: the box. very good. I, I share that. If you didn't choose your current profession, what profession would you like to try?
[00:48:39] Barbara: You know, it's interesting. It's changed through the years, but I would say, I would say pediatrician
[00:48:46] Todd: very nice. That's great. And this is the only one of the only questions I think that was in the original Proust. Let's last one. If heaven exists, what would you like to hear God say when you arrive at the pearly gates.
[00:49:04] Barbara: Welcome. Glad, glad.
[00:49:10] Todd: Great. That's awesome. Well, Barbara, it's been great chatting and learning more about the scan and in some of these issues related to early intervention, a telepractice, and to hear more about what you guys are doing at Clark. So please come back and give us an update in another six months or so, and we'd love to check in and see how things are.
[00:49:31] Barbara: Well, Todd, thank you. And I thank you for the work you're doing. I think, you know, together where we're really trying to ensure that people don't think about telepractice as second best, but they think about it as, as you know, a really high quality possibility in a way of reaching families in new and better ways.
[00:49:52] Todd: And how could someone reach out to you if they wanted to? The best
[00:49:56] Barbara: is my email address. And is there a way for you to send email? Yes. Feel free to contact me at my clerk email address. I'd love to hear from people and hear, hear what others are doing and, and see how we can work.
[00:50:12] Todd: That's great. Well, thank you again, Barbara.
[00:50:13] Good luck with everything. Thank you.
[00:50:15] Barbara: Thank you. And can Kim
[00:50:16] Todd: thank you as well. So that was the interview with Barbara, heck to Clark Boston. Hope you enjoyed that interview that we did over on telepractice today. Just a quick plug for that podcast, that if you're interested in telepractice and you don't subscribe to that one yet.
[00:50:34] I encourage you to do so. It is a great podcast that I do with Kim Nutro Allen. One of my former grad students who was just a phenomenal speech language pathologist and telepractitioner herself. And I would like to invite you to join us at the three C digital media network. So we are looking for content creators.
[00:50:58] We're looking for people who may have. An idea for a new podcast, or you would like to be a guest on a podcast, or maybe you want to present some webinars or maybe a course. So whatever you may have an interest in, we would love to talk to you. So you can email me at [email protected] and I will be in touch.
[00:51:30] I promise. And with that, we'll be back in two weeks with another episode of The Listening Brain Podcast until then be safe and be kind.
This has been a production of the 3C Digital Media Network.
Episode 27: The Listening Brain - Dr. Joanna Stith
[00:00:00] Todd: Welcome to episode 27 of The Listening Brain Podcast.
[00:00:12] Welcome to The Listening Brain. I'm your host, Todd Houston. In this podcast, we explore childhood hearing loss through the lives of the parents. And families who are on this journey and the professionals who serve them.
[00:00:34] Hi, it's Todd Houston. I just wanted to reach out to our really talented, wonderful listeners that we have. And just ask you if you want to join us. Yes. Would you like to be a content creator for the 3C Digital Media Network? We need you. We need content creators to come and join us. So if you have a blog, a webinar, or a course, or maybe even a podcast that you'd like to do, we would love to speak with you.
[00:01:11] So please, if you have some ideas, email me at [email protected]. I'll reach out and we can have a conversation. And so hopefully we could have you develop whatever you'd like to develop and work with us. Again, [email protected] and I will be in touch. Now back to the interview.
[00:01:47] Today, I have the pleasure of speaking with Dr. Joanna. Joanna has been working with children with hearing loss and their families for over twenty-five years. She currently lives in Broomfield, Colorado, and has a private practice called listening for life where she provides listening and spoken language therapy for children and adults. She serves as an adjunct professor with the university of Colorado.
[00:02:15] Is a listen foundation. Therapist provides early intervention, mentors therapists working towards becoming Lisel certified and facilitates love and logic parenting courses. It is my pleasure to welcome Joanna to the podcast. Joanna welcome to the podcast. Tele, tell me more about your background and just as a disclaimer, we do know each other from many years ago in South Carolina, right.
[00:02:48] Where we both were. So fill in for the listeners your bed.
[00:02:54] Joanna: Okay. Well, Todd, thanks again for having me and I feel really lucky to have gotten to know you many years ago and learned from you and alongside with you at USC. I think I kind of. Fell into the little background, a little at a time, I started out undergrad, the university of Nebraska and was always interested in actually teaching is what I, but I also was interested in speech pathology.
[00:03:21] As a, as a child, I had Arctic issues and so got to receive services and it was fun and I wasn't made fun of anymore. And so I think I always had that in my mind. Yeah. I was thankful. Right. But it was also the speech therapist that I had. When I was younger, it was just, it was fun. Great. We played games and so it, it was, it was a great experience for me.
[00:03:45] And then once I got into undergrad and started doing a little bit of work with going into the classrooms and student teaching, and then I took some communication sciences and disorders classes, and then took a sign language course. Cause I was very interested in. Actually took like three of them, I think and worked as a waterfront director in Florida at camp endeavor where there were only two of us that were hearing and everybody else that was on staff was from Gallaudet or from the surrounding area in Florida.
[00:04:12] And got to really work with children with hearing loss and realized that I loved it. And. I went to graduate school at UT. And at that time I was still really pursuing more manual signing and. Then moved to Charleston and in Charleston, even I was still, I would teach like a beginning sign language course and an intermediate sign language course.
[00:04:36] So, and started, let's see, I think then I was supervising students from USC that were and then I was able to do. Classes for a really great rate. And so drove up and it was your class actually. I think it was a cochlear implant course where I really learned more about cochlear implants and what auditory verbal therapy could offer and realized, you know, I can see so much benefit from this.
[00:05:04] And so I took another class that was auditory verbal therapy, and really got kind of hooked and so excited about it, to see the, to see just the different impact that you could have and knowing that. So many children today who are born with hearing loss are born to hearing parents who really want for their children to have the type of childhood that they had growing up into a listening and spoken language community.
[00:05:30] And so pursued my PhD and also was able to become a certified auditory verbal therapist under your guidance and all of your help and expertise. Such a blessing and kind of got into it that way. But I do remember going to an ag bell conference at first and just thinking, gosh, this, this just isn't, it's so different from what I was doing.
[00:05:54] And so for those families that I started teaching sign language to write, I felt like I did a 180 on them. And yeah. Really felt, I guess, passionate about that big step, that big change and have loved it ever since all that's all the, all the steps that have gone on and enjoyed, enjoyed being able to teach and just be a therapist as well and serve on the cochlear implant team when I was there.
[00:06:21] And so. That's kind of how it all started. I think a little bit at a time, right?
[00:06:28] Todd: Yeah. I, I seem, I seem to recall many years ago, I think maybe you called me at at the speech and hearing center and we talked on the phone about what was going on in the AAV program that we had there. And that, and then maybe you came up and visited or observed or something.
[00:06:50] It started with more and more of the conversation between the two of us. And so, yeah, that was that I remember that all those years ago seems like yesterday. Right. And so you become more knowledgeable about listening and spoken language, auditory verbal in Charleston, and you ended up and so you were at the.
[00:07:15] Is it the speech and hearing center in Charleston?
[00:07:17] Joanna: Well so I actually was at Trident medical center first. Right. And we started right. You and I started collaborating and providing HIV services there. And then I switched and went to USC where I was able to be on the cochlear implant there and also teach At the medical university as well a class a semester.
[00:07:42] And so that's, that was a great opportunity, right. Something that I look back on and absolutely loved being a part of the team and just continuing to grow. And then I moved to Austin and yep. Took a little hiatus, but really still had a private practice. And then we had a family and so continued with the private practice throughout and moved to Colorado then 16 years.
[00:08:11] I can't believe we've been here 16 years. So, and if continued with the listening for life And
[00:08:21] Todd: that's good. And, you know, Colorado has such a rich history of auditory verbal practice because, you know, during Pollock was there and, and Was it the listening center?
[00:08:34] Joanna: Yeah, the the listen foundation is actually the nonprofit, which the auditory verbal therapist in the area here contract through them.
[00:08:41] And it's a great, it is a wonderful community, I think that, that we all kind of. Serve into right. The lists and foundation is, is a wonderful nonprofit that's here that all the Lisel therapists contract with two.
[00:08:59] Todd: Yeah. It just it's always had that history, you know, of, you know, going way back and just, and the people that in a sense came through the, you know, the, the training program there.
[00:09:14] I was just speaking with someone the other day about a. Actually Linda Daniel, who was in Texas about her days back in the day of, of, of being in Denver training with during Pollock and others and how it was such a rich time for people to come there and spend a week or two or whatever, and be mentored by some of these pioneers at the time, you know, and that was when it was really sort of out of the.
[00:09:45] You know out of the norm, when, you know, TC was such a, you know, the way we need to just do it, you know, from the seventies and eighties, and they were going there and learning from these people, and then they go off and then they mentor and teach and become the people, you know, that we look up to now.
[00:10:04] And so she was talking to me about that experience and how, and all those names. Are people that we would all recognize now, you know, and are getting close to retirement. So so it's, you know, it's just that rich history. So it's, it's great that you can be a part of that and sort of keep, keep that fire burning and that in the whole, in Colorado,
[00:10:28] Joanna: It is it's.
[00:10:29] It's great. And to see what dream Pollock started, right. And how now it has continued to grow and reach out into so many other areas. And like you said, to see the pioneer, and I think, I think today, if during pilot could see how, how many children. Are impacted by what she and Daniel laying and you know, or what they started and how it's just continued to grow and blossom.
[00:10:55] I think it's really fighting just even from when you think back to when, when we first started, right. What was that? How has it changed?
[00:11:03] Todd: Right. Yeah, it's certainly much more common now than it ever has been, and it continues to be so, and You know, and it's, you know, people, when you mention HIV or listening and spoken language, they, they have a better understanding of what it is and what it means.
[00:11:21] And certainly parents are, are becoming much more knowledgeable and wanting those kinds of services, which is all very good things that they only, the only area that I, me personally, that I think we need to really continue to work on is our training programs, university programs. Because it's still just a handful of universities that have just so happened to have happened, to have faculty that have that background or an interest that they end up getting that exposure.
[00:11:54] And and so that's, that's the challenge I think we still have is how do we get at the pre-service level more training? Before the students graduate.
[00:12:05] Joanna: Right. I completely agree. And I think it's interesting. I think as early intervention is becoming such a big push I think ABT was all of what early intervention is starting to push that I'm seeing now.
[00:12:17] Right. For those of us that were trained in AAV and listening and spoken language, it goes so hand in hand with what that push of family centered therapy is. Right. It's what we've been doing for years and years. And we know that it really works. And so it's great. But then when you have the opportunity to work with students and help them to see you love this, you love helping Clients, but really it's a lot bigger of a picture because it's not just the clients, it's the whole family.
[00:12:49] And if you can empower the family, you are gold because they now feel like they have the confidence to help their child. And that's where you're gonna get. The best outcomes, but so I think you're right that more and more because there are so many children that are being born in so many families that really want to pursue this that we need more students that have the background and the ability to provide the services and See it through from the get-go right.
[00:13:19] When you get them, when they're little they're in and out, you know within a few years, so right. Or shorter, sometimes.
[00:13:28] Todd: Very true. And even if you know, some of the. Current student grad students who graduate in the next year or two, even if they don't want to pursue the Lisel certification because they have other interests.
[00:13:42] That's fine. You know, I would want that they get exposure and understand that these kids. Can achieve these things, if the right set of circumstances or right professionals are involved in the right services or are putting in place these kids can have different outcomes in what we saw, you know, 30, 40 years ago.
[00:14:04] And you know, so at least that, I think they're understanding that and, and maybe that if, if they can work on some of those skills and then if. Totally feel a loss. They can refer to someone else who can do it.
[00:14:21] Joanna: Right. Right.
[00:14:24] Todd: So let's, so you make it to Colorado. And so your private practice. Tell me more about your private press.
[00:14:34] Joanna: my private practice is called listening for life and I provide listening and spoken language services to families. And I also see adults and geriatric clients to, after they've received cochlear implants, usually that's for very short periods of time. And then through the so then I, and I'm able to provide early intervention services.
[00:14:56] So I'm part of the Chip program here within Colorado, which provides early intervention to children with hearing loss. But primarily I see, you know, children come to my home office or we are doing a lot in through zoom. Right. And you and I have worked together to at the very beginning.
[00:15:14] Gotcha. That was probably. I don't know, 12 years ago now, maybe that we started doing tele-health are offering telehealth services. And so I also get to see families up in Wyoming as well. Because there aren't any listening and spoken language therapists. And so that's what I always tell the students that are coming through.
[00:15:33] You should move to Wyoming. They really.
[00:15:38] And there are wonderful families that there. And so that's pretty much what I, and then I have provided love and logic behavioral consultation, and also trainings. It's been a little bit since I've actually done a training. Now they have it online as well. And so families can sign up just through love and logic to
[00:15:58] Todd: So talk.
[00:15:59] So for the listeners who may not be familiar with love and logic, what, what is love and logic?
[00:16:05] Joanna: Great question and sorry, I didn't expand on that. So love and logic is more of a behavioral or parenting technique on you know, when we're, when we're working with kids. With hearing loss or without, right.
[00:16:19] We're trying to figure out how can we raise these kids to be self sufficient as they get older. And to be able to make it in this world, that's kind of like what our goal is as parents, right. Is to help them be successful and happy and to be able to manage and be contributing citizens in our world.
[00:16:38] And so, and as part of the. Listening and spoken language and the AB track, you really learn about behavioral intervention. And that's how I learned of love and logic to begin with. That was, that was one of the components, right. That we have. To learn in the AP track. And so when I moved here, 11 logic is actually based out of Colorado.
[00:16:58] And it really talks about setting limits right in a loving way, and then helping our kids to kind of become problem solvers. So when a problem is caused, right, or when the child causes a problem, you're helping them to figure out how can they. Be the one to solve it or to get themselves out of it.
[00:17:18] But by setting those limits early on they're learning that you're going to be consistent in their boundaries. And a kid's job is to figure out where are those boundaries, right? Where am I supposed to bump up against? And are you gonna hold me accountable? So I started offering classes probably 10 years ago now, maybe a little bit longer ago.
[00:17:43] And I think that was before I began teaching up at CU and it kind of filled the need for me cause I do enjoy teaching a lot, but it was kind of true to my heart as a parent of twins. How, you're just not sure how. How you're going to manage this. Right? And so I'm using it in our household, but then also in therapy sessions and helping the families that you're working with learn, how can we up the possibility of you enjoying being a parent and less of the control battles?
[00:18:14] How can we just help give you some more tools in your tool belt?
[00:18:18] Todd: And I've seen you present on this. So this is, you know, you do a wonderful job presenting what love and logic is, and that was a great explanation. Do you, so do you have parents who. I have heard of it and are coming, saying, this is what we want to more training on.
[00:18:37] Joanna: Right. You know, sometimes I'll consult, right. If they have a specific question, but for the most part, as I'm working with families and especially in early intervention, but with my other families, because behavior tends to be a huge impact. Always right. It's not an, if it's going to be an impact, it's a win.
[00:18:57] And so it's kind of like having an idea of where you're going, even if this might not be whatever in the class that we're presenting may not be your issue right now, it is coming down the pipe. And so how am I going to. Address it as it comes. And do you feel confident and like, okay. Right, sure. This all kind of boils down to, I'm trying to replace this frustration with empathy, right.
[00:19:20] Because we all have that need to be heard. And you know, if, if you, I don't know run into the curb and you. Mess up your car. It's a lot more effective as somebody like, oh, that stinks. Right. As opposed to, I can't believe you did that. You shouldn't even have a driver's license. Right. Which so trying to like start with that empathy.
[00:19:47] Right. And then really have simple actions and realize for families too, there doesn't have to be a lot of language with our little kids. And I think. We oftentimes, as a culture, think that we don't have to worry about it until they're a lot older and really you can start molding this very young and nine months when they start throwing things off of their tray, having a very consistent, a very consistent outcome of like, ah, that's sad, looks like you're all done and removing them.
[00:20:15] Right. And kind of just helping them know that there are boundaries even at nine and 10. That we have the same reaction that is not angry and intimidating, but lovingly you will have the same outcome. Right. And kind of giving those limits that what can we enforce? And so talking with parents, you know, let's see if this is, there's a lot of power struggles.
[00:20:38] How can we take that away a little bit? Can you give them some control in areas that you don't really know? Care about so much. Like, I don't mind if you sit in this chair or this other higher chair that I have, which one do you want? Because we all have the desire to have some control. And so kind of walking through what are some of the elements that you really can control as a parent?
[00:21:00] You can't make your child talk. You can't make them potty training. You can't make them eat. You can say I'm happy to provide you know, like ice cream for kids who eat their healthy foods. Or I'm happy to take kids to the park who have put their things away. So kind of learning, how can I change the way that I'm interacting to help my kids have the outcome that is going to be a lot better for them in the long run.
[00:21:30] Todd: Professionals want to get training in level lodge. You mentioned there's online training. Are they still doing sort of the in-person workshops and trainings
[00:21:39] Joanna: there? Yeah, I don't know if they've picked that up since, since COVID right. It went online, but yes, they were doing, they, they usually do a big training in the summer, up in.
[00:21:49] It's oftentimes in beaver Creek, I think so it's a gorgeous place to go. But when I moved here, I went through the facilitators training so that I could teach or facilitate the classes. And they still are offering those as far as I know as well. Yeah. And there's a few different curriculums, right?
[00:22:09] Like there's the six to 12 year old range, which is the raising responsible kids and the 11 LA parenting 11 logic way. And then there's Parenting there for early years and that's for birth to six. And then they have a newer one out now that's for children with special needs. And kind of talking about how is this going to be a little different and then they have another one too.
[00:22:31] That's for trauma children. So, or for children who have been through trauma, excuse me. Because it is, you know, you know, your child the best, and that's where I always come back to. Sometimes maybe the scenarios or the examples that they said, or the things that they're encouraging, if it's really hard for you as a parent, if you don't feel like it jives with you, you know, your child and your family best.
[00:22:53] So we're really working to give you tools that will work in your life. That will make it a better relationship because. You know, 11 lunch, it kind of talks about these are your kids are going to be the ones who are picking out your nursing home. So
[00:23:11] Todd: very true. One of the founders of loving logic from South Carolina.
[00:23:19] Joanna: Right. I think it was, I think it was Charles Fay Wright who came, who went to the university of South Carolina?
[00:23:25] Todd: Yes. So all roads lead through Columbia sounds. Right. So I'm you, you with your practice? How or I should say.
[00:23:38] What are some, some things you like to use when you're working with families and kids. So obviously love and logic, those materials for behavior management and those techniques and strategies beyond that, in terms of just more listening and spoken language, what are some of your go-to kinds of materials and resources that.
[00:24:00] Joanna: So I think that I do use kind of a compilation of a lot of things. The hearing first website has been wonderful. The listen foundation has a great website, too. And then, you know, I think that I'll pull from just some different Backgrounds, I guess, and then talk to them about like, what are the timelines, what are we looking at?
[00:24:21] And thinking about stages instead of ages, per se, but where again, kind of, where are you going? What's the expectations for the next step in development for your child and kind of developing that whole child. So looking for timelines, but more of expected developmental milestones, right? Of what are the next steps that.
[00:24:44] That we want to encourage. And a lot of those can be found on the hearing first website or through AIG balance. So I do use a lot of, of that, or sometimes actually I use quite a bit too from the cochlear implant websites as well, depending on what the family is, where they're needing some materials too, whether it's showing a video, sometimes it's.
[00:25:11] Putting on a, what's an example of what the hearing loss might sound like and how does. Sound different with the conversation versus versus music versus background noise or showing videos sometimes too on what does an FM system really sound like? Because I think those can be really powerful.
[00:25:30] So it's not an every session that I'm pulling those, but sometimes just laying the foundation and helping bring families alongside of. Do you understand where we're going and what your child has access to and how can we improve it?
[00:25:47] Todd: Right. Well, those are great ways of, of, of getting the parents to understand those, you know, where you're going.
[00:25:54] Cause I think I had a conversation just the other day of a professional was talking to me about You know, basically compliance, you know, and issues. And, and I said, I said, what did you have, like did you set some expectations when you first started working with the family and they kind of sort of him and Han yeah, well, yeah, kind of, yeah.
[00:26:18] I says, well, there, there you go. Right there. You just answered your own question. In the beginning, in those first couple of sessions, you need to set the expectation of. It's going to happen, where do they want to go? And this is how you're going to get there. And this is what it's going to take to get there.
[00:26:34] And you, you keep reinforcing that, you know, if you're kind of wishy-washy on that. And then, you know, it's not really. And pressed upon them that they need to keep the hearing aids on, or they need to be whatever you want them to follow through on. And then you're going to see those lack of compliance kinds of issues.
[00:26:51] I say, you have to set those, those goals. You have to set those expectations really early and really. Hold their feet to the fire. Right. You know? And so in most families do comply. Most families do want to do those things. They want to help their child, you know, and then we have other families that have other circumstances or other points of view.
[00:27:13] And I said, if you, but if you keep bringing it back to what they have said, they want for their child and you lay out what it takes to get there. Then that's what they've agreed to now, if they've changed their mind and I can go maybe see someone else or go get another approach. Right.
[00:27:34] Joanna: But then how do we get there?
[00:27:37] And. Like looking at those data logs, or I've been really impressed with the, with the leaner recordings, right. That you can do, and really look at the background noise. And sometimes that can be such a huge spring springboard for those families to see. Cause you can say, look, you're using so. Many great words.
[00:27:58] But then when we look at the distance, right, or you look at the background noise, you're doing the really hard part of talking so much and narrating and talking about strategies, but I'm concerned that maybe they're not able to hear all of those great words. So what can we do now to make it better?
[00:28:15] Right. What can we do to, so you're doing part of it that can be. I think that helping them see the positives that they're doing and be able to build on it can be so empowering for families, right. That you can do this. You're already doing part of it or like, this is where we are. Let's do it again in a few months.
[00:28:35] And so if they're, if their data logs are showing that they're wearing their hearing. Four to six hours a day, let's push that. Let's get to eight to nine hours a day, or, or what's your, what is your what's your routine for putting them in? How can we get them in sooner? Can we move them into the bedroom instead of where the baby is?
[00:28:54] Right. Instead of in the kitchen, because we all know what happens. You know, somebody has an emergency or a blowout and it ends up other things that happen in the hearing aids don't get put on for two hours. And so if it's first things on last things, And you start that. Great. So I think kind of talking through those scenarios with families where they almost come up with, how do you think we could, we could help you be more successful with this,
[00:29:24] Todd: letting them reflect on the situation.
[00:29:26] Problem solved. Right. But, but, but I like the idea of focusing on what is working well, and that's goes into some of the stuff I've I've read about is the sort of the appreciative inquiry approach. If you've heard of AI, And it's sort of, you know, part of that positive psychology aspect of psychology, you know, more positive psychology focus on what's working well.
[00:29:54] And how do we replicate that? And if we keep doing that over and over again, then the, the negative stuff starts to fall away. And so that's, that's sort of an, a real simplified explanation of. Appreciative inquiry is, but you know, you can see how that is going to work better with families. And I kind of use it with my grad students too.
[00:30:17] I said, okay, let's focus on what you did really, really well. And keep building those skills. And then all this other stuff, let's not talk about that. I mean, they know that this is probably not what they wanted to do or should have done. And then we're going to focus over here
[00:30:36] Joanna: too. When you, when you lead with the positive, right. What they're doing or what are you? We all feel that way. Like, cool. I've got this part down now. Like do have the energy to go into attacking the next thing. Right? You can almost do that with anything right. With it. Whether it's exercise or eating well, or, you know, making connections with families.
[00:30:58] Yeah, I think that taking the positive and running with it and trying to build in more is really the way that you love what you do. Right. Are you,
[00:31:07] Todd: and even, I mean, it's, it's a simple thing for, for some of my grad students. I say, you know, even if, you know, teaching them the idea that success breeds more success.
[00:31:19] And I, and I say, you know, if the child you're working with feels that they can do something. I'm feeling successful doing it. They're more likely to do it again. So let's break that down. And a lot of, even if that's an Arctic kind of goal or if it's a language goal or listening goal, or, and so then you can expand that to families and parents you're working with, if they feel like they can do it, they'll do it
[00:31:48] Joanna: again.
[00:31:49] And if they feel like they can do it well, right. Then they want to keep doing it. But I think that's the case with, with like kids and families alike and giving them a little bit, what's the next step? What's the next thing you did that. Awesome. How did it feel? What's what do you think you could do and kind of helping the parents problem self?
[00:32:07] How can we make it a little bit more challenging now? Because. They've totally mastered that they're doing it. Great. So what do you think would work in, you know, in your scenario at home? How can you make it a little more challenging so that they're still successful? Or if it's too challenging, how do we make it so that it's not so challenging, right,
[00:32:25] Todd: right.
[00:32:27] Awesome. Yeah, this is a good discussion. I wish all my students could hear it too. So I'm going to, I may make them listen to the podcast. So speaking of students and, and new graduates and people may be starting off in this area of their field of listening and spoken language, what advice would you give them?
[00:32:50] Joanna: You know, I think, and I do say this when I, when I'm teaching at the beginning of, I feel so blessed to have the field that I'm in. Right. I'm so thankful. And you know, there are hard times for sure in any job, but. Wherever you find the passion, the excitement, the ability to keep learning and to help others grow.
[00:33:14] And it may not be in the listening and spoken language realm, but if it is even if you can help one or two families kind of get that. Excitement of like, oh my goodness, look what you can do. Look what you get to do. Look at how much fun this can be. And it's kind of that aha of I did you see that they heard that and that they actually responded?
[00:33:40] So I think following that passion and yes, there's a lot to learn, you know, you know, better than anybody that listening and spoken language is not the easiest path by any means. But it can have some of the most amazing outcomes. And we see this in our college students that were our kiddos that we worked with years ago.
[00:34:01] Right. They're getting master's degrees they're going on and just lighting the world on fire. So. You get the opportunity to walk alongside families for this journey. And sometimes it's such a short journey, but it's so exciting to get, to watch them take flight and just take those baby steps and keep going.
[00:34:23] So I think it's so fun. It really has been. I'm I'm so thankful to have the field, right. And to be able to be continually growing and learning and being able to employ what you're learning to see it get better and better. So get excited because you have such a fun path ahead. That's filled with lots to learn, but lots of amazing things to get, to walk alongside families and see them experience and grow in.
[00:34:54] Todd: Well, that is great advice. And, and certainly is certainly has described my feeling I'll I'll, you know, pass 30 years or so of, of in and out of all of this. So how can people get in touch with you and, and maybe interact.
[00:35:11] Joanna: Sure. So I do have a website and email address, so you can go to www.listeningforlife.com.
[00:35:19] Or email me at [email protected]. Sorry. It's dot com. I'm wrong. It's dot com for life.com.
[00:35:31] Todd: Well, it's been a joy talking to you, so thank you for being on the pocket. Well,
[00:35:38] Joanna: thank you, Todd. It was great to catch up with you again, wonderful to see you as always and thankful for all you do in our world too, in this community.
[00:35:47] Todd: Thank you. It's always great talking with Joanna and I wish her continued success with her private practice and everything she's doing out in Colorado. And thank you for listening to today's episode. Please. If you don't mind, leave us a five star review that always helps us to attract new subscribers and to be able to share this podcast with more people.
[00:36:13] And with that, thank you again for listening. I'll be back in two weeks with another exciting episode and until then be safe and be kind.
This has been a production of the 3C Digital Media Network.
Episode 26: The Listening Brain - Linda Daniel
[00:00:00] Todd: Welcome to episode 26 of The Listening Brain Podcast.
[00:00:14] Welcome to The Listening Brain. I'm your host, Todd Houston. In this podcast, we explore childhood hearing loss through the lives of the. And families who are on this journey and the professionals who serve them.
[00:00:39] Hi, it's Todd Houston. Again, I want to let you know that the 3C Digital Media Network continues to add new webinars and other content almost every day. So please go to the website at 3cdigitalmedianetwork.com and check out what we have to offer. In fact, I've just uploaded two new webinars about working with kids with hearing loss.
[00:01:11] So go over, check out those webinars. If you like what you see, go ahead and take one of them and then recommend it to your peers. We'd really, really appreciate it. We also have a new webinar from Stacy Kraus who is just a phenomenal presenter. She also deals with hearing loss as well as working with other kids that have other diagnoses.
[00:01:37] So check out our new webinar from Stacy Kraus. So again, check us out at 3cdigitalmedianetwork.com and see what we have to offer. Now, let's get back to the interview today. I have the pleasure of interviewing Linda Daniel. Linda is a board certified, licensed audiologist and listening and spoken language specialist, certified auditory verbal therapist with over 45 years.
[00:02:08] Experience in the field. She earned a bachelor's degree in speech and hearing science from the university of Iowa, a master's degree in audiology from the university of Denver and a master's degree in communication disorders from the university of Wisconsin at Madison in her graduate education. Lynda focused on Aral rehabilitation, language development, and human information processing.
[00:02:39] She's the owner of here in Dallas, a private practice in which he provides oral rehabilitation services to individuals of all ages around the world via telehealth. She provides services to individuals with hearing loss, living in diverse cultures as well. It is my pleasure to welcome Linda to the podcast.
[00:03:06] Linda welcome to the podcast. Can you give us a little more information about your background and how you got into auditory, verbal therapy, listening and spoken language services?
[00:03:18] Linda: Sure. I would be happy to thank you for having me well at it goes back to when I was four years old. And my brothers were in school and I was sitting in the living room and pondering life and communication.
[00:03:34] And I started wondering how I can think a thought and move my mouth. And then you can hear the thought that was in my head. And I was, I've been interested in. The mystery of communication, literally since before I went to kindergarten and it was, I was never around any deaf people. Bred to think this way.
[00:04:02] I just always thought this way. And I would experiment that door door, and I just fascinated by how words that had meaning were broken down into sounds that are mouth produced and people can hear them. And just literally that whole process has fascinated me since my earliest memory. I just happened to be born in Iowa and my older brother went to the university of Iowa.
[00:04:33] So I went there just because I was following him, not knowing it was the original audiology program and a hotbed for all kinds of speech and hearing research. So I was very fortunate to study under the, a lot of the founders of the field at the time, because I was there in the early seventies. And so.
[00:04:55] You know, I had speech science, hearing science, and psycholinguistics from a lot of the foreigners in those fields. Then I knew I wanted to teach deaf children to speak so to speak, and I knew I didn't want to go into clinical audiology. And at the time Julia Davis, who was against. One of the very first oral rehab people she was at Iowa.
[00:05:19] So I told her, you know, I was interested in rehab audiology, so she's, you know, suggest there were only three universities at the time that even addressed it. And I picked the university of Denver because I love the mountains and I love to ski little did I know that Doreen Pollack was just a half a mile from DEU.
[00:05:41] So I went through the DEU audiology program, which. You could say how to rehab emphasis, but you know, audiology, wasn't a very developed field back then. Right. And so I, I took sign and I, you know, took a practicum in oral for some of the oral kids in their preschool. I took a practicum in total communication cause they had a TC class.
[00:06:02] So I had an overview and I would say. Of of pediatric oral rehab. And then I heard about this woman that, you know, so to speak, teaches the blind, to see, and the deaf to hear, you know, and that she was putting on a, a solid, a solid week workshop. And I was told that, you know, since I already knew sign and was able to do that with kids, this would give me a whole different.
[00:06:31] I wasn't told really what she did, but I was just, it was recommended. So I went and needless to say, You know, my world changed. You know, she stood on stage for an entire week, starting with tiny babies. She did therapy onstage, starting with infants and going all the way up to college kids and she would flash their articles.
[00:06:58] They're aided or unaided, aided audiograms on a slide. And, and then she would stand behind them and carry on conversations with them. And it just made no sense. You know, she would show these hundred hundred, 1,015 decibel hearing losses eight at 60, 65. And yet she was conversing with them standing behind them.
[00:07:22] So. I just, I mean, I'm getting goosebumps telling you it was transformational, obviously. And so I sat down with her at the end of the workshop and I said, Doreen I'm scheduled to start and our rehab program. At the university of Oklahoma health sciences center, children's hospital, and I've only had one week of your class.
[00:07:48] What advice do you have from me? She said, that's fine. Just start with a child that has plenty of residual. She said, don't start with a really profound child. She said, get your feet wet on children that have a moderate, moderate to severe loss. And so I did, and, and of course they started talking very quickly.
[00:08:12] Fortunately they did not have associated disorders. And so then her, her advice, I started taking kids that were more severe in the profound range and And after two years of doing that, I realized that as an audiologist, I did have, I did not have enough knowledge about language development and language disorders.
[00:08:34] And so I left and I went to the University of Wisconsin at Madison because they, at the time they were very well known for their language development, language disorders program and research. So I went there and got a master's in speech and hearing. And while I was there, I happened upon their cognitive psych department and I knew Doreen always talked about the dominant sense and the weak sense, and we have to reduce.
[00:09:07] Stimulation of the dominant says Samson order for the brain folk from the weak sense. And I wanted to be able to explain that in a in a very professional way. And so I took some courses in cognitive psych, particularly human information processing, which dealt with that. How does the brain use senses together or does one sweater does one sense inhibit the.
[00:09:33] And when can a sense facilitate the other. So I really wanted to get grounded in human information processing as the foundation for. Doing auditory verbal therapy during Wenk doing language development, et cetera. The other beauty of Wisconsin is that they were very adamant about following normal development.
[00:09:57] Even if it meant what I called the tissue paper, thin stages of speech, language audition of anything in development. And that that particular background of. Of having normal development as my model. That's how I started working with a lot of children with multiple disabilities. And people would say, well, how do you know what to do with them?
[00:10:24] What do you do with this child? He doesn't look at you. You know, he doesn't imitate you. And I just said normal development, right? What's the very first step that I want from this child. And I might work on it for six months. And start to see inklings of it. And I just pursued that normal developmental model.
[00:10:47] And that's what really I would say allowed us to see outcomes. We never expected from a lot of the children with multiple disabilities. So that, I think that tells you my personal background and my academic background and how. Wove all of that together into a Avi.
[00:11:09] Todd: So you were extremely well-prepared for a life in auditory verbal.
[00:11:14] Linda: I, I very fortunate to say I was. And yes, I had the basic sciences from Iowa. I had, you know, basically I would say some clinical audiology and a little rehab from. Denver. And then this very strong, developmental and cognitive psych background from Wisconsin.
[00:11:35] Todd: So with, with Doreen being in Denver, as well as Marion, Ernst another great pioneer in the field, how was it?
[00:11:46] What was it like? Just sort of being in the room with them. Just letting them coach you as a young professional. How did that dynamic sort of, first of
[00:11:57] Linda: all, I want it totally thank you for mentioning Marion. I did not intend to leave her out. She was a pivotal pivotal person in my professional development is still a very good friend to this day.
[00:12:10] She's an incredible person. I did not actually work with Doreen. I worked at her facility after she left and when Robbie McDonough had taken over but Marian was still there. So I had a lot of contact with her. There were about a half a dozen of us that were. It's all kinds of developing in this at the same time, Nancy colicky, skank and Robbie McDonough, and you know, there Meredith steward there, you know, there's about a half a dozen of us.
[00:12:40] And I just remember, you know, I don't know how it sort of worked out, but we'd end up at Marian's house and kind of like the, the The people sitting at the feet of the guru, like in India, how you picture the guru sitting there and everybody else on the floor in a little semi-circle. I mean, that's what my memory is.
[00:13:00] I don't know if we really sat in a semicircle, but it was that feeling that the master is speaking and we we'd be there till 12 or. One in the morning we cause Marion loves to tell stories one sec, one question and oh, that reminds me, you know, so then we'd hear about a particular child years ago that You know, that really didn't fit the mold and what she did to how that kid come around now.
[00:13:31] Marianne is interesting because she was dual-certified speech path and audiology. And she also started out as a regular ed teacher. And she says that it's her experience teaching. Children without impairments that gave her, her vision for children, with hearing loss and children, with hearing loss and other disorders, because Marianne, whenever any child would come to her, you know, Marianne, there's a speech contest.
[00:13:58] There's, you know this presentation con contest, do you think I should go out for it? Why not always, right. Why not? You know, and she always gave those kids. Literally limitless vision of themselves. So I always say that Dory I've learned, I learned from Doreen how to teach those early stages of listening and speech.
[00:14:26] And I learned from Marriott that vision. Always have a an open ended vision of every child, no matter how many multiple disabilities, how many disabilities the child has in your mind, just keep the sky is the limit and just keep working toward it and give them all kinds of opportunities to try and fail and try again.
[00:14:50] So yeah. Dorian gave me the basics of auditory verbal, and again, not really from her, but by her, from her workshops. And I don't know if you remember those five ag bell tapes. Oh yeah. Yeah. I mean, I couldn't tell you how many times I watched those and I can still see her with the little plastic thing with making the zoo cages with the animals.
[00:15:15] I mean, I was just, I just wanted to absorb everything I could and that's about all there was back then. Right. So yes, that's what I did. I had Doreen's workshop, which was spellbinding because of the profound nature of those kids. And what they were doing and then her videos, and then knowing Marianne and I used to actually go to the IEP meetings with Maryanne and I would just sit back and be incredulous.
[00:15:47] She would just so easily say, okay, now, now this child needs to be taken out of science, social studies and health. And I want her to have three hours of language arts every year. And I, and she would just very sweetly, very calmly command the room. And granted this child was in a, in a school district where they were, they were accepting of, of what she was proposing.
[00:16:16] But to me it was just the most radical. Thinking and she just so clearly said it and she would always say, and these were kids without implants. You know, they were struggling at 7, 8, 9 with language. And she would say once they learn language, they can learn any academic content area. But if they don't have their language in place, they're never going to make it in those content areas.
[00:16:43] So, yes both Doreen and Marianne were. Yeah, they were my foundation. They were both visionary, brilliant, visionary, limitless in their thinking about children.
[00:16:57] Todd: All right. So, you know, they, they certainly have a legacy and not only the lives that they've touched in terms of the children they worked with, but just being a mentor to so many people. It's been just a wonderful thing to see in the field.
[00:17:15] Linda: Yes. I think it was two years after Dorian taught her week long workshop. Marion taught a workshop on the school age child. And so wherever I was at the time, I flew to Denver and took that. So she went through all of the things she did to teach reading, to remediate reading problems.
[00:17:35] And that was, that was invaluable also to get that education component.
[00:17:43] Todd: So you had this wonderful sort of mentoring growth experience in Denver and then take us from there because now you're in Texas. And so let's fill in those gaps from Denver to Texas.
[00:18:01] Linda: The Texas is a very interesting guy because when I was living in Denver I had a small private practice and.
[00:18:13] I made the, the reason I went to Wisconsin was I wanted to understand cognitive science. I wanted to be able to explain what I was seeing in these kids to professionals. And so from my earliest days, really before my Wisconsin graduate program was even over. I was submitting proposals to the state speech, Wisconsin state speech, and hearing AAA Asher, AIG belt.
[00:18:39] So for a, probably a good 20, 25 years, whenever I would see a call for papers, I would get out my video camera and put together a program. I used to call it an auditory processing approach to, you know, speech and language development, because I really want it. Hit that notion that it's an auditory processing approach.
[00:19:03] Yes. We're putting hearing aids on. Yes. We're getting better audio grams, but what are we really doing? We're teaching the brain to process. Sound and particularly spoken language. So so for about a 25 year period, anytime a call for papers would come out. I would head to a conference and I'd have a suitcase full of clothes and a suitcase full of VHS tapes, all set for where I work.
[00:19:32] I'd have probably 25 or 30 VHS. So I'd asked for an overhead projector, so I'd have my little acetate models. And then I had my VHS player there and I have never to this day spoken at any conference without videotapes, because I, I took a human personal growth course at one point. And they said you can't convince anything of anybody.
[00:20:01] You can convince anybody of anything. But they can convince themselves.
[00:20:07] Todd: It's interesting. It can change
[00:20:09] Linda: their own mind. So I thought, and you know, how hot, the whole debate about sign and covering your mouth. So I knew that just getting up there and saying, oh, you can teach deaf kids to hear with, without vision.
[00:20:22] I knew I'd be laughed out of the room. So I, I never told them that. I just said, we're going to talk about an auditory processing approach to oral rehab. And these are some stages we're going to talk about attention and the room talking about awareness, attention, sustained attention, auditory memory, identifying the auditory input, associating it with me.
[00:20:48] Sequencing sounds auditory feedback. So I literally just went through what I call my 10 auditory processes. And then I showed severe profound, severely, profoundly deaf kids. In therapy, doing those specific types of auditory processing activities. And then of course there, you know, first it was just the kids that weren't speaking.
[00:21:12] They were just responding to sound and then gradually, and then toward the end, they work, you know, reading, writing, doing math and verbal math problems. And so people got to see with their own eyes, severely, profoundly deaf children. Processing spoken language, learning to talk and learning their academic skills.
[00:21:34] And so that's awesome. It turned out to be very effective. And so, so they, they did put it with it, what they want to do. And I remember walking through a triple a hallway one day and a woman stopped me and she said, are you in a Daniel? I said, yeah. She said, I saw you 20 years ago at Asher with your videos.
[00:22:00] She said in that that presentation changed my career. Wow. It's because she changed her mind. Right. She saw something she didn't know about. And she decided she wanted to go down that track. So this is a long way of saying. I did a lot of presenting with videos all over the place, wherever there was a conference I'd go, which meant that audiologists and speech pathologists all over the country started seeing this stuff.
[00:22:34] So then they would diagnose a child in east glacier, Montana, or Portland or vendor Chicago. And tell the parent, there's this person in Denver that does this approach. So just sight unseen, I'd get phone calls from wherever we want to come and help us with our child. Sure. Back then everything was safe.
[00:22:57] You never thought anything of it. So I would say. Pack it all up. And, and usually that mom would know several moms in the area. So they get two hotel rooms, one for me, and one to set up a therapy room and they would set the schedule and I'd be there for four or five days. And I'd come with my bag of clothes in my bag of.
[00:23:21] And I would have these little mini clinics all around the country and and it was great, you know, sometimes I'd stay in their homes. I stayed in the home of the family that I realized was in a cult. And I saw, I saw
[00:23:37] Todd: that, oh, hold on out. So what, what was the, what was the.
[00:23:45] Linda: Oh, gosh, I don't know the name. I mean, I do know the name of the woman.
[00:23:48] I don't know if you want me to say it or not. Anyway, I eventually saw it on TV where they'd been, they'd been busted by the federal government and had all these underground weapons and everything. And. And, you know, back then I was fearless. I was trusting and I stayed in a cult. I stayed in Malibu and beautiful homes.
[00:24:11] I stayed on north lake shore drive in Chicago. I stayed in the mountains at east glacier park, Montana, and I saw the, I saw the U S as a, as a individual therapist. Going out there taking it out there.
[00:24:28] Todd: And that's really, that's really incredible. I, I thought you were gonna tell me you were with the Manson family for a little bit before your time there, but yeah, that's, that's really incredible.
[00:24:39] I've I've done that a couple of times. Not, not often where a family would contact me. Yeah, I would go and visit and, you know, work with their child and give some recommendations, that kind of thing more as a second opinion kind of thing. But you really sort of had a circuit going, you would really out there with lots of different families all over the
[00:25:00] Linda: country.
[00:25:01] So I go to each of those cities, maybe every six months, every four. You know, and, and while I was there, I would go to the preschools and talk to the directors, say we have this child with hearing loss. We want them in the normal preschool. Here's why. And I would just kind of set the, I might find an OT or, you know, specific people in the community that, you know, had what the child needed.
[00:25:26] So I would kind of set up the whole thing when I would go so one day I was in my apartment in Denver. And I got a call from a woman in Texas in Dallas. And she said that she had called Dan Lynn and asked if he had a student that could come to Dallas and work with her child. And he said, no, but there's somebody in Denver who goes around to other cities.
[00:25:53] You might want to contact her. So. I suppose somehow he knew how to get ahold of me. I don't know how, but, so he told her how to get ahold of me. So sitting in Dallas, so sitting in my apartment in Denver, got a call from a mom in Dallas saying that she and another mom wanted me to come to Dallas. So, so for two years, I came in here about every eight to 10 weeks.
[00:26:19] And then through this one particular audiologist that grew to nine children. Yeah. So then we're coming as state for seven days, nine days, 10 days. And I just had my bag of toys and they give me a car and I would just drive from family to family. And I just had my little gig going here. After two years of that, the mom that originally had called me was driving me to the airport and she was, she was very straightforward women.
[00:26:54] So we were just driving along, nothing said, and she said, you don't want to move here. Do. And I said, oh, well, I don't know, what are you thinking? She said, well, you have whatever it was seven or nine kids. And she said, and I know five more. She said, you have a CMH twice a week. You've got a full private practice here.
[00:27:13] If you want. And I said, sounds good. Cause DEP Denver was pretty saturated. There was me and Robbie and Nancy Caleffi Scag and Mary Moser. Yeah, there were too many of us in Denver and it was a great opportunity to start a new city. So I went home, packed up my worldly belongings in my Buick Skylar. Drove drove to Dallas.
[00:27:38] And and that was in late 88. So I had already started developing a V for about two years in Dallas. And then one day in 89, the phone rang. Hello, this is Dr. Robert Peters. You and I share a mutual child. Her mother tells me what you're doing with deaf children. I'm so glad to know this because I want to start doing cochlear implants.
[00:28:10] And from that phone call to this day, I have done, you know, we've developed an incredible relationship and of course, with the audiologists and, and now we put on our psychologist and so together, Dr. Peterson. Developed, obviously he developed the the medical and audiology department and then I came rehab person.
[00:28:36] And so since his first implant in the early nineties, he's referred every single child and then eventually adult. And so I've been working with a lot of adults over the last 10 to 15 years.
[00:28:49] Todd: Right, right. I do re I remember you and I chatting about the adult work you've done. And so is Dr. Peter still practicing?
[00:28:59] Linda: Yes. And if, you know, it's just an interesting story because unbeknownst to him and me, I was preparing Dallas for a V. He was doing his residency with Dr. Maddix at the, at the Houston air research foundation. During the investigational period, I moved here November 88. He moved here in 89 and then just by chance, so to speak this child that I was seeing started going to him, he found out about the program I was doing, and that's been 30 years now.
[00:29:39] Todd: And the rest is history there. So, so, so you have here in Dallas and then that's the, what the Dallas ear Institute, and then there's the foundation, correct? That's all right. So all these things have, have sort of evolved out of this relationship over the years,
[00:30:01] Linda: here in Dallas is my private practice.
[00:30:03] Dallas Institute is the medical and audiology program. We're separate, but we're all one family. And then we started realizing in the late nineties that some children couldn't afford hearing aids, cochlear implants, and that's when Dr. Peters filed to start a foundation. And we started, you know, with some local families that were needing it and it didn't take long at all before internationally, people were finding us on the internet and they started coming.
[00:30:38] Todd: And so you, we talked a little bit earlier before we started this episode. About what you've seen over the years and how your practice has changed and how the practice of listening and spoken language auditory verbal has changed. What, what have you seen over the years?
[00:30:57] Linda: Well, I remember in the olden days I'm doing about 20 hours of AB a week was enough to.
[00:31:09] You know, it was take all your energy. It was very hard back in the days of analog hearing aids, those low frequency, boomer hearing aids, those children hurt so little, it was exhausting doing an hour of therapy. And so I remember number, number of us therapists at the time saying, yeah, twenties about it.
[00:31:30] You know, to have any energy left. And also it was very difficult working with children with multiple disabilities because you just couldn't get much meaningful sound into them. And they had so many other problems. It was just so much harder to work and it was already hard with a neuro-typical child.
[00:31:50] So number one, the number of hours of therapy a day. I can do so many more because they hear with our technology, with our cochlear implants. And I also find that it has, because, you know, it's so obvious the amount of hearing kids have in terms of their improves thresholds. I think a lot more physicians are willing to implant children with multiple disabilities now.
[00:32:19] And so I feel that it's really opened up. AB oral rehab, all methods to more and more children with multiple disabilities. Cause cause they can hear. And so we can, we can help them with one of the most critical senses that they're, that they have deficit in. So I would say that another thing I would say is late identification, late implantation.
[00:32:48] Is much more I think the outcomes of late intervention are much more promising than if we were fitting a five-year-old with boomer, low frequency hearing aids. Now you take a five-year-old like I have a little boy from Nigeria right now that never had any technology. And he just turned five and he's been activated for about probably 15 days or so.
[00:33:13] And because he's a smart, smart kid, he doesn't have associated disorders. His mom is just. Just the most motivated and she's taking the hearing first classes online. She's, you know, she's educating herself in HIV. And I, I truly think this child is going to be Competent verbal speaker when he grows up starting at age five, you know, I started kids at age five that were neuro-typical at great family support.
[00:33:48] And by 12, 13, they were, they were really competent, verbal speakers, fully, fully mainstreamed, et cetera. So I think those are the three things increased number of therapy sessions a day. Much greater access to better outcomes and children with multiple disabilities and much better outcomes for children implanted later than the early intervention concept.
[00:34:16] I think those are probably, and being, allowing mothers to work. You know, I think the technology is so good now that, you know, in the olden days, moms would quit. You know, to stay home with their kids. And I see parents now, you know, two full-time jobs, you know, a nanny, you know, various preschools. And I think that the technology.
[00:34:41] Is allowing families to have a lot more options.
[00:34:46] Todd: Right. And as you mentioned with, with like all of us, sort of with COVID and having to do teletherapy as well how, how has that experience gone with you? I know you were doing teletherapy before. COVID. How has that continued to sort of evolve in your practice?
[00:35:06] Linda: Yeah, so I did tell a therapy with a handful of families around the world, through our foundation for about six years before COVID came. And so I felt very fortunate because I could just start doing it with my locals. And once insurance approved. There's been some sticky things with insurance, but overall they were approving it.
[00:35:29] And I have found, I have found that with the neuro-typical kids, I feel it works really well. And you know, it's just straight parent coaching. You're coaching them to have normal development of the child, normal auditory, speech, language development, et cetera. I find it more challenging when the children, when the children have other issues and they don't really engage well with the parent and they certainly don't engage with me on the screen.
[00:35:58] So a couple of those early on the parents found some people in town that were doing face-to-face therapy. And so, you know, I totally agreed that that's what the child needed. I, I find that a teletherapy with, with the type of mom that can, that's willing to make some changes in her interactions, which I find most are I've had one or two that just couldn't see themselves doing what we do.
[00:36:33] And they wanted to. Kind of do nothing other than what they normally do. Maybe do it a little more, but. It really wasn't the teaching style that we typically train parents and caregivers to have with their child, a real dialogue style, you know, turn-taking and a very do this, do this. Now we're going to do this now we're going to do this.
[00:37:02] So I would say that with the exception of a few mothers styles and with exception of a few kids with associated disorders where the, they just didn't engage well, it's been. Very effective. It's been very effective and I've been fortunate that our kids that have come from other countries have not had associated issues.
[00:37:27] So I was able to follow that normal developmental track with the mom in my code.
[00:37:36] Todd: Yeah. And I've what I have seen is certainly the coaching models built in, you know, you, you know, you sort of have to do the coaching and I think for some. For some individual, especially over the past year. I think there are lots of people whether they're doing AB or not, but they were working in early intervention and working with children that birth to three level.
[00:38:03] I think a lot of people who then. Or had to do telepractice realize that they probably weren't doing as much parent coaching as they thought they were doing until that came along and they were forced to do it. And then there is this scramble around how do I really coach parents when they thought, you know, just by going into the home and showing them some activities and then leaving it, the parents would know how to do it.
[00:38:30] And I think. I think we saw a big change there in the whole parent coaching aspect of this with telepractice.
[00:38:39] Linda: Yes. And I've gotten more refined at it. Myself. I tend to be a very hands-on therapist. I like to work with the kid. I like say, okay, I'll do it. You do it. I'll do it. Okay. Now mom do it.
[00:38:51] Okay. Now I'm going to, cause I like to probe and put. And find how far I can get the kid to go on any particular goal before I, you know, say, okay, good. And then explain to the parents. So I'm a real hands-on therapist. So teletherapy really pushed me to my new teletherapy coaching style. And I'm glad it did because it's been amazing.
[00:39:23] It's amazing what a mom and child can do without coming, without leaving the house or leaving their country. Sure.
[00:39:33] Todd: And, and, and I, I certainly do acknowledge, like you said it may not be for everybody, you know there are certain situations where you. Prefer to be in person or, or be in person versus telepractice.
[00:39:46] But I think it, I think going forward, you know, I think the, the genie, the genie is out of the bottle, so to speak, and I think we'll continue to have. Just in general, more and more tele-health services. And I think telepractice and with auditory, verbal and listening and spoken language will continue to be a huge area for families and practitioners as well.
[00:40:10] So it's, it's been interesting to see that evolution over the years and this sort of adrenaline push that COVID gave it or it's now more available than it used to be. My, my concern has been. Just in general with telepractice that we were sort of, everyone had to just sort of jump in overnight and do it that, you know, first, you know, this people getting really the children and the families getting really terrible services because suddenly you had professionals who didn't really know what they were doing in terms of the telepractice component.
[00:40:46] Cause they'd never done it before. And then I was a little concerned that, you know, families would say, oh, it doesn't work because. You know, this isn't working because the person just, you know, didn't have a lot of training, but I haven't seen a lot of that. I mean, in terms of now that we're a year post, so to speak I haven't seen a lot of that in terms of pushback from parents.
[00:41:11] I think even the families I work with who are now starting to come back in to the clinic I think they kind of want to balance now they want both, they want to come in sometimes. And they also want to, we want to, you know, there are times when they're busy and they would rather just do telepractice because it fits better in the schedule and that's fine.
[00:41:33] And so that's sort of where I think we'll evolve to is families will have choices and they can, you know, depending on the needs of the child, of course. But if like you're saying, if their neuro-typical. If they want to command great. If not, then they can do telepractice.
[00:41:52] Linda: Yeah. And I also think if, if our licensing borders open up more, I know there are some states that are doing the reciprocity.
[00:42:01] But I think the more that grows, then the more we can reach areas that don't have HIV practitioners.
[00:42:10] Todd: Right. And I th there's this, you know, the new compat, that's a. But now I guess more than 10 states have joined it now. And so it's, I guess the, this next year they're setting up the guidelines. I can't remember if Texas is, have, has passed that or not?
[00:42:30] Probably not, not to my
[00:42:31] Linda: knowledge.
[00:42:33] Todd: They're too worried about other things. From what I read in
[00:42:37] Linda: the news, you know, we're a country, you know, that
[00:42:41] Todd: I know, I know
[00:42:43] Linda: we don't have to join the union to do that.
[00:42:48] Todd: My, my ancestor. Sam Houston would not be supportive of all the shenanigans that are going on anyway. Apparently so that, you know, we've had the ancestry, you know, stuff that goes back.
[00:43:05] But yes his, his family came out. Basically Western Kira Lester, North Carolina into Tennessee, and which he, you know, became governor of Tennessee before he went to Texas. So long story short, my family basically going back generations came out of Western North Carolina as well. So apparently somewhere along the way back in the, in the old days we had a common ancestor.
[00:43:35] So my, my one claim to any time anyone famous and the family so. Now we you've, you've mentioned what's going on now and, and Texas with, you know, your private practice and the foundation as you take a step back and look at the field and you have new people coming into the field. What, what advice would you give new practitioners who are just starting or who have an interest in and listening and spoken language and they, and they really want to do this well.
[00:44:11] How would you guide
[00:44:12] Linda: them? I think it's a very tricky thing because audiology, I believe in general has become so technical, so much assessment and technology, and really not focused on rehab. And I don't think most AUD programs. Have the type of auditory rehab training that we would think would be appropriate, so they're not doing it.
[00:44:36] And then as you know, many years ago graduates of masters programs in speech paths used to have. Requirements for oral rehab hours. I think it used to be 25 and then it was your duty to 12. And then I think it was reduced it to for awhile. And then they took it, took it off. So I think we had a really big problem with the two dominant fields, speech path and audio.
[00:45:02] Both of them at their highest levels, either a masters or an AUD are not training auditory development and audition as the basis of speech and language development. So I think we have a really big problem there in the olden days, you could get two master's degrees and it wasn't that big a deal. Dorian was dual certified Marian was dual certified.
[00:45:23] A lot of us, our original. Either had deaf ed and audiology or speech path and audiology. So a lot of us in yours and your, in my generation who had two degrees these days, you know, if you're going to get an AUD, you're probably not going to go back and get a speech back degree. And if you get us, if you go into speech path, it's probably because you don't want to be an audiologist.
[00:45:52] So I feel there's a really big gap in professional training. And of course we know there are a few universities that have an AR track or an AAV track, but it's, I think probably you could count them on maybe one hand. So. When I have interns either from audiology or speech bath, when I, the interns come and shadow me and they get all excited, I want to do this.
[00:46:20] I want to do this. What can I do? You know, this is what my school offers. And I usually say, you know what ever, you can take an elective, take it in the, on the other side. And be prepared for a lot of continuing education in any way that that might be. And fortunately, now there's a lot more options to that.
[00:46:45] There weren't when we were starting out, we had to buy in, you know, fly places and watch people. And we had to do it all on our own, which was fine at work, but I'm just saying they have a lot more. Online options now to learn. And of course there's the mentoring program, the listening spoken language, mentoring programs.
[00:47:06] So, you know, I just tell them they have to really want it because you can't just go get it somewhere, you know? Unless as we said, there are a few places that do it that have academic and clinical programs. I think overall, they just need to know that it's truly a combination of, of speech pathology, audiology.
[00:47:34] Normal child development, human psychology, child, psychology education, special education. You know, they need to be aware that what they see in us, what we bring to it. We're not just sitting there playing with kids, but we have these multiple bodies of knowledge. Under our belt that we bring to every moment that we do with a child.
[00:48:03] And if they're that type of person, if they're intellectually curious if they're, if they're driven inside, because it's going to take that, cause they're going to have to find it here and find it there and put it together. You know, they can do it. But you know, unfortunately, You can't just go into speech path or ideology in general and come out well trained in auditory development.
[00:48:32] The audition is the foundation for communication, et cetera.
[00:48:36] Todd: I agree. With everything you just said. Cause it, it you know, being here at Akron, they've, you know, we've had this long history with Denise Ray and Carol flexer and and so that's been wonderful that here's a university, a faculty who already, you know, have this knowledge and understand why we want to do this.
[00:48:57] But yeah, when I was trained at my, my master's degree at university of South Carolina it was back under those old ASHA's standards of 20 hours, 25 hours of oral Hab. And we were all scrambling to try to get those hours and. But my, you know, I had a really good course in audiology and a chorus and oral habilitation.
[00:49:20] That was more of a survey course, like all the different options. And here's how you troubleshoot a hearing aid, you know? So there wasn't in, in the actual formal training, you know, even though we had to get those 25 hours. It was, you know, maybe an Avi kid or maybe not more than likely it wasn't, it was, yeah.
[00:49:43] It could be anything, you know, there's a lot of TC back then, you know? And so it was, you know, I left there, although I think it was a. Program, you know, very good masters program at the same time I left needing more and I knew that. And so it was really like you were saying, it's the continuing education that we all had to do.
[00:50:08] Is going and sitting on the floor and watching and, and going to conferences and begging people to, you know, let them let you come and, and look over their shoulder and those kinds of things, unfortunately. And and so, yeah, I, so today I'm still, yeah, I'm, I'm really concerned. Continue to be concerned because yeah, the, the way the Ash requirements are now you get child speech or child language and it can be.
[00:50:35] So many, you know, you could, you could go through your master's program and speech without ever seeing a kid with hearing loss because all of your child's speech and child language hours were done with kids with autism or kids with, you know, other kids. So, yeah. So I think there's, there needs to be some changes that.
[00:50:56] Whether it'll ever happen. I don't know, because I'm sure others would want to argue why they need more training in this area or that area. You know, I think, you know, in terms of speech-language pathology, more than likely, we're probably ended up with a clinical doctorate at some point cause there's, it's just not enough time with the scope of practice to do it all in a master's, you know, typical two year program.
[00:51:23] So anyway. Yeah. So yeah, I share your frustrations with all of that. And unfortunately fortunately we're doing, you know, AB here and telepractice, and so they're getting sort of a combination of the two built in before they graduate or many of the students do not all of them. And so we're trying to make a dent in that.
[00:51:42] And like you say, there's a handful of others that are out there doing some really good work with faculty that are trained. But but yeah, the average student in audiology and speech is not going to know exactly or know very much at all about any of this.
[00:51:59] Linda: And I've had so many interests. How, how come I don't know about this.
[00:52:04] Amazing. I want to do this. What, what am I seeing here? What what's going on here? I don't know anything about this and I'm ready to graduate. Right. And I think the saddest part about it when you look at children and adults, is that hearing loss is the number one contributor to a communication disorder.
[00:52:24] And it's the one thing that nobody's being trained in. And it's just, it's just, it's hard for me to Stan, how it came to this.
[00:52:32] Todd: Right, right. Yeah. I think, you know, I think with Asheville, it's, it's always interesting dance, I guess I should say, and just leave it at that of, you know, having this, you know, the national organization and then the state licensure and all of these requirements.
[00:52:49] And again, it's trying to get all these different areas and levels of competency and, you know, it's just it's just crazy, but. Yeah, I think, I think we're getting close to a breaking point or some point where we're going to have to just say time out, we got to do something different and maybe at that point we can, you know, have a way to get more specialization before they graduate, which is what I'm I've always wanted them to do.
[00:53:19] Yes. So Linda, thank you for your time today. It's been wonderful catching up and. Good luck. And with everything that you're doing, I mean, you, you continue to inspire and, and you're continuing to sort of be this, this this shining star there in Dallas and, and a beacon for so many families and, and professionals.
[00:53:46] So I appreciate all that you're doing and good luck with.
[00:53:49] Linda: Thank you. I really appreciate you having me on, it's been really fun, kind of looking at the field together and what we both know as a lot of the history. So I've really appreciated as well.
[00:54:02] Todd: Thank you again, Linda, for joining me on the podcast, it was wonderful to learn more about all the things that you're doing in Dallas, and to learn more about your background and history in the field, it is just phenomenal.
[00:54:18] Yeah. Thank you for all that you do, not only for your families and the children and the adults you work with, but for our fellow professionals in the field, like me, who look up to you and learn from you. So I really appreciate everything that you're doing. And with that, thank you for listening to this podcast.
[00:54:42] I've been on a little bit of a hiatus with this podcast. However, I promise to have new episodes every two weeks going forward. And I apologize for that break over the summer, just too many things happening at once as we all can attest to. And with that, thank you again for listening. Leave us a five star review that always helps us attract new subscribers.
[00:55:10] And that's what we want to do. We want to share more of what we're learning. To as many people as possible. Thanks again, I'll talk to you in two weeks, be safe and be kind.
This has been a production of the 3C Digital Media Network.
Episode 25: The Listening Brain - Valerie James, Mary Clare, and Bridie Abbott
Todd: Welcome to Episode 25 of The Listening Brain Podcast.
[00:00:14] Welcome to The Listening Brain. I'm your host, Todd Houston. In this podcast, we explore childhood hearing loss through the lives of the parents and families who are on this journey and the professionals who serve.
[00:00:38] Hi, this is Todd Houston. Again, I wanted to mention the 3C Digital Media Network, which is our new company that we've developed here. And I wanted to just encourage you to you sign up on the site. All it takes is just putting your email in and that way you can stay in touch with us and we can stay in touch with you and you will hear and get information about all of our new.
[00:01:06] Uh, blogs that might come out, uh, you'll hear about our new webinars and courses. And so it's a way just to stay in touch and that's important these days staying in touch. So if you don't mind go over to three C digital media network.com and sign up and now back to the interview. Today. I have the pleasure of speaking with Valerie James Abbott and her daughters, Mary Clare, and Bridgette or Bridie.
[00:01:39] Valerie has written a new book, pat, a pillow about her daughter. Brady's hearing loss. The story is told through the eyes of the sister, however, Mary, Claire, I'm sure you'll enjoy this conversation with Valerie Mary Clare and Bridie. And I know you'll love learning more about this wonderful new Pat a pillow.
[00:01:59] Here's that conversation? Well, welcome to the podcast guys. Would you like to introduce yourselves or just a moment?
[00:02:08] Valerie: My name is Valerie James Abbott, and I am the mom of two beautiful girls. Um, I also just recently published a book, padded pillow and our family lives in Richmond, Virginia.
[00:02:20] Bridie: My name is Bridey Abbott.
[00:02:22] Um, I'm kind of one of the main characters in the book. I'm the one that has hearing loss. Um, and I'm
[00:02:28] Mary Clare: Mar, Clare Abbott. I'm Bridie's sister. And, um, uh, I narrate a pillow, so it's told through my eyes.
[00:02:36] Todd: So Valerie, I think let's start at the beginning, uh, with Friday's, uh, diagnosis and then we'll we'll work from there.
[00:02:45] Valerie: Sure. So, um, Brighty, uh, who's her formal name is Bridgette, but her nickname is Bridey. She was born, um, with. Uh, hearing, she passed her newborn hearing screen and, uh, was a very happy healthy child. And the two girls were just happy, healthy children. And at some point in toddlerhood she lost her hearing, but we didn't notice no one noticed as a matter of fact.
[00:03:12] And so it wasn't until she had been enrolled in. Preschool for about six months that her preschool teachers asked us if we were concerned about her speech and our answer was no, we're not concerned about her speech. We know that she speaks a different language, but we weren't concerned about it. And she said, well, I think might.
[00:03:37] Benefit from having early intervention, come out to the house and maybe talk. And so we did, we reached out to early intervention. They came right away and, uh, that very first meeting in the house when they're doing the intake, um, it became obvious that we were probably looking at a hearing issue and that caused.
[00:03:56] Everybody by surprise. And, um, they quickly referred us to, uh, an audiologist and we quickly did the audiology exam and then quickly sedated ABR. And it was confirmed that Brighty had a bilateral sensory neural hearing loss, moderate sloping to severe. Um, and no one could tell us how that happened.
[00:04:20] Todd: Sort of no history of hearing loss.
[00:04:23] Valerie: Absolutely no history of hearing loss in the family and no history of ear infections. She was an incredibly healthy child. Um, in fact, we, the only reason we ever brought her in work for well visits, she was never sick. So it really caught us by
[00:04:40] Todd: surprise. And so she. Gets diagnosed and hearing aids. So what happens after that?
[00:04:48] How was that first, uh, diagnosis? How, how did that affect you as a parent?
[00:04:56] Valerie: Yeah. I remember, um, you know, I know some families will describe that, that time as very, uh, gray and foggy. Um, but that time was, is still crystal clear in my mind. And I think it's because the emotions kind of steered it into my mind.
[00:05:13] Um, when, when she did the first test, which was in a booth, you know, she was two and a half at the time. And. Um, and they said, we're, we are looking at hearing loss, but we need to confirm that with a sedated ABR. And, um, and then that, that was confirmed with the day-to-day BR. That was, um, I can still, I can still see that room that we were in, in St.
[00:05:40] Mary's, uh, waiting for her. And. It was, it was, um, it was awful. It was awful because of the unknowns. I had so many questions. When did this happen? Why did this happen? Is it progressive? Will she eventually need a cochlear implant? And no one at that point had really any answers for us. And, um, I would describe that time as I was in a panic, I was in a panic for several, several months.
[00:06:10] Until we eventually did do genetic testing and, uh, discovered that she had inherited connects in twenties. And we are in good company. There's a lot of children out there who have inherited connects in 26 and that has impacted their hearing. And, um, it really wasn't until we had that answer and she had been enrolled in early intervention and receiving services, um, pretty significant services, um, that I started to see the light that I started to realize.
[00:06:40] I think everything's going to be okay. But it was, it was a while.
[00:06:44] Todd: Yeah. And so, uh, Bridey, do you remember any of that time?
[00:06:51] Bridie: I did not remember anything. And if I did, it's just from stories. I don't actually remember it. I know
[00:06:58] Todd: were very young at that point, Mary Claire. So you remember some of that of getting, just according to the book, you remember her getting hearing aids.
[00:07:07] I remember
[00:07:08] Mary Clare: parts of it, for sure. Um, so pat a pillow is technically fictional, um, and, uh, for several of the scenes where I am in, you know, the doctor's office in the book, I was not present for, uh, I was applying at friend's houses, but I do remember a lot of, you know, Pulled out of school or me having to be picked up by, you know, different friends, um, because my parents were at doctor's appointments.
[00:07:35] So, um, I did not see the panic that, you know, my mom describes or that my dad, you know, had. But, um, what I do remember was like why all of a sudden is all of the attention on Friday and you know, it just was kind of odd. You know, that had never occurred before. And it was just very sudden. Um, so I don't remember a lot of it.
[00:07:57] I do remember her getting her hearing aids. We throw a big party. Um, we used to, we used to, every time she'd get new molds, get cupcakes that matched the colors. Um, and so that's more so what I remember it was kind of the positive ones. The craziness and the mixed emotions had kind of past that was, you know, okay, we're going to be excited about this.
[00:08:18] Um, and we're gonna cheer Bridey on and encourage
[00:08:21] Bridie: her.
[00:08:23] Todd: So let's talk about know sort of, uh, elementary school and those years. How did that go? Righty. Do you remember any of that time?
[00:08:36] Bridie: Um, I briefly remember staying after school, sometimes working with a speech therapist and I just remember putting stickers in a book.
[00:08:47] I still have that bottle, but I don't, I don't. And I had to sit in a special chair that was like really unique. And it was like the only chair in the whole school that looks like that. I always got to sit in that one. Um, But like school when I would be like in the classroom, it wasn't much different.
[00:09:06] Other than I think I ,
[00:09:09] Valerie: you did have an FM system today. Um,
[00:09:11] Bridie: it's like a teacher where this microphone and I haven't been connected to my hearing aids and I had that pretty much. So, yeah, that's all, I remember elementary school,
[00:09:22] Valerie: there was a memory that I have of her in elementary school. Um, she came home off the bus and her eyes were just really big.
[00:09:33] And she said, I, I think I have to tell you something. I was like, okay. And she said, um, can you tell the teacher not to bring it? Her microphone into the bathroom. And I was, I was just giggling and I said, sure, I will, I will, I will recommend that. And it's funny because that has been part of the beginning of the year.
[00:10:00] She feels, since that point is a reminder. You know, the FM system travels with you wherever you go, including the restroom and teachers generally laugh at that. And is that ever happened again?
[00:10:10] Bridie: I think it happened once or twice. And then my fifth grade teacher went on like a really, really important phone call for her daughter or her son.
[00:10:18] And it ended up her thunder. And her husband had to pick him up, but I was like, oh, no way, shoot. I'm not supposed to know this information. Like something really bad happened to her
[00:10:28] Mary Clare: son became very popular in class because she heard all of the private conversations
[00:10:32] Todd: with the teachers.
[00:10:35] Bridie: Like students would get pulled out for getting in trouble and be like, it's fine.
[00:10:42] Todd: Yeah. Yeah, the writing. That's great. That's great. Yeah. I've, I've heard those stories where the teacher forgets and goes into the bathroom and you hear all kinds of things, or it goes into the teacher's lounge, you know, and, uh, eating lunch. Broadcasting everything that is being said. So, uh, yeah, those, those are, are terrifying experiences for the teachers.
[00:11:09] I'm sure. So how was Friday? How was, uh, the social life and in school in elementary and even through high school, how, how was, uh, how was that sort of social life?
[00:11:23] Bridie: Yeah. Um, I'm a very talkative kid then now, especially now. Um, I think it was in my opinion, cause I don't know what it would have been like to go to elementary school as a hearing person with normal hearing.
[00:11:38] I feel like it was pretty normal. Nobody really ever asked me about my hearing aids and my thought would be like, oh, I have to go to the clinic. My battery died. Maybe like. Oh, you wear hearing aids. Like nobody even noticed because I talk so much and I think people kind of assume that people with hearing aids don't talk, I don't know, got an impression over the last 13 years.
[00:11:58] Um, but I think it was like any other person for me. I never really got bullied on. Like maybe once or twice, but it wasn't like a big deal. It was just people who wish that they had a super power that they could turn off the world. Right. So people, they wish they could be like me. I'm not really sorry for them, honestly,
[00:12:19] Todd: but well, and I know for, you know, sometimes you have situations in the younger kids that.
[00:12:26] Uh, want to get hearing aids themselves because the popular kid has hearing aids or cochlear implant or something, you know? And so it's like, it's not, it doesn't quite work that way, you know? But, uh, so those are positive experiences. You know, people want to be like the person that has hearing aids. So that's a, that's a good thing.
[00:12:43] And I think sometimes that we w we as professionals worry about sometimes is an impairments as well. Is that sometimes there could be some isolation with hearing loss where children can be sort of, you know, they, they may be teased or bullied and, and there's not that sort of social network that forms of good friends and the hearing loss ends up isolating the student or the child.
[00:13:10] And so I'm really thrilled that that didn't happen in your case. So that's, that's wonderful.
[00:13:18] Bridie: Pride is a special kid.
[00:13:21] Valerie: And I do think a lot of it had to do with, um, just her demeanor since the very beginning. Um, kind of, this is me go bigger, go home. You know, if you don't like me, I'm fine with that. Let's move on to, you know, a group of friends that do.
[00:13:36] And, um, you know, her, her circle of friends is small, but fierce and, um, And it's so funny because you had been friends with somebody for a long time and it wasn't until a couple of years later. I think that they said, oh my gosh, what are
[00:13:52] Bridie: those? We have been like, I mean, we still are, but, um, she didn't even notice.
[00:13:59] And then I was like, oh crap, my hearing aid died. And she was like, you're what? And I was like, never know, cause it's not just like, it's not an everyday topic. Like I don't even notice it in myself sometimes. Like when I'm talking about metering laws, I feel like it's very new, even though it's not new at all, because I just never talked about it.
[00:14:17] Cause it was really. It was just part of like, talking about your glasses. Right, right, right.
[00:14:23] Todd: Just normal to me. It's a good place to get to, I think, where it's just not, I mean, it's a big deal, but it isn't a big deal. It's just like who you are. It's just a part of you. And so I that's, that's a great thing.
[00:14:37] I think when you can arrive at that point, and of course you had maybe this big, bad, big sister who could step in and, and take on anyone. Right. Yeah,
[00:14:52] you probably sent word down as like you're watching. Everyone, leave her alone.
[00:15:02] That's good. That's good. Um, so how so, how are things going now? So update me on what you guys are doing now. So Brighty, where, where are you right now? In school and plans and
[00:15:18] Bridie: yeah. Um, I'm in virtual school right now. Hopefully I'll be in person next year. It's going pretty well, as well as I think it could.
[00:15:27] Um, I play the violin and playing since I was five. Um, I played the upright double bass for about three years and still talking
[00:15:44] Todd: Mary, Claire, where, where are you? And all of it.
[00:15:47] Valerie: Yeah.
[00:15:48] Mary Clare: Um, so like personally, I graduated from high school last year and deferred from college for a year on just with COVID. I did not think that that was for me, but, um, this past year, uh, with my mom having just published a book, um, I helped her a lot with the behind the scenes of that.
[00:16:05] So we joke when Brian and I get asked how we've helped probably says that she was just the inspiration
[00:16:11] Valerie: to put everything
[00:16:12] Bridie: together. Um, I was in school, so yeah. So
[00:16:16] Mary Clare: that's been kind of the busy and yeah.
[00:16:19] Todd: Yeah. Awesome. Awesome. So let's talk about the book. So how did, how did the idea like let's, this is a good idea.
[00:16:27] Let's put all this in a book and put it out there for the world to consume. So how do the idea.
[00:16:35] Valerie: So a lot of people think that's kind of how it works. It happened, right? Because I do think for many people who write books, children's books, especially that is how it happens. But, um, for me, it, it didn't start that way.
[00:16:48] Um, I'm an eater economics major and yes, I did go to, which is a school that specializes in creative writing, but writing a children's book was never on my radar. Um, and it wasn't. Until, um, about a year and a half, two years after, uh, Brady's diagnosis that I really felt the need to write down what I had experienced.
[00:17:15] Kind of like a, you know, not a journal entry, but just get it all out there. I had this, this concern that I might not remember some of the details and I've thought it was important to just kind of write about it. I wrote about what happened as factually as I could, and then rewrote it and rewrote it and, um, shared it with some family members.
[00:17:38] And they were like, oh my gosh, you could totally write a book about this. And as you know, not for public consumption, but just to write one. And I was like, oh, and so I did, I started writing, um, a book. It, it was in. Intended to be a children's book, but it was originally through my viewpoint as the mom. And, um, I wasn't really happy with it.
[00:18:00] And I worked with a professor at the university of Richmond. They have a continuing education course and he said, you know, I wonder if this were told through a different lens, what this might look like and feel like. And so I, I did, I decided, all right, I'll read it through Mary Claire's perspective. If, if we could go back in time and.
[00:18:22] Imagine what her perspective was. Um, so I wrote it that way and, uh, and then I took the course again and the feedback was, yes, it's so much better through the lens of the older sibling, but the older sibling in this is, is too friendly as too supportive as to, you know, there needs to be, not all sibling relationships are sweet.
[00:18:46] Um, and so I struggled with that and. The professor said, what if this wasn't strictly true? What if you allowed yourself the flexibility to reword things and to, you know, who said what in the order, in which things happened. And, um, I struggled with whether or not to allow myself to do that, but I'm so glad that I did, because that allowed me to take it.
[00:19:12] So many of the emotions and the behaviors and what, what I did, what we did as a family and just put it where it made sense within the story. And so our book, pat, a pillow, um, is all based on fact, it is based on the true story of our family's journey with discovering variety's hearing loss and then coming to terms with it.
[00:19:32] But, um, it is done. So in a way that is more helpful for the reader. And more, I think more families can connect to it the way that it's written now. Um, pat a pillow was always the title that I envisioned for the book because we start in the store. With language and how we didn't notice the signs. We didn't notice this strange language that she had created on her own.
[00:20:01] Um, we just assumed that was normal, but someone noticed someone noticed and in real life it was her preschool team. But in the story, it's the older sibling. Again, we, you know, she had invented a language, pat, a pillow was her word for caterpillar. Um, she had probably thousands of words that she had reconfigured based on what she heard.
[00:20:25] And, um, and then I've sent it out to a few large publishing houses. This is several years ago and, um, got their rejections letter rejection letters back, but several of them had really positive cards. Um, things like great story, not our wheelhouse or have you tried this publisher? Which told me, okay, I've got something here.
[00:20:51] I need to keep looking. And then life got in the way, right? I mean, I'm raising two kids, I'm running a business. Um, you know, it's just a busy time. So I put pat a pillow manuscript in the closet and closed the door and said, I'll, I'll revisit it when I have time. And that time never really became, um, until COVID.
[00:21:11] And it was a chance conversation that a friend of mine had with a publisher here in town that, um, I was introduced to Kim with Kiwi publishing and we had a conversation and I realized, oh my gosh, this is going to be published during COVID. And it was a, it was a race to get it published by may because it's better hearing and speech month.
[00:21:34] And I felt it was important to launch it. Well,
[00:21:37] Todd: that's, that's a great, that's a great story of how it all came together. And it's thrilling that even though these other publishers didn't. You know, didn't publish, but they gave you that feedback and tried to help you in the process. That's a, that was a good step because you'd often don't get that.
[00:21:57] Valerie: Well, I was told during these classes that I took, you know, I was told, this is the process. This is exactly how you submit a manuscript. And I followed it to the letter and they said, You know, you will never get personal notes. You will net you know, you'll get a form letter. That's been photocopied 3 million times along with your main new script back saying, thanks.
[00:22:16] But no thanks. But if you get feedback that is so rare to really listen to it. And so the fact that I got it back from three or four different big houses told me. Okay, this, we have something here. This is worth continuing. And so I never really got discouraged when those letters came back. Um, I actually was excited that, oh, I'm doing it the right way.
[00:22:41] I'm submitting. The right way and, oh my gosh, um, I'm getting feedback and I was told that wouldn't happen. So I must be on to something.
[00:22:50] Todd: It reminds me of a quick story of Walt Disney, who apparently went to 457. Banks asking for money for Disneyland. And I didn't even know you didn't get funding until that last one, you know?
[00:23:08] And so you got to keep pursuing it and that perseverance paid off. So that's wonderful. So what happens from here? Are you going to be able to. Uh, certainly it's published now. And so you're, you're in the process of marketing that book. And, and are you going to have sort of a lecture circuit or book signing circuit and, and going out and doing those kinds of things?
[00:23:36] Valerie: We are, um, you know, this has been a family project, um, and we are taking it on the road as a family, um, both virtually and literally we have some events lined up in July, in New York, on long island where I was born and raised. And I'm excited about those events and we're working on events with organizations in other cities.
[00:24:01] Um, so our hope is that we will devote June and July to, um, Building awareness about pat a pillow that it exists, what it is, how it can be helpful. Um, my hope is that audiologists keep a stash in their drawers so that when they are, uh, officially giving a family, a diagnosis of hearing loss and they see that look on the family's face.
[00:24:24] I know all too well that, um, this is something that they can reference that they can give the family. In addition to the audio gram that the family doesn't understand yet. Um, in addition to the hearing aid manufacturers, brochure, which frequently accompanies the audio gram, um, but something to acknowledge the emotional aspect of this journey and to open the door for better, a better relationship between the provider and the family, because we've found in our experience.
[00:24:54] Having a close relationship with our audiologist has made a huge difference in everything from, um, our keeping appointments to calling them when we've, you know, if we've had any concerns whatsoever, um, and celebrating with them. So we really are hoping that this becomes a standard tool in the toolbox and we are, we have a minivan and we have books, so we will hit the road.
[00:25:21] Todd: Well, that sounds like a fun time as a, as a family to go and do these kinds of things. And, and it's for the right reasons. I mean, you're, you're sharing something that's not only very personal to you guys, but also very helpful as for are helpful to many other families in the same situation. So I wish you guys the best of luck and, uh, and maybe in another six months to a year, you guys can come back and give us an update on how everything went.
[00:25:48] How would that be? Okay.
[00:25:51] Valerie: We would love that. Thanks for the
[00:25:53] Todd: invitation. Well, thank you guys for joining me on the podcast and good luck with your travels and hope everything goes well.
[00:26:02] Bridie: Thanks so much. Thank you.
[00:26:05] Todd: That was Valerie James Abbott and her daughters, Mary, Claire, and Bridgette, or Brighty check out their new book, pat, a pillow about their journey with hearing loss and.
[00:26:18] And I, like Valerie mentioned, I do hope audiologists will keep copies of this book in their offices and be able to hand these out to families when families experience that diagnosis, that would be a great resource to have. And I just appreciate this family for putting their story into a book like this and sharing it so openly.
[00:26:42] So thank you again, Valerie. Claire and yeah. And thank you for listening to the podcast. If you don't mind, leave us a five star review that always helps us to grow the program too, to reach more people with the podcast. And that's exactly what we want to do. And until next time be safe and be kind. This has been a production of the 3C Digital Media Network.
Episode 24: The Listening Brain - Paige Stringer
Todd: Welcome to Episode 24 of The Listening Brain Podcast.
[00:00:14] Welcome to The Listening Brain. I'm your host, Todd Houston. In this podcast, we explore childhood hearing loss through the lives of the parents. And families who are on this journey and the professionals who serve them.
[00:00:38] Hi, this is Todd Houston. Again, I wanted to mention the 3C Digital Media Network, which is our new company that we've developed here. And I wanted to just encourage you to sign up on the site. All it takes is just putting your email in and that way you can stay in touch with us and we can stay in touch with you and you will hear and get information.
[00:01:05] All of our new, uh, blogs that might come out, uh, you'll hear about our new webinars and courses. And so it's a way just to stay in touch and that's important these days staying in touch. So if you don't mind go over to 3Cdigitalmedianetwork.com and sign up. And now back to the interview. Today I have the pleasure of speaking with Paige stringer.
[00:01:34] Paige is the founder and executive director of the global foundation for children with hearing loss, born with a severe to profound hearing loss. Paige benefited from early identification and early intervention services as a baby to learn, to listen and speak. In 2009, she established the global foundation for children with hearing loss to help young children who are.
[00:01:59] And hard of hearing and living in developing countries access the locally based services, better that they need to listen, talk and thrive prior to her current role role. As the organization's executive director, Paige held various marketing positions for 15 years, including at amazon.com and the Clorox com.
[00:02:26] She served on the board of directors of the coalition for global hearing health from 2014, until 2016, Paige has been involved in committee work at the world health organization since 2015, to raise global awareness for hearing loss, including in her current role on the advisory group for the who resolution and world report on here.
[00:02:56] She lived for a few months in Geneva in 2019 to lead the development of the communication strategy for the 2021 release of the who world report on hearing. She has been honored with several awards for her work in developing countries, including the 2019 world of children health award, the 2018 ag bell association award for international services and the 2014 humanitarian of the year award by the American academy of page earned full tennis scholarship to the university of Washington.
[00:03:39] Where she earned her bachelor's degree. She holds a master's of arts degree from the university of San Francisco and her master's in public health, global health degree from the university of Washington. It is my pleasure to welcome Paige stringer to the podcast. Well, Paige, welcome to the podcast. Can you share more about your personal journey?
[00:04:07] Paige: It's an honor to be here. So thank you for having me. Um, so I still, I was born with a profound hearing loss, um, and at the time newborn hearing screening was not something that was available across the United States. And I was born to a family, um, with typical hearing. Uh, there was no history of hearing loss anywhere in my family.
[00:04:29] So, uh, there was no. No indication that that hearing should be a concern to us. And shortly after I was born, we moved to England. Um, I was about three months of age when we moved over there. And actually, you know, when I, when we moved over there and, um, they, they have the British health system allows a nurse to, um, check out.
[00:04:58] Just my vitals and to make sure that I was developing as a typically, um, typical baby would be developing. And so these public health nurse came to my family's home. And when they tried to test my hearing, simply by having me turn around and make some noise behind me, I didn't respond. And after some more tests like that, they thought there may be a problem.
[00:05:23] So they came back later and. Um, and confirmed, confirmed. I was still having difficulties hearing, so they referred my family to an audiologist. And, um, that's when they confirm my degree of hearing loss. And unfortunately in England at the time, they did have some wonderful resources in place to help my parents to understand what this meant and to, um, offer, uh, uh, kind of speech therapy related services.
[00:05:54] And so my family always wanted me to learn to listen, to speak if that was possible, but also recognizing that if it wasn't possible, they were willing to learn sign language. It was, it was kind of a try to figure out how to best help this child type of thing. And, um, I always say that I must have had a lot to talk about.
[00:06:14] And so, um, I was able to develop my mission, new spoken language with the support of hearing aids and this, uh, teachings teachings, the point that was provided by this therapist over in England. Then when I was three years of age, age, we moved back to the United States and I was involved in Tierra early intervention program.
[00:06:36] Um, I've been when I reached mainstream or sorry, when I reached kindergarten age, I was entered into mainstream school where I had always been able to, um, participate with hearing peers and, um, typical schools. And went through my academic career in, in regular school setting.
[00:06:59] Todd: Wow. And so you went to public schools and, and you had support through the public schools and then college.
[00:07:10] Paige: Yeah. So, um, I did receive support in public schools until, um, I was in, they kind of tapered off by the time I was in junior high, but I did get that, um, the point, um, in general had the, by the time I reached high school, I was pretty much done with all of that. But, um, there was, you know, of course an IEP set up and, and, um, I'd had my services, uh, for auditory.
[00:07:36] Um, just practice type me practicing my auditory skills in the morning before school. And then I would also see a speech therapist during the day, um, and be put out of class for like 30 minutes or whatever the time wise in order to get that support. But it was, um, pretty minimal, um, and more just to make sure that I was staying on track.
[00:08:00] And, you know, keeping out of with the other case in school. And then, um, by the time I said, by the time I was in high school, um, all of their services were not needed anymore. And then I, uh, graduated from high school. I went to the university of Washington. Um, I tell you. Um, growing up and when his point of I was a nationally ranked tennis player.
[00:08:25] So I got to, unfortunately I was fortunate to get a, um, kind of scholarship to the university of Washington. And so, um, my parents were happy about that.
[00:08:41] So I played tennis for the university of Washington and earn my degree there. And then, um, I went on later in my master's degree, um, at the university of San Francisco and then recently got a master's in public health degree. The university of Washington. So, um, I'm feel very fortunate that I had all that support when I was young and enabled me to achieve the level of academic success that I was able to have to be able to do.
[00:09:09] Todd: sure. And you you've used hearing aids.
[00:09:14] Paige: Yeah. So when I don't, you know, when I was born coconut and implants for, um, not really, I don't think they were even developed yet, or if they were in session in the early days of that technology. Um, so I, I first became a candidate, um, uh, retested for candidacy in high school.
[00:09:36] And I thought time, they were implanting children who, um, really, really, we had like significant, like profound hearing loss who, um, didn't score very well on their, um, on their speech recognition tests. And I was doing well enough with my hearing aids that I had just didn't qualify for the cochlear implant at that time.
[00:10:01] But then, um, further along as I got older, I definitely qualified. And so I got, so, yeah, so I had, I started off with analog hearing, um, which was available back in the Chevron days. And so really, um, my first pair of hearing aids with body aches and should we have all these pictures of me really be like wearing these big bodies on my chest.
[00:10:25] And then, um, then it went to the behind the ear hearing aid, which is analog. I then moved to digital hearing aids. And then, um, in, uh, 2017, let's get into 2013. I received my cochlear implant and it was just amazing to me, um, that I was able to do. As well as I did with hearing aids, which is recognizing how much of the world I really was missing.
[00:10:54] So I'm a start today. I have a cochlear implant on one side and hearing it on the other. I am a candidate for bilateral implant, but it hasn't happened since vertigo. And she said the recommendation. To maybe lay off on getting that second implant, um, for now and maybe down the road, I might get that stuff.
[00:11:14] Todd: Awesome. Well, congratulations on the implant and transitioning to do that. Um, and, and you, you remind me of, uh, a dear friend of mine here in Ohio is Carrie Spangler. Who's a. Audiologist. Uh, and she's just recently got her cochlear implant and it's like been like amazing what she can now hear versus what she assumed he was hearing before.
[00:11:43] But now she's, you know, definitely it's been a big difference for her.
[00:11:47] Paige: Yeah, I always, um, I always kind of joke with my friend cause normal hearing that as their hearing gets worse, as they get older, they might could actually improve a little bit in that area. So it was kind of a screening and it really is remarkable because even, even now, um, I think it started to plateau certainly in the last few years, but I was noticing just really minuscule improvements.
[00:12:10] Um, Years after getting the implant. So it's funny. I just really fascinating how the brain works and learning to adapt to, um, what is presented with. And, um, my, I actually implanted my worst year and today is by far my better ear. And it's just really, it's really striking how the brain can do. No auditory input, um, through the hearing aid on one side, and then they input and put through the coconut I'm playing on the other side and somehow mix it up and it comes out Saturday.
[00:12:50] Fine. Yeah. It's pretty great. You know,
[00:12:53] Todd: that neuroplasticity is, is very interesting, you know, see all that happened. Yeah. That's, that's, that's really wonderful. Well, I'm very happy for you that you've, you've gone through that and, and things are sounding good. How's that sound? Um, so, um, you then, um, You, you were involved with listening talk, is that right?
[00:13:17] One time?
[00:13:18] Paige: Oh, I was, yes. Um, back in, let's see, 2007, I think it was, um, I, I was working for amazon.com at the time and I was interested too. Give back into the community. I was trying to find ways like that could be contributed in a meaningful way. And I just stumbled across. Listening to Taka was not familiar with the program back then.
[00:13:47] Um, and. And so I learned about it, um, and met with the ex who was the executive director at the time. And so, um, was asked to volunteer, but he felt like a better home would be for me to be on the board. Um, so I am interviewed with different board members, got to and got to know the school, meet the t-shirts and that, you know, it would be a wonderful program to be involved with.
[00:14:15] And so, um, so I D I was on the board of directors for several years. And then for a short period of time, I actually served as the communication development director for . Um, and it was just really, I. Personal personally, um, gratifying and tremendous, tremendous experience because I could see the evolution of technology from the time when I was very young to what was available in today's day and age and the, you know, the outcome than the children are dramatically different.
[00:14:51] And so it really was just, um, Yeah, it was just remarkable to be able to be a part of that and to learn and experience what the, um, evolution has gone through with tech technology, with early intervention, with brain research and all of these wonderful things that the field has managed to issue. Um, and see, see how it's really is impacting so many people's lives.
[00:15:19] So there's an entire, um, re I hold them very dear to my heart. It's a great program, which the adults,
[00:15:24] Todd: well, the, the current issue, the current episode that's out now of this podcast is an interview with Maura.
[00:15:32] Paige: I saw that I stumbled on it. Um, on Facebook, I thought they're posting several. Yeah. So that's great.
[00:15:39] Todd: It was really wonderful. Talk with her last time and, uh, and really get more about the history and she's been there from the beginning. And so it was interesting to hear about all of that. Yeah. It's been a great program over the years and, and still is considered one of the best programs in the country.
[00:15:58] So it's a phenomenal place.
[00:16:00] Paige: Yeah. Really that they do a lot of amazing things. The entire staff there is just really incredible people. Yeah,
[00:16:09] Todd: I would agree. So from, oh dude, did you buy stock in Amazon while you were there?
[00:16:17] Paige: Um, well, part of my job, they gave me a stock options. Um, and unfortunately I still have tomorrow too soon to figure it that way.
[00:16:30] Todd: Which, which we all would have recognized that early on. Right. Um, so from listen and talk. There is now in your life, uh, around that time, the country of Vietnam comes into play. And so, so how did that happen when you, when you got connected to Vietnam?
[00:16:57] Paige: Yeah. So, um, I was, as I mentioned, I was at Amazon for, uh, about six years, five and a half years or so.
[00:17:05] And previous, prior to that, I had been working at Clorox and my whole career up to that point had been in business development, marketing type world. Um, and also towards the end of my Amazon career, more like marketing communication. Especially because internet was really coming to be a big thing as we are now and Amazon restorative and the forest sign of that.
[00:17:29] So, um, during that time, I was kind of going through a reflective phase about how I wanted to see the rest of my career evolve. And I wasn't sure of that the corporate world was something I wanted to stay in for indefinite period of time, but wasn't quite sure what the next step might look like. Um, so I took some time actually I left Amazon.
[00:17:53] I took some time to, um, think about what that next step might look like. And, um, during that time, I, I was, um, offering my services in, in internet, you know, website copywriting and, um, marketing communication for several of small companies here in the Seattle area. And particularly in the travel space, cause they was only doing a huge need, but there's type of understanding and you know, how does this all work?
[00:18:24] There's online staff and there was an organization that, um, I got connected with that. Um, they actually do a lot that they're no longer around, but at the time they did a lot of consulting and work with different countries to help develop their tourism, um, programs and make sure they do it in a sustainable way.
[00:18:46] And they also had a, um, like a magazine. And so it was contributing a lot if my writing to this magazine effort and they asked me to write an article about customized vacations. When you tell the tour company what you want to see and do on your trip, I suppose, just following a sec, I can vary. So today I think that's pretty common today travel, but back then, there was a totally new thing.
[00:19:13] So I have talked to several, um, travel companies about this new, new, new way of doing things in travel. And there's one company tour companies that, that they offered, um, not only customized trips, but they also offered volunteer placements for people to be able to engage with the local kosher and give back to the community as part of their customized trip for sounded really interesting.
[00:19:42] And then the name of the trick can be special tours and they, um, so they, they have been doing this for awhile quite successfully. So I asked them to send me some examples of volunteer placements, and they didn't know that I have a hearing loss and they made quite an array. It was everything from like building water while was, you know, in Africa to, um, helping out with, um, counting animals in, you know, in jungle type environment.
[00:20:14] And then this one was, um, Teaching English or helping to teach English to children who are deaf or hard of hearing in Vietnam. And, you know, I mentioned earlier that I had been on the listening top board and involved in that organization and really seeing the impact of it. Advanced made in the field and children today.
[00:20:37] And so it really led me through this whole reflection about what it means to be hard of hearing or deaf. And so I was going through a real personal, um, affection faith. So there's, there's a communication really hit me at a pretty pivotal time in my life. So when I saw this. Example that you could teach English to children who are deaf and hard of hearing you Vietnam.
[00:21:03] I finished the article that I was writing that I contacted the tour company. I said, I would like to do this myself. I have time. So I want to go to Vietnam and feed the country and end up at this program and see what there is to learn about helping kids who are deaf and hard of hearing and learn to speak English, especially when they're being me.
[00:21:25] So, um, so I did, so I went on this trip. And then, uh, I'll never forget the moment when I pulled up at this school for the deaf. And so my suggestion was, and I was more of a hybrid, but at the time there was purely a residential school for the dad, um, to get out of the car. I had the tour guide with me. He was introducing me to the staff there and I met the director and the director's name is Tuohy.
[00:21:51] And she looked, she looked at me and I said, hello. And I spoke to her and she, she, she has, she knows English and she immediately reminded. That she thought I was deaf and I said, oh, well, I am, but I we're hearing technology and I can speak. And she went away like, how, how is this possible? Like, how can this be?
[00:22:15] Because they didn't have any examples of society back in 2008 in Vietnam of adults, or even, you know, older people who are able to listen and talk or even children for that matter. So, um, she took me aside and. Immediately sat me down and she wanted to know my whole life story. But what was interesting is that she has just come back from Europe where she, and a couple of other Vietnamese professionals were sent to learn about early intervention in general, because in Vietnam they had no early intervention program.
[00:22:50] So, um, in 2008, if you had a disability. There really wasn't anything for you until you were five or six. And I've realized now that it's very late. And so, um, and, and there were no real, um, even early learning programs for typically developing children that this was an area that Vietnam is really trying to change at the time.
[00:23:11] So they had sent a contingent of professionals abroad to learn about the topic and then to come back and take them to them. We just started to implement this type of surfaces for, um, for children who are under six years of age. And so given that I was a product of the very early intervention she was looking to put into place, she was really interested to hear about how it is, how could it even be possible for somebody, with my degree of hearing loss, to be able to and speak.
[00:23:44] So, um, so we really hit it off right away. And over the course of my time that I did help the teachers, um, teach English, but it really felt like there was a larger purpose to play here where, um, so two of you might take me around to these academic meeting and she recognized me and she would say, just say something.
[00:24:04] So I would say something and then she would say, look, look and see what's possible. And it was, um, it was, it was funny in some ways. And in other ways it was quite like. It was pretty, um, significant like that there was making this much of an impact. And so, um, at one point, some of the teachers didn't think that I was as best as I said, I was.
[00:24:27] Because I, you know, have people fake being hard of hearing or deaf all the time. I'm just kidding. But you know, it just never, it's funny that they actually thought that I was pretending to be hearing, you know, having hearing loss. I really am, but, uh, so they asked me if I would be willing to. Uh, to undergo a hearing test.
[00:24:49] And so I was like, sure, show me that ideology. But, so they took me to the ideology, birds and tested my hearing. And I always tell people that it was the first time in my life that it was happy to have such a horrible audio ramp because it just shows, let me look at my audiogram and it's pretty bad. So, um, so they, you know, they took them as I was telling.
[00:25:12] There was a piece of paper and they gave it to me to take to cheery. So I went into her office and she had the audiograms. There's several of the children in her program. And this particular school has 300 children between six and maybe 20 years of age. Um, and. She had the audio games spread out on the table.
[00:25:36] And my hearing loss was better than some of them are, certainly had a lot that had a lot more hearing than I did, but because they, I mean, they're even moderate hearing losses in this, in this group. And so, um, there was just a demonstration, a real life demonstration that the benefit of that or the identification.
[00:25:59] Early intervention services that I had when I was young, which enabled a completely different outcome than what was happening for these children. So over the time, um, I had, I had reached out to Maura. They were interested to the Vietnamese teachers were interested to understand more. So with Morris being the expert, um, I did ask her to share whatever she could about, um, About, um, auditory, verbal practice, um, parenting technology, whatever she was willing to be able to provide.
[00:26:33] And she just sent me a ton of wonderful PowerPoint student resources. And if anybody knows why they, they know that she's very complete and providing, uh, we try to help as much as she can. So that was incredibly helpful. Yeah. They, um, so I was able to share that information, but also at the time that I was there, uh, Toohey and I started to kind of, we started talking about this mandate that she was given here that she's posted go and figure out early intervention for these kids in her country without a whole lot of modeling to do it.
[00:27:09] And so she was saying that it would be wonderful to bring some professionals. To some other places that could come and help them understand what was needed and then to be able to train that. And then the Vietnamese would take that information and then be able to train others and collectively they can improve services for children, with hearing loss in their country.
[00:27:33] And I really liked the science of empowerment that she has, like the shoot and responsibility that, you know, give us the information we're gonna. We're going to run with it and we're going to improve things. So we actually came up with a plan for, um, it started actually as being a very simple, um, training workshop type of thing.
[00:27:55] And then yeah. Then I went back to the United States and started contacting different organizations to see if there was any one out there that were doing something similar that would be interested in getting behind the plan that we had developed. But what I quickly learned was that there were several organizations that have a true surface based concept of, um, humanitarian, for lack of a better word, human and projects, where they go to a country, they provide hearing aids, you know, they fit hearing aids or they go somewhere and they do the work to help the kids, but then they leave and it's not very sustainable in my opinion.
[00:28:35] And so what I was hoping, and there was that, and also, uh, there were organizations that just focused on one part of the problem. So maybe a race, you know, screening or fitting hearing aids, but there wasn't anybody that seemed to have the complete continuum of care in mind. And so that's when, um, I decided that this was something that needed to be addressed and it was clearly a problem, not just in Vietnam, but in other developing countries too.
[00:29:05] So in 2009, I established the global foundation for children with hearing loss, which is an organization that helps, um, countries and organizations within countries. To establish that continuum of care from early identification to hearing technology, to rehabilitation that complete package. For children, zero to six, know that they have a chance to learn, to listen and speak.
[00:29:32] And so, um, our first program voice in Vietnam, and we still are there today. W what is that? The, we started in 2010, so 11 years later, and, uh, we've trained over 300 people. We, the project started off with just training teachers in south Vietnam. Um, and even our first summer program was significant. It was, it was, um, six weeks long.
[00:29:58] And it involved at 90 teachers from, in Vietnam, from 35 different schools throughout the south part of the country. And we had a global foundation team of professionals that, um, that I had put together to develop the curriculum and it covered many different topics and aspects. Um, and then this group traveled with me to Vietnam to teach the material that summer.
[00:30:26] And so that's not where I started. And then over time, it's just grown exponentially to the point where, where we were providing training and hospitals, um, to medical professionals, to technicians in this field who are doing audiology work to, um, therapists, to teachers in classrooms, setting mainstream teachers, even if they understood about it.
[00:30:49] Inclusion. Um, and then working with therapists in hospital settings, as well as school setting that have started in the south, went up to the north of Hanoi. And then, uh, we expanded finally to the central part of Vietnam. And a big part of what we do is to prepare them to be trained, to train others so that the benefits that exponential insustainable kind of week vision, like, you know, give us, give us the information and we can make things better.
[00:31:20] And so, um, so for that central part of Vietnam, We actually, um, asked the professionals that we had trained to lead the training and our teams will with more out of coaching the trainer. And then, and so today, you know, and we ask to fit hearing aids on children in need. We did a partnership with a coconut implant company to not only provide cochlear implants, but to make sure there was 15 years of support after the surgery.
[00:31:50] Because I think everyone on this call knows that. It's just, it's expensive to have a cochlear implant. And in these developing countries, so many families, you know, they sell everything they have in order to be able to make it possible, to get the device not understanding about the ongoing cost. So we really worked to make sure that that made wise a drive.
[00:32:13] And we also, um, partnered with the. Professionals that we had trained to provide, um, therapy and rehabilitation support to the children after they got their implants. So, um, so we, you know, as I said, we'd been in Vietnam for, um, was just about 11 years now. And. The Vietnam has been to where it is now is striking.
[00:32:36] And we can't, of course we can't take the full credit for it, but I do think we have to, um, create a lot of the positive change there where today all the cochlear implant companies are in Vietnam. There's last year, early intervention program. Um, all the hearing aid companies that most of them anyway are there too.
[00:32:55] And families are familiar with this. Um, there's the chance for kids to hear and speak? I started today. If I were to go to Vietnam today, I don't think they would even look twice at the fact that you speak and not a big deal anymore. So I feel very fortunate that I haven't had a chance to be a part of that.
[00:33:15] Todd: And so has with, with all of that it's happened and all the changes has the government embrace this and put resources in place so that children, when they are identified there's, there's a system.
[00:33:28] Paige: Yeah. So they, um, thank you for asking that. So the government still does not provide financial aid for.
[00:33:37] Hearing aids or cochlear implant for is probably the biggest barrier. I think that change is coming is slow, but it is coming. The hearing screening programs are supported, um, by the major hospitals. So it's not a national hearing screening program, but they do screen newborns for hearing loss at the major hospitals.
[00:33:58] So again, progress issue. The biggest area in progress though, is. So second ignition that, um, this is, this is possible. I mean, we really had to, we started from the very beginning with the government and trying to educate them. And it was just this, um, It, it, it took a lot to try to show that this can actually happen.
[00:34:24] That kids who are deaf and hard of hearing can listen and speak. And it took time for the kids that we trained or that our professional is trained, um, the Vietnamese professionals, but them to grow up. To be included in mainstream schools to do well in mainstream schools. And I mean, that takes years.
[00:34:43] Right. And so that's happening now. And so one of the things, the government, the ministry of education asked, um, the global foundation to. Help train a group of professionals, teachers and therapists in Hanoi who are, um, they're part of our special cause or within the ministry of education that are responsible for developing curriculum to train teachers in the country.
[00:35:12] And the goal was to standardize, uh, what, what, what the special education training would look like for a teacher working with kids with hearing loss. And so we, uh, been working with administrators. I have education on, on that and helping to, um, give them the tools that they need to standardize a training curriculum that will address auditorium over practice and, um, making sure that the professionals in the field have the knowledge and resources to be able to do what they need to do.
[00:35:45] And Vietnam has also supported a audiology. Um, training curriculum in the universities, which is also something that's pretty there. So is this coming slow? I really met, but it's definitely coming. I think that again, as more and more children continue to be successful with that, um, the government will have to be more involved in, in other ways.
[00:36:11] Todd: And you have to excuse my ignorance, but the government there is it, it is what, what's their philosophy. Is it, is it still communist government or is it,
[00:36:22] Paige: yeah, so it's a communist government. They have, um, a free and apply market system or it's different from our system, but it's, um, they still have the communist constraints around things.
[00:36:37] They do apply a more open society, um, free, um, economic policy and what they did back in the time of the Vietnam war, like, or after the Vietnam war. So, um, in, in the 1990s, they really decided to open up the country more and more
[00:36:56] Todd: they're they're like, uh, communism light.
[00:36:59] Paige: Well, it's interesting when you're there, if it's not, um, there's really not apparent.
[00:37:05] And I think it's different from other countries that have stricter communism philosophies. The, the only, uh, maybe interesting that, that I, I deal with on a regular basis, um, is that they are. But they do want to know where people are. So if we, if we have a training workshop, you know, specific part of Vietnam and we invite people to come, they do have to get permission from their local authorities to be able to travel to that location.
[00:37:41] Um, but if they're so supportive, they, the government is so supportive. Yeah. The work we've done. We, we really had name recognition in Vietnam. Um, and in order for us to work in Vietnam, we have to have a permit with the Vietnamese government. So I've worked hard in the areas to cultivate that relationship and make sure that, you know, we provided complete transparency with how we do our work.
[00:38:05] Provide reports in timely fashion, um, for your class who work in the government system. And they all just love the work we do. I mean, they see so much value that we do, and they're very grateful and thankful for it as are the parents, especially, and also the professionals we work with. So I think if such a field guide and if anything, you know, given the history between the United States and Vietnam, I think.
[00:38:29] It's been, um, it's been really nice and we've had people on our team who are older, you know, who remember the Vietnam war. Um, we've had interpreters who escaped Vietnam and came back to Vietnam with us to lend their talents and interpreting. And then kind of, you know, get to see old family and friends that they haven't seen in a long time.
[00:38:54] So there's definitely a historical connotation there. Um, but we've also done something, but the us embassy and the consulate general in, down in Pokemon city where we've been invited to share, I work at, um, constellate presentation and they've given us grants, then some, some funding support for our work.
[00:39:15] So. So I think, you know, I really think that Vietnam is a young country that they've really moved on from that animosity of that era. And, uh, perhaps in some ways more easily than we had. So, um, it's a great place, a great country. People are fabulous, very generous. It's always going to hold a special place in my heart.
[00:39:38] You say, so it was a great place.
[00:39:41] Todd: And so I know that you're expanding your mission with the foundation to other countries to other work, but where do you want to go in Vietnam? What else do you want to continue to do?
[00:39:55] Paige: I think that we are actually at a point where we're studying to phase out of our work in Vietnam.
[00:40:00] They, they have. They, they know how to do this work. And I think Maisha point where we're at, we're able to, with what we are providing a really more, um, Like coaching mentorship and, um, collaboration on maybe specific cases or topics. But we were so far away from where we were at the very beginning where we are teaching them the basics of child development.
[00:40:28] You know, they, they, they, they know all that they've developed tools of their own. They've often many. They really don't need our support as much as they think that they do. Um, and so. With that we, we moved on to Mongolia. Um, in 2016, we started, um, working that the government of Mongolia issued a mandate to establish newborn hearing screening in the country.
[00:40:55] And when I learned about it, I contacted the group. There is, um, there's a rotary group there that would kind of helping them. That the medical community raised the money to achieve this mandate connected with them. And it was really interesting first zoom call that we had, I think it was Sam for maybe it was Skype.
[00:41:13] I don't know, but it was, uh, there was, it was, it was smelling outside and there was some, like one of the participants with kind of in there, um, out in the countryside and there were some lights. Um, I believe like reindeer or something like coming, walking back and forth behind the person in the screen.
[00:41:36] And, and it was just, it felt like very like different type of cultures in that initial type. And then the initial theme that I had with them, but in that communication or that conversation, I learned that they're very focused on the screening, but there didn't seem to be. Uh, as much support as I think we would like after the screening.
[00:42:00] So it's like what happens after the children identified, like, you know, what services are in play? And the Mongolian government does provide subsidy for cochlear implants, which is impressive. And they, um, provide some subsidy for hearing aids and, um, also some subsidy for us. If they call it kind of a disability subsidy, but it could be used towards, um, everything from transportation to therapy, places, or a part for hearing aids, you know, whatever other parents, the hearing aids, you know, whatever you need it for us.
[00:42:31] So there was some social support. Um, but it didn't seem like there was an opportunity. So we ended up, I educated them about what we had been doing in Vietnam over the past decade. And we came up with that, a larger program where if that, to implement newborn hearing screening, but then also too, Really focused again on that continuum of care, making sure that children have access to the hearing technology.
[00:42:59] And then they have professionals who are trained in the country, be able to support with this population. Yeah. And so, um, in 2017 we added a funding, um, to, to, to, to implement all of that. So we, um, we started off in the Capitol of Ulaanbaatar. And made sure that all the hospitals there, um, had newborn hearing screening equipment and over half the population of the country lives in the Capitol.
[00:43:28] So it was an easy way to make a big impact pretty quickly. And then at the same time, um, our global foundation for children with hearing loss per session, um, customize our training curriculum and we. Began training the, um, medical professionals and pediatric audiology, uh, Ben providing training and auditory verbal practice to the therapist.
[00:43:53] You are working with kids after they get their hearing aids. And co-creators. And, um, that continues today. So we're still doing that. And so now in Mongolia and the Capitol, when we first started this project, there was only one hospital that had the equipment and the resources to screen children for hearing your babies for hearing loss at birth.
[00:44:15] And it was, there was such a recession that they were only screening at risk baby. They just didn't have the, where without doing more than that. And so, um, by 2018, when we've had the newborn hearing screening program fully up and running and processes in place, referrals and system in place, I'll have that in place by 2018.
[00:44:35] So in two years we, um, uh, all the hospitals. In the Capitol are screening babies for hearing loss is 30,000 baby every year. Now that I'm getting this hearing today and where we are now with that part of the project is expanding to the countryside and we've targeted three provinces. And during COVID, and this past year we've been able to continue that effort.
[00:45:00] Um, and so now the three provinces have the equipment. The Mongolian is that, um, our hearing screening partners are trained. Had been providing training to their peers on hearing screening through video and whatnot, due to restrictions on travel because of COVID. So they're hoping that by the summer they'll be able to start screening babies for hearing loss in the rural areas as well.
[00:45:25] And to reach the other half of the population. So I'm at a role where we did do some online training during COVID I'm actually in Vietnam and in Mongolia to continue to provide that information to them. So, um, one of the things that I'm really proud about, because our mandate from the very beginning with Alabama, empowering the people in the country to be able to serve their own children, it's never been about.
[00:45:54] Providing direct service. And I think that that, um, mantra has really played out during the pandemic because we've been able to continue so many of the, um, Implementation of projects. So you'll you train people and then they want to implement new things to benefit from the training. And so all of these, um, forward momentum projects in both Vietnam and in Mongolia have been able to be achieved because the people are empowered with the resources, the training and the knowledge that they need to be able to serve their own country.
[00:46:31] And so, um, So while other organizations that are more service-based really have been able to just kind of wait until these pandemic is over, we've been able to continue on in many ways we buy. We do. So I'm happy about that.
[00:46:46] Todd: Yeah. That's very exciting. And I'm very happy. You were able to do that and the way it was structured.
[00:46:52] So you didn't really miss any time there. I'm not much. Yeah. Just keep doing what you're
[00:46:57] Paige: doing. Yeah. Yeah. So yeah, go ahead.
[00:47:02] Todd: No. And I thank you. Uh, from what I've recall, you were looking at some central south America projects.
[00:47:11] Paige: Yeah. So we were in Ecuador for that's. Right. And that was. It was an interesting project.
[00:47:19] So it was with the ministry of public health and Ecuador. And it was so Ecuador is further along than some of these other countries. Um, in terms of providing services for young kids, with hearing loss, they, um, were their opportunity was, was just strengthening skills and especially in auditory verbal factors, but also an audiology too.
[00:47:42] So it was really focused on training, really focused on that. Um, and then Ecuador, they patch them. A lot of political changes, um, during the time when we were trying to work there. And so those, those ended up being challenging, um, in terms of getting the appropriate permissions and felt like it was that it was difficult, but the rules kept changing and Ecuador that you think you checked off all the boxes, and then you find out that you actually needed to be looking at these other lists.
[00:48:13] There's things that get done before they will let you in the country. So, um, it was unfortunate. I know the people that are in the government and the people on the field. We're really hoping for us to continue on for seven, eight years in Ecuador, but it's just, it's just got to be got to a point where, um, the expense and the time involved in working through their spirit phatic.
[00:48:40] Class Ash was just more than we could take on. So yeah, we were on good terms and if they ever, um, simplified their flashers, I'm sure we'll be going back right in the meantime where we're looking at. Um, so we, we started focusing on Mongolia more and I work in Vietnam and, and now we were establishing a new project in the country and through time,
[00:49:03] Todd: So that's going to be the next, uh, one, uh, your additional area of focus going forward over the next few.
[00:49:11] Paige: I think so. Yeah. We're really excited about this one. I said partnership with the United nations technology. And with, um, Medtronic labs, which is a social enterprise and the three of us, um, we have different mandates, but all sort of synergetic, transgender agenda.
[00:49:29] And so the, um, United nations technology bank is interested to, um, to address the need for, um, more services for children, with hearing loss. In in low resource country. And it's kind of part of this w ratio mandate that was issued back in 2017 to make air inheriting care more in priority in government health plans around the world.
[00:49:55] And so, um, so we've been invited actually to this project to help with the zero to six component. The overall project is for it. To 14, it has two distinct parts. The seven to 14 group is more, um, going to, um, mainstream schools, monastery, or have a public health initiative to make sure that the children are hearing well and that they don't have.
[00:50:23] You know, you know, racks or other, um, issues that might be to permanent hearing loss. So it's more for typically developing children, but then making sure that they continue to hear well. And then for the zero to six program, is this again, that continuum of care, we, and we really are starting from scratch there because they have very limited resources.
[00:50:44] So it will be a challenge, Jane, but incredibly fascinating pleasure. So we're looking forward to it.
[00:50:50] Todd: Well, it's, it's all very exciting and you are just an amazing person to be doing all this and to have seen that need in Vietnam initially, and then to see where you are now, these years later, over this past decade, what you've been able to achieve.
[00:51:10] It's just mind blowing and I, I just really compliment you on all your hard work and you are truly changing the lives of these children and the families, and, uh, having such an impact, uh, throughout these countries. That's really amazing.
[00:51:27] Paige: Thank you. Thank you so much. It's been, it's been incredibly rewarding work and so grateful to all of that.
[00:51:33] Professionals and in country people we collaborate with. Um, it's just been, it's been a very, um, it is a definite community effort, worldwide community effort. So it's, it's lovely to be a part of it.
[00:51:49] Todd: And age, if, if someone who's listening would like to contact you or to maybe donate some funds, some funds to, um, how
[00:52:01] Paige: thank you.
[00:52:02] Yeah, we have a website and it's, um, children with hearing loss.org. So the name of our organization is the global foundation for children with hearing loss. Um, and I would decide is children with hearing loss.org. And if you go there, you'll see the big red donate button, but you can also read a lot more about the different programs and, um, organization commission there.
[00:52:26] Todd: Awesome. Well, thank you for your time today. I really appreciate this and, uh, and good luck with everything that you're doing.
[00:52:34] Paige: Thank you, Tyler. I really appreciate you having me.
[00:52:37] Todd: Paige is such a remarkable person. I really admire her and everything that she's been doing and continues to do. She saw the need in Vietnam initially, and essentially built a foundation that not only address the problems of children and families and those professionals in Vietnam.
[00:53:02] But now is branching out to these other countries and continuing to have such a tremendous impact. She is changing lives. And again, I just admire everything that she's doing. So if you have time and if you have resources, please reach out to her, the global foundation for children, with hearing loss, visit the website and donate.
[00:53:30] If you can. And thank you for listening. If you don't mind, please give us. It's a five star review that helps us to, uh, attract new subscribers and listeners and to reach more people. And with that until next time, be safe and be kind. This has been a production of the 3C Digital Media Network.
Episode 23: The Listening Brain - Maura Berndsen
Todd: Welcome to Episode 23 of The Listening Brain Podcast.
[00:00:14] Welcome to The Listening Brain. I'm your host, Todd Houston. In this podcast, we explore childhood hearing loss through the lives of the parents. And families who are on this journey and the professionals who serve them.
[00:00:38] Hi, this is Todd Houston again. I wanted to mention the 3C Digital Media Network, which is our new company that we've developed here. And I wanted to just encourage you to sign up on the site. All it takes is just putting your email in and that way you can stay in touch with us and we can stay in touch with you and you will hear and get information.
[00:01:05] All of our new, uh, blogs that might come out, uh, you'll hear about our new webinars and courses. And so it's a way just to stay in touch and that's important these days staying in touch. So if you don't mind go over to three C digital media network.com and sign up and now back to the unit. Today I have the pleasure of speaking with Maura Bernsen.
[00:01:34] Mora holds her BA in deaf education from Fonte bond university and her Ma and early childhood education from the university of Texas San Antonio. Maura is also a listening and spoken language specialist, certified auditory verbal therapist as executive director at Listen and Talk in Seattle Washington.
[00:01:58] She fosters relationships while providing leadership and oversight of operations and staff that ensure the delivery of quality listening and spoken language services. During her career, Maura has been involved in local state and national efforts to build sustainable systems that optimize opportunities for families and their children who are deaf and hard of hearing.
[00:02:23] Here's my conversation with Maura, Tamara, welcome to the podcast. Give me a little bit more about your background and how you got into this little world.
[00:02:34] Maura: This Lisel world. Um, it, it was actually quite accidental. Um, I was 15 years old and like many teenagers, um, just exploring what opportunities might be out there and had a high school field trip to St.
[00:02:54] Louis, which was about an hour away from my very small hometown in Illinois. And, um, we went to this small. College, um, called font bond. And, um, now known as font bond university and my tour, my groups tour guide was a deaf education major. And at a point in the tour of the campus, I asked a question that opened the door for her to talk about her major.
[00:03:28] I didn't realize it would do that. And I was fascinated. Um, just had never heard of deaf education. Um, Had never met a person who was deaf or hard of hearing. And just again, I w I was just drawn to it. Um, so my, my mother in particular will probably tell you that. The day I came home from that field trip.
[00:03:58] She absolutely knew that that's what I was going to do. And I still floated back and forth for at least a year or so. And just kept coming back to this idea of blending science and education and, um, And I loved working with children's. So all of these things came together and, um, I started my under degree undergraduate degree at Fontbonne in, um, and became a teacher of the deaf.
[00:04:34] So that was the first step then. Um, my first job. Was at sunshine cottage in San Antonio, Texas. And, um, Jackie Patton, whom I think you, you know, uh, was the audiologist on the team and right across the hall. And, um, at a point in time, somebody took me by the arm and said, if Jackie tells you. That that rock on the ground can hear this frequency.
[00:05:10] Just know that she's right. So I learned so much at, um, at Fontbonne and then went to sunshine cottage and learned so much more about the auditory potential, um, that children who are deaf or hard of hearing. Um, then that led me to explore the, the, um, at the time it was certification as an auditory verbal therapist.
[00:05:40] And, and again, just drawn in to that blend of, of art and science and family and children and, and building those communication skills. And, um, and I've been at it ever since. So been at it awhile.
[00:05:55] Todd: So how long were you in.
[00:05:58] Maura: Um, I was in Texas about six years. So I started teaching, um, in 1990, you can probably see a little gray hair and a few wrinkles here, but I started teaching, um, the year that, that cochlear implants were FDA approved for children.
[00:06:18] Um, just, uh, fortunate timing. Um, the training at, um, at Fontbonne, there were many, many children at St. Joseph Institute where I did my student teaching, who were there because they had recently received a cochlear implant and, and, um, And St Joe's Institute was, was part of that data collection and that, that review process, um, that goes along with the FDA approvals.
[00:06:47] So, um, it, it was, uh, a great time to be a student. And, um, and then again, I, as I mentioned, I, I moved to, um, from the Midwest to, to San Antonio and I was at, at sunshine for about six years.
[00:07:05] Todd: Well, I, I love sunshine cottage. I've only visited there a couple of times, but certainly the, they have that reputation of just being an excellent place, an excellent school, or sell the materials they've developed over the years.
[00:07:21] We all use, I use their stuff just in fact, placed a big order to get more stuff in. Um, through the university. So, uh, it's, it was just probably a perfect training ground for you, uh, as, as someone coming out of college and, and being able to go there.
[00:07:40] Maura: And, um, I have to also call out, um, Dr. Wally, Bruce.
[00:07:45] Um, he was the director and, um, and Dr. Bruce had a way of helping. Helping you discover the answer. Um, I think it would have been very easy for him to say do it this way. And, um, and he would meet with you and, and had high expectations. I mean, detailed lesson plans, um, the ability to collect data, um, very, very, very careful, um, tracking a progress and.
[00:08:23] And what that meant. I mean, I think without knowing it at the time Dr. Bruce exemplified diagnostic teaching, I'm one of those cornerstones of, of, um, listening and spoken language practice that, that you, you needed to know why you were doing what you were doing and how it was helping that child in that family grow.
[00:08:45] But he, he just had this way of. Engaging you in a conversation about what you were doing that helped you discover your next step. And, and I will be forever grateful to, to him, um, for, for being one of my first mentors.
[00:09:08] Todd: It reminds me of that, that quote in terms of you really don't learn until. You reflect on what you're learning.
[00:09:16] And so it's, it's nice that he sort of, um, sort of integrated all of that together and the experience that he had for you guys there, uh, really figuring out why exactly you're doing these things. And what does it mean and how does it help the kid that you're working?
[00:09:36] Maura: Yeah. And I think another thing he did Todd, is he, um, he.
[00:09:43] He gave you the space to find ways to do things or find new things that if you could explain the why and what you anticipated the impact to be you, you have room to try these things. They, they definitely had to be founded in. And, um, now we would say evidence that, that there would be an evidence-base, um, for, for why you would do this, but, but he would give you the room to explore and, um, and apply something you had learned in the work you were doing at sunshine.
[00:10:20] And, um, and I think that that led to the direction I went with my master's degree. Cause I, I feel a little bit like an odd duck these days. Because my undergrad degree is, um, in-depth education, not my master's degree. And, um, and I'm still, uh, very grateful that I went that path, that I had four years to absorb the information and the experience with, with working with, with young children in particular, who are her deaf or hard of hearing, but for my master's degree, Dr.
[00:10:54] Bruce actually encouraged me not to pursue a master's in deaf education. And that was because of the strength of the program at Fontbonne. Um, he, um, he said, you know, take what you know about teaching kids who are deaf or hard of hearing, working with their families. And add to that. Don't repeat it. And, and so, um, a colleague of mine, um, Judy Odendaal, um, and I both, um, she was a little bit ahead of me, but we pursued an early childhood focus, um, in our master's degree, which really transformed, um, what I understood about how children learn and, and how, um, I could help them learn.
[00:11:44] When I was in my role as a classroom teacher, and again, just really aligned with those listening and spoken language principles of following a developmental approach. And
[00:11:56] Todd: so how did you go from Texas to Seattle? How was that? What were the steps in between another accident?
[00:12:07] Maura: Another accident, another accident.
[00:12:12] This, this postcard landed, um, in our mail box. I I'm sure that at the time, um, star Leonard Flatman, who is the founding director, Atlas and, and talk, um, used a mailing list from ag bell or something. But, um, it, it talked about listen and talk in Seattle and, uh, Had a Tucker max and return address. And at the time, um, in, in that era, Tucker Maxon was publishing quite a bit.
[00:12:44] And, um, and so I thought that they were, um, perhaps writing a new curriculum and I had just finished my masters, um, completed my, my auditory verbal certification and thought this is. This is a new project. Like I I've, I've got time on my hands now. I didn't know what to do after I finished grad school while I was working full-time so I, I sent a letter and, um, and very quickly learned that it wasn't a, it wasn't a book.
[00:13:18] It wasn't a curriculum, it was a program that was trying to open. So, um, that's, that's how I met, uh, sorry. Leonard flack men and, um, made that transition from, from some sunshine cottage to, uh, listen and talk and Seattle.
[00:13:36] Todd: And describe, describe that experience because it was a new program. You guys were starting from scratch, right?
[00:13:45] Maura: Definitely starting from scratch. Um, so it was, uh, starts, um, private practice. And, and that was based in her home and it moved from that private practice and into a program. Um, and I, I really don't think I had it and any idea what I was getting into. Um, I, I don't know the foolishness of, of youth or something like that, but, um, but I, when, when I heard.
[00:14:19] Star and the family she worked with and eventually met, um, a couple of their board members. It reminded me of sunshine cottage, quite honestly. And, and when I made the decision to leave sunshine cottage, that's what I told, um, blame Trautwein and Carolyn waffle the leadership there. The team in Seattle was trying to do what dealer white did in San Antonio, which was establish, um, a strong program that gave children and their families, the opportunity to connect and learn through listening and spoken language.
[00:15:00] And, um, Seattle didn't have that. And I think at the time, you know, Microsoft was, was everywhere and, and so we all, um, or I naively thought that that just Seattle was essentially cutting edge across. Across all things and, um, arrived and learned that in terms of, uh, opportunities for children who were deaf or hard of hearing, it was very limited opportunities for listening and spoken language.
[00:15:31] So I, you know, I left a team of probably close to 50 people total and came to a, a team of two and, um, We had, we had our building, um, we, we didn't have, um, computers and that we had one computer in the office as my memory. Um, I mean, it was starting from scratch. And so, uh, Kim Hammerman who joined a year, joined our team a year later.
[00:16:07] Um, we would, we would stop by Kinko's on the way to work because, um, we didn't have a photocopy. In in the building. And so our business manager one year, it said, um, you know, oh, it's getting time for Christmas. What do you want for Christmas? And I am not an early bird by nature. So getting up at six in the morning to be first in line at Kinko's was, it was hard for me.
[00:16:34] And I'm like, I want a photocopier and George, we want a photocopier. And, um, right after, right as we got ready for Christmas, we got our first photo copier Atlas. So, um, so it was definitely an adjustment. Um, you know, that, that just, uh, we, we, I star and I both relied on the colleagues that we had in other places and, um, just networked and.
[00:17:06] And, um, did everything to make sure we, we were we're following solid practices and building, um, a program that that would stay strong. And, um, and so we are approaching our, the start of our 25th year, um, this coming September.
[00:17:29] Todd: Hopefully not the same photocopier. Um, so how many did you start with in that first year or so?
[00:17:38] Maura: Um, how, how many families did we? Um, we were providing auditory verbal therapy to 13 children and their families. Um, the following year, um, we were in a, I remembered at the time being, I'm not sure what, what adjective to use, but we had auditory verbal therapy and we had classes.
[00:18:05] And my memory is, is that it wasn't very common for those two, um, types of settings to exist within the same agency. And, um, so th there were a lot of conversations with our friends at was auditory, verbal international at the time, going, what are you guys doing with classrooms? And then there were lots of conversations with our friends at ag bell about what are you guys doing with that?
[00:18:34] Verbal therapy and, um, I'm I think star and everyone at listen and talk is, um, remains very proud of the fact that we were able to honor the principles of, of both of those settings. So that. Children had those children and families had those opportunities, um, that, that we were able to take, um, take both of those approaches, settings, um, values and, and support more, more children.
[00:19:11] Um, So we started with 13. I think the following year we were eating close to 20 and we were doing a strategic plan and we had to project out our growth and enrollment. And at the time it was just mind boggling. At least to me that we could possibly anticipate serving 25. 30 35. Um, I think when we looked at the five-year plan, we might've eked our way up to 40 children, and I just could not imagine how we were going to meet.
[00:19:57] That many children. Um, yeah, last year we served in total between our birth to three program classroom program. Um, Lisel therapy and outreach. We served over 200 chills.
[00:20:13] Todd: Wow. That's that's that's huge. That's great. Yeah,
[00:20:18] Maura: no. So it's, um, it's very humbling to, to meet families and, um, Have them, them trust us to, to kind of take them on this journey and, and help their children, um, master communication, achieve things that, that some people don't think is possible.
[00:20:43] So, yeah.
[00:20:45] Todd: Well, you know, we've, we've both been doing this for, for at least a few years. What do you think is the biggest, uh, Positive outcome that you're seeing right now, and then I'm going to go with the opposite way. And what's the biggest thing we need to work on.
[00:21:04] Maura: Yeah. So, um, in, in Seattle, there, there were, there were a couple of, um, pivotal events that, that I think changed the, the dynamic, um, is how I'll describe it.
[00:21:23] Um, Washington is actually still a state that doesn't have a newborn hearing screening mandate. It's it's voluntary. Um, we hit great numbers with that. Um, I think everyone is still, um, um, challenged by loss to follow up, but, but what that effort to establish newborn hearing screening in Washington state resulted in and, and.
[00:21:53] Will forever give credit to the families, is that no matter which communication approach your family had adopted your family was following, there was something we had in common, and that was ensuring that, that children's hearing levels were identified early and families were connected to the resources that aligned with their desired outcomes.
[00:22:20] And, um, And so the professionals, um, followed the families lead and said, you know, we're, we're not, we're this, this situation establishing this reality is brought people together. And, um, opened the doors for conversations on not only what our practices were, but how do we, how do we evaluate our systems so that families have accurate information, have supports in place to, to access those services and realize the outcomes that are possible for, for children and families?
[00:23:08] Um, We have been able to continue that, um, for the last 20, 23 years, um, since, since that event, it's, there are times where it's not easy. There are times where it's not comfortable, but we're able to bring professionals and families around the table to improve systems. So that all changed. Who are deaf or hard of hearing benefit?
[00:23:37] Um, not only children using one approach or the other. So, um, there are times where I think that's happening. In several places, many places in other times where I think that that Washington and the Seattle area, um, is still perhaps a little unique, but that I would challenge professionals, um, anywhere to w to keep in mind that systems change can benefit.
[00:24:11] All children, each child who is deaf or hard of hearing and that in addition to remaining committed to our professional values and, um, maintaining the integrity of, of the supports that we offer, stay committed to making sure those systems support family access.
[00:24:32] Todd: And I read about what you guys have done there and the state of Washington.
[00:24:36] And I think it's incredible to be able to eat everyone for the most part of, you know, on the same page with the focus on families and making sure all families have options available to them. Um, so that's, that's. And if, since, you know, one of the models around the country that I think other states have looked at.
[00:24:57] And so that's a very big positive where either in Washington or just nationally or more in general, we already, we, where do we go from here? What do you think we need to do as little clinicians, um, focused on kids with hearing loss? What are we still missing?
[00:25:20] Maura: I, I not sure that, you know, that that missing is, is the, um, the term I would use, but, but I do think that as we meet children with additional special needs, um, That, that that's an area that I personally our team at listen and talk is, is constantly thinking about and looking for what, what are.
[00:25:51] The right resources, the right models, the, the, the way to support these children and, and their unique needs. Um, so, so there are children that come to us, either with known or unknown, additional challenge. And as we, as we learn about them, how do we adjust what we're doing to support that family, to, um, support that child.
[00:26:19] So I think that, that, that's, that's an, a conversation that just needs to continue and will, will evolve as we learn more. Um, and. And so that that's one piece. And then another piece, you know, I would be, um, be remiss without acknowledging just the, the equity, um, conversations, the diversity, equity, and inclusion.
[00:26:48] Um, it, in our experience, it's, it's extremely difficult to find, um, Qualified providers that speak more than one language. Um, we work with language interpreters, so Atlas and, and talk among our 200 plus families. They speak 26 different home languages. And I'm trying to imagine how. We as adults learn new information and then understanding that and thinking, how are we learning that new information when we're having to navigate those conversations through an interpreter?
[00:27:38] And just, what, what do we do to support that? How do we plan for that? Um, so, so that, that children in their families aren't limited. So, so those are our two, I think, topics that are, are. Um, are big for us at present.
[00:27:58] Todd: And I think those, yeah, if I had to list the top two or three right there with you, I think the issues around those kids that have additional needs, we still, we all struggle with that depending on what that additional diagnosis might be.
[00:28:17] And yeah. You know, the diversity, you know, income inequality, getting services to families that are lower socioeconomic status. Um, finding those clinicians that have, that are also diverse. I know just from a perspective of being a faculty member and trying to recruit students to come in and be trained, it's extremely hard for us to find.
[00:28:49] Um, I sort of a diverse cohort of students, uh, and, and Akron is considered sort of an urban area, you know? And, uh, and we just still struggle with trying to get students with, you know, more varied backgrounds and, uh, it's, it's a challenge, you know, across the country. And, and then beyond that in the list, Community.
[00:29:18] We need to work even more to make sure those things are happening. Great. And so at this point, um, what would, what advice would you give? We have someone who is maybe starting out, who's interested in maybe becoming Lisel certified. What advice would you give them today?
[00:29:39] Maura: I think just, um, Understanding as Jace Wolfe says not what's possible, what's, what's probable.
[00:29:48] Um, I think that really having a solid understanding of that, um, and, and setting that, um, that bar high in terms of your expectation, I think. Being reflective. Um, so some of the things that, that come to mind for me really have nothing to do with death or education or, or, um, or speech, speech, and hearing science it's that, that active, reflective nature, so that we are constantly reminded and mindful of the fact that this isn't.
[00:30:33] What I'm what I'm doing. It's, it's what that family's doing and how that family impacts that child. Um, so, you know, naively, I. I am a hundred percent sure that when I graduated from college and got my first teaching position, I was thinking about me. I was thinking about what I was doing and the importance of what I was doing, and really didn't have that lens on the power of the family.
[00:31:09] Um, so. I, I would encourage new professionals to really think about that and to explore that and to be mindful and reflective of their practices and relationship of, um, igniting that confidence in parents. Um, After all these years, I, I, and as much information as families come to us with because of the internet, because of, of materials and access to information and other people, it, you still here unbelievably.
[00:31:55] Empowered parents saying, but you know, more than I do or in some way, shape or form. And, and I'm like, I might know more about this, but you are the reason your child is, is progressing and will reach these goals. And we'll, we'll find that fulfilling life. So, um, and, and I know when I started out, I didn't really have a sense of that.
[00:32:23] But, and then I would also say, um, somewhat quickly, I, I never thought. I would be in quote unquote administration. Um, and so I, I do, um, when teachers are sick and there's a chance to go back into the classroom. I love it. Um, when a family, um, needs someone in a session, you know, there, there needs to be someone to cover sessions or, or to, uh, To, to serve and support a family for a longer stretch.
[00:33:02] You know, I'm, I'm the first one to, to justify or rationalize why I might be the best person for that job. Um, but I think that, um, regardless of your title, we can all influence systems. That ultimately support families. So don't underestimate the impact you as a professional can have on raising awareness of a gap of, um, sharing an idea that can increase access and, um, And really becoming, seeing yourself as a leader, no matter what your title is.
[00:33:49] Todd: I think those are great words of wisdom. And I, I think, yeah, I think those are wonderful. I think th the idea of always seeing yourself as capable of having an impact and being a leader and recognizing that and being family centered and parents centered is. Very good advice, uh, for, for anyone, but especially those that are just starting out or worried about maybe that I do this right.
[00:34:18] Or do that right. Then just being authentic and, and bonding with the family and really trying to understand what the family needs and then how you can help them get to that next. And
[00:34:30] Maura: I'll add one more thing really quickly, Todd. Um, I think when I first started to work with, um, with families and children, I thought I always had to have the answer right.
[00:34:42] When the question was asked and, and I think it's important for all of us in all parts of our life, when we're posed with the question to, to recognize it, but to give yourself the space to explore. Um, to network to gather more information. Um, so that, that, uh, a full answer of full, um, clear, clear information can be shared with somebody instead of thinking, they asked this question, I'm, I'm the therapist, I'm the teacher, I'm the coach.
[00:35:19] I should be able to answer this right now. Right?
[00:35:24] Todd: This actually came up not long ago. I was working with my grad students and the parent, um, at Akron children's hospital, uh, asked a question about some very rare, very, very rare, uh, diagnosis. And I, I couldn't remember. I just could remember the answer. And, uh, it's like, I don't know.
[00:35:45] I have to say, I just, I don't know, but I will look that up for you now I'll be back in touch. And we talked, I talked about that to the grad students, after the session was over. I said, you know, it's, you know, it's okay to do that. I mean, I would rather, you know, say something along those lines. Then tell them misinformation, just share misinformation.
[00:36:06] That is not accurate. And then you have to go back and correct. You know, it's okay that you don't know everything. No one knows everything. And you're going to get asked questions. You're going to be put in that spot. And if you don't know the answer, don't make something up. Just say, you know, I don't know the answer to that, but I will go find out.
[00:36:27] I will learn and I will be back in touch. And that's what the families want. You know, they want someone who can, they can trust. They don't want someone just to make stuff up and just to set aside them in that moment, they want them to be themselves and share what they know. And if they don't know, find the information for forward or help them find it, whatever the case may be.
[00:36:50] Well, it's, it's been absolutely wonderful catching up with you today. Yeah. How can someone get in touch with you if they would like to reach out? Yeah.
[00:37:00] Maura: Um, we're, you know, phone, email, um, website. So, uh, I, I probably should have had a slide that you could show in the background right now, but, um, uh, www listen, Talk.org is listening talks, uh, website, um, we're on Facebook, Instagram, all of the, that, uh, social media reach.
[00:37:27] And then, um, my email address is I'm. I'm happy to connect with, with anyone. Um, M a U R a B as in boy. At listen, talk.org is a great place to start and figure out next steps, but we we've got an amazing team. So don't be surprised if you reach out to me and I connect you to someone else. So, so I, I I'm, I'm unbelievably grateful for the team that we have.
[00:38:03] Todd: Well, thank you for sharing all your wisdom today. Absolutely. I really appreciate Maura being with us today and having such a great conversation. I have been set. I fan of listen and talk for many, many years and, uh, and a fan of Maura's for what she's done over the years as well. And so if you have questions or want to learn more about their program, reach out and visit the website, um, I'm sure they would love to hear from you and, and, uh, share more information about what they're doing.
[00:38:43] And thank you for listening. And if you don't mind, leave us a five star rate. That always helps us to attract new listeners and to grow the podcast. And we want to really express the news about listening and spoken language and what it takes for families and professionals to make that happen for children with hearing loss.
[00:39:06] So please share this podcast with at least five people. Yeah to get that listenership up, we want to continue to grow. So that's my call to action for you. Share this podcast with five people, let them know that we exist, and this is a place that they need to listen, uh, to, in order to, to hear more information and connect with individuals who are in this little committee.
[00:39:37] And with that. Thank you for listening again. And, uh, I'll see you in two weeks until then be safe and be kind. This has been a production of the 3C Digital Media Network. .
Episode 22: The Listening Brain - Jennifer Borgatti
Todd: Welcome to episode 22 of The Listening Brain Podcast.
[00:00:14] Welcome to The Listening Brain. I'm your host, Todd Houston. In this podcast, we explore childhood hearing loss through the lives of the parents and families who are on this journey and the professionals who serve.
[00:00:38] Hi, it's Todd Houston. Again, I just wanted to invite you to become a content creator for the three C digital media network. We want to really ramp up what we have to offer in 2021, this new year that we find ourselves in. So please reach out to us. If you have ideas for webinars, cars, courses, or even maybe a new podcast that you'd like to develop.
[00:01:07] Reach out to me at [email protected] and I'll be in touch. Thanks today. I have the pleasure of speaking with Jennifer Borgatti. Jennifer is a wife and mother of two young boys ages five and two. Her youngest son was born deaf and wears bilateral cochlear implants. Her family is based in Northern California, where her sons attend an oral school for deaf and hard of hearing.
[00:01:42] Prior to becoming a mom. She graduated from the University of Tennessee and worked professionally in medical sales. Jennifer now helps families of deaf and hard of hearing babies as a parent mentor. She also writes a blog called the cochlear mom where she offers support and advice for families on the journey of raising a child with hearing loss.
[00:02:09] Jennifer is passionate about advocating for deaf and hard of hearing kids and proving that they are capable of anything. Here's my conversation with Jennifer, the Coppola, your mom. Well, Jennifer, welcome to the podcast. Tell me about your family and your family's journey.
[00:02:32] Jennifer: Sure. So my husband and I have two sons, um, our oldest turned five, um, in January and he has typical hearing.
[00:02:41] And then our youngest turns three next month. And he was born with severe to profound sensory neural hearing loss, uh, bilateral and, um, We were shocked when we received his diagnosis. Um, I expected to have another son just like my older son and, um, so to not pass the newborn hearing screening in the hospital was a big surprise for us.
[00:03:05] And, um, we. Our family has built in support for, um, having a child with hearing loss though, which I'm very thankful for. So I'll explain that a little bit since you're asking about my family. Um, so my father-in-law was born deaf. Um, he uses sign language only. Um, so my husband is a Kona and. Um, my mother-in-law, so my husband's dad, uh, my husband's mom is a speech therapist.
[00:03:32] Um, and her sister, who is my sons, both of them, my son's godmother is also a speech therapist. And, um, so they, that support's been great for us, but we, um, That's a little bit about what our family dynamic looks like. Um, we, we're just, we're lucky to have those support systems built in.
[00:03:56] Todd: That's wonderful to have those family members who have knowledge of deficits and, and language development and communication.
[00:04:04] Um, I did read a little bit on your website. We'll talk a little bit more about that in a few minutes. Uh, so your, your father-in-law. Is deaf has been deaf his whole life and his first language is ASL. Right. And so was your husband, I read if it was ASL, right?
[00:04:23] Jennifer: Yes. What was his first language and then obviously spoken
[00:04:27] Todd: English and your, your, uh, father-in-law has been supportive of, uh, your voices in terms of, uh, education and technology.
[00:04:38] Jennifer: 100%. And he says that he, he wishes he could get a cochlear implant. It just, he was born at a different time. And, um, he's very set and used to not hearing and using ASL to communicate. So, um, he's been very supportive of Nico though this whole entire time, um, once to read about cochlear implants, anytime I get new material, um, he and Nico uses, uh, cochlear Americas, uh, in seventh.
[00:05:07] Cochlear implants, uh, for his processors. And in the time I received new material, he wants to read about it. Um, he he's very supportive and really when it comes to, you know, that there is that controversy, um, unfortunately that's, that's out there. Um, his opinion is the only one that matters to me because he is a member of our family.
[00:05:29] And if he supports his grandson and he's proud of him and happy for him and. Encourages him then that's it means everything to me.
[00:05:41] Todd: You know, I think it's, uh, admirable because, you know, sometimes I see deaf adults in that situation would say, oh, it didn't work for me. So it's not going to work for children today.
[00:05:56] And they sort of compare their experiences, which are, are sometimes. Tragic and in terms of what they had to go through. But I've always thought, well, what you experienced all those years ago, isn't the same of as what we can do today. And so it's a very different world. Uh, and so it's really like comparing apples and oranges.
[00:06:20] So it's great that he sees that that today is a very different landscape in terms of what's available in the early identification. Like you guys had the technology, the schools, everything is very, very different than. When he was growing up. Yeah.
[00:06:37] Jennifer: So 60 plus years ago, it's a completely different environment, different technology.
[00:06:43] And, um, yeah, it's been really nice that he has been so supportive and we actually went through genetic testing, um, after we had Nico and it came back that he has connects in 26 while our family does. And that was information for all of us because my. Husband's family. Um, they thought that his dad was born deaf because his mom was sick while she was pregnant with him.
[00:07:09] And it turns out that's not the case. And, um, so my father-in-law and my youngest son, Nico, they have. A genetic connection that is wonderful. And one that I'll never be able to understand as well as both of them do together. So it's been really eye-opening I think for all of us as a family and I'm, I'm really, it was nerve wracking to go through that and do and decide to do genetic testing because you don't know, going to be found.
[00:07:39] Um, but I'm really happy that we did because it was just information for everyone.
[00:07:45] Todd: Right. Exactly. You know, I wonder, you know, his, his mother, the grandmother.
[00:07:52] Jennifer: Yeah, my husband's grandma.
[00:07:54] Todd: Yeah. I wonder how much guilt she felt. Cause we often read about how moms feel a lot of guilt because they give birth to the child who has special needs or is later diagnosed with hearing loss.
[00:08:09] And for, and we know now that it was, it had nothing to do with her getting sick. It was nothing she could have prevented, but she may be lived her whole life. Thank you. It was my fault. I got sick, you know, three months when I was, you know, whatever it was, you know, and, and she probably carry that all her life that it was something that she did or maybe she could have prevented.
[00:08:32] And so she'd probably carry that weight with her.
[00:08:34] Jennifer: Yeah. And that guilt, I mean, we, I, I don't feel it anymore, but I remember feeling that right after Nico was born thinking, did I do something wrong? What happened? Of course, this was before we had the genetic testing. That's. I talked to a lot of families that, you know, they are fresh out of the hospital with some of these failed ABRs and they feel the same way.
[00:08:58] And there is that grieving period that you have to go through as a mother. And, um, It's something when you receive that news, I've never been so shocked in my life. I really, I did not know that this was going to happen. And, um, but that's okay to feel that way. Um, there's nothing wrong with you. There's nothing wrong with your baby.
[00:09:19] This is just, you're now on a different path than maybe you thought you were going to be on, but it is a wonderful, wonderful journey. One, I wouldn't change in an instant because you get to appreciate so many things. These children are capable of anything. And it's, it's wonderful to be able to see that right before your eyes.
[00:09:40] And I think that's what I try to help families focus on. Picking themselves back up and start moving forward and advocating for your child because you have to, you are the best person to do that. And, um, yeah, so it's, she did feel grief and, um, guilt from that diagnosis. And he, my father-in-law was sort of three or four years old when he was diagnosed.
[00:10:04] So. It was a late diagnosis as it was many times back then. So it was definitely a different, different time and a different world. Um, and it's, but he has had a wonderful career. He's retired now, but he, um, designed cars for Nissan. So, uh, clay shaping that they show on the commercials, which, um, he's so creative and, uh, it's just, it's so nice for my son to see that example too, because we.
[00:10:34] Friends and family members, obviously that have cochlear implants and better amplified and, and use spoken English, but then to have a grandpa too, that is deaf and has had a wonderful career and life without being able to hear too, is, is great for him to see that and, um, had the full support of everybody.
[00:10:58] Todd: Well, I love the photograph of him, the fishing, you know, they're fishing together. I just love that photograph and I encourage anyone. Who's listening to go check out your website and just go find the photo of grandpa with Nico. Nico, uh, fishing on the bank there. Yeah. It's
[00:11:17] Jennifer: just really great. Adding behind a tree to take that picture.
[00:11:21] Well, this is such a precious moment and I didn't want to miss it. And we were camping and that's one of our favorite activities to do as a family and Dana, my father-in-law always comes with us and, um, it it's just that, like I said earlier, that connection that they have is just, is amazing. So it's thank you.
[00:11:40] I love that picture.
[00:11:42] Todd: Yeah, it is wonderful. So you guys get the diagnosis and talk to me a little bit about the services that you guys, that journey of getting services in place, um, for Nico and, and how that went. You mentioned being an advocate. Um, I did, uh, see, uh, on your website, you talked about. The ABR was going to be weeks out.
[00:12:07] And then you had to fight to get, uh, an earlier test done. But talk to me about the services you guys have gotten since diagnosis and how that has gone.
[00:12:17] Jennifer: Sure. So, yeah, as we were being discharged from the hospital, um, was when he didn't pass the hearing screening again and they said, well, you know, we'll set you up for a follow-up ABR and it was months away.
[00:12:31] And. That's not an option for me as a parent to know, to not know if my child could hear me. And, um, so I actually, I stayed an extra night in the hospital, so they would give him another chance to pass the newborn hearing screening, um, in the quiet nursery, he didn't pass. And so we were discharged not knowing what was ahead of us.
[00:12:53] And, um, I hadn't. Um, for a follow-up ABR, but like you said, it was months out. And so I called them, I got put on a cancel list, um, to receive hopefully a phone call when someone canceled and that very next week we had an appointment. So he was 10 days old when he had his follow-up ABR. And it was confirmed that severe to profound actually at that point, the first ABR was profound, no responses at all, um, across the board and.
[00:13:23] That was just one of the lowest of the low points. And because you're holding this child and you don't the future, someone. Um, and yet the pure innocence in a 10 day old baby, it's just, um, unbearable at times to not know. Um, and so at that point we started looking into what kind of programs were in the area.
[00:13:45] What could we do to educate ourselves? I remember we went to Barnes and noble and we bought books, my husband and, and I just started reading. And, you know, luckily we had his mother, his mom and her sister to call a speech therapist to start talking to them about it. Um, But we found a school in our area and it was actually mentioned to us, um, by the, I believe she was an audiology intern or a tech that administered the ABR at the ENT office.
[00:14:14] And she said, have you heard of chat? And I said, No. Why would I, no, I have no idea what that, and so we looked up chat, which is an oral program school that's in Sacramento. Um, and I also got LinkedIn with obviously our, our county services. So early start and, um, we. At 10 days old, we had that information and then we started receiving services from our county, from the infant development early start program, but we also started attending chat and chat had a grant that allowed us to attend.
[00:14:50] We kind of double dip essentially on our services because my approach was anything and everything. I'll double dip on any kind of services that we can receive that will help him. Um, and I think this time I was still working full time and so he was going back into daycare with my older son. Small in-home daycare, but I had my county services happening inside the daycare, and then I would pick him up and bring him to chat also.
[00:15:24] And we attended the baby and me class, um, at chat, um, starting at when he was three weeks old. And, um, so we, yeah, so we were doing everything right. All I kept hearing about was the language, no, zero to three, got to get it in here while you can. And so I knew that kind of dropping everything was what we needed to do and to be around as many professionals as we could.
[00:15:50] Um, and that's, you know, really when we were at chat and we started really learning a lot about listening and spoken language and, you know, using that, um, Ave, you know, as, as an option for us. And, um, Nico, just, he flourished and he's, he did so well. And, um, it just was the perfect fit for our family. And so, yeah, so we, we received a lot of services.
[00:16:17] We're fortunate that we live in an area where we have an abundance available to us. I feel for the families that don't, um, but then, you know, those parents have to become those. Um, almost professionals to educate themselves on what their child needs,
[00:16:35] Todd: right. And the parents become, uh, the first misspells, first teachers really, you know, language models and communication and reinforcing everything throughout the day.
[00:16:47] Right. And it's a way of life. As most as, as other parents have talked to me about.
[00:16:54] Jennifer: It is, it becomes, it becomes your life. And I I'm ahead of Nico receiving his first cochlear implant. He received his right side on, um, when he was 12 months old. So when he was a year old, um, a month before his surgery, I quit my job.
[00:17:10] Um, my full-time job. And, um, because I knew that all of his speech services and everything was going to ramp up and that I couldn't. Continue to be the level of working professional that I want it to be and the level of mom that I wanted to be. And so I thought, you know, this he's going to be my job. And, um, and so I, and I back, I mean, it's been 100% the best decision for us as a family.
[00:17:39] And that allowed me to. Very present at school, um, observed him in class. Unfortunately I can't now because of COVID but last year we were allowed in, um, we'll get back to that eventually. I'm sure. But, um, yeah, it's, uh, it really, it is a sacrifice, but I think for some of these children, um, including my own, it was the best decision for us as a family.
[00:18:05] Todd: And Nico has bilateral implants now. Correct. Um, and so he's in, he's in chat and doing well. And, uh, so how is he communicating today? Oh my
[00:18:18] Jennifer: gosh, full sentences. Um, he, he, when he, yeah, when he wants to get out of his car seat, he says, get me out of here. And, uh, he, he just, you know, we're working on, um, him saying, please, when he's asking for things, I mean, he's, uh, he can tell you about his day.
[00:18:37] Um, he says, mom, do you know how much I love you? And then I'll say, No, what? And he says so much. And so it's, he is he's fully caught up, um, to his hearing peers. We've just gone through, um, his testing, um, ahead of his third birthday next month. And he is just doing so well. And. His language has his voice, his speech.
[00:19:02] It's, it's beautiful. And I'm so thankful and it's been a lot of work, but he, you know, on our part, but also on his, and I'm so proud of him because he worked so hard on it. And you know, it's also, you know, we talk about us as moms and dads and what we do to sacrifice. But my older son, my five-year-old, he goes to chat also.
[00:19:27] He's in the pre-K class as a language model, even though he does not have hearing loss, siblings are allowed to attend. And, um, he knows his link sounds. He works with Nico with his link sounds and he'll ask him, oh Nico, can you say this? Ask Nico to repeat whatever he's saying and he's all into. And I'm so proud of my older son also for really adopting all of this as his life and, um, to have a little brother that needs a little bit of extra support can be difficult and he hasn't missed a beat.
[00:20:03] And, um, he's a huge part of Nico success too, because those two are best friends. And they're only two years apart, so they spend every moment together. So, um, yeah. At chat, we're so lucky because he receives daily speech therapy. Um, that's part of the services that they offer. They have audiology on site too, which is amazing.
[00:20:26] Um, and he's around peers where he sees other cochlear implants and hearing aids, and he knows how to put them on by himself. He knows how to connect himself to the Rogers system. That's in his classroom. He says, connect me if you ask him, um, when he connects, he says, I heard the beep and I mean, he's just going to be in such a great place to mainstream out to our neighborhood school.
[00:20:53] Um, and we're just so, so.
[00:20:58] Todd: It sounds like he's, he's doing all the right things and, and you guys have done all the right things so that he can be successful. So that is wonderful. I wanted to talk about the website and, and your, your, um, alias now, the cochlear mom,
[00:21:19] which is great. Um, and so what do you want to achieve with the website, which I think is wonderful.
[00:21:26] Jennifer: Thank you. I want people to feel like they have the level of community that I have here in my local area of Sacramento in my school and this chat. I mean, I am surrounded by parents on a daily basis that are going through exactly the same thing that we're going through and I get to see them in person.
[00:21:47] And I get to say, you know, gosh, this bike helmet, I cannot get this thing to work. It always knocks his magnet off. What helmet do you use? And just things like that. Um, oh, I, you know, I forgot a battery. Do you have an extra rechargeable battery that I could use? Having that kind of community is so critical for us as parents, because it's hard and it is life changing.
[00:22:11] And to be surrounded by a support system that believes in you as a parent and believes in your child, then who's going to benefit is our children and our future. And what's better than that. And I am so lucky to have all this, and I want people. To feel like they have this same level of community, even if they're in Ohio, like you and they're in different states.
[00:22:36] And I just, I want to let people know that they're not alone. And that's why I wanted to start the blog, the cochlear mom, because I have learned a lot over the last three years. And, um, it's been. Just so nice to be able to share that level of support with other families. And just even with my, what I've learned from my family, from my mother-in-law, from the boys godmother as speech therapists and what I've learned from my father-in-law, you know, being, you know, a member of the deaf community and, um, From my husband growing up, you know, with a deaf father.
[00:23:12] I mean, it's, there's, I have so much information to pull on here. Then I felt the need to share it with others. And, um, it's been great so far. It's just a really nice outlet to reach other people.
[00:23:25] Todd: I was extremely impressed with what you've done with the website or your blog and, and enjoyed reading, uh, most, most of everything that was posted.
[00:23:34] So I really appreciate everything that you're doing and, and it takes some courage sometimes to share your family's journey and, and kind of let it all be out there for everyone to, to receive and consume. Yeah. And I hope everyone sees it as this, in the spirit that it is presented as being helpful. And if it's not your cup of tea, then move on.
[00:23:57] You don't have to, you don't have to say anything or do anything, but if it is helpful, it's there for you. And, uh, and I think that's wonderful.
[00:24:07] Jennifer: We have to choose the best option for each child. Right. So just because this is what's worked best for my son doesn't mean it will, for yours, it really depends.
[00:24:18] And, um, children learn differently and, um, they respond differently to different languages. So, yeah, absolutely. This is just an example of what has worked well for me, but, um, I think the parents, parents ultimately are the best at deciding what's what's best for their children. And, um, so yeah, it's. It's it's been great and I look forward to sharing more and I'm going to do, I learned all about, um, listening and spoken language strategies in baby and me.
[00:24:48] And so, um, you know, I know all about, you know, expectant look and auditory sandwich and, uh, wait time and mother ease and all of that. And so I look forward to sharing more of that on the blog too, you know, as I continue to publish new posts and, um, because that's something that. Just becomes second nature to us now.
[00:25:09] Um, almost narrating our life. I think of myself as I like to watch sports. So, you know, I'm the announcer who is saying, who's got the ball next and this person's running towards this end zone. And, um, so that's how we, that's just how we are right now. It's become second nature. And I think it's been a huge part of Nico's success.
[00:25:29] So I look forward to sharing more and connecting more.
[00:25:34] Todd: Yeah, that'd be wonderful. Now I'll have to recruit you to be a grad student in, in speech, language pathology. You know, you could come right in. That's what my
[00:25:41] Jennifer: mother-in-law says. I said, oh, I don't know if I'm ready to go back to school yet.
[00:25:48] Todd: I have a third one in the family.
[00:25:49] That's you know, out there doing stuff. Right,
[00:25:52] Jennifer: right. It's it's been it's it's a wonderful field. I had just, I had no idea. I'm happy, happy. I was thrust into it.
[00:26:00] Todd: Well, I wish you nothing, but the best of luck with everything you're doing, but also with Nico and your whole family. And, um, hopefully in another, another year or two, I'll have you back on and we'll, we'll get an update on how he's doing.
[00:26:15] Jennifer: That would be great. Yeah. Hopefully he'll be mainstreaming for kindergarten and it'll be a whole new, um, you know, journey for us. Um, but one that I know we'll be prepared for and ready for. I really appreciate your time. Thank you.
[00:26:29] Todd: It was a real pleasure speaking with Jennifer and learning more about her family.
[00:26:37] And of course, learning more about Nico. You can follow their journey on her website at. The cochlear mom.com. So if you want to read more about what's going on with Nico and some of the other things that have occurred, go check out what Jennifer has to say on her wonderful, wonderful website and blog.
[00:27:04] And thank you for joining us for this episode. We really appreciate you being a subscriber and a listener. If you don't mind, please leave us a five star review that helps us to attract new listeners and to grow this podcast and to reach more people, which is what it's all about. And with that until next time, stay safe and be kind.
[00:27:32] This has been a production of the 3C Digital Media Network.
Episode 21: The Listening Brain - Dr. Melissa Hall
Todd: Welcome to episode 21 of The Listening Brain podcast.
[00:00:14] Welcome to The Listening Brain. I'm your host, Todd Houston. In this podcast, we explore childhood hearing loss through the lives of the parents and families who are on this journey and the professionals who serve.
[00:00:38] Hi, it's Todd Houston. Again, I just wanted to invite you to become a content creator for the three C digital media network. We want to really ramp up what we have to offer in 2021, this new year that we find ourselves in. So please reach out to us. If you have ideas for webinars, cars, courses, or even maybe a new podcast that you'd like to develop.
[00:01:07] Reach out to me at [email protected] and I'll be in touch. Thanks today. I have the pleasure of speaking with Dr. Melissa Hall. Melissa received her doctor of audiology degree from the university of Florida in May, 2010 and her master of arts degree in communication, sciences, and disorders from the university of central Florida in August of 2006.
[00:01:39] Dr. Hall is dually certified and licensed. As an audiologist and a speech language pathologist. Dr. Hall works as a team member on the USF university of Florida health Coca-Cola implant program and provide services such as cochlear implant, evaluation programming. And rehabilitation while working closely with otolaryngology to provide a team to patient care.
[00:02:10] Dr. Hall is a board member of the American cochlear implant Alliance. It's my pleasure to speak with Melissa. So Melissa, welcome to the podcast. Can you, uh, give us a little bit more about your background
[00:02:27] Melissa: Thanks for having me. Um, so I actually became, um, a speech language pathologist first. Um, and then I ended up going on to get my doctorate of audiology later.
[00:02:38] Um, while I was doing the program for the speech language pathology degree, I kept, um, signing up for courses in the graduate degree program for oral habilitation. Um, and I was the only students in my cohort that would sign up for those courses. So naturally, but one student wasn't enough to support having an entire course.
[00:02:59] So I kept signing up for everything that they offered and then kept not getting the cap, the class that I wanted. I went on into my, uh, My externships. And in my full-time externship, I did, um, an externship with students in a school for the deaf. And one of, one of the schools that I went to, um, it was total communication.
[00:03:22] And the other school that I went to was oral. Um, and I found it to be really fascinating, the differences in the communication abilities that each of the students had. Um, you know, I would look through audio grams and I would see, well, they have the same hearing loss. They were identified around the same time.
[00:03:39] Um, you know, they have different communication modalities, but why is one child able to do certain things and another child really incapable of doing that? Um, so when I finished my SLP degree, I ended up. In the school system. And at the same time I applied and was accepted into the audiology degree program, mostly to answer some of those questions that I had, and then the interest in therapy that I had trying to see how I could better help those patients that I was going to be working with.
[00:04:08] Um, so I ended up going to the AED program, um, and really got a lot of answers to those questions. The degree program, um, and early, uh, my husband is also, he's a cochlear implant recipient he's, um, bilaterally implanted. And I met him through taking a sign language course, and I kept thinking, you know, he's so functional, he's able to function so well in his work environment and his school environment and what makes it so different for all these other patients.
[00:04:38] So kind of all of that led me to the audiology degree. And I was, as I was going through that degree, I really saw the possibility of helping people more by being able to provide the therapy at the same time as programming their devices. Um, so after that I went to UNC chapel hill for my externship for audiology.
[00:04:57] Um, and I like to refer to UNC chapel hill pediatric program as the Disney world of cochlear implants and pediatrics. Um, it's just, it's such a wonderful place to be, to learn information for all the questions that you might have, um, as a professional and really develop skills. And at that time, I was able to work with some really great, um, therapists and really great audiologists and they let me do therapy and then let me later program patients the exact same patient.
[00:05:26] So I got to see real therapy change. And then I got to see what programming changes would do for you. Um, so I really got to have like a full circle experience there, um, and really cemented that I was in the right place and that I was doing, um, you know, what I felt like I was led to do. Um, it's funny at that time I was trying to decide, do I want to go more therapy?
[00:05:50] Do I want to go more? Audiology, you know, is there a job like that? And in reality, no, there isn't one, um, most jobs when they're posted, they're posted as an audiology line or a speech line, um, and you really have to make one. So I spent a lot of time over the last couple years, trying to find that area where I could do both and really feel satisfied that I was providing the best care for patients with the knowledge and expertise that I had.
[00:06:18] Um, so I'm the director of the cochlear implant program at USF health now. Um, and I do see patients mostly in an audiology capacity, and then I also support the SLP team. Um, I will do a lot of evaluations and kind of staff patients, and then get them to the therapists, um, for their full-time therapy. So it's been an interesting journey to get to this point.
[00:06:40] Um, but I do feel like. Having the SLP background, um, made me a better audiologist for the perspective that I wanted to have. Um, and audiologists are wonderful and they get a lot of great training. Um, but one of the things that SLPs get that I think audiologists could get more of. Um, behavior training and therapy and how to get a child to do a certain behavior for you.
[00:07:03] And what positive reinforcement means, what negative reinforcement and some of those skills could be really helpful in training for condition play, um, and different aspects of an audiologist everyday life. So, you know, some of that crossover. Even though the fields are so different. Now, some of that crossover has been very helpful for me.
[00:07:22] Todd: Yeah. That's a great introduction of yourself and your, and your background and how you ended up both in sort of in both professional worlds with speech, language, pathology and audiology, you mentioned taking a step back during your speech path framing. You were requesting those courses and you were the, basically the only student.
[00:07:43] What, what led you into hearing loss? So
[00:07:46] Melissa: the first course that I took in audiology was the fundamentals, um, in the undergraduate degree program. And I just was so fascinated by, um, the difficulties that people would have with hearing loss from the, the, uh, cases that the professor would present. Um, and I really, that population of patients is who I wanted to work with.
[00:08:07] And I knew it from that class. Um, you know, I had taken courses in articulation and fluency and feeding and swallowing, and really what I kept coming back to was people with hearing loss and what could I do in their lives to help them. Um, and so that course, really, I think, started what I consider to be a love affair with people, with hearing loss, basically.
[00:08:29] That was the area that I wanted to focus on. And I kept trying to find avenues to do that, to figure that out, whether it be placements or courses or, you know, externships later on, um, that was really the population I really liked
[00:08:43] Todd: you and I are very similar in that way. Cause I went to grad school and speech language pathology.
[00:08:48] Because I knew I wanted to work with kids with hearing loss. That's what really focused me. And unfortunately at the time there wasn't a lot of extra things I could do, uh, to get additional experience. Um, and the course, you know, the, the intro to audiology course I took was, was great. Uh, the Aral habilitation course I took at the time was more of a survey course.
[00:09:12] Here's how to troubleshoot a hearing aid and here's right. Here's some different methodologies you might see, but otherwise that's about it. You know, that was about the scope of the course. And, uh, and so I was like, yeah, I just, and this came sort of at the end of the master's degree. And, um, and so I'm like, well, I've been here this whole time waiting to get this course.
[00:09:36] And this course really. Preparing me to go out and now work with a population I really want to work with. And so it was a bit of a let down, even though I think I had overall a very good training as an SLP at that point in time. Uh, I felt disappointed that that one area where I really wanted to focus.
[00:09:57] Just didn't really prepare me and much of, uh, what I have done as a speech language pathologist, uh, and how my in terms of my professional preparation has come after I graduated with my masters, um, doing, you know, auditory, verbal, and yeah. Yeah, getting training in that area and then going back and get a PhD and focusing more on those kinds of things.
[00:10:20] But unfortunately I had to come afterwards and, um, but you know, you, as we were talking about earlier, before we started, you have sort of a reconstructed sort of. Training used to look like where it was, you know, less of a challenge to become duly sort of, and you've you've you stuck it out and got two different degrees, you know, back in the old days, you kind of, you know, go an extra semester because that's, you know, or, uh, another year maybe then you have both, uh, of course the scope of practice in both areas, both professions is so much bigger now it's you need to do both degrees, but, uh, More people could do what you've done.
[00:11:04] Or we had another way of combining the two, because I do think if you, if you're a good pediatric audiologist and, uh, you need to understand how speech development works, how speech science works, speech acoustics, and then, uh, and then what the intervention should look like and how to judge whether the intervention is being effective.
[00:11:31] Right. And the quality, right? And, and if you are a speech language pathologist, you need to understand the audiology side of things. And you need to know when you're looking at this information, what it means, uh, when you're working with an, a, an audiologist, be able to talk to them about mapping, be able to talk to them.
[00:11:50] If there's, you know, working kids with cocoa implants, of course, and, and understand speech acoustics and all of that stuff too. And so it does require that. It's sort of common knowledge base from both perspectives to be really, really effective. And I wish there was a way today where we could more easily provide that kind of training or for students.
[00:12:16] So maybe down the road, something will happen. And that will be possible. And so I, I wanted to, um, talk to you about what you're seeing today in terms of the cochlear implant program at USF. What exactly is USF health? They can have an idea, but yeah, you have health
[00:12:37] Melissa: is, um, it's a partnership with the university of Florida.
[00:12:40] Um, and UFL and us work together to provide, um, education for students and various medical, medical, and rehabilitation fields. Um, and then also we have a mission for research. And for advocacy and for awareness. So it's really a nice marriage of two different entities with similar goals. Um, the great thing about, um, being in a large hospital and a large facility is we can try some new ideas and some new things like, um, teletherapy, things like that, that other centers may not have the overhead to try to manage and try to figure out from a, um, reimbursement standpoint.
[00:13:23] Um, the other nice thing is that we constantly have an influx of new students that are ready to learn new things. Um, and I've taught a number of courses over the years in the AUD graduate program. And, um, I was pleasantly surprised at UAF to see, you know, my undergraduate and my graduate degree program.
[00:13:41] At UCF have changed drastically. Um, you know, I was the only person that kept asking for those classes in my cohort, and now it's a full fledged track in the program for hearing. Um, and so I think the things that I would have benefited from at the time are now in place. And so I'm hoping more people are getting.
[00:14:01] Be able to take more advantage of it. Um, but at USF I've been able to see undergraduate, um, speech, language, pathology, students, and graduate SLP students wanting to take audiology courses. And they know that that's the area that they want to be in. And they've actually been placed in those courses as you know, extra.
[00:14:20] Um, and so we've been able to see some more of that overlap, which I still think there's plenty of room to grow in that area. Um, especially on the audiology side too. I think that audiologists, and this is just a gross overgeneralization, but I can say it because I am one, we like puzzle pieces to fit. We like, um, to solve the problem.
[00:14:41] We like to have a point a to point Z and to be clear, And quite often children with hearing loss, it isn't a point a to point B. It's a convoluted journey and trying to get everyone on the same page can be difficult. Um, and so I think with audiology, having that kind of mindset of problem solving is really helpful, but thinking outside of the box, that's really helpful too.
[00:15:04] And I think that's. Strength of an SLP, you know, being flexible in a therapy session, getting down on the floor and playing with the child and meeting them at their level is something that I think is taught or, or maybe it's an eight and people and eight and people that, um, work with children. But I do think it's different in the way that we approach patients.
[00:15:23] Um, and I think sometimes if we had a different mind. As audiologists, we would meet people where they are differently, um, and be more successful. And I think we can learn more from SLP use and vice versa. Um, but that is something that I completely think isn't is an area of need for education and a lot of my education much like you happen after the fact so threes, but really, you know, going to the Carolina summer Institute while I was there as an extern.
[00:15:55] And doing the treatment program and, you know, working together with that team of professionals and seeing how they communicate with each other on a daily basis about all of the patients was the piece that I didn't have. You know, I had my graduate degree in speech. I had my graduate degree in audiology, and then I really didn't understand how it all fit together until I did that Institute training.
[00:16:19] Um, and that, you know, that was. I suppose everybody has that, that like, aha moment. This is where I'm, this is, this is what it's all for. And this is how I'm going to get all of my patients where they need to go. Um, and that was, that was when I had it as a fourth year audiology student. Um, You know, with Holly Teagle and Lillian Henderson and all of those wonderful people at UNC.
[00:16:44] And I know a lot of people have left there, but it's just such a, a great model that the rest of us could probably use more of, of how to collaborate, how to cook. Kind of cross train each other and, and be able to be conversant in each of those different, you know, areas of education. Um, that's just something that's a huge passion of mine.
[00:17:06] So I love talking to you
[00:17:07] Todd: about it. I will do agree with you. I should say about UNC chapel hill and I love the folks there and have a really strong relationship with those, those folks there. Um, both personally and professionally, but. You know, I think this whole idea now is that interprofessional training and, and you're describing sort of what can be possible when it does work when it's in place.
[00:17:36] When people are commuting to the professionals on the same team are communicating and they understand. What each other needs and then how to help the patient. And, and I think they are definitely one of the best models that I have ever seen in terms of pediatric cochlear implantation and having a strong team.
[00:17:56] So, um, I haven't been able to visit your program, but, um, I'm sure the it's it's quite the same, but you know, they have always been one of the models I've looked to as, as an example of that. And I
[00:18:09] Melissa: think even, even past that, you know, you have the CLP training, you have the audiology, and then you have amazing, wonderful physicians and psychologists.
[00:18:20] And if you can learn from them as a professional and keep developing. You're going to be better at what you do. Um, you know, fortunately I've worked with really good people at every center I've worked at, I've worked at three big centers for cochlear implants, um, in the Southeast and every center it's just mutual respect and that mutual respect, that just means that we can work better together.
[00:18:42] And that is a way. It's in our families. You know, we have lots of physicians that we work with here at UFL. Unfortunately they respect what the SLP says, just as much as what the audiologist says. And I don't know that it's always that way everywhere. Um, and so I think that we, when we have, we get really lucky.
[00:19:04] Todd: Yeah, I, yes, I can tell you it is not like everywhere else. That's, you know? Um, and I agree it's I think when, when everyone values truly values the input and the perspective of, of each other on that team, uh, it's just gonna be. Every one is stronger. It's gonna make the team stronger. Uh, and I like what you're saying in terms of being open to learning, um, about another discipline and, and from another person on the team who has, you know, a whole other area of training and how you guys can integrate what you're trying to do with, you know, from your perspective, from their perspective.
[00:19:48] And I think, again, it's just. I'm just, um, sort of passionate about that too, when you're able to do that. Well, it just is, it's just like a finely tuned machine that really works quite well. And doesn't mean you don't have hiccups every now and again, I have to get a tune up every now and again, uh, and address issues that come up.
[00:20:07] But at the end of the day, you have each other's backs. You trust each other's judgment, you know, everyone's there for the same purpose and for the same reason, and it just makes everything go a lot. Makes
[00:20:18] Melissa: you so much more confident as a provider? You know, we had a, I just came from a meeting this morning with our cochlear implant team and it was great because we brought up some issues with, um, scheduling or, you know, expediting certain patients or, you know, whatever the case might be.
[00:20:34] And there wasn't a time. But someone didn't come up with a solution or come up with a different workflow or something like that. And it may seem small, but that change means better access to healthcare. And I think that's something that in the field of hearing loss, whether we're providing rehab or technology or, or surgery or whatever we're doing.
[00:20:55] That is an area that we don't have the best access. We don't get people that do need the help. Like we should, you know, titration for cochlear implants still remains poor, even though this may be going up. So part of that is how do we make our flow better at our own facilities? And that's something that we do here at USF health all the time, but how do we make that better?
[00:21:17] So that patients who need services actually get to the service. Um, and I think that's another area that I see us continuing to grow as a field, um, from a rehab perspective and from audiology and surgery. And it's something that we can't ever really be lax on. Yeah. Everything keeps changing, whether it be laws or, um, you know, the, the cultural mess of it or education.
[00:21:42] There's so many ways that we can improve so that people get where they need to
[00:21:45] Todd: go. I agree. And, uh, here, you know, Haya, we kind of wrestle with that transition from early intervention. Too well with the end early invention, getting access to those children and, and on average, you know, kids get about one hour, a month of early intervention and, and yeah, that's, that's a lot, isn't it?
[00:22:10] It's a hard number we're going to do so well. Uh, and, and so it's, it is a struggle here. I know, you know, North Carolina, as we talk about them, Uh, have beginnings in a very different system and, and maybe a little bit better model of how to get families connected earlier and then services can flow here.
[00:22:34] It's, uh, a situation where, you know, kids make it to early intervention, but they don't. Yeah, additional services. They're not referring out of early intervention and connecting families to additional services in the community, which is frustrating because then by the time they hear about cochlear implants or other, uh, communication methodology, or getting enacted to an AAV therapist or whatever the case may be, it's always a little bit later than it could have been.
[00:23:04] And so even today, We fought so hard to get newborn hearing screening and tried to get issues going from screening to diagnosis to intervention, worked out, we still are struggling because of issues and professional boundaries. And this agency is fear. They fear having to pay for additional services. If they refer to another professional, you know, or another provider.
[00:23:33] And it's. It's just exhausting, but we have to keep fighting, keep fighting these, these fights to get families connected, where they need to be as early as possible. So the children can have the very best outcomes.
[00:23:49] Melissa: And I'm sure you guys have done this in your area, especially knowing your reputation. Um, but there are, you know, there's so many ways that I think providers think that they can't get involved in certain things or they think they are part of certain conversations.
[00:24:04] And I think sometimes, you know, this is something that's just coming from personal experiences that I've had with early intervention in our state. I think sometimes we get kind of frustrated with things and then we don't extend at all grant or we don't reach out. Or we don't ask for who should we talk to about how to make this better?
[00:24:21] It's kind of stayed frustrated. And I think that's an area that really all of us could be doing better. You know, I know I've reached out, but it's only one person reaches out. We don't same amount of people and we don't affect the amount of change. And, you know, once you get a physician backing that, or you get, um, an SLP, who's very vocal in the community, backing that.
[00:24:41] And then you get parents backing that. Then you get a movement, you know, if we have people kind of reaching out here and they're trying to extend all the branch and improve referral sources and things like that, it's just not going to be as effective as if we're all on the same page. And I think that's something that we just need to always keep working towards and, and trying to be empathetic of other people.
[00:25:01] But also, you know, this is the research and this is what it shows, um, in terms of early intervention and outcomes. And, you know, what do you hope for your child? The at age 10 at age 20, what do you think they're going to be doing in college? And if we're not having those conversations openly with early intervention, we can't really expect it to change.
[00:25:23] And I know you have, I'm sure done all of that outreach just because I've followed you for a bit from my time at the university of South Carolina. Um, and I think people like that, that go out and change and actually. Reach out, that's going to be the change and the more we can get people to do it the better.
[00:25:43] Todd: Oh, I, I agree a hundred percent and I think I'm continuing to have that outreach and that contact and continuing to be the, you know, that drip, drip, drip of the water that never goes away, that leaks that now can never be fixed. Um, because you know, that that's just what it takes and, and. And then I think the other thing is, is really involving the parents.
[00:26:08] I think if parents can take on more and more ownership, I mean, professional, certainly being at the table and, and advocating. But when parents are in there making calls and testifying before a state, legislature committees and things like that, and you know, it's hard to say no to the parents, you know, when they're saying.
[00:26:29] We need these services, we need, you know, we want these things to happen. And so some of that sort of grassroots organized organization has to take place, uh, is, is really critical as well. And, uh, but yeah, you know, unfortunately it's, it's still a lot of work that needs to be done, you know, and, and we'll just have to continue to keep up the good fight and hopefully, uh, we'll continue to see, uh, uh, positive things that will eventually come out of it.
[00:26:55] So, um, going back to the team for a moment there, um, talk to me about what, or maybe, maybe on the same sort of, uh, uh, chain of thought here, uh, in terms of what's going on in the field, how can teams better serve families? What do you think are some of the key issues that are out there today?
[00:27:21] Melissa: You touched on one already with early intervention.
[00:27:25] Um, and I think not knowing what they're counseled on when they're, um, initially connected with early intervention services is an issue. And then I also think kind of expediting all of our services, making time in our schedule to expedite patients who have reason to be expedited. So if they're identified, you know, later on and they.
[00:27:48] A significant hearing loss and they need to get hearing aids. You know, we still, we run into insurance issues. That really is an impediment to a lot of patients getting to a device that they need. Um, so we're fortunate. We have, um, early steps in the state of Florida. Where, if a patient, a child's insurance doesn't cover hearing aids that we can apply for them through early steps before the age of three.
[00:28:11] Um, but you know, not all kids are identified before the age of three. Um, we're still struggling with some of those late identified children due to loss follow-up or whatever the reason. And I think the insurance issue for us is a huge issue. And so one of the, the things that we've, we've kind of started to do here at USF health as we have, because we have that partnership with us, we have a, um, A great amount of undergraduate students that are trying to figure out how they can help their community.
[00:28:39] And so what they do for our team is actually raised money every year to buy devices for patients that are going through trial for cochlear implant candidacy, so that we don't have to wait for insurance. Um, and we can kind of. Get to the next step in a timely manner without having to wait so long for insurance authorizations, um, Turkey part two, I think the team could do better is, um, you know, one of the things that I like that we do is we meet once a month as a team.
[00:29:08] You know, some of those things, we kind of handle through emails or through things like that to try to expedite. Um, but I think more teams. Kind of going through and saying, what is it that we could do for this patient that would get them to what they need faster? How can we counsel them differently? Do we need to see them back to make sure that they really understand, um, all of those things from a scheduling standpoint are difficult and they take a lot of time.
[00:29:33] And if we don't have good people on our team, figuring out how to schedule that and what's a priority and we don't outline that for them, then the patient loses, you know? So I think keeping better handle on. When a patient needs to be expedited, what the situation might be and really kind of trying to serve convent insurance issues is probably one of our biggest problems, um, aside from the early intervention issue.
[00:29:58] So that would for me, make my life better. If insurance wasn't quite so such an impediment. Um, I do think the education of providers in general, in the community is something that, um, is. I don't want to say lacking, but lacking is probably the right term. You know, pediatricians, general practitioners, the training that they get in medical school is not really sufficient to helping them know that cochlear implants are the best treatment option for significant hearing loss.
[00:30:27] And so getting that information to general practitioners or pediatricians, um, that is something that I think, you know, the ACAA is working on trying to do presentations. They're trying to train people to be more equipped, to make the referral when they may not even know that that's an option. Um, and so I know there's been, there's been talks at more of the GP conferences and things like that, but that's something that I think from a community standpoint, the centers in a community could be doing to really do more outreach and teach people.
[00:31:00] Okay. What does a candidate look like? And it's not just what is on an audiogram, you know, At that functional ability of a patient or, or a child, you know, being able to communicate or not communicate. Those are really overlooked and well visit sometimes. Um, and we kind of do screeners and we think we're doing the right thing and we're missing people situations to improve.
[00:31:25] So I think the general, the general practitioner awareness could be improved greatly.
[00:31:30] Todd: Well, I agree. A hundred percent. Where I am now, Akron children's hospital there two days a week with her cochlear implant team and, um, you know, doing more of the AAV stuff and with my grad students, but we still have referrals that come in sometimes from rural areas or, you know, just, it's just weird that, you know, these kids are three, four years old, you know, showing up with minimal.
[00:32:01] You know, early intervention or no identification of hearing loss, uh, prior to getting referred, you know, later. And, and we're still hearing these weird, you know, uh, testimonies from parents about, you know, well, I went to my family practitioner cause maybe in the rural area, You know, just the general practitioner who served everyone in the family.
[00:32:24] And he thought he was fine. You know, he didn't, didn't say, you know, it wasn't, you know, he thought it was something else. It wasn't hearing loss. And, uh, he assured me it wasn't hearing loss and I didn't need to do anything more, but you know, kids now, you know, three years old, not talking and you know, and so it's like, here we are 20, 21, and we're still having issues where.
[00:32:46] Yeah, those kinds of things are still have the conversation. You know, we still hear of clapping the hands and ringing, you know, shaking the car keys and doing all this stuff and saying, oh, he's hearing fine, boys talk later than girls. Don't worry about it. Or you, you you're a first time. Um, you're, you're being a little too over-anxious, you know, because you're a first time mom and kind of.
[00:33:10] You know, dismissing concerns. And, and so I have to say it's not as bad as it used to be, but it's still a problem that needs to be addressed,
[00:33:19] Melissa: but it's still not where it should be. Yeah. Great.
[00:33:23] Todd: Okay. Right. Right. And I wholeheartedly think, you know, with all of the medical pressure, uh, personnel and, um, and physicians, especially, and even nursing, you know, giving more information about cochlear implants and who's the candidate.
[00:33:38] And then. Going back to how we started this conversation about how we train more, uh, audiologists and SLPs. I think we need to get more experience at the pre-service level with kids, with hearing loss beyond just the survey course or making it optional. I think back when I was getting my masters and how Astro had divided the number of clock hours up into actual areas.
[00:34:07] And so we had to get, I think, 20 hours of pediatric oral habilitation. Yeah, it was defined, had to get those hours and now it's more child speech childhood. Right. Right. And do you know,
[00:34:22] Melissa: a child's hearing loss in that
[00:34:23] Todd: exposure. Right. Right. And so, you know, kids, you know, being in a training program today, I'm like, you know, these kids can go through their graduate program and right.
[00:34:34] Be, or work with a child with hearing loss because those hours are gotten with other populations.
[00:34:40] Melissa: Right. And you hope at some point that they had training in communication modality, you know, unless, unless they've had a course with a preceptor that understands the different communication modalities, they may not have.
[00:34:52] Um, may think they understand what sign language really means or what cued speech really means or oral or, you know, auditory verbal. Unless you go through that and you actually educate someone on that. They don't understand how hearing is even involved in those communication modalities. So then when a parent's choosing and they're incapable of counseling about them, not super surprising that the outcomes aren't what everyone was hoping for, you know?
[00:35:22] So from a graduate level standpoint, we can do better for sure. We
[00:35:27] Todd: could do a lot better. I was, this is just kind of fits a bit. I got an email from a student, a grad student right now who's taking my class. She's about to graduate in may. And so I teach a course, uh, for students. I have courses for students who specialize in auditory, verbal.
[00:35:49] But, um, or other students who don't take those courses? Uh, I teach a course called, uh, audiology for the SLP and I do approach it sort of like that oral habilitation stuff and what, you know, how to work with the child with hearing loss, uh, as a speech language pathologist, what do you need to know? How do you work with an adult with hearing loss?
[00:36:12] You know, what do you need to know? But she said, yeah, This was the first time. Uh, she watched a lecture and she watched electrical speech acoustics and speech science and how it all fit together with the audiogram and. Vowels and, and all this stuff. And she said it was the first time that I realized what, how speech, speech science, stuff that I learned way back when actually applied to anything in the profession.
[00:36:38] And it was the first time I realized what speech language pathologists could actually do with kids, with hearing loss. And I'm thinking, huh? Comes at the end of her, her training with one lecture, she's being exposed to something and it's like, ah, we gotta do a better job. Cause you know, if she had gotten that information a lot earlier on, in a different way, she could have been maybe a very powerful clinician who really wants to do this, but you know, it was like, oh, this is the first time I've made those connections of what I would do.
[00:37:13] Melissa: I certainly wish as a student, those connections would have been earlier, you know? And then what, what would that path look like for another SLP? Now, if, if we did do that earlier, they could be even that much more effective when they start seeing patients when they graduate. Um, yeah, it's huge, especially because we don't want to have trial and error on babies.
[00:37:32] We want to. Successful outcomes. Yeah. And that connection earlier is better.
[00:37:38] Todd: Exactly. Exactly. Uh, well, where do you, what do you guys hope to go with the team there in terms of, um, the next three to five years, what would you like to see happen? Oh,
[00:37:51] Melissa: I would love to see us expand our rehabilitation services. I would really love to see us see more adults for therapy.
[00:37:59] Um, you know, I think that's one of the areas in, and speech and cochlear implants that it's just really underserved that population from a rehabilitation standpoint. And there's so much that we can do to help people process the sound from their implant. You know, we send them home. Some people live really far from our center and they can't come and we try to do things online or, or, you know, telehealth.
[00:38:22] But I don't think that providers really see the importance like they do in kids. You know, the kids it's really apparent that they have a communication difficulty and that if we don't do something to help them, you know, they're really lost and they have to fend for themselves and a child shouldn't have to do.
[00:38:38] But we really should be applying a similar mindset to adults in that they've never heard with electrical hearing, either the cochlear implant and their brain needs to figure out how to process it also. And we could really help them do that and get them at a more functional level faster and not struggling for as long and their family members not struggling as well.
[00:38:58] And I think the whole, the whole aspect of how hearing loss impacts families. That's something that, you know, there's more psychologists on teams now, but I would love to have more dedicated personnel to help in that area. Um, we ha we don't talk about it enough. We don't talk about. As hearing loss really impacts an entire family unit.
[00:39:18] Um, how, you know, we do a little bit of marriage counseling sometimes for really in our scope of practice and, you know, when should we be referring out? And I think we should probably be referring most of our patients, if not all of them, for some level of court or at least a screening to see if we can provide some.
[00:39:37] So I think those areas for our team specifically, I would love to see adult rehab. I would love to see, um, mental health support as they go through this process, whether they be, uh, um, a pediatric patient or an adult. Um, and then I think if we keep growing from an audiology perspective, so I don't have any doubt that we'll have plenty of providers to see people and we keep growing from it.
[00:39:58] From a surgical perspective. Um, but really the rehab, I would love to see us expand more into telepractice and for reimbursements really cover it more readily and not have to fight so hard for certain things. Um, and just, you know, the benefits have been shown in research. So it's not that the work hasn't been done, it has been done and, and now we just need to lobby and get people to pay.
[00:40:21] Um, and I think that's going to be an ever persistent issue in this case.
[00:40:26] Todd: Well, I think you've just summed up the next three, three to five years. There is some forks that we need to tackle a little bit of work, a little bit of work. Yeah. So we have our goals set for, you know, at least through what, 20, 25.
[00:40:41] Well, yeah. Yeah. Well, I, it's been just a delight talking with you today and really appreciate you being on the podcast and best of luck with you and with everything you're doing there.
[00:40:55] Melissa: Thank you so much for having me. It was great to talk to you.
[00:40:57] Todd: I really admire Melissa's drive. I mean, after all she got two degrees, speech-language pathology and audiology, and I think she's combined that knowledge base to just be an incredible professional.
[00:41:14] Who's serving her patients. Well, yeah. Directing a very, very widely respected cochlear implant team. So best of luck to her and everything that she's doing. And again, just a Meyer, everything that she's accomplished. And with that, I can admire you. If you leave us a five star review that helps us to attract new listeners and to grow.
[00:41:42] The program. We want to get this podcast to reach more people. And we do that by having good reviews and by you, dear listener, sharing the podcast and sharing episodes with people you think should hear this information. And with that until next time, be safe and be kind. This has been a production of the 3C Digital Media Network.
Episode 20: The Listening Brain - Dr. JJ Whicker
Todd Houston: Welcome to Episode 20 of The Listening Brain podcast.
[00:00:14] Welcome to the Listening Brain. I'm your host, Todd Houston. In this podcast, we explore childhood hearing loss through the lives of the parents and families who are on this journey and the professionals who serve them.
[00:00:38] Hi, it's Todd Houston. Again, I just wanted to invite you to become a content creator for the 3C Digital Media Network. We want to really ramp up what we have to offer in 2021. This new year that we find ourselves in. So please reach out to us. If you have ideas for webinars courses, or even maybe a new podcast that you'd like to develop, reach out to me at [email protected] and I'll be in touch.
[00:01:15] Thanks. Today I have the pleasure of speaking with JJ Wicker. JJ is a pediatric audiologist and clinical researcher at primary children's hospital in Salt Lake City, Utah, as a clinician, JJ works with children who are cochlear, implanted, and complete diagnostic testing for infants who failed their newborn hearing screen.
[00:01:41] Dr. Wicker also runs the central auditory processing disorders clinic. As a researcher, JJ is interested in understanding the unique challenges posed to parents of children who are deaf and hard of hearing with other disabilities and how those challenges shift the parent's priority for their children's hearing related needs.
[00:02:04] He is also interested in understanding the challenges faced by adolescents who are deaf and hard of hearing as they prepare to transition to post-secondary opportunities. Here's my conversation with JJ, the DJ. Welcome to the podcast. Would you mind introducing yourself to our listeners?
[00:02:23] JJ Whicker: Sure thing. So, uh, I'm JJ Wicker.
[00:02:27] I'm a pediatric audiologist at a primary children's hospital in Salt Lake City, Utah. Um, I have a unique opportunity here, uh, where I get to both do clinical work with children, primarily with cochlear implants. I also run the. Central auditory processing disorders clinic here. Um, but then I also have research time contracted into, uh, the workload that I do here.
[00:02:52] So, um, I'm working on a few grants right now and some data collecting, um, and I'm hoping to build a large research program here.
[00:03:01] Todd Houston: Well, that's all very exciting. And as we were just talking about before we started, we have this common commonality of you went to Utah State University. I was on faculty there 10 years ago now.
[00:03:13] Uh, or I left there 10 years ago. Uh, let's start there. What made you go into audiology?
[00:03:21] JJ Whicker: Uh, so, uh, kind of, um, by really lucky chance I was, I know I've always wanted to work with children. I've had a pediatric heart forever. Um, and so by natural, um, yeah. Thought process there was to go into elementary education.
[00:03:39] Um, but selfishly I was turned away by the income and I am the sole provider of my family. So that mattered to me. Um, and I had an opera coach. Um, whose sister was a speech language pathologist. And so I talked with her and she was the one who said, well, if you want to work with children and maybe even in a school setting, you could go into speech, language pathology.
[00:04:03] Um, and so that's what started the path for me. Um, and then like, so, so, so like so many, uh, students in communicative disorders and deaf education, I went in hoping to become a speech language pathologist. Um, and then the basic audiology class in my undergrad did turn me, uh, it was a really hard decision cause I actually do quite deeply love both sides of the communication disorders profession.
[00:04:31] Um, a lot of people would joke that I went to the dark side, but I definitely never felt that I, I love audiology. I love speech. I love the collaborative practice that we can have, but anyway, so right then, uh, right. Right before, uh, grad school applications were due. I switched to audiology and it is just because I don't know.
[00:04:50] It just, yeah. Something about audiology spoke to me that seemed a little bit more fulfilling than the speech side of the profession. So I can't really pinpoint what exactly made me switch, but I did
[00:05:01] Todd Houston: Well, I think we're all the better for it. So, uh, with the work that you're doing, and of course these children and the families that you're serving, I think it's, we're all very much better for it.
[00:05:12] And so way, way back in the day, it used to be. Um, back in the dark ages, uh, when I was going through grad school, it used to be sort of the, the man went into audiology and the women went into speech, language pathology, but, you know, I was reading the other day on the actual website, but now it's, it's. It's tipped in beef, uh, female direction and audiology as well.
[00:05:37] So there's more females than ideology. Uh, so it was interesting, the, the sort of gender stereotype roles back in the day. And, and of course I kind of defied that cause I went into speech and didn't go into what was, what I do remember is that when I started at this I was at the university of South Carolina, there were four guys and one female who started the audiology program at the time.
[00:05:58] And all four of the guys filled out that could make it. So there was a class of one female in that audiology cohort that went through because all the guys, all the guys couldn't make it. You have had, uh, some, some great training. Uh, and, and so let's talk about what you want to do as a pediatric cardiology audiologist, and what is some of the research that you're focused on?
[00:06:34] JJ Whicker: So, um, I’ll kind of answer that second question first, because I feel like it leads into what my goals are as a clinician. Um, so working with Dr. Karen Munoz, she was my PhD mentor. And a lot of what she looks at is, um, looking at the psychosocial impacts of deafness or hearing loss on, um, on individuals who are deaf or hard of hearing.
[00:07:01] And she does work a lot with pediatrics, but she also does work kind of across the lifespan in that regard. So that's where, um, And that's where my thought process is started as looking at when individuals are diagnosed with hearing loss, how does that impact them? And of course, because I do pediatrics, um, my lens is very specifically looking at the parent, um, experience.
[00:07:27] Yeah. So that's, that's where I started looking at how parents are feeling about the diagnosis. What are their experiences? How did they interact with professionals? Um, to eventually make those, um, plans for care and how well are professionals doing at being family centered at making sure we're engaging with families in a way that matches their needs and responding, not to just their technical needs, but also to their emotional financial environmental needs.
[00:07:57] Um, so. Then it kind of shifted when I was an audiology student, I'm doing my first serious pediatric rotation, uh, ironically right here at primary children's hospital. It's how I got my foot in the door is I did a student rotation here. Um, and when you work in a children's hospital, one of the things you're exposed to a lot, our children who are what we call Multipli involved.
[00:08:22] And I don't know if there's a better term to use that. It's more, um, Appropriate, but that's the term that we tend to use when children, um, have multiple disabilities, multiple medical complications in addition to their deafness or hearing loss. Um, and so when I was a student exposed to these families for the first time, really, I mean, at.
[00:08:44] Other clinical rotations. I was occasionally, um, exposed to children who are deaf or hard of hearing who also have down syndrome, um, or maybe autism, but that was kind of the extent of my experience, but then here at a children's hospital, you see so many different, um, complexities going on and you would hear very, um, I would hear very emotionally, um, just powerful statements from families.
[00:09:14] Saying, you know, we aren't wearing hearing aids right now. We're not doing the cochlear implants right now, just because we need a break. My kid needs a break. We can't, we can't do this right now. We can't fight this right now. Um, it's just too hard, you know, I'd hear those kinds of things come out of families, mouths of, you know, we're not, we're not really wearing the devices.
[00:09:36] Um, And it was curious to me because, so I wanted to know what, what were families experiencing that would lead them to those, um, sort of conclusions or outcomes? Was it led me down this road of understanding how parents determined to prioritize, hearing related needs when children are deaf or hard of hearing and have other disabilities on top of their deafness or hearing loss.
[00:10:04] Um, so that, that's what led me to my dissertation. My dissertation was doing a grounded theory, looking at how parents determined to prioritize, hearing related needs for children who have down syndrome. And what emerged from that study was, um, that, you know, professionals definitely do play a role. Um, the level of how much families themselves are willing to take action to how much they believe in the importance of the hearing related, um, concerns.
[00:10:36] Um, those, those were the kinds of things that were emerging, um, which kind of just. Validate a lot of other research that's come out about the importance of how professionals interact with families and the health belief model. You know, our families, if they don't believe that there's an issue, they're probably not going to do anything about it.
[00:10:58] Um, so, so th there wasn't any like, um, huge discovery about how parents decide to prioritize. And it was really interesting to me because one thing I did think that was going to come out from that study. Where the medical needs were that the complexity of the child's medical needs were going to outweigh the hearing related needs.
[00:11:18] You know, the open heart surgeries, the breathing, the feeding. Um, I was expecting those to emerge from this study as being reasons why parents did not prioritize hearing related needs, but it didn't. I did come out in some ways, but not consistently across cases like I predicted. And so that, that's what stood out to me, um, is that even when children are, uh, have these complex multiple involvements going on, it's it could be that, um, that the medical complexities themselves are not exactly what or, um, Lending toward this phenomenon of parents not prioritizing hearing related needs.
[00:11:58] There might be something else like the professional. How are professionals interacting with families to help them understand a hearing loss, what it means for outcomes? Um, because. You know, every, every parent I've talked to so far has indicated that a priority for their child, even when they're multiple involved is the ability to communicate.
[00:12:19] They want their child to learn how to communicate for him or herself. Um, but if they're not going to take, uh, prioritize those hearing related needs, then they're going to compromise that value. So. A lot of people will say, well, hearing loss is quality of life. Whereas they've got these a life and death situations going on.
[00:12:38] So of course it's going to take a back burner. And while I think that that's valid in many, many ways, I also think that that value for communication is just as high. And there's a way to work with families in a way that maintains, um, you know, uh, families have chosen listening and spoken language. And that can only come through audibility.
[00:12:57] Um, so they, there has to be a way to balance the complexities of what the child is experiencing and being able to navigate the world of hearing health. So that was kind of a Longwood in dancer to let you know that, that that's what I do as a researcher. And then also as a clinician, that's what I really care about is helping.
[00:13:18] These families who come in, um, I do their ABR child is deaf, but they also have. Trisomy 18 or Kabuki syndrome or these other rare, you know, treat your Collin's syndrome. These other were a rare syndromes or conditions that have huge implications for the child's. Um, Life and helping families understand where hearing loss comes into play and helping work with them to establish goals in a way that meets their needs, um, in the home.
[00:13:51] So they can still prioritize here in care, but also manage the child's other, uh, needs.
[00:13:58] Todd Houston: Sure. I think you're hitting on a lot of good stuff there in terms of, of how do we work with parents? And like you're saying, how do we be family centered? And I think, or I think too many clinicians, and this is for speech-language pathologists and audiologists and others.
[00:14:18] I think it's a term that's thrown around. Yeah. And a lot of people think they're doing family centered practice, and they're really not just because you talk to the family and ask them what they're wanting to do. Uh, it doesn't mean that everything that you're doing is really family centered in terms of making sure they understand and have the information they need to make sure.
[00:14:41] Uh, a real decision. Uh, and I think too, you know, one of the things that came up, uh, before in another, uh, episode was the idea, this, you know, just one little area of, of data logging. And how we can see through data logging, you know, how, how long each day, the on average that the child is wearing the hearing technology.
[00:15:05] And, and I have seen this and, and, and, uh, and I think it's, you know, something we need to think about, but how it's sometimes used to scold the parents. Uh, which, you know, I think bringing it to their attention is the right thing to do, but how that information is used is often more, you know, being very critical.
[00:15:29] You know, why aren't you keeping the on there instead of getting to that in terms of what's, let's talk about why, you know, Johnny isn't wearing his hearing aids or his cochlear implant and, and what can we do when, when we he's having this. Downtime and he's not wearing it. What are, what is he doing? What are you doing?
[00:15:50] You know, where is he is, you know, is he at a babysitter during that time? Do we need to, you know, talk to the babysitter and then, you know, help that person understand. Uh, and so we often don't go that extra step, but really try to solve the problem. It's just, you need to do better. And then of course, the family, the parents leave that session, thinking that they've been scolded.
[00:16:09] And of course they get defensive and they build up, you know, this resistance and it doesn't often help the situation.
[00:16:17] JJ Whicker: Right, right. Absolutely. And it happens in audiology all the time. Um, there's lots of research to show that we tend to just stick to those technical data points where we'll see low data logging.
[00:16:29] And we'll say, you know, evidence is showing that your child needs to wear eight to 10 hours a day. If you want blah, blah, blah, blah, blah. And that's where we stop. Um, but just like you say there, what we don't know is that the parents are desperately wrestling their child at home and they get burnt out.
[00:16:45] They're crying, the kid's crying, um, and they don't know what to do. And so then you add the multiple disabilities on top of that, um, in telling parents what they need to do. Like that can just be a real, um, Real hindrance to their ability to develop trust in you to feel validated by you as a clinician, um, to feel heard by you as a clinician.
[00:17:11] Um, if you're just going to stick to those data. Cause I mean, you're right. The data do show that a higher, longer wear time equals improved, uh, spoken language outcomes. You know, that's true. It's there in the data. Um, but to get there. Doesn't mean that we have to just automatically flip a switch and suddenly it's happening.
[00:17:35] There's, um, goals that need to be set. There's understanding. Uh, I feel like I'm just echoing what you just said. Understanding what barriers are there in the home that are leading towards this. Do they, do parents need a resource for understanding how to manage child difficult child behavior? Do they need, um, someone in the community to come teach them?
[00:17:57] You know, when your child throws a tantrum? And you go ahead and take away the hearing aids, like do parents know that that's in a reinforcer and so they need to learn a new strategy, you know, like there's just so many things that parents need. Um, and just telling them what to do. Isn't going to get them there anyway.
[00:18:18] Todd Houston: Sure. And I think of, um, we're Singlish. She was here on our faculty, um, until recently she retired, but, you know, she talked about being too techno centric in our counseling. Um, what do you say to other pediatric audiologists who basically will say I don't have time for all of that. I don't have time for the counseling side.
[00:18:40] Right. You know, because I'm, I'm booked back to back and, and, uh, you know, I only have 10 minutes to do this or 15 minutes. Um, you know, you're, you're in a, in a sense of high productive hospital setting. Um, what do you say to other audiologists? Pediatric cardiologists who may. Okay. So yeah, it's just not in my schedule to do that kind of stuff.
[00:19:04] JJ Whicker: I think that when people say that, what they don't understand is that person centered care or family centered care is not a tangent billable thing. Um, and I th I think counseling is a tool to be person centered, and I think people get caught up, um, thinking that counseling is a, um, time structured, separate service that comes.
[00:19:30] With clinical services and I don't believe that's true. I believe being person and family centered is just a way of being a clinician it's, um, allowing, allowing the time for families to ask questions and being quiet so that they feel like they have a second to think about the questions they want to ask.
[00:19:49] You know, it's, it's just a way of being clinician. Um, and I would also argue. That, um, not being person centered, not counseling, um, is actually going to hamper your clinical productivity because if a family has this reoccurring issue and you feel like you don't have time to address it, then that issue is always going to be there.
[00:20:14] And it's always going to be a part of your clinical discussions. And Dr. Munoz, Karen Munoz did a study and I can't remember. What the study is called or where it's published, but she did a study where she has data that shows that when you take the time to directly address a concern, it will actually decrease the amount of time a family spends in clinic because it's been addressed.
[00:20:35] So that's, that's my thoughts regarding that particular concern. And I know it's out there.
[00:20:42] Todd Houston: Sure. And one thing that strikes me even. From the early intervention sort of speech path side of things and working with, with families and parents is that the whole area of adult learning theory. And how do we apply some of those concepts?
[00:21:01] You know, this is another adult and we have to understand where they're coming from. Being person centered being family center, but we're teaching them new skills. So how do they process information? And of course they're processing information about their child, you know, and then, so how do we, how do we roll all that together in a very positive, uh, learning experience really where they can be successful with the technology, as well as doing all these other things in terms of, you know, Talking to their children and doing all the things that you know, me as a SLP or the early interventionists going into the home or through telepractice, they're having to write a do as well.
[00:21:41] And so they're, you know, I feel like the, sometimes I think the, um, the bandwidth isn't there for all the stuff that we ask these parents to do, especially in the beginning, uh, when we all know that. Time is of the essence. And we want them to keep the hearing aids on and we want them to talk to them. We want them that he's saying to them, we want to, you know, and, uh, we're all just kind of throwing these things at them.
[00:22:04] I think we have to all be cognizant of what they're going through. Yeah. Yeah. So getting back to your research. Where do you want to go with your research as in, in the future?
[00:22:19] JJ Whicker: So, um, right now I'm kind of in the stages of developing an infrastructure to, um, to bring in some grants, uh, and, uh, And just develop a strong program because one of the downsides to where am I, I love where I'm at, but, um, I'm not affiliated with the university, which most of the physicians and other researchers who do research through a primary children's hospital, they're duly affiliated with the university where there's, I think a better infrastructure for, you know, grant writing and.
[00:22:54] Um, supports and all that good stuff. So I, and I'm all, I'm not duly employed by the university, so that's kind of tricky. So my, my focus right now is just getting some grants. Um, I'm, uh, looking, uh, one of the, I'm looking at two different populations right now. One is children with craniofacial differences.
[00:23:12] I want to know, uh, I just completed a study. That's looking at, um, They're trending timeline for early hearing detection and intervention. Like how does that, how is it, how is their timeline? Are they meeting those, meeting those one, three, six milestones as compared to children without can you have facial differences?
[00:23:29] Um, And so I just collected that data retrospectively. And now I'm looking to get a grant to look at that data more carefully in a prospective manner. I'm also looking at children who are being treated for cancer and, and experienced ototoxic induced, hearing loss. That's one population where I hear all the time from.
[00:23:50] Um, pediatric audiologists. Oh, I want to even talk about hearing aids if I see hearing loss because the kid is going through so much, so it's a family. Um, so it's not even something I bring up and, and, you know, I disagree with that because if we're not giving the family the opportunity to pray or a ties hearing related needs, maybe it maybe they're right.
[00:24:08] You know, who knows, maybe they're totally right. And every family is 100% agreement with that approach, but we don't know that. And so I want to know that. So I'm. Preparing a grant, uh, for that particular population to explore that prospectively as well. Um, So I'm, I'm a mixed methods researcher. So I love qualitative and quantitative data.
[00:24:28] So what I'm trying to do is, is do these interviews so that I can develop a scale to, uh, I would love to be able to quantitatively measure priority as a clinical tool. Um, so that. You know, as part of our counseling, our family centered care, if we're seeing that data logging, instead of having the pressure on us to be like, do you even care?
[00:24:49] Cause obviously it's hard to ask that we can, we can give families a way to indicate on a survey, you know, right now hearing is not important to me as of. To just measure priority, to facilitate a way to open up that conversation between clinicians and families. So I'm just starting out my research career.
[00:25:11] So that's about where my vision ends, but that's, that's what I'm hoping to do.
[00:25:16] Todd Houston: Well, that's, that's a lot to tackle what you've just talked about. So I, I. Best of luck with all of that. I know, um, the challenges that can be there when you don't have that university support, uh, behind you. And you're trying to do this, uh, because you're, uh, you work for the hospital.
[00:25:35] And so that's, that's still a little bit different and they kind of view research is a little different than, than maybe the university does and they're not. So, you know, Best of luck with those grants. I think once you get some money rolling in with some grants, you know, they'll hospital will change their mind and then they can invest a little bit more in your time and letting you do some of that stuff.
[00:25:58] Yep. Well, JJ, it's been so great having you on the podcast. And is there a way for people to reach out to you maybe through the hospital website or. Or do you have another
[00:26:09] JJ Whicker: way? Um, so right now our, our hospital, our audiology website is actually under revision right now. We've had a big changes, so new, new faces.
[00:26:19] So, um, but if you were to, uh, email me, I can, um, do, is there a way that you just give that out to people? Or do you want me to just share it right here right now? You can do it right now. Okay. So my email is J J dot w H I C K E R. At gmail.org. Um, me, so I, I still am part of Dr. Karen Munoz's research laboratory.
[00:26:46] I'm her extension now. Uh, so we have a Facebook page it's called the, the hearing impact project research laboratory or the hip lab. We're on Facebook, we're on, um, Instagram and LinkedIn, the hearing impact project research laboratory. Um, so if you want to reach out to those venues that works as well.
[00:27:04] Todd Houston: Awesome. Well, best of luck to you and all that you're doing and, uh, hopefully in a year or so, you'll come back on and tell me about all the grants you've gotten written and got funded and all the new work.
[00:27:17] JJ Whicker: That sounds good. Thank you so much for having me.
[00:27:20] Todd Houston: Well, JJ is very, very impressive and I wish him the best of luck in his clinical work, as well as the research that he wants to do.
[00:27:30] And I really appreciate him being with us. I appreciate you listening to today's episode. If you don't mind. Please leave us a five star review. That way we can attract more listeners and continue to grow the podcast as well. If you would like to hear me interview someone on the podcast that you would like to hear from.
[00:27:56] Email me at [email protected] and I'll do my very best to reach out to that person or to yourself if you'd like to be on the show and we will try to get all of that set up for you. And with that, thank you as always for listening, be safe and be kind. This has been a production of the 3C Digital Media Network.