Soledad O’Brien on Raising a Child with Hearing Loss

Episode Transcript

Dr. Correa:
Saludos and welcome back to the Brain & Life Podcast from the American Academy of Neurology. So Audrey, how's this week going for you?

Dr. Nath:
Hey, Daniel, great to hear from you. I got to speak with Soledad O'Brien, the anchor from CNN, and we talked about her son and about hearing and language. And I have a question for you. Do you know what your first word was and when it was?

Dr. Correa:
If I recall, I think my mom and dad said it was dada. I don't remember what age really, I started speaking, but yeah, it just started with Spanish and Spanish was all around me at that time.

Dr. Nath:
Well, so speaking with Soledad O'Brien, her son Jackson had a much rougher go at language acquisition and that sort of thing. So essentially, you probably started speaking around when you were one years old, he wasn't speaking, and furthermore, he had some really distressing behavioral issues that they just couldn't figure out what was going on. And they were really worried, "Why is this kid banging his head against a wall? And we got to put him in a helmet to protect him." And as it turned out, he had a sensory neural hearing loss, and he actually has a gene, a genetic cause for this hearing loss. And so we talk all about how he got diagnosed and how he's doing now. I think he's going to college and we speak with an expert about how to diagnose developmental issues and behavioral issues in young children who can't tell you what's going on.

Dr. Correa:
Can't imagine the challenges for so many parents when a child is having a difficulty and like you said, they can't communicate to you. You have no understanding or sense of what they need or what they want. I mean, it's such a challenge, and glad to know that there are therapists and behavior neurologists out there helping them.

Dr. Nath:
They're absolute magicians, I think.

Dr. Correa:
Well, I think this is a really key episode for parents and family members of everyone that's developing.

Dr. Nath:
Today on the Brain & Life Podcast, we are joined by a veteran journalist, Soledad O'Brien, who many of us know from her work with CNN as an anchor. She now runs Soledad O'Brien Productions which is dedicated to telling stories to bring light social issues. And she currently anchors and produces Matter of Fact with Soledad O'Brien. So she's been an absolute trailblazer, and she's used her expertise and platform recently to bring attention to underreported stories of young Black women who are missing in her HBO series, Black and Missing, which I think is incredible. But today we're going to be talking about a more personal story from Soledad O'Brien - about the challenges and curve balls in navigating sensory neural hearing loss in her own child, Jackson. Thank you, Soledad O'Brien for joining us to speak about childhood hearing loss, and welcome to the podcast.

Soledad O'Brien:
Thank you. Thank you.

Dr. Nath:
To start off, for any of the listeners who don't know the story with your son Jackson, he was eventually diagnosed with a form of hearing loss, but from what I've read, this was not really obvious at first. So when was the first sign you saw something? Yeah, what was up in the beginning?

Soledad O'Brien:
He was a toddler, so maybe a year and a half. And he would have rolling meltdowns, I mean, no exaggeration, 20 in a day. Just you know how your kid can have a little meltdown over, they didn't get a thing or they didn't get a cookie or they dropped something and they dropped a sock. But just constantly he'd roll out of one into another, and it was a lot. He has a twin. And so with both boys, obviously were about 18 months old, but he also had an open wound on his head because he used to sit at a door and just slam his head into a door to the point where one doctor we saw said he thought he should get a helmet, which I think the wound wasn't so bad. It was just an open, it wasn't horrific. But yeah, I didn't think the helmet solved the problem.
We were trying to figure out what is going on in this kid's head. We knew he could hear us because you could shout at him and make him stop if you shouted. But you could say, "Stop doing that." And he would stop. But we couldn't figure out what was going on. And so when he was in probably the threes I think, or the fours in pre-K, we really realized that that was just something going on. And it wasn't until he was in first grade, he was about seven where his teacher gave an assignment. The assignment was something write about something that happened last night for the first days. And he wrote about aliens coming down from outer space. And the teacher, well, so one, everybody laughed, obviously, which is the worst thing when you're seven, and-

Dr. Nath:
I mean, I think it's really creative and cool. But yes, I could see that.

Soledad O'Brien:
And the teacher said, "You should get his hearing checked. I'm not sure he's hearing what I'm saying." It was only the first day of school. So we took him to get a hearing check and he came back. It was a disaster. I mean, his hearing was off the charts, terrible which was an incredible relief though because we had so many questions, we just couldn't figure out what was going on. And he was healthy in every other single way. And so in a lot of ways, I think we felt like, "Well, that's bad news, but, okay, now we at least can head a direction and we know what experts we need to start talking to and we know kind of the category we're in." And so I actually found it just to be a tremendous relief.

Dr. Nath:
I could see it being validating to have a cause, especially a cause that you can do something about. And I think this is super important because hearing loss can often go unrecognized in children. Sometimes it's assumed that maybe there's a psychiatric issue or a behavioral issue or an intellectual disability even that there's been children placed in special education classes who have-

Soledad O'Brien:
I completely understand all of that. All of that.

Dr. Nath:
Yeah. It's-

Soledad O'Brien:
We were trying to figure it out. And if someone had said, "Yes, it could be that." I would've been like, "Okay, let's go down that direction."

Dr. Nath:
You would've been on it. Yeah, exactly.

Soledad O'Brien:
A 100 percent. So yeah, no, it was I'm not surprised. I think in a way, our path was pretty straightforward, right? The teacher suggested a thing, it made sense. We took him to a hearing doctor and his hearing was so bad. I used to ask him as he was older, "So what do you hear when you don't have your hearing aids in?" And he would say, It just sounds like.

Dr. Nath:
Oh my goodness. But a two-year-old can't verbalize that.

Soledad O'Brien:
And there's one of his doctors said he put so much work into trying to manage it that by the end of the day he just can't take it anymore. He just kind of pulls off. So it just started to make a lot of sense. And so it was a tremendous relief when he was diagnosed.

Dr. Nath:
So all those compensatory mechanisms eventually break down in a little kid. I could see that. And if you don't know what they're struggling with, then just seems like a black box, right? I'm curious, do you think his twin had some inkling, or did they compensate with each other's communication in some way, I'm just curious.

Soledad O'Brien:
No, not at all. Although Charlie was very helpful at calming Jackson down. So the threes and fours teachers would say that when Jackson would have a meltdown, Charlie would go over to him and hug him and say, "It's okay. Jackson. It's okay." So I think he knew that his brother was really struggling, but and he was so little, I don't think he had any idea. By the time they got into kindergarten, they separate them. They tend to keep everybody separate and very intentionally. So often twins as well just kind of belong together for everything. And so I think they try to give them their own identities and lives, and so they didn't spend as much time together in the classroom.

Dr. Nath:
Interesting that you say that he kind of instinctively used a tactile what means of comforting his brother like instinctively. And that's really interesting. So he might not have known outright, but he kind of knew what worked in a sense in the way that kids figure these things out. So he had his auditory testing, and from what you've said, it was off the charts, not normal.

Soledad O'Brien:
We had a level that was bad, which then was like, "Okay, that makes sense." And we were able to bring him into an audiologist and start getting his hearing really tested to see what kind of hearing aid he would need. And even then, he was pretty much at the end, I mean to this day he and hearing aids as get better and better every single year. I mean dramatically. But he's kind of at the end of what's available. He's at the far end of the very best thing that you can get, which has been working fine after a few years. When he was 12, his hearing was still dropping. Every year we'd go back for a test it would drop again. But around 12 or 13 it started stabilizing. And so it really hasn't. So it's bad, but it hasn't really moved. And so it's been the same. He was worked up for a cochlear implant, but I don't think he has any intention of getting a cochlear implant partly because he plays a lot of lacrosse and obviously-

Dr. Nath:
Oh, gosh. Okay. There could be some injury to that region.

Soledad O'Brien:
Right.

Dr. Nath:
Yeah. Okay. Might not be good to be bionic in that way then, I suppose.

Soledad O'Brien:
Exactly right. Also, I think he's managing it just fine, but I think he's open to trying to figure it out. And it's interesting, he was really fortunate in that if you met him, you wouldn't know he had any hearing issues.

Dr. Nath:
Does he lip-read really well?

Soledad O'Brien:
He lip-reads a lot. And his speech is great. And I think a lot of kids with hearing issues learn how to fake it. I've talked to a couple of kids who they pick the person who they're going to watch to see if they're laughing, then they laugh. Are they leaving now? Then they're going to leave. And Jackson became very good at not really knowing people were talking about, but being able to kind of navigate social situations. I know the way to behave in this social situation. I mean, it was an interesting thing because what we realized was that what he was really missing was social cues. It wasn't just hearing loss. I mean, I learned a lot about it over time. You can't hear what someone's saying to you, but you also can't, when people talk about I could feel the room change or I could feel the vibe, he would lose all of that.
He couldn't. If you are a kid and you're playing connect four on the floor, the kid across from you is losing, right? So now they're oh, right? They're doing that. And they're clamming their things down. There's all these little cues that are telling you, "Oh, they're mad." So when they get up and leave and walk away, you're not surprised because the last four minutes they've been sending you all these nonverbal cues about how they're feeling. Well, if you are very hard of hearing, you just can't hear them. You just go to those and so he would often be very stunned when someone would just get up and walk away, even though everyone could've told you, "Yeah, they've been unhappy for a minute." Or-

Dr. Nath:
These are the things we take for granted, right?

Soledad O'Brien:
Right. And then I think helping the school navigate, we had a great aide, great aide. And helping the school navigate. I think a lot of times people think what they're doing to help a kid who needs some kind of services is actually good for a lot of other kids too instead of just yelling out assignment as kids leave the room, "Don't forget chapter two, three, and four." It's much like, why not just write it down because it's not just one kid that's going to get it. There's a bunch of kids who won't get it. And so we had to kind of have a bit of a come to Jesus around, there are ways to help all the kids. This is not some tremendous burden. There's a lot of ways to help prep kids who are hard of hearing, obviously, but also kids who just need more prep.

Dr. Nath:
Oh, absolutely. And the multisensory presentation just makes sense. I mean, I think.

Soledad O'Brien:
Correct, correct.

Dr. Nath:
So did you find it that it was very difficult to get services at schools? A lot of our patients' families tell us things like that, that there's delays and it's difficult. Did you encounter that?

Soledad O'Brien:
No, I didn't encounter it. We hired an aide who was great, so that helped us a lot. So she helped us navigate very well. I think the Department of Education in New York and getting an IEP was it was just one of the most awful meetings I've ever been in. And very awful. Just awful, awful, awful because their philosophy seems to be like, "So what we'll do is let the kid fail and then when he starts failing, then we'll put in services." For us, I think because we could afford services, we needed them to do an IEP, which couple of years they just forgot to do it kind of thing which you could just, they're just a mess.

Dr. Nath:
Oh, gosh.

Soledad O'Brien:
Yeah. So we had the resources to be able to say, "Well, if I need an occupational therapist, I'll just get one. If I need this, we can just hire. I mean, it's expensive. We'll just hire that out because our kid needs it."

Dr. Nath:
I'm really glad you bring that up. The socioeconomics of this all as well, especially with families who might not have English as their primary language that there's additional hurdles.

Soledad O'Brien:
I could take off the afternoon right I do anchored a morning show. So his experience was resolved, I tweeted, "I just had the most miserable experience at the New York City Department of Education" and I got a lot of phone calls right away.

Dr. Nath:
Sure. Good for you.

Soledad O'Brien:
Right. Which is insane. Isn't that a ridiculous-

Dr. Nath:
But do you even had to do that?

Soledad O'Brien:
But imagine if you don't have a zillion Twitter followers or you don't have the ability to do that, or you have one hour in the afternoon to get it done, and they want to send you on a wild goose chase and hope that you're, I didn't even know the rules very well because I wish that I'd been a lawyer about it because a lot of the things that they were saying were just not even accurate. It was literally I was crying in the meeting. It was the most miserable experience ever. It really made me feel for people who don't have the time and don't have the money, don't have the energy, and don't have the ability to navigate around.

Dr. Nath:
There's families that describe it being a part-time job essentially that yeah, absolutely.

Soledad O'Brien:
Right. Oh, and maybe not even part-time. Absolutely.

Dr. Nath:
Exactly. So he had his auditory testing, which found the sensory of neural hearing loss, and just to explain a little bit, we say sensory neural hearing loss to refer to the nerve that connects the cochlea to the brain and that pathway as opposed to conductive hearing loss, which could be more external or involving the tiny little ossicle bones that have to hit each other in order for you to hear. Hearing is magical. And so based on that, then genetic testing was done and he was found to carry a gene for sensory neural hearing loss. So he's now navigated as we were talking about before this, he's now a teenager. He's almost 18. And so he's navigated his middle school years and his high school years. Especially for our listeners listening who might have a little kid who is just diagnosed with century neural hearing loss just to kind of know what's up ahead, if you're okay sharing this, did Jackson deal with much bullying, or was that a big issue for you guys?

Soledad O'Brien:
It was not an issue. He went to a school and I think part of it was his age where we brought in his molds for his hearing aids and everyone passed them around and they were like, "Oh, this is cool." So I think the fact that we were able to do that at such a young age was very helpful. But he's been asked a couple of times and he's done it where he's talked to parents whose kids have just been diagnosed with hearing issues.

Dr. Nath:
That's great.

Soledad O'Brien:
So I would just say anybody who would like him to hop on a Zoom and chat with their kid or chat with the parents, he would love to do it. He would I think it would be-

Dr. Nath:
Oh my goodness.

Soledad O'Brien:
Yeah. No. So you for should absolutely feel free to offer him up. It's a little easier in the summer before school starts.

Dr. Nath:
I would like to hear from you, for anyone out there listening who may have a child or an older child who's recently diagnosed with hearing loss. Is there anything you'd like to tell them that maybe you wish you had heard?

Soledad O'Brien:
I think I would say there's so many things that you've just never thought of. And so get into a group and get people to give you advice. And everybody's willing to give advice. In school, they will run videos, right? Especially for middle schoolers. Here's a video of this. And I would say, "Well, maybe just send them an advance." But not just to my kid.

Dr. Nath:
Yeah. Everybody could get. Right.

Soledad O'Brien:
And so when you begin to realize, so advocacy for your child didn't have to be, "Oh, I'm going to sit here and yell." It could be, "This would really help a lot of people."

Dr. Nath:
It's really interesting how you talk about advocacy on what seems like a small level, right? One classroom and one school and asking for just a very small accommodation that can help other people. But it's really, I think, reinforces that advocacy happens at every level. It happens at the one teacher in one class all the way up to legislation and shining light on bigger issues.

Soledad O'Brien:
But a lot of advocacy is just good ideas that somebody else brings up.

Dr. Nath:
We're talking about your boys and that you do work with your foundation, PowHERful. I'm trying to pronounce that which helps young women with resources to be successful in education and personal endeavors. It's just such an interesting juxtaposition that we're talking about your boys and that you do work with these young women.

Soledad O'Brien:
It makes sense because I really felt like I knew what young women needed in college. When we started PowHERful, we had little kids. And so I'm not sure I could have told you like, "Oh, the best way to help a boy or young boy. And we do. We have young men that we are helping financially send them through college, but for our foundation, it's really girls. And I think it's because we sort of, I feel like I understood what some of these young women needed to navigate.

Dr. Nath:
I'm also curious about The Rebellious Life of Mrs. Rosa Parks. Can you tell us about this film?

Soledad O'Brien:
When I was approached by the two women who are our directors, I was very surprised that there had never been a full-length doc done on Rosa Parks. I actually thought I was like, I don't think that's right. But it's true. And so-

Dr. Nath:
Oh, wow. I would've assumed so too.

Soledad O'Brien:
Right. So really, it was very interesting to us that the story of Rosa Parks has always been framed as a little old lady who was tired. And she was quoted saying that but she was really, she said she was just tired of being treated badly. She wasn't just tired. It wasn't like, "It's been a long day. I've had a long day. It's been a long week." I'm tired. It was, "I'm just tired of this shit basically."

Dr. Nath:
Yep. A lifetime of oppression. Yeah, that'll tire you out.

Soledad O'Brien:
Exactly. And so her actual life's work was very much around civil rights and social justice in very hardcore ways. So we really wanted to share the actual story of Rosa Parks and not kind of the cleaned-up version of the seamstress who one day was just tired and decided she was going to move. It's just a very different, I think it's a setting the record straight a little bit.

Dr. Nath:
Oh, wonderful. When can we see it?

Soledad O'Brien:
It premiered at Tribeca the other day and it's going released on Peacock, the NBC streaming service soon, I think maybe next month.

Dr. Nath:
Oh, exciting. Well, thank you for doing that.

Soledad O'Brien:
Oh, my goodness. Thank you. It's great. It's really great.

Dr. Nath:
Well, tell us, for anyone interested in keeping up with your work or hearing more about your foundation work, how would you recommend people find you on social media or online?

Soledad O'Brien:
Yeah, I would say I do a lot. I'm on Twitter and Instagram a lot. So I would say, and I'm just @SoledadOBrien, so super easy to find. So I hope anybody who wants to keep up with all that I'm doing every so often I post dog pictures, or horse pictures, or kid pictures, or something else along with all that we're covering, just follow me on social media.

Dr. Nath:
Incredible. Thank you so much for joining us today here at Brain & Life.

Soledad O'Brien:
Thank you. Thank you for having me.

Dr. Nath:
Want to learn more about the conditions discussed in this episode and other factors that could impact your brain health, for the latest on causes, symptoms, diagnosis, treatment, and management of more than 250 of some of the most common and rare neurologic conditions, please visit brainandlife.org/disorders. To learn more about hearing loss in children and evaluating children with behavioral issues who may or may not have hearing loss, I caught up with April Levin MD, who is a board-certified pediatric neurologist and behavioral neurologist. She's an attending neurologist at Boston Children's Hospital, the pediatric teaching hospital associated with Harvard Medical School. And in addition to all of that, she also works on the other side of the world with the Bucharest Early Intervention Project, studying the effects of institutionalization on child development which I think is super interesting. Welcome to the podcast April Levin.

Dr. Levin:
Thank you, Audrey. It's great to be here.

Dr. Nath:
So talk to me about when you are evaluating a child, that might be like what happened with Soledad O'Brien when her son, Jackson, was just a toddler and having really big mood swings and behavioral outbursts and he was hitting his head against the wall and injuring himself and really scary stuff when you see a patient like this in your clinic, where do you start?

Dr. Levin:
That's a great question. So I think one of the first things that we're always looking for is the why. Why is this child acting this way? Kids don't want to bang their heads against the wall. When they're doing that it's a way of communicating usually that something else is going on. And there's a whole spectrum of things that could be causing this. One of the big things that often comes up is challenges with sensory processing. So that could be hearing problems. We've seen kids with vision problems who have these types of behaviors or just differences in the way that their sensory information comes in that right now we don't have a good name for. So difficulty processing touch or other sensations in the environment all can lead to these kinds of behaviors. And it's our job to figure out why these things are happening so that we can figure out how to make kids feel better and ultimately solve the behavioral problems.

Dr. Nath:
Absolutely. I mean, from the outside it seems like a magical black box and almost like a veterinary science to take a child that's having these big outburst and come up with a differential diagnosis and then an evaluation and then hopefully some sort of treatment or behavioral modification therapy. You start with a detailed history from the family and you generally may even talk to multiple family members, right?

Dr. Levin:
Yeah. So very often it's helpful, parents know their kids best, right? So often we can get much of the information that we need from the parents themselves. But there sometimes are other things that come up that may not be obvious even to the most careful observer. So, for example, one of the things that we look for and the reason we want to see kids in person and do a good physical exam is to figure out is there something that might be causing them pain, for example, that could be leading to these behaviors. I've seen lots of kids in clinic who have a lot of behavioral dysregulation when they get constipated. It's such a simple thing, but if you think about it, it's really uncomfortable, right? And in kids who don't have the language or the skillset yet to say, "Hey, this is a problem and I need it solved." Their next best option sometimes is to act in ways that let the people around them know that they're in distress.

Dr. Nath:
Absolutely. And so then sometimes we'll see these behaviors and not know what they mean and they can happen at home and they can happen at school. Do you speak with teachers as well?

Dr. Levin:
Absolutely. Yeah. So one of the first things we do in our clinic anytime we're going to see a patient is we have the parents fill out an initial form. We have the teacher fill out some initial information about the child. We collect all of the records from any prior testing that they've had, that sort of thing so that we're really starting with all of the information that we have. And then absolutely. So afterwards, we can always call, I very often will give the teacher a call or will give another of a child's doctors or therapist a call to say, "Hey, what do you think is going on?" Because I think behavioral challenges are complex and we need all of the information to be able to figure out what's the next best step.

Dr. Nath:
So it's a bunch of detective sleuthing which is very interesting. It's fascinating. And so if with all of this information in your exam you're suspecting, huh, I think this kid might not be able to hear, for one, what makes you suspect that? And then two, what's the next step?

Dr. Levin:
So one of the biggest things that make us suspect that is difficulties with language, and that includes both speaking and also understanding, right? And it's particularly important for a child who has always had difficulties with hearing, all aspects of language might come on board more slowly but for a child who's having some hearing loss, they may continue to use expressive language, so speaking fairly normally. And it can be easy to miss then that a child is actually having difficulty with being able to hear what other people are saying. And so we can do some really simple things in the neurology clinic when we first see kids, calling their name or making noises and seeing how they respond. But then if there's any inkling that something is going on, one of the first things we do is send them to an audiologist for a formal hearing evaluation because the audiologists are, I mean, this is their area of expertise. My job as a behavioral neurologist is to figure out what might be going on and then bring in the experts who can take that to the next step.

Dr. Nath:
Absolutely. And I've had patients say this where families say, "Oh, I think he can hear." When, okay, maybe there's a family history of hearing loss and they're having some language delay. And what I explain is there may be frequencies that they're not getting. And this is not something that just a casual observer can just notice. They have to actually test out all these frequencies in both ears. So absolutely. We need our audiologist colleagues to help us with this.

Dr. Levin:
Very much so.

Dr. Nath:
So when you get the results back, and if it turns out there is hearing loss, I just wanted to go over this for our listeners. Again, we talked about it briefly with Soledad O'Brien, but there's different types of hearing loss and these are terms that families may hear, conductive hearing loss and sensory neural hearing loss. How do you explain the difference?

Dr. Levin:
Yeah. So again, I defer to the audiologist because this is really their expertise. But I think where there are lots of steps in terms of how a sound out in the environment gets into our brains, right? So first, there's the ear itself. So how does the ear take these vibrations in the environment essentially and convert them into something that the brain can see, right? So you have to convert those vibrations into neural signals. And then there are all these steps along the way that sound has to come in through the brain, through the ear, go up the brain stem and into the cortex, into the rest of the brain which is where we make sense of those sounds, right? Otherwise, it would just sound like a bunch of muffled sounds like you hear in the pulse. So that's the other piece of that is there all of those steps of not only being able to hear sounds but make sense of sounds and figure out which parts of the noise in the environment do I need to turn up and which parts do I need to tune out.
And so, one of the examples I often give is, well let's say you're sitting in a really loud restaurant and somebody is whispering at the table next to you and you think they're talking about you, right? Your brain, even though that whisper is very quiet, your brain is able to tune down all of the rest of the sounds in the restaurant and turn up that whispering so you can figure out what they're saying. At the same time, if you're sitting in a quiet environment reading a book and the refrigerator is humming in the background, that's not really important, even if it's loud. And so your brain should turn that down, right? If that doesn't happen in the correct way, that doesn't necessarily have to be a problem with the ear. It could be a problem with the neurons themselves and how they're, we call it gain control, how much you turn up the sound or turn down. It's like the volume switch.

Dr. Nath:
I'm really glad you went over that because yes, it is a whole pathway. It seems so simple. We take it for granted those of us who don't have hearing issues. But to take that sound and get into your brain and interpret it as language is a whole bunch of steps. But you're right. So it can be in the ear all the way to the nerve that leads in and even just the brain itself or interpretation. And I think it's a really interesting point that sometimes kids can be able to hear but not be able to tune out the rest. So they may actually be able to hear all the frequencies but then have difficulty with the interpretation and maybe not be able to turn down the rest of it which is kind of not the problem that people are thinking about when they think that their kid "can't hear" so I'm really glad you brought that up. Because that would be distracting if you could never turn down in your mind, in your brain that beeping fridge or the car honking outsider or whatever it is.

Dr. Levin:
Yeah, distracting and really overwhelming. It just feels like the world is sort of coming at you all the time and it's hard to filter that out. So yeah, there's a lot of pieces there.

Dr. Nath:
And sometimes repeatedly. It's so many and it's so many different spots that do different things but we see kids that are dealing with that sometimes they'll cover their ears or they'll flap their hands by their ears and you can tell it's distress, that can't be fun. And sometimes that's one way they can communicate it.

Dr. Levin:
Yeah. Well, and it's tricky too because I've also had patients who cover their ears not because the sound seems to be bothering them but because they like the sensation of the pressure on their ears, right? So that's another piece of this is we have to figure out, "Well how much of this is a hearing problem versus something else that might be going on?" There are a lot of moving pieces in this puzzle.

Dr. Nath:
Y'all are magicians. That is so many things to think about every single clinic visit that you have, every new patient is a puzzle because they're not necessarily telling you what the problem is with words at least. So then you get the results back if you know that this child has some sort of hearing impairment, depending on the type of hearing impairment, there may be different sorts of treatments and these sorts of things may end up in the purview of another specialist. For example, it might be a ear nose throat specialist. It depends on what the issue is, which is why it's hard to put one blanket treatment for all of these children. In schools from that point on, there can be some accommodations. And I'm sure you've worked with some schools on this too, right? Including maybe even having the kids sit up closer to the front of the room. What are some things that parents have told you have helped your patients while they're at school?

Dr. Levin:
Yeah, that's a great question. So again, this has to be really, really individualized to the specific child and what their challenges are. So for children who are having trouble hearing, for example, yes, if it's something mild and being closer and being able to see the teacher's lips if they're starting to lip-read, that might be helpful. But maybe some children might do better depending on their age and what their other skill sets look like in terms of learning. Maybe they might do better with having the instructions written down for them or having the teacher's words projected onto a screen in front of them. That's not perfect, right? We've all worked with-

Dr. Nath:
The audio-visual.

Dr. Levin:
... speech to text before and every once in a while you get something that's a little funny. But something like that can be helpful and teaching the mode of learning. And that's true actually for every child. Everyone learns differently. Some people learn better by hearing, some people learn better by seeing. We really should be doing this for every child. But it's especially important for children who are having hearing difficulties. And then other things that can be helpful if a child is feeling overwhelmed by sounds, making accommodations to the environment to help with that. So for some kids they might do really well with having headphones on, for example, like noise-canceling headphones when they're taking a test, for example, so that they're not overwhelmed by the kid next to them who's tapping their pencil.
Some kids might hate having headphones on and that's not the right choice. Or some kids might get used to the headphones over time and it doesn't work as well anymore. So again, we're always individualizing this depending on the individual child and what they need. And then for some kids, especially the ones who are sort of overwhelmed by sounds, they might need a break during the day. I've had a few patients actually who seem to really just struggle after lunch. It seemed that the afternoons were really tough and it turned out lunchrooms are really loud in most cases, right?

Dr. Nath:
Yes, I remember that in school.

Dr. Levin:
Yeah.

Dr. Nath:
Yeah. It was.

Dr. Levin:
Yeah. So if you have trouble turning down sounds and only tuning into the ones that are important, a lunchroom can be real overwhelming and sort of set you off for the rest of the day. And so when that's happening, sometimes just a quieter place to eat lunch and decompress before children go back to their regular class in the afternoon can be really helpful. Now, again, this is individualized. We don't want to be pulling every child out from the lunchroom because that's a really important opportunity for socialization and that sort of thing. But for certain children where it's just a lot, they might need those opportunities in smaller doses or in quieter settings with maybe a select group of kids.

Dr. Nath:
It really comes down to the details is what I'm getting from this, every case is different, but sometimes there are really actionable things we can do that are relatively simple that can make all the difference for this kid.

Dr. Levin:
These are things that in hindsight, after they get put into place, you sort of look and go, "Well that makes perfect sense."

Dr. Nath:
But when the kid comes in that first clinic visit hitting his head against the wall, it's not obvious.

Dr. Levin:
Yes. No. No.

Dr. Nath:
And Soledad O'Brien, she also talked about socioeconomic factors that can affect kids getting the right diagnosis. And there's so many things. I mean she said herself, she had trouble getting that individualized learning plan with the school and she ran up against some trouble and she even said, "I have all the resources in the world, how about everyone else?" And there's kids that grow up in foster care. There's kids that are growing up in institutionalized situations and I know you work with this population specifically and it can be harder for them too to get these diagnoses, right?

Dr. Levin:
Yeah, absolutely. So I think there are lots of reasons for that. Some of it is something as simple as gas is really expensive and getting to an appointment is really expensive, right? So what can we do to make that easier? Do we need a virtual appointment? Do we need to just provide transportation? We need to be thinking about that. Then there's also a family's time and bandwidth, right? It takes a lot of time to go through all these appointments and fill out all the paperwork and figure things out. And for a family who's working three jobs to try and make ends meet, that can just be really hard to do. So how do we make sure that we get the information we need, right? Because sometimes that paperwork is really important and really helpful, but make sure that it's not a barrier to actually getting kids in the door.
There are barriers also in terms of school resources, right? So does city or town have the financial bandwidth to provide what they need to provide? We want them too. They should. We try to set schools up that way. But I think for anybody who's gone through the IEP, the Individualized Education Program process, it becomes very quickly, pretty clear that that can be a challenge in some places. And there are many more factors in addition, but there's a lot that can get in the way. And I think one of the jobs not only of physicians but of schools and of communities also is to figure out where are those barriers and how can we help the families who need some extra support, how can we help them overcome that. Because no child should be left in this situation where they're just uncomfortable and stuck expressing that in a way that's not as adaptive as it could be. There's a lot out there that we can do, and so I would encourage families to make that first phone call, get the ball rolling, and then we can take things from there.

Dr. Nath:
Well, thank you for joining us, April. I learned a lot from your perspective. Thank you for being here.

Dr. Levin:
Of course. Happy to join.

Dr. Correa:
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Dr. Nath:
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Dr. Nath:
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Dr. Correa:
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Dr. Correa:
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Soledad O’Brien on Raising a Child with Hearing Loss

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