All About Educational Audiology – Episode 57 with Dr. Tina Childress
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Today, I’m so excited to welcome Dr. Tina Childress to the show!
As an Educational Audiologist who is also bilateral cochlear implant user, Dr. Childress has had the unique experience of navigating audiology as both a patient and a doctor.
Because of this, she has a wealth of knowledge and resources to share, and luckily for us she is here today to discuss all of this extremely helpful information.
This week on All About Audiology:
- 2:18 – A free downloadable gift for our listeners! “How to Connect With Your Baby in Five Easy Steps” has exercises between 1 to 5 minutes long and can be found at www.allaboutaudiology.com/baby
- 4:23 – You can also find the 5 step guide to navigate your child’s hearing loss on our website at www.allaboutaudiology.com/guide or www.allaboutaudiology.com/guia for the Spanish version.
- 9:06 – Tina was originally pursuing a career in engineering when she realized it was not something she wanted to continue with. After receiving a Masters Degree in Audiology, she decided she wanted to work with children, and now works in an Educational Audiology office.
- 18:54 – Speech perception testing is important, and can be done in different conditions to see how a child responds. For example, tests can be run with or without hearing aids and with different levels of background noise.
- 20:55 – An Educational Audiologist will run a series of tests and then write a report on how to best assist a child in the classroom. This can include sitting them to the front of the room, and providing lip reading information.
- 23:44 – Children who have mild to moderate hearing loss can have worse outcomes due to receiving less intervention. It’s important that mild conditions are taken more seriously, so that all children receive the support they need.
- 24:19 – Nine months after starting her job, Tina became very ill with a high fever. About a month later, she began to notice hearing loss which quickly progressed, and was eventually diagnosed with Auto-Immune Inner Ear Disease.
- 32:34 – The goal is communication, not being able to hear better. Communicating in some way is much more important than not communicating at all.
- 34:34 – Some people in the deaf community may use code switching for different situations. For example, they may function as a deaf person if they are using ASL while speaking to another deaf person, but function as a hearing person if someone is speaking to them using a loud, clear voice.
- 36:02 – Parent’s might worry about how or where their children will fit in, but kids shouldn’t have to choose one method of communication over another. They may communicate one way with their family at home, and another way in school with their friends, and that is perfectly ok.
- 36:50 – Lack of language can impact a child for the rest of their lives. It’s better for children to have access to more than one method of communication than none at all. The worst that can happen is your child will end up being bilingual!
- 38:00 – The sign for intersection represents the world or identity you identify with. The world is constantly changing, and there’s no way of knowing how your child will identify later in life.
- 39:43 – There are several options when it comes to dealing with hearing loss, such as getting cochlear implants or learning ASL. The aim should be to educate people so they can make the best decision for their family. Be kind and don’t shame anyone else for their choices!
- 44:13 – During your child’s first year, remember to just be a parent. Treat your child the same as a child with normal hearing, smile at them, talk to them and play with them.
- 46:09 – Think about how you are going to communicate with your child. If you go the cochlear implant route, remember you’ll still need to be able to communicate with them when they are “off the air”. Take time to think through your decision as this will impact them for the rest of their life.
- 54:01- For parents with kids who are newly implanted – just keep talking to them and giving them meaningful information to process. Have conversations, let them feel things, even expose them to music!
- 55:20 – There are so many factors that can impact how well children do when implanted. A few examples are the reason for their hearing loss, age of onset, if there was any birth trauma, and what they are able to hear with their implant.
For more resources and research visit:
All About Audiology Website
All About Audiology Facebook group
https://www.facebook.com/groups/470583160143167/about
AllAbout Audiology Instagram
Link to Dr. Tina Childress’s Resources
Mentioned in this episode:
Next time on All About Audiology:
Episode 58 – All About Tinnitus via Telehealth – with Dr. Ben Thompson
Transcript:
Welcome back to the All About Audiology podcast. I’m your host, Dr. Lilach Saperstein. And if you have been listening, you know just how deeply I care about your experience with anything to do with audiology. For many, many of you that starts with the newborn hearing screening and not getting a pass for your baby, where you’re not sure what is their hearing status and what are we dealing with here? What is the new information that we now have to research, and appointments we have to wait for and kind of being thrown into this whole new world of audiology. And that can be really overwhelming and a vulnerable place to be.
If this is you in the past, you can remember what that period of time was like and all the questions you had and all of the confusion and uncertainty that you were dealing with at the time about hearing aids. What are cochlear implants? And what about this whole communication method- question-debate. Sign language, yes or no? Often before you even have a full picture of what their hearing status is and when your child is identified as deaf or hard of hearing, there can be a lot of very heavy, scary emotions that go with that, which are all very, very valid.
But I want you to remember that your baby is your baby and you are their parent. You can do so much. You can be so much for them just by being exactly who you are. And you’re going to learn all the things you need to learn in time. And you’re going to have all those appointments and get all the information you need and make all the decisions that are right for you and your family. But also at the same time, don’t forget to connect with your baby, to parent them, to change their diapers and sing to them and hold them and look at them and do all the things that make you connected to your baby, because that’s the foundation for everything.
As we are wrapping up this incredible year, 2020 with so many things that went on. The world is heavy with change, with a lot of grief, with a lot of confusion, with a lot of unknowns. I really wanted to offer something and provide a gift to any parents who are listening to this podcast and professionals to share with your clients with your patients, this would make such a nice gift. It’s a totally free download. And it is, “How To Connect With Your Baby In Five Easy Steps” and a couple of exercises of what you can do
while you’re figuring all this out, while you’re thinking and gathering information at the same time. Taking just a few minutes – the exercises are between one and five minutes. There’s five exercises. And you can download this free workbook at allaboutaudiology.com/baby.
That is the link where you can just put in your name and email and right away, I will send you the “How To Connect With Your Baby” workbook and lots of great ideas there and room to write things down and do some of the exercises that will help you feel a little more grounded, a little more connected, a little more in tune. So, I hope that that is a helpful resource.
In my house, we’re celebrating Hanukkah and I hope that this is a nice gift that can be meaningful to you or someone you love. And I wish you and your family, a healthy and happy holiday season and coming into the new year with new direction, with new energies, with more resources and ability to remember what’s truly, truly important. From my home to yours, from my heart to yours, all the very, very best as we wrap up 2020 and head into 2021.
But before I leave you hanging, I have one more fabulous episode for the year with Dr. Tina Childress. And we’re going to dive into that right away. Please visit allaboutaudiology.com for full transcripts and show notes for all the previous episodes that we covered this year. My goodness, we had over 20 episodes.
On the website, you’ll also find the “Five Step Guide To Navigating Your Child’s Hearing Loss”. That is a free download with lots of questions to ask yourself when you’re first faced with the diagnosis about knowing what to do next. That’s at allaboutaudiology.com/guide for the English version and allaboutaudiology.com/guia for the Spanish version. There is also a hearing aid checklist to help you stay organized with morning and evening routines around the hearing aid. And now, a brand new resource to finish off 2020 and that is at allaboutaudiology.com/baby with exercises to help you connect to your baby, some kind of writing prompts and also a kind of meditative practice. But it’s very simple, very quick, practical, and easy.
And I am so grateful that you are a listener. Thank you to the patrons of the podcast. That is also so, so appreciated for help in producing the show and inviting guests. And thank you. Just thank you. Thank you for listening, for being in this community, for being in the Facebook group, for following on Instagram. All About Audiology has grown and really become this beautiful community that I’m so, so honored that you are a part of.
And without further ado, let’s jump into the super high energy and fun interview with Dr. Tina Childress, all about educational audiology and her personal journey with audiology and with becoming a cochlear implant user.
Welcome to the All About Audiology podcast. I’m your host, Dr. Lilach Saperstein and this is the show where we talk all about audiology and how it relates to your life. This is not just about audiograms and speech bananas. This is about life: communicating, socializing, making friends, learning, educating, having accessibility to your life and your people.
I’m so excited to be joined today by Dr. Tina Childress, who I just call “the resource queen”. She’s got so many things to share with us today. She’s an educational audiologist, who is also a bilateral cochlear implant user, ASL fluent, tech savvy and advocate. And I’m so excited for all the things we’re going to be talking about today. And if you don’t follow Dr. Tina, and get all her resources, everything will be linked in the show notes at allaboutaudiology.com in addition to a full transcript, as always.
Dr. Lilach Saperstein: “So, hello, welcome. I’m so excited that you’re here.”
Dr. Tina Childress: “I’m excited to be here.”
LS: “Okay. I think a great place to start is your background, your journey into audiology, into advocacy, and all that. So, you begin wherever you like. Where were you born?”
Dr. T: “Oh, so once upon a time, Tina Gonzales was in high school. And she took one of those career placement questionnaires. And according to my answers, I was either supposed to become a funeral director, or a DJ. So, let’s just say that I’m really happy that I did not listen to my career counselor, and I ended up going to college and I entered it in engineering. So, I’m the first one in my family to go to college here in the United States. Both my parents are from the Philippines. And they came here in the mid 60s. And so, I was kind of the guinea pig for all those things. I didn’t know really what I wanted to do. I can do lots of different things. And so, I thought, my dad has a pretty good job. He’s an engineer, I’ll do that. I’ll do engineering.
So, I came down to Champaign, Illinois, which is where I still live, to the University of Illinois. And I entered in the engineering department in the engineering college at the time back in the late 80s. So, I’m totally dating myself. There were not a lot of females in the field. When I look around now, and I see female mentors, and mentees and all of these wonderful support systems that we have to bring up girls and females in STEM kind of professions, it gives me great pleasure. And you know, I’d like to pay that forward and hopefully show people that we can do that stuff too.
And so long story short, I realized that I did not want to do engineering. And so, I took a class that had nothing to do with engineering. And that class was a sign language class. I went into this building that was like the building that time for God. It was kind of stuck in the 60s, burnt orange walls, brick, kind of dark. But what it did is it introduced me to this field that I had never heard of before called communication disorders.
And at that time, when you are in undergrad, you take classes in both speech pathology and audiology. We had like 35 females I think, all females in the college at the time. And me and my roommate were the only ones that decided to go into audiology. I think the first audiology class kind of scared them. They started talking like physics and doppler and I’m like, I was an engineering student. I took calculus and physics, this is not scary to me. And so, that was my entry.
Back at that time, you got a master’s degree in audiology. And so, I actually took a break. I got engaged my senior year. Was it my senior year? No, not my senior year. I’ve been very serious with my then boyfriend, now my husband, and I said, Oh, I want to work for a little bit. And so, I started doing temp work and I ended up at a law firm that kept me there for three and a half years, until my boss kicked me out and said you’re getting comfortable. So, for three and a half years, I had like this legal background.
Then I did my masters in audiology, and I finished and I knew that I wanted to work with children. Here at the University of Illinois, we have lots of engineers and sometimes they would come for a hearing test and ask me questions like, what’s the impedance of those headphones? Have you calibrated your equipment? How do you know that it’s accurate? And I’m like, I don’t want to deal with that. I’m going to work with kids. Plus, I like to be silly. And I’m short. And I looked really young. And I knew that I just wanted to work with kids.
And for my placements, I was really lucky that I had two really fantastic placements in different pediatric settings. One was actually a pediatric cochlear implant program that was local. And then the second line in my last placement was in an educational audiology office. And that ended up being my clinical fellowship year, which is like the fourth year for the people that are doing AuD. And then, it just happened that the audiologist that was there was getting transferred. So, her job opened up and I just kind of eased right into it.
I love working with children. When we were in school, it’s kind of funny, when the bell rings, and all of the students come into the hallway, I get kind of lost. So, like, if I’m talking to a co worker, all of a sudden, they can’t find me because I’m like the same height as the students. It’s all good, though. Hahaha.”
LS: “Incredible story for a few reasons. I think the first generation American is a story that a lot of people relate to, and something that I relate to, as well, also as a first generation American. Actually, I wasn’t even born in America. But you know, I was the alien in the class when I got my citizenship. And then my friends made me an alien cake. But also the idea that after school, you did something else.
There’s life outside of academia. When you’re in it, it feels like your whole life and like undergrad, then intergrad, then your job and you got to follow the rules. But it’s so much more common to have other interests, other majors, other jobs, career changes. Non traditional students that sometimes say, ‘Oh, no, I’m 28.’ It’s like, you could still come into school when you’re 28 or when you’re a parent, or when you had a degree in something else, or whatever. So, I appreciate that.”
Dr. T: “That’s really funny, because I literally was 28 when I graduated. That’s so funny that you picked that number. That’s exactly.”
LS: “In our cohort, we had ten. And, you know, everyone was just out of college except for one person. They were like the old person who had work experience, like, you’re not that old.”
DR. T: “Yeah, it does. And, I think for me, I’ve always been a good student, but I think I was even a better student when I was in grad school because I understood more. And I think working with children, that was like a big thing too, though, at that point, I hadn’t had that that much exposure. I mean, I had been doing babysitting for a long time when I was younger and stuff like that. But I just love working with kids and being silly with kids. So, that’s my favorite part.”
LS: “Okay. The third thing I picked up on was how important those placements are when you’re in school, because that’s your first like, ‘Oh, this is how it actually is outside of the class’. Class, learning, learning, learning. You also have to see what goes on. And it’s incredible when you get those opportunities. They are also work opportunities, networking, you get to know people. So, students listen very carefully. Your placements are very important.”
Dr. T: “Yeah. And I think the huge benefit also to having placements is not only that you find what you like. You find out what you don’t like. And I think it’s also a really great opportunity. It’s almost like Baptism by fire and it’s hard, but to figure out how to work with difficult personalities. You know, sometimes as students you may feel very powerless because you might have a preceptor that is just unkind. I think we’ve all had that one preceptor that had the reputation for making students cry. And it makes me sad that there are people that are mean like that.
I’ve been a preceptor too for dozens of students out there. It makes me so proud when I hear about former students that are now my peers that have decided to go into educational audiology or something like that, because it’s not something that you learn about very strongly when you’re in school. I mean, a lot of it seems to be, how to sell hearing aids or how to program cochlear implants. I think two topics that are very kind of superficially talked about are auditory processing disorder, and educational audiology unless you have strong faculty or adjunct faculty that really take the time to mentor students and let them know about those two very, very kind of critical concentrations.”
LS: “So, as an educational audiologist, can you tell us a bit about your day to day, how it changes minute to minute, the case load, the travel? What’s it like?”
Dr. T: “It looks really different right now with the pandemic. Did we start the school year in person? We did start the school year in person. But we drastically had to change, obviously, our protocol for keeping safe. And for using PPE (personal protective equipment).
A couple of weeks ago, it was decided that our office would completely close to seeing kids in person and doing any kind of assessments. So, what we’ve been doing is just really trying to support our teachers of the deaf and hard of hearing, and our students and do some troubleshooting. We have some projects that we’ve been neglecting for a while, but now we have the time to do. I’m also really lucky in that I have a coworker. In some areas, that’s not the case. There are more audiologists than not, here in Illinois, that work alone. We have these different counties all over the state, and they’re the one audiologist. And so, working in isolation, or working in a bubble can be really hard.
Every other Friday, when the pandemic started, it used to be every Friday, I started having zoom meetings with Illinois educational audiologists. And it’s just a time for us to vent and if there’s any kind of blessing that could come out of all of this, is that everyone now knows how to use a webcam and knows how to zoom and that we can all get together. We used to have an annual meeting where everyone would actually drive to Champaign because we’re kind of in the middle of the state and we would get together. But touching base every couple of weeks has been really good for our soul too as we’re kind of working through all of the things. It has been good.
So, backing up when I think about what it was like when we were in person. What I love about educational audiology is that there’s so many different things that we could be doing. We’re not only doing testing in the booth, which I think is really important. And when we do testing in the booth, we very much have in mind, ‘Okay, how is, what this kid is doing, how is it impacting them in the classroom?’ So, we take speech perception testing, I think it’s paramount.
I don’t honestly care about an audiogram. I rarely describe the audiogram to the parents. So, you know, we were all taught this is how you explain low frequencies, high frequencies. That doesn’t matter. The parents want to know, is my kid ignoring me on purpose? Or what can my kid hear, what can my kid not hear? So, I really feel that speech perception testing is so important and very functional when they’re able to do it.
As much as I can, I try to do it in different conditions. If I have negative five minutes to do an audiogram, as many of us do that work with children, I’ll always try them aided with both hearing aids on or whatever kind of configuration that they do most of the time. Some kids only wear one implant when they have two. Okay, fine. Let’s see how you do with the one that you wear all the time. If we have time, we’ll slap on the other one and see how you do with two and they compare. There’s lots of comparisons. I’m a big believer in looking at the kid and see how they do in the different conditions compared to themselves. And then later, I’ll compare them to other students.”
LS: “Can you just explain what that means about different conditions?”
Dr. T: “Yeah, sure. So, I’ll do aided first. I like to do aided speech perception testing in quiet. Then I like to add background noise. If needed, I will also add speech reading or lip reading cues. So give them visual information too. Because these are the numbers that we can present to the teacher that says, ‘This is why Johnny is having a hard time in math class. It’s because every time you go to write something on the board, you keep talking and you take away his visual information.’ I like to do testing also with remote microphone technology, same conditions, quiet noise with and without lip reading cues, to kind of show the benefit.’ “
LS: “Yeah, and we’re not trying to frustrate this child. We’re actually just trying to find how to help them. So, that role of the educational audiologist testing is very different than the diagnostic hospital or clinic audiologist that is then using that information to program their hearing aids or, get the info. But what you’re doing is much more about functional access.”
Dr. T: “Yeah, we’re not focusing so much on the pathology of their hearing loss as much as we’re concentrating on their abilities or their problems in the classroom. And then when I write a report, I like to frame it in terms of, this kid does their best listening in these conditions, and then I list the things they need. Lip reading information, we need to consistently use a remote microphone technology or we want them to sit towards the front of the classroom, etc…
And for students, one piece of advice, and anyone that’s ever been a student in any of my classes knows that this is what I do. You need to make sure that the people that you’re talking to understand what you’re saying. It doesn’t matter how completely brilliant and smart you are if you can’t take that knowledge and convey it in a way that people can understand. So, when I teach, I make one of my assignments always be, ‘I want you to describe how hearing works. You have five minutes, because that’s about all the time that you have. And I want you to write it down verbatim, word for word, what you’re gonna say. I want you to time yourself. And then I want you to call your mom, your boyfriend, your roommate, or whatever, and read that to them. And if they don’t understand it, do it again.”
LS: “And nowhere in there are you saying, scala media and talking about synaptic channels. Hahaha.”
Dr. T: “Even for some families, just even saying the word moderate hearing loss means nothing to them. And when you look at the percentage of people that have mild to moderate hearing loss, it’s like 94% of people that have hearing loss, have mild to moderate. There’s a few more that moderate to moderate-severe, and then just very little, when I look at a pie chart, I can see it in my head, have severe to profound hearing loss. And so, I’ll say, ‘What it’s like for Johnny right now who has an ear infection? Take your fingers and plug up your ears.’ ”
LS: “Yeah, now walk around like that all day and try to learn language.”
Dr. T: “Right. And try to function. And this is why Johnny can hear you say “onny”, but then you say, ‘Go get me shoes and go get me your coat’ and why don’t they answer or why don’t they follow. I mean, there’s so many repercussions of that.”
LS: “And to your point about mild and moderate hearing losses, this is still someone who hears, who responds, who plays, who will come when you call them. But it’s that softer. The times when there’s six kids talking at once, the playground, zoom calls with seven people and their mics are on. That’s when the difficulty and the breakdowns come. And one of my favorite studies, I cite all the time about how kids who have mild hearing loss, might have worse outcomes because they’ll get less intervention. Because they might just fall through the cracks. They can hear, they’re fine, or there’s like stigma around hearing aids because they could hear. Whereas with a more severe hearing loss, you have to take that seriously. And you’re going to go and get all the interventions and then that kid actually has more support. So, we take very seriously mild is not mild. Unilateral is not just no big deal. Like these are real things that we want to address.”
Dr. T: “So, that’s kind of a good segway and to the other part of my story that I was gonna say. So, what you said is so, so true. Let me tell my story first. So, I finished school, and I started working in the educational audiology realm. About nine months after I started working, it was spring break, you know, my body was tired. My brain was frazzled. I got really sick. And I had a really high fever. We couldn’t figure out what was going on. My mom, who’s now a retired nursing administrator, this is very typical Philippino culture, go drink some orange juice, go take a nap, you’ll feel better. Even when I dislocated my knee, that was her prescription. Right? And so, she was worried. She said I needed to see a doctor. So, I knew it was pretty serious.
Anyway, we finally got the fever to go down. But then about a month later, I was co testing in a booth. So, I was on the booth side with the kid who was really, really squirrely, and then my coworker was on the side with audiometer. So, my job was to keep the kid on task. He would not put on headphones. So, we had to do everything through the speakers. And we were doing condition play audiometry. So, when you hear the beep, put the toy in the bucket. And so, my coworker was presenting the beeps, and the kid was listening. And then after a while, he kept putting the toy in and I’m like, ‘Wait, you gotta listen.’ He’s like, ‘Lady, I hear these beeps. What are you talking about?’
And I’m like, oh, that’s interesting, because I know that we kind of screen at about 15, 20 decibels. So, I knew that I should be able to hear that. So, I said to Beth, my coworker, I said, ‘Hey, Beth, will you test my hearing? Something’s not right’. And so, she tested my hearing. And lo and behold, I had this mild to moderate sensorineural hearing loss. It wasn’t conductive. It was sensorineural. We did temps, my temps looked fine. So, it wasn’t like any kind of ear infection.
Luckily, I was able to get an appointment in a local clinic to see a doctor. And so, that first test happened in the morning. So by that afternoon, I had an appointment with the ENT. So I went through the whole thing, the whole diagnostic process. We redid behavioral testing, same thing, mild to moderate hearing loss. We did OAEs (Otoacoustic Emissions) and we did ABRs (Auditory Brainstem Response). And then at the end of the appointment, the audiologist sat me down. And this is where it gets a little weird being on the other side. The audiologist was counseling me in the booth, and was kind of like behind me and and talking to me or whatever. And you know, we’re having this conversation and then the audiologist comes and says, after we talked about all of the results, the audiologist said, ‘Okay, we want you to come back in six weeks just so that we can recheck these results. And maybe next time you can concentrate more.’
That was my first reaction, like, concentrate more. And I’m like, what does that mean? And so, I’m walking out trying to process all of this. And I call my husband who was out of town at the time. And, then all of a sudden, I realized when the audiologist said, ‘concentrate more’, that meant functional, organic, faking.”
LS: “She thinks you’re faking it. Wait, you had all those objective tests as well. You said you had OAEs as well?”
Dr. T “The OAEs and the ABRs came out inconclusive, which does make sense. If you are right on the cusp of a moderate hearing loss, you’re not going to get definitive results.”
LS “Okay, but also one more question before you continue. Did you feel, before you were in that booth with that child, did you have any sense that your hearing had gone down, that you weren’t hearing the way you did normally?”
Dr. T: “It was only in retrospect, after my hearing loss progressed, and I was talking about it with my coworker, she was like, ‘You know what? You weren’t always replying to me when I called you from the other room. You have been asking for more repetition.”
LS: “Like since that fever incident, that you were sick?”
Dr. T: “Right, right. So, one of the good things about being an audiologist experiencing hearing loss, is you know who to send your chart to. So, at the time, we had no idea kind of what was going on. And so I did, I requested my chart, and I started sending it out to otologists, and neurotologists and people all over the country. That was when I leveraged my network. That’s when I leveraged my audiology network and thought about people that I had read about in my textbooks, but it also gave me my chart. So here’s what it said on the chart. The reason that they thought that they wanted me to come back and concentrate more was because the audiologist had written down, ‘Does not appear to have difficulty with communication’.”
LS: “Why would you if it was only mild to moderate? Okay.”
Dr. T: “Right. We’re in the booth. We’re also talking in the booth, which is quiet. And what was the topic? Audiology. I think I can have a conversation about audiology and not hear every single phoneme.”
LS: “You could be sleeping probably.”
Dr. T: “Right. And so, this audiologist had made this judgment and written down in my chart about that. So, that happened on a Thursday. Saturday, I got up in the morning, and I woke up and I realized my hearing had changed. So, I went back to my office. My coworker tested me and now instead of like this flat, mild, moderate hearing loss, I had this high frequency hearing loss. We did OAEs, and guess what, my OAEs were gone in the high pitches. So, then I went to another office that was open. And the doctor there said, ‘If you were my patient, I would have you on prednisone like that because it was a sudden sensorineural hearing loss’. And the doctor said, ‘But I can’t because you’re not my patient, and you’re not in this network, etc, etc…’
So, Monday, I went back to the other clinic, to go see the doctor who was on vacation or maybe at a conference or something, and would not be back for six weeks. And the other otologist would not touch me because of what was written in the chart. Anyway, my diagnosis ended up being auto immune inner ear disease, which for me was a quickly progressing hearing loss. So, I went from mild to moderate to completely profound in about nine months. So by November of that year, I was completely deaf. I had boom-in hearing aids, old analog boom-in hearing aids. And then eight months after that, I got my first cochlear implant. Fast forward, that was August of 2000. And then I got my second one in December of 2005.
To your point where you were talking about the kids with mild to moderate hearing loss not getting as much attention, so in this time of masks and difficulty listening, and because as soon as people hear my voice and hear me talk, they think that everything is okay. I had started pointing to my ear and going like this (pointing gesture), and guess what, people accommodate me. I don’t know if you saw that I wrote that blog post about shifting the communication burden. And it’s all about that.”
LS: “So you point to your ear, and you shake your head and you say, I don’t hear you. Hahaha. For our podcast listeners.”
Dr. T: “And so, when I point to my ear and shake my head and don’t talk, it really makes people realize, oh, maybe she doesn’t hear. And at that point, that’s when they start doing things like giving me thumbs up, thumbs down. I can see their eyebrows move, you know, they’re pointing at the cash register and pointing at the total, which is what they were saying behind their mask, which I was not hearing. And so, when when I do that instead of struggling to hear, it makes it easier on everybody, and less frustrating.”
LS: “And this is one of my favorite things to talk about is, that the goal is communication. The goal is not to hear better. I mean, in certain situations it is, but especially for young children, when the auditory oral model that’s so, so focused on having them hear. Why do you want that? So, you can communicate. So, if you can communicate some other way, maybe just do that, or a combination. Don’t forget the point, not just to be able to hear your six ling sounds, which are important, but that doesn’t bring you to communicating.”
Dr. T: “Yeah, that’s one of my favorites. I don’t even know who said this. ‘It’s not important how you communicate, just that you communicate.’ And that really hits home to me. And I feel like that’s very much my motto for a lot of things. You know, you talked about being an alien. I talk about being kind of being a first generation American. Taking that sign language class, who knew that it would lead to so many things for me. I taught that class when I was a grad student, my then boyfriend who saw my husband took it, we’ve been signing with each other for over 30 years. My children will sign. I can go for a week in my house, and still have helpful communication because my family can sign. And it allows me also to kind of be part of the deaf community, as well.
And I think that when it comes to things like identity, that’s something that’s very near and dear to my heart, too. Because, just like I talk about functional skills in the booth, like what helps a kid succeed and what testing can I do to find out what works for them? In terms of identity, I think it’s very functional too. Right now, I am, whatever, an audiologist. But if I open my door, I’ll probably run into one of my kids. And then I’m a mom. And then another time, I’m a presenter. And the sign for code switch is this: like you have a dial on your chest and you’re turning it and that’s what the sign for code switch is.
And so, I feel like the same thing happens with people when they’re asked if they’re deaf. Like Big D deaf, little d deaf, hard of hearing, hearing. For me, it’s a total code switching thing, depending on the situation. Like if I’m talking and your voice is pretty clear, I can understand you. And so, I’m functioning like a hearing person. But if I miss something, I’m going to look down on my captioning and then I’m functioning well like a hard of hearing person. I can also turn off my voice and sign in ASL and be part of that community as well. So, when I go to the deaf community park, that’s where I feel like an immigrant, because I was born in the hearing world. But then it’s like, I have like this passport with dual citizenship, where I can go back and forth.
And for the parents that are out there that worry about where are their kids gonna fit in? They’re gonna fit in where they fit in. When they’re with you, they are still your child. Maybe they’ll be struggling with communication and functioning more hard of hearing. When they go to school, they might have full access, maybe with their peers that sign or that cue or use whatever communication methodology that they use. But when they’re with you, you have your communication, you have your family culture, and you shouldn’t feel and I don’t think that kids really should feel like they need to pick one over the other.”
LS: “Hallelujah, I knew I would love this conversation. You have the option, and you have the capability to swim in each of those different environments.”
Dr. T: “You have the tools. That’s what I say. I just co-wrote a paper with, there were four of us. Three of us are deaf audiologists and one as an educator/audiologist, she’s hearing but fluent in sign. And it was for a digital journal in ASL. We had to sign the entire article to submit it to the journal. But it was about language deprivation. And having worked on that, and knowing the things that I know, and knowing that lack of language can impact a child for the rest of their lives on every level, really.
You know, it’s not just communication, it’s psychological, it’s socio-emotional, it’s all of those things. And, so like you said, it’s about communication and giving them the tools. For families that kind of are on the fence, it’s like, should I teach them signs? Should I only teach them to talk, etc, etc? The worst that can happen is that they’re bilingual, the worst.”
LS: “And also, I think, parents have this fear that there’s going to be an identity crisis, and they’re already setting their child up for this pain in the future, where every single teenager in the world has an identity crisis of culture, of language, of religion, of all that. That’s what being a teenager/young adult/human, of all ages, is. We’re always redefining our identity in all the different ways, the intersection, right all the different things that we are. Want to talk about gender, want to talk about sexuality? Let’s keep going.”
Dr. T: “Yeah, and here’s the sign for intersection, you’ll like that. So, this is a sign for code switching, the sign for intersectionality is this. So, it’s like a dial on your hand. And really, it’s like whatever world or whatever identity you’re gonna be in.”
LS: “Yeah, and you can’t decide today on your baby or toddler, what’s going to happen in 15 years, because think about what happened 15 years ago. Who knew this world would be the way it is with zoom, and texting and earbuds and all the other things. Life is going to change a lot.”
Dr. T: “Right. And that’s really hard for parents, especially since so many of them are also hearing. For the duck duck babies, we always hear that statistic, 90 to 95% of them come from hearing families. And I call it like, dropping knowledge. Like, I feel like what I do when I make these resources, and I have all of this information, it’s like, I dropped knowledge, but I want you to become informed. I try to make it as neutral as possible. We all have biases, right? We all have personal beliefs. A good friend of mine says, ‘We all have personal beliefs. But when we use that personal belief to try to influence someone else, that’s when it becomes a bias.’ And so, I think working in education has made me very aware of that. You need to be open to all the things because you don’t know the circumstances of so many families or whatever. And all you can do is be there to support them, and to be that expert and the information and help them navigate through that forest, if you will. That’s my philosophy for everything.”
LS: “Yes. And I think it’s a lot more helpful and more easily accepted than the approach which is, you are depriving your child of their birth right. Like, even if that’s the messaging, maybe behind that it’s like from a good place, it seems like you’re attacking. And I’ve seen so many of these conversations, unfortunately, in Facebook groups, where the comments are like, not teaching sign language is abusive. Okay. Maybe we could say that in a different way where it’s not a blamey, shamey situation.
Someone else might say, not doing a cochlear implant is depriving them of the current technology. And that might be abusive. I don’t know, like throwing around all these words, which are not conducive to the parent who is scared out of their mind, what do I do now, and approaching it from here’s knowledge, here’s options. Let’s help you figure out what’s right for you and your family. Taking off a little bit of that pressure.”
Dr. T: “Yeah. After working in education for a few years, circumstances changed, and I needed to find a different job. And I landed in industry, and I work for a cochlear implant manufacturer. And what that introduced me to was, first of all, industry, and understanding marketing and marketing spin.”
LS: “You were already implanted at that time?”
Dr. T: “I had one implant at the time. Then I joined the company, and I got my second implant. And so, what I learned was about things like online communities. And this was in 2005. Facebook wasn’t really up and going so much. I mean, even for me, when I was trying to decide my cochlear implant, like which company I was going to go with, I went to the Internet, and I was on different forums. And that’s how I talked to people. And I had a mentor, and all of that.
But for parents, so the whole point of this is like, I feel like it’s so important for parents to connect with other parents. And I’m a big believer in Parent to Parent support groups. I’ve been on national boards and local boards for things that support parents, and I think it’s so ultra important. Even though I’m deaf, even though I have an implant, even though I sign, even though I’m an audiologist, I have not ever had to make a decision of, ‘should I get my kid a cochlear implant or not?’ Or I have not had to decide what communication methodology that is going to impact my kid for the rest of their life.
You know, even though we did. We knew that we were always going to sign with our kids. But for these parents, where it’s a totally different reason why they have to make that decision, it’s hard, and I can empathize with that part of it. But there are parents out there that can’t or kids that have additional disabilities, or things like that.
And so I’m a huge, huge believer in that because the other thing too, is oftentimes, a lot of those parents in those networks also know how to navigate IFSPs (Individualized Family Service Plan), and IEPs (Individualized Education Program), and all the legal stuff and the medical stuff, and how do you juggle it? And what kind of binder do you use for all your paperwork? How do you keep organized? And I think that that has so much value, and it also helps support their socio, like their social emotional side, which is what they need. Some of these parents don’t need to hear any more medical or educational things. Some people just need to listen to another parent cry about how frustrated they are, or listen to this triumph that they had just experienced for the first time when their kid responded or said something.”
LS: “And I think back to you as an adult, educated, literally an audiologist, and still you experienced a very difficult thing in a medical interaction that you were belittled and not believed, let alone someone who’s just like, what is this world? Who are these people? What is happening? And unfortunately, there are so many difficult interactions and you can’t always advocate when you don’t even know the language. You don’t even know what words are happening here.
So, what are your thoughts on the kind of time crunch? I feel like one of the things I hear a lot from new, new moms like with week old babies are saying, we need to make a decision today. And I remind them that their first kind of surgery window is like eight, nine months plus. So, you’re going to have this baby’s first year-ish, three quarters of a year or a year where, how are you going to interact with your baby, whatever you decide later, yes or no, or later on, whatever. But what are your thoughts on this kind of first year? What can parents do while they’re making this decision?”
Dr. T: “So, that first year, that’s so interesting that you said that, because the other thing that I want to make sure that parents understand is that you have to figure out how to communicate with your child when they’re off the air. Because there are going to be times when equipment breaks down and needs to be sent in for repair, when batteries die, when they pick up their stuff because they’re at the pool, etc…
You start thinking, how are you going to communicate with your child? But talking very specifically about that first year, what I recommend to parents is to be a parent. How would you treat your child that has normal hearing, because newly that first year, they’re like this, right? You know, the babies are in their arms. Keep smiling at your kid, keep talking to them. They’re going to feel vibrations, maybe they’re going to tell by your facial expression how you’re feeling. Babies that are six weeks old, are not going to respond, you know, like a six year old, either. It’s all about facial expression and feeling things and picking up and being visual. You may want to be pointing at more things when you’re talking, helping the kid notice these things.
But for that first year, be a parent. Love your baby, keep them thriving and surviving, and then, worry about the other stuff. Keep thinking about how you’re going to communicate with them. Are you going to go the cochlear implant route or hearing aid route, depending on the level of hearing loss. I think it’s really important that this is something that is a decision that’s going to impact them for the rest of their life. And it’s lifelong learning. I mean, I hear things through my cochlear implant that I had never heard before. And someone has to tell me, oh, that was like the tornado siren, I’m like, Oh, the wind must be blowing a certain way today, and I can actually hear it in my house.
I’ve heard a tornado siren before, but not through my implant. And so someone had to teach me that. Be ready for doing that all the time. Just like we do for hearing kids. That’s a dog, it’s not a cow. That’s a cat, it’s not a lion. Even though they have four legs, even though they’re all furry, that kind of thing. Be a parent and have grace on yourself. It’s a tough, tough decision.
I think parents are often second guessing themselves. And especially when it comes to communication methodology, no matter what you read, you will always get two sides of the story. When it comes to deaf education, this is a war, if you will, or a battle that’s been happening for hundreds of years. And I really don’t see it stopping. Because you’re gonna have your militant camps on both sides, always. I really don’t see that going away.
And so, do what works for your family. But also think about the fact that when you choose something, stick with it for as long as you can. And when you feel like you’ve hit a wall, and you’re not getting anywhere, or you’re actually seeing progress get worse, think about Plan B. It’s okay to take a detour. It’s okay to change tactics. You can’t get that time back. If you keep pushing and pushing and pushing for a whole year and your kid is not making any progress, that’s a year lost.
So you talk about a window. And when we talk about that language window, from birth to age five, you can’t get that time back. And that’s the most critical time, but it’s also the most stressful time for parents. And so, the other thing that I would recommend to parents, I was talking about bias earlier, is to talk to people that have different opinions. Get that second, third, fourth opinion, because people are very passionate about what they believe. And I think it’s okay to talk to someone that believes very strongly in one thing, but don’t forget to listen to another viewpoint or another opinion about someone that has a different viewpoint, but is as passionate as that other person.”
LS: “Exactly right. I think it’s so powerful for parents to know that they are not alone, there’s so much support, both from their peers and from professionals. And at the same time, also really trust themselves. And that is like, everyone’s journey in life, is trying to navigate that in all challenges they’re coming to and it’s like, this is the one you’re gonna go through in this family, and you don’t have to do it alone. But you do come to find that as parents, as the kids get older, and they move towards the school age, and then middle school, then high school, the child will also start to have their own input. And then there’s a conversation there.
So, for the first stage, it’s a lot on the parent. And then in the kind of middle stage, there’s more drama, and more characters involved. And then when they become adults, we hear this a lot from adults who say, ‘You gave me 20 years of auditory verbal therapy and speech therapy and devices and you know what, I’m done. I’m going over here, this is much easier for me to communicate with my deaf friends in ASL.’ College and then say, this is where I belonged all along, and maybe have criticism of that direction. Someone else might do the exact opposite and only as an adult say, ‘These devices are incredible, how come it took my parents 15 years to get this?’ So, you don’t know what your kid is gonna want.”
Dr. T: “Yeah. And, I’ve had conversations with that with deaf adults and I’m always like, you are parents. As a parent, I have one who’s an adult and one who’s a teenager. We do the best we can with the information that we have at that time. It’s not our intention to do you wrong. We’re doing the best with the information that we have. And so, that can be hard though, as a parent who’s already second guessing themselves, when they have like their adult children come back and say you did all this damage to me. They tried, right?”
LS: “And again, at the same time, giving that child agency with boundaries, because if your baby is pulling out their hearing aid 45 times a day, you’re not going to say, well, they made their decision. That’s a baby and you’re gonna put that in 45 times. And then the next day 44, and the next day 42. Hahaha.”
Dr. T: “Or you would be like, why are they pulling it out? Does that hurt? Is it too loud? Is it too soft? I mean, there’s all, there’s all different things that that we can look at. But I agree. And yes, children are still children. And there are times when we still have to be the parent and be like, you are going to go to therapy for this reason. So, parents also need other parents, too. I think that’s really, really important.”
LS: “And so, I have a question about your experience with being a hearing person and then losing your hearing, then hearing through your implants. Can you share about that, because you have first hand experience on how it’s different to hear through the implants?”
Dr. T: “So, when people ask me what I hear, I tell them that it’s my new normal. And I am a big believer that we hear with our brain, and auditory memory, and other factors like etiology of hearing loss, like what caused the hearing loss, and all that have a huge impact. Autoimmune inner ear disease, luckily, I didn’t have any other kind of really bad symptoms. I wasn’t affected overall health wise or anything like that. I was just deaf. It happened rather quickly, I got implanted rather quickly. So, I had a really good chance. And I am, I know, a rock star with my cochlear implants. There are things that I can do that I know that other implant people can’t do.
And that’s the other thing that I want parents to understand is that if you look at me, and you say, What does your audiogram look like? My audiogram is probably going to look exactly like your child’s audiogram with their cochlear implant in terms of where I respond at 500, 1000, 2000, and 4000 hertz. But all that does is it tells you where I can hear. It doesn’t tell you what I do with that information up here (pointing to the brain). And so, I can use my auditory memory, I can use my knowledge to fill in the gaps for closure. And I can function well.
But for the kids that don’t know what they don’t know, like when parents say, ‘Well, what if they hear robotic voices when they turn them on?’ My answer is, ‘They don’t know what a robot sounds like.’ What I hear now is what I remember. My mom still sounds like my mom. My husband still sounds like my husband.”
LS: “Music?”
Dr. T: “Music is hard. I have to take a drink in my awesome mug.”
LS: “For our podcast listeners, Tina has a mug that says, you’re on mute, which is hilarious.”
Dr. T: “So, I’m still learning sounds every day. But hearing people do the same thing. There are sounds that they’ve never heard before. For example, like your cell phone, think of how many times you’ve gotten a new cell phone, and it has a new ring, and your phone rings. And you’re like, Oh, that’s my phone. That’s why everyone’s looking at me and I’m not answering it. But once you learn that that’s your cell phone ring and it’s like seared into your brain, your phone could be in your purse all the way across the house, but you hear that tiny little song and you’d be like, Oh, that’s my phone. That’s what it’s like when we hear.
And for the parents that have kids that are newly implanted, just keep talking to them. Keep giving them information to process and give them all of that. Let the implant and let their brain do the work but you still got to give them input, meaningful input. Don’t just sit them in front of the TV. Have conversations, let them feel things, let things be multimodal.
Expose your kids to music. I think one of the reasons that I’ve been really successful also with my implants is that I grew up very, very musical. I played multiple instruments from age four through college and so that’s just a part of the way my brain works. I played classical piano so I can read lots of little tiny black notes in both treble clef and bass clef at the same time. So, my brain can do that. And so, I think that makes a big difference too. I did, but that’s just me.
But that’s what I’m saying. Like, parents will be like, ‘Oh, look at little Julie and Johnny’s class. They both have cochlear implants. Why is Julie doing so much better than my Johnny?’ Work on Johnny. Work on seeing his progress compared to him before you compare him to Julie. There’s so many factors that can be very different.”
LS: “Yeah. Like the etiology that you mentioned. The reason for the hearing loss.”
Dr. T: “Age of onset.”
LS: “Yeah, do they have an auditory nerve? Is the auditory nerve itself also thinner and not functioning as typical? I had some cases of some incredible children who had very significant birth, I don’t know, trauma I guess, birth trauma, or exposure to certain things in the womb, ototoxicity, all these different things, that is going to affect their entire global neurological development. And then you put an implant there, versus, a child who is “just deaf” because it didn’t have the right gene to make them hair cells, totally different kind of deafness. So yeah, I think that’s an important point.”
Dr. T: “I think it’s also important too that, as soon as you can, that parents really figure out what the kid can and cannot hear. Because especially if you’re going the auditory verbal route, or you’re expecting the child to be able to speak, it’s really hard to produce the sound that you cannot hear. And so, depending on the kids hearing loss and the amplification that they’re using, if there are sounds that the kid can’t hear, the parents need to know, and have this expectation that it’s going to take longer, maybe for that kid to produce a good “S” sound, or a good “T” sound or a good “K” sound, because they may just not hear it. And so, we as professionals, we need to do our jobs, to amplify them to the best of their hearing potential. But also to keep in constant contact with the parents to let them know what the kid can and cannot hear.”
LS: “And make that into words that makes sense that are not just X’s and O’s, not even.
We could talk all day. This is so much fun. I’m so glad to meet you and hear your story and all the incredible expertise and advice that you have shared with us. Can you talk a little bit about your resources? And then we will wrap up this episode, although I do hope you’ll come on again for another, another round of good ideas.”
Dr. T: “I would love to. So, let’s see. When did this all start? I think my first list was probably my apps list. And that came about in 2011. Do you guys realize that the iPad has only been around since like 2010. That kind of blows my mind a little bit. And so, I started making a list of apps that I thought would be good for people that are deaf or hard of hearing. At first I said it would be for kids and I’m like, wait a minute, this could be good for adults too. And so that list happened. And then subsequently, I’ve made other lists. Most recently, I’ve been making resources about ASR (Automatic Speech Recognition) captions and things like that that you can use on your phone or on the computer. Different ways to have accessibility on video conferencing, things like zoom or Google meet or Microsoft Teams.
Let’s just say I had so many lists that I had to make a list of my lists. And so, the link that I will share with Dr. Saperstein is that link and there you will see all the different resources that I have. Not only do I have these kind of spreadsheet lists, I do have a blog where I’m a little bit more narrative, and I have more kind of like random thoughts and experiences and stories that I tell. I also have a social bookmarking site. I don’t know why I have this need to kind of like hoard information and then like categorize them and then share them.”
LS: “It’s so incredibly generous of you to share your list with the world.
All right, Dr. Tina Childress thank you so much for coming on the All About Audiology podcast. All of those resources and full transcript of today’s conversation will also be at allaboutaudiology.com. And if people want to come and find you, Facebook, LinkedIn, where do you hang out? Instagram?”
Dr. T: “I mainly hang out on Facebook. I think if I did a lot of other social media kind of outlets, my brain would explode. And so, I’m almost exclusively on Facebook, though, I’ve been sharing a little bit more on LinkedIn. I have not like psychologically been able to make the jump to Instagram or Twitter.”
LS: “That’s probably wise, honestly.”
Dr. T: “Yeah, there’s just a lot. I mean, I feel like I’m doing so much research part of it that if I kept reading all of the things that I could keep reading, which never ends, I would never get anything done. So, I’m content with keeping with Facebook where I don’t have character limits, and I don’t have to hashtag everything and I can post videos and articles. I think I’ll stay here for a while until, I don’t know, something happens. But yeah, that’s where I mainly am. But I will share all of that information with you also.”
LS: “Excellent. Very good.”
And I want to invite all of the listeners of the All About Audiology podcast to leave a review and a five stars please, if you think we got it over on iTunes. And come hang out with me. I do hang out on Instagram way too much. That’s where you could find me @allaboutaudiologypodcast.
Thank you so much for being a listener. I’m Dr. Lilach Saperstein and this is the All About Audiology podcast.
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