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Kathleen Colella, AuD, CCC-A: You're listening to Amplified, presented by Lurie Children's. Transcripts of this and all episodes can be found at luriechildrens.org/amplified. We last left our heroine, Katie Radasevich as she finished high school. Even though Katie was academically successful and ready for a new adventure, I want to rewind and discuss something, before we follow her into adulthood, something arguably more important than an education. I want to talk about identity. Our sense of self or identity is a complex web of values, ideas and purpose, further influenced by the people around us. And our mid-adolescence years are crucial to initiating where one sees themselves in the larger world beyond their childhood.

Sometimes I imagine my own identity as a pie chart. And I wonder what percentage of the pie is my family, my friends, career, hobbies. Do the values change daily or even hourly. What happens when part of your identity sits on your ears for all the world to see and comment on? How does a child with hearing loss or any disability find an identity beyond their diagnosis and what can parents do to help?

Did you ever feel the challenge of balancing Katie's hearing loss with her overall identity? I mean, really the question goes to all of you. You wanted to give her the support she needed for her hearing loss, but I'm sure at the same time you didn't want her identity consumed by it.

Eileen Radasevich: You are correct. There was, there was, uh, no time that I can reflect back on that I thought of when I thought of Katie and wholly as this young person did her hearing loss come in in those top one, two or three of who she is, she who she was. Um, I saw a result. I saw her personality. What I think many of her strengths are because of how she dealt with her hearing loss, extremely organized, very disciplined, very careful to listen, because I think she really needed to pay attention to the person who was talking. So, she's a really good listener. And so a lot of who she is, I think, is a result of how she, how she was such a success, you know, in her life. Um, but in terms of a label, No. And, and I, a lot of that is again who she is. She never, she very, very rarely would I say, would I say, that she felt sorry for herself.

And a lot of that, we, I never tried to sweep it under the rug because it, it was, it's hard. I, and I can only say as looking at her, it's hard. I can't know for, I was not her. I'm not her. Uh, I'd say to her gosh, I, I'm sure this is really hard. And if we can find a better way, we will, but I think right now this is, you know, we're on the right road and we always, and one of the things I remember when she was little, I just, I would kind of fall back on thank goodness somebody, uh, invented hearing aids. And where would we be without them. And that kind of brought it back in perspective, but it was not a, if, if ever there was a time there was a label. I don't remember it in my mind.

Kathleen Colella, AuD, CCC-A: What about you, Katie? Did you ever struggle with having hearing loss as part of your identity?

Katie Radasevich: Not so much my identity, I think it was, you know, if something wasn't working, it was just frustrating. I didn't feel like then it was turning into, oh, like, you know, woe is me. Um, this is, you know, how unfortunate am I to have a hearing loss? I mean, yeah. It's, you know, it's kind of a drag when one hearing aid stops working. And, um, but I do think just being able to okay, problem solve, um, quickly get to the bottom of how do we make this work or, you know, I also feel like I just kind of figured out situations that I just didn't thrive in like concerts, not really my thing, you know, um, really noisy restaurants, not a huge fan.

So I think that, um, it's not necessarily, it was my identity. I think I just realized what would just make listening harder and did I really want to do it? And I think I was fortunate that it wasn't situations that were super common, right. Like, okay, I'm not going to Lollapalooza, you know, I'm not going to the grand opening of a new restaurant and it's, and I think that's okay. And I think I've just kind of come to grips with it. So it was never really something with my identity. I think it was more just realizing what I'm comfortable with and if there's something that's making me uncomfortable, how do I address it? Like we all do in any situation of our lives.

Kathleen Colella, AuD, CCC-A: Sure, absolutely. Absolutely.

Rudy Radasevich: And you had talked earlier about whether her hearing loss was a defining characteristic. It never really was. Cause there's always a lot going on with Katie. There's a lot to Katie. She was always a very serious student and took her academics very seriously and wanted to compel one and to compete very well. Um, and do very well. And she also liked being part of the team. She was fast. And so in middle school, she started running on the cross country and track team. And by the time she got to high school, she was fast and good and was on varsity as a freshman. And so that whole comradery of being on the team and being good, um, the fact that you're hearing impaired, the only time that came up was Katie would be running in a cross country race. And if it would start to rain, one of her classmates would find her on the route. She, Katie would pull her teammates, her, her hearing aids out and toss them to her classmate. So her hearing aids would stay safe and she'd run the rest of the race. And they'd give her the hearing aids later.

Kathleen Colella, AuD, CCC-A: I do understand though, you had a nickname, you, you self nicknamed your family though when Katie was growing up,

Eileen Radasevich: Absolutely. Well,

Rudy Radasevich: We still are.

Eileen Radasevich: We knew after her Katie's, uh, youngest sister was born that we were the girl family. We lived on a block on a culdesac with, um, uh, a family of five boys across the street and two and three boys next door.

And so they were the boy houses. We were the girl house, but we also called ourselves, uh, the loud family. And, um, it just kind of took up because there would be, it was, it was humorous as, as the years went on, because early on, I would be aware of whether or not Katie had her hearing aids in or not, because I, you know, after bath or whatever, I was aware that we were going to let her hair get dryer before she put them back in.

Um, and so every her younger sisters are dad. And I would all be talking louder, you know, and, and making sure that she could see us. But then as time went on, we would. We would make the mistake thinking she didn't have her hearing aids in and we would be all yelling. And, um, she'd just look at us and shake her head and say, I have my hearing aids in. I can hear you.

Katie Radasevich: Yeah. And that, and that even translated to college, you know, when I moved from the dorms to, um, a house with several of my girlfriends that I rode with and Bryn, my teammate who also had a hearing loss was at that house as well. Um, oh yeah, we were very loud and my, my girlfriends would even talk about when they came back from winter break, you know, their, their parents would be like, why are you yelling? Why are you always yelling?

Kathleen Colella, AuD, CCC-A: This is how I talk now.

Katie Radasevich: This is, this is how we talk now. Yeah. But yeah, you know, it's, I do agree like over the years, it just, it just became less of a, you know, I think especially because I was doing well, um, that it became less of like a, okay we really need to make sure you're hearing, you know, are you doing okay to more of a, yeah, you can have some humor with it too. And that's okay.

Eileen Radasevich: Absolutely. Yeah, you have to see the humor. I believe you need to see the humor in where there is humor. It was really pretty funny. We're all upstairs being really loud. And every day, every day, all the time you know.

Kathleen Colella, AuD, CCC-A: It is touching to hear the mother who had the out of body experience at her baby's hearing loss diagnosis and the father who was ready to go to war at his daughter's IEP meeting, simply laugh, laugh out loud about being loud. Katie had a hearing loss and the right things were done to nurture it. Yet it was only a part of a much larger and louder and beautiful life. But our identity is not only molded by our parents. There are two important Radasevich family members we haven't heard from yet.

Julie Radasevich: I'm Julie Radasevich. I am two and a half years younger. So I'm 30 and I'm a junior high language arts teacher.

Abby Radasevich: And I'm Abby Radasevich. I am five years younger, so I am the youngest of the three and I am in the food industry.

Kathleen Colella, AuD, CCC-A: Do you remember what age you realized Katie had a hearing loss or had hearing aids?

Julie Radasevich: I don't have like a distinct memory. I mean, I remember, probably the most vivid for me is when we would go to Pennelwood like really early on and you would like go to get in the water and mom would always make sure your hearing aids were off and you weren't wearing those anymore. Um, but I think it was just, she had hearing aids since I was really little so I don't remember any, like before it was just the way ,Katie was and it was just who Katie was. And I remember briefly being jealous that she got to pick the color. Um, and I remember

Kathleen Colella, AuD, CCC-A: The color of her hearing aids?

Julie Radasevich: Yeah the molds. And I remember once or twice, um, like people trying to come to our house and like solicitors trying to sell sign language programs and that being kind of a conversation. And I wasn't really privy to the conversation cause I was so little. And I remember kind of thinking, no, she's, she's perfect. She's fine. Please leave our home. Um, but other than that, that's probably the earliest for me.

Abby Radasevich: Yeah. Um, for me, it, Katie always had hearing aids, so being five years younger, it was just always in my life. And I think what's really cool is I don't have a distinctive memory either. I think that goes, I think that says a lot about our parents. I think it says a lot about Katie. It was never a difference or something odd. It was just like Katie had curly hair. Katie had hearing aids. I was shorter with straight hair. Julie could sing. It was just an attribute that never was something odd or different. It's just one of us might've had something that the other one didn't, but I'm with Julie. I definitely think it was always when we would be by a pool or at Pennelwood where we would always go vacationing every year. But it was even at Pennelwood, we would go with the same families. Everybody knew it was not this huge show, which I think is awesome because not probably everybody has that, but I think yeah, growing up and then probably my biggest memories would start being when Katie got into like middle school, high school, and it was just more of a conversation about how do teachers handle something like that. And that's probably the biggest memories, but at that point, seven, eight and it, and it really was just a conversation, not even something huge, so.

Julie Radasevich: I, I remember you coming home from school once. I think you were in middle school and your teacher wore their FM into the bathroom and forgot to turn it off. And I remember having lots of conversations about that and I don't remember anybody being angry. I mean, you know, we just talked about why your teacher was wearing it and why, you know, that might've been embarrassing for them and for you and I remember like when you got into high school and you had to really advocate for yourself saying like, this is what I need. This is how you can help me. And I remember looking up to you a lot for that.

Katie Radasevich: It was interesting, um, kind of back to Pennelwood, that we, yes. It was the same families that would go every, you know, the same week, every year. Um, and so, uh, there actually was a family there that had a little girl who was just a year younger than I was, who had a cochlear implant.

Um, and so, and that was actually, I remember one of the first times I had met someone who had a CI. Uh, and so that was kind of a, you know, unique experience for me too, you know, for them to see, okay. Yes, Katie needs to take her hearing aids off, but for me to then see this little girl with her implant, you know, it was, that was kind of wild too that, you know, again, just kind of randomly something popped up where there was another connection with another kid because it didn't happen a lot, you know, when I was growing up in the mainstream.

Kathleen Colella, AuD, CCC-A: Sure, sure. And I feel going back to your story of sometimes feeling jealous of thatthe ear molds, I think that's a really honest sibling emotion that all siblings have felt at some point in your life. Do you ever felt like you felt any type of jealousy in any other way? Because she may have got an extra attention with the hearing aids or the hearing loss?

Julie Radasevich: I would say I would feel jealous when Katie could at shut them off. So there is an iconic story that I was not at a part of, but my mom absolutely loves this story. And Katie, you were probably maybe six, eight, and in the back of my mom's minivan, the rad van and like any six or eight year old probably causing a scene in the car or who knows or wanted something. And my mom said no, and my mom was trying to discipline Katie from the front seat of the car while also trying to drive and Katie looked her dead in the eyes, in the rear view mirror and just flipped her hearing aids off. And there was nothing that my mom could do it that point. Which drove my mom nuts at the time, but my mom also was like, checkmate, you won, you know, that's absolutely iconic and we still talk about it. I mean, that was several that was over two decades ago and we still talk about it, but I definitely think that was one where she could shut them off and be able to sleep. You could shut them off and not hear somebody. But it's so funny looking back at that now, because that little piece of it, that you're totally right, you might stick onto as a sibling for being jealous. So much of the other stuff Katie had to go through completely outweighs that piece of it. Right. I wasn't constantly going and getting ear molds fitted or I could jump into a pool anytime I wanted, but as a kid, and you're just thinking, well, we're, we're in a car and we're going on a road trip, which we always did every summer.

I want to sleep, but mom and dad are listening to music and Katie's just zonked out because she can't hear anything. So I definitely remember that. Honestly, that was something that I was jealous of as a kid, for sure.

Abby Radasevich: Honestly, I thought the colors were cool. Um, I mean, I remember very, like several different variations you would get with like your special water molds. Um, I don't even, yeah, I can't think of anything else. I mean, you mentioned the turning it off. I don't. I think I'm jealous of that now it was an adult, you know, but I don't remember being jealous of that as a kid. I didn't feel like she, I mean, she obviously got, you know, a different kind of attention.

I wouldn't necessarily say special or more. I mean, I think we grew up with really, really great parents, um, who wanted to do everything they could for all three of us. So I think I just looked at it like they were just being really good parents. I didn't, I didn't look at it like I was being left out or anything.

Kathleen Colella, AuD, CCC-A: Sure. And it is interesting in a world that's so connected, you do have a unique ability, Katie, that now I'm thinking I'm getting jealous of the more we talk about it, of how you can, you can turn things off in a way. Not other people typically can.

Katie Radasevich: Yeah. You know, um, I know that will, um, also talk to Chris too, but you know, there's specifically one time kind of, since we're talking about being able to just kind of shut the world out, the year that the Chicago Cubs won the world series, Chris and I lived a mile from Wrigley field and, um, we were right on Addison street. So just a very busy street. And of course, That evening, you know, the city was just ecstatic. Right? And so we, I remember we sat on our, um, on our front porch, we were watching people, you know, celebrate whatever. So eventually we're going to bed and I mean, it is just a party outside of our apartment. And I just looked at him and I said, okay, goodnight. And I took everything off and he's like, okay, this is great. It's you know. And so, you know, he, he didn't have any way to black it out. Right. So, um, I do remember that feeling a little bit of the advantage of.

Julie Radasevich: But the flip side of that, sorry, the flip side of that, like I was asking you the other day, you know, when you're home at night with Nora, when Chris is working you know, you still have to leave. You were saying like, you would take your cochlear off and leave your hearing aid in. And then in the middle of the night, you'd have to switch and like, especially with the baby, you can't lay that way. So those are other things that like, we don't have to deal with at night. So I think the flip side, you know, like Abby said, there were lots of other things that she had to deal with as kids that we didn't so, sure muting mom would have been fun every now and then, but maybe.

Kathleen Colella, AuD, CCC-A: And so then you too kind of walked out into the world with more knowledge about someone with hearing loss than the average person. I mean, do you feel like that influenced you in any ways and when you, um, went off to college or the first time you met maybe a young adult with hearing loss?

Abby Radasevich: I know Julie took on sign language as her, um, language elective.

Julie Radasevich: Yeah. In college. I wasn't having any luck with Spanish. Um, and I mean I'd always had an interest. You know, it wasn't something that we really talked about. Like I said, I remember, you know, people coming by and, you know, trying to sell their program or whatever, granted, that was a very naive kid view. But then I took on sign language in college. Um, I met a friend whose mom was deaf, and so she was fluent in sign and was only taking the classes so that she could become an interpreter, you know, no matter your background, you still have to do that.

So that was really interesting. And now as a teacher, you know, anytime I show anything in class, I make sure my captions are on. Um, you know, this year with Zoom, I got a little more vocal than I think other people would have probably wanted about not being able to have good captions for my kids at home, you know, and I teach 13 year olds.

So anytime I have captions on you always get the kid who was like, I don't want those. Those are annoying. I'm like, well, some people really like them and they're really helpful and they're not going to bother you. They're only going to help. So you're fine. And then I now teach, I now do the sign language intermural at school, and Katie's actually come in and been a guest speaker. And my kids love asking her questions. It's just what it was like, going up with a hearing loss similar to this.

Abby Radasevich: Yeah. I would say for me, my main thing is one, what people assume. So I think also when someone looks at you and there's nothing physically different about you and then they learn your sibling has a hearing loss, I've had so many people be so shocked and, and then assume that I know sign language or that my sister Katie knows sign language or, you know, ask a lot of questions. And I think they all come from a great place because they don't know either. And I don't know all the answers to a lot of, you know, to much, but I can explain what it was like having a sister, but it's always just been really interesting to me how truly shocked people are because they look at you and think you don't, you're not hearing your parents have, how could you know?

It's just really interesting. Um, and then my thing too, I'm very, very adamant about subtitles. I also get very vocal when anybody wants to talk about, oh, my Netflix has subtitles on and I just say, you can take 30 seconds and shut them off if you don't want to, if they want to automatically put them on for people that need them, I think that's really cool. And then people get real uncomfortable and I don't really mind because I think it's just a gentle reminder that sometimes it's okay. When things are made for other people who have had a whole heck of a lot harder and they can take 20 seconds and shut the subtitles off. I blame Katie for always having to have my subtitles on now I have to have them on, I can't watch them.

Um, and now when I just actually went to a movie theater for the first time, in almost two years and that they didn't have subtitles and I hated it. I love going to the movies, but I thought, I wonder if they have ones with subtitles, I would have really appreciated that. And I really hope that they do for people who actually need them and not just prefer them like I do. But I would say the, the main thing that it's just been reacting to people's reactions to when they learn and then

Julie Radasevich: small changes people can make, like when we went to Orange Theory and you were mentioning that it was hard for you to hear in there, um, especially with the co the coach having a mask on and the music so loud, I went to my, the next time I went back to my own studio. I said to the coach, you know, if we're going to be in masks for a while, have you considered putting in writing what people need to do? You know, I know you're announcing it, but like, Katie couldn't hear that. So she's, you know, having to lean over and ask which you know, and she's great about advocating for herself, but it just takes that piece away. You know, putting subtitles on takes that piece away where people don't have to ask all the time then.

Kathleen Colella, AuD, CCC-A: I think though you do touch on an important point that it's, I think that's what, um, accessibility is really all about. Not having to ask that the world is just open, open for all.

Julie Radasevich: Right. Cause I'm very proud of my sister for being an advocate for herself, but I don't think she should have to, to that point, the world should be, uh, accustomed to so much of what we've learned. I mean, modern medicine is incredible and we all know or have the ability to know. So something so simple as a gym, just printing out, you know, here here's a print out. If you might need it or somebody even, there's just a lot that you can do. So I'm very proud of how Katie advocates for herself, but I'm far more thankful when she doesn't have to.

Katie Radasevich: Ditto.

Kathleen Colella, AuD, CCC-A: Would you have any advice for any kids out there who have a sibling with hearing loss? Because I feel too sometimes, you know, it can be a lot of appointments. Um, very overwhelming and we've we still have masking in our world. Um, if you met a young child who their, their sibling recently was diagnosed with hearing loss, what advice would you give them?

Julie Radasevich: I think my advice might alter slightly, depending on the kid's age. Um, you know, I think about like my own students. I think to the best extent that they can, I guess, no matter what the age I would say to ask questions. Um, I mean, I never felt like I couldn't ask you or ask mom and dad, you know, why, why you had all these appointments or why you needed to get molds all the time or why you couldn't jump in a pool right away. So, but I guess I would kind of be parent advice too. Cause we had a relationship in our house where asking questions was okay.

Abby Radasevich: I think the first thing that came to my head was to be patient, which is really difficult to tell a child regardless of the age. But I think that's the number one piece of advice is to be patient because like you said, there's a lot more that goes into it than just meets the eye. You know, the everyday might be making sure that there's batteries around. I distinctly remember that growing up, we had bad everywhere. I actually just thought of that. I saw a Quiet Place Two was the movie that I saw and recently, and the young girl has a cochlear implant in that movie. And I was thinking to myself, how does she charge that? You have to charge those.

And my, I went with my boyfriend's younger brother who said, well, you know, can't you just get batteries. I'm not certain, but even if you could, they're not just your standard. Like you can't throw a AAA in there and you've got to get, you know, there's all this stuff going on. But, um, I, so, you know, the everyday is making sure it's charged, making sure there's batteries around, but there's a whole lot more that goes into it.

Like you said, there's appointments. There's also tough days where I remember your hearing aids would, you know, I, if I could hear her hearing aid, it was a bad day. You know, we could get the feedback and there's a whole lot that goes into it and I can't imagine how frustrating that is even for an adult as in, you know, Katie as a kid.

And I can't imagine, and I definitely, probably didn't have as much grace as a kid back then where that's why I think my first piece of advice out the gate would be to just be patient. Because even if it looks like everything's good, you can wake up and hear and your sibling can't and it's, and, but I that's a quick or very close line too.

You don't want to put guilt on a sibling or, you know, they have to go through all of this. I think that's where you can start harboring kind of those jealous emotions, more of just be patient. And it's not, you know, an odd difference. It's just something else. So, and I would definitely give that advice to a parent too, to kind of instill in them and all of the kids, but I can just imagine telling my two year old niece to be patient right now, probably wouldn't go over the best. So to Julie's point probably depends on age, but I think patience is absolutely key.

Julie Radasevich: I'm looking at them. I think when you're talking to them, like, I remember, you know, I would try to, like, I would say something to Abby from a room away and it was fine. And with Katie, you know, we, it was best if I was looking at her and she knew I was talking to her. You know, even maybe slightly towards her better side, um, you know, you can't just go up from behind them all the time and expect them to be tuned in, that's not fair. So I, I think that's a really small shift that you can make again, that can just do so much.

Abby Radasevich: Yeah. And being clear in questions I remember when we'll ask Katie to say, oh, do you want, do you want the blue one or the red one? Yeah. Like you didn't hear me, let's do it again. But also I think that's to just, you know, you don't want us to want to have to save what, 10 times in a row. So looking them in the eye to Julie's point, ennunciating your question and clearly saying it, it just helps everybody.

And so, but I, those are some of my favorite stories too, where one time and I leaned over at church and I said, oh, Katie, that's a really pretty necklace. And she looked me dead in the eyes and turned to my mom and said, mom, Abby wants mint. And I was like, oh, does, does my breath smell? She goes, isn't that what you just asked me?

I was like, not even close, but I was in a church pew whispering. And that's a prime example. Don't go to their ear and whisper and expect them to know it's. I also think too, a piece of advice going off of Julie, what you said is also just acknowledging that there is something else and not just trying to hide it, really making it so it's not an odd difference. It just is another attribute and not trying to make it this hidden thing or which I think also is probably difficult as a parent, too. You want your child to feel like they fit in, but it's okay that they have something else that most other children don't have, because I think that also just helps you remember that there's something else going on and being more accessible and available to that person.

Katie Radasevich: I feel extremely fortunate to have such a family. And now that family keeps growing, you know, with my husband and even my daughter too, to feel like just the embrace of my hearing loss. And, um, and I remember from a young age, when the two of you who you might not have even really realized what you were doing, but I do remember you guys just taking the time to slow down, look at me. And it was at, you never made me feel that I was, you know what I mean? That I was frustrating you, or, you know, just like wasting your time. And I even remember growing up, you know, if, if I, perhaps wasn't wearing my hearing aids, you could easily just go find them and bring them to me. And it wasn't even like a question.

It was just here, you need these. And so I just felt so lucky. And so, yes, too. I think that's wonderful advice because I, I felt all of that. Um, and I think that has now just allowed me to continue to maintain, maintain confidence as well, especially when I was going through, you know what I mean? Just those difficult transitions as a kid too, to have a family that was so supportive, um, and just really embraced it.

And yeah, it was just something about me. Um, and yes, there would be days where it needed to be addressed more than other days. I never felt like I was the odd one out because of my hearing loss.

Kathleen Colella, AuD, CCC-A: I am fortunate to have social worker, Danielle Lee here with me today. She has a dual appointment at Lurie Children's in the Department of Audiology and the Gender and Sex Development Program. And Danielle, will you please elaborate more on what these dual roles mean for you?

Danielle Lee: Uh, like Katie said, my name is Danielle and I'm a social worker here at Lurie Children's, I've been a social worker for about 10 years, uh, five years here at Lurie. And I split my time between audiology, um, helping families, you know, who utilize any sort of hearing device. And then the other part of my time, I work in the gender and sex development program, specializing on the sex development side.

Kathleen Colella, AuD, CCC-A: I just feel we're so fortunate because there's so many audiology programs out there that don't even have direct social work support. And then we have you in this unique dual role that you can bring your expertise to. And I feel you must deal with a lot of parents who are figuring out identity, you know, watching their child struggle with identity, or they have this really young baby that they're trying to figure out what that identity is for them long-term and. How do you help parents sift through all that information?

Danielle Lee: I think it can be really difficult when you have a baby and you aren't aware of audiology speaking like your child can't have a hearing test in utero. So you have a baby and someone comes in and tells you, oh, your child didn't pass her newborn hearing screening. Or, um, it has some sort of degree of hearing loss and for a parent, in my experience, it's been a lot of, kind of a grieving process of potentially what does this mean for my child? Um, will they be able to do all the different things that maybe you had hoped for them? A lot of times parents ask like, oh, you know, will they be able to play sports or go swimming or all those different things?

And I think a lot of those activities that we take for granted can be a part of our identity and how we move into the world. And so for a lot of parents, I think it is trying to figure out like, okay, well, what is my child just going to be a quote, unquote, you know, deaf, like, what does that mean? And I think for our role, it's kind of being able to sit with that and have them like help them process that, but also give them, um, a different perspective and kind of talk about how hearing doesn't necessarily have to be your child's identity.

Kathleen Colella, AuD, CCC-A: And I empathize with these parents who they have to sometimes make these difficult choice about their child's communication modality. And that's such a huge part of identity. Um, and especially in Katie's story of, are you going to be an oral speaker? Are you going to use more sign? You know, what can clinicians do? What can audiologists do to help parents come to that decision?

Danielle Lee: So definitely being able to talk to them about, you know, what they want for their child and not ever assume that because they are oral, that that's exactly what they want for their child. So being able to kind of have that conversation and then if they do want their child to be an oral communicator talking about, okay, here are the steps that we need to go through to make that possible.

And I think when audiologists are able to kind of break that down and talk about to be able to speak, you have to be able to hear and just to kind of putting that all together is not something that we typically think about or necessarily learn about long-term. And so I think having that explained explicitly can be really helpful for parents to be like, okay, so this is the goal that I want for my child.

Here's what I need to do to be able to kind of reach that goal and then offering, if you know, families are interested in sign language or other things being open and able to kind of help provide that information for them and support how they want their child to communicate.

Kathleen Colella, AuD, CCC-A: I know you've talked to a lot of families sometimes the day their child's diagnosed. Sometimes it's a few days or a week after, are there any, and I know one, one size doesn't fit all, but are there any specific patterns or tools that you have heard over the years that families felt, oh, it was so helpful to hear that the day of the diagnosis or to get that resource the day of the diagnosis.

Danielle Lee: Sure. I think a lot of families really like seeing how, like seeing the audiogram that you guys have and how it's plotted out. There's colors and there's the speech banana on there. And I think visually being able to see that, and then seeing where their child's hearing falls on there. Like how it's plotted can be really helpful. Hearing is can be very abstract if you don't have issues with hearing, being able to kind of understand how your child might be hearing is difficult because it's nothing that you can see. And so having that visual in front of you to be able to see like, okay, this is where quote unquote like normal hearing lies. Here's where our speech sounds are and kind of here's where your child lies. And this is like the difficulties that they might be having with hearing, I think has been very helpful for families.

I think another thing that can be really helpful is just kind of giving family space too, you know, if you are. Talking to a family that came in with like a very new baby. Um, they're still in general, probably just adjusting to being parents, let alone hearing, you know, that their child potentially has a hearing loss, you know, even having a profound hearing loss.

So there's definitely tears and emotion and I think being able and comfortable to kind of just like sit in that for a little bit and giving families the space to kind of grieve in front of you, if that's what they choose, not everyone, you know, has that reaction. But if they do being able to kind of sit with that and normalize how they're feeling, um, I think that that has definitely softened a lot of families that I've worked with before.

And I think just also giving them hope, you know, for audiology, sometimes you might not under know why a child has a hearing loss, but we definitely have, um, options in order to like help them hear and speak orally if that's what the family chooses. And so I think just overall having that kind of sense of hope and that there are things that we can do to make sure that they have the most fulfilling life that they can and can achieve all the things that maybe you're hoping for.

Kathleen Colella, AuD, CCC-A: Where do you feel families can go, if, if say they are really struggling with the diagnosis and they need something beyond their audiologist or their speech therapist, you know, where, where should families go for help?

Danielle Lee: Sure. You know what, Lurie, we're really fortunate because we have, um, two social workers that support the audiology department. And so we're always there for families in terms of, if they just need to call and vent or want to process, we're definitely here to support that. We can also provide recommendations or, you know, if a family, if a parent is interested, in you know, their own kind of therapeutic interventions, we can help them, um, kind of get set up with a therapist.

We also have Parent-Wise Program through Audiology, which is great and allows families to connect with other families and can kind of talk about their experience and provide support for each other. So a lot of families have found that to be really helpful. And we can also link to other community resources that are available for children and families with hearing loss.

And so being able to kind of connect them to those resources is a big part of our job and helping to ensure that families feel as supported as they, they want to be and get them getting them connected to things that could kind of help them through this process.

Kathleen Colella, AuD, CCC-A: So one of my favorite perspectives in this project has been Julie and Abby Radasevich, Katie sisters, because I feel we so often forget about the sibling. You know, they're, they're there at the appointment, you know, sometimes they've been bribed, they'll get a donut if they can be quiet during the testing, but. It's part of their life too. And how can parents, and I mean, I guess this even goes for me as a clinician, you know, how can we help siblings become allies and not feel a resentment towards a sibling who is maybe getting extra attention or time?

Danielle Lee: Sure. I think that as transparent as probably age appropriate for your child, but kind of talking to them about like what it means to have a hearing loss and teaching them like, this is the equipment, this is how it works. Just normalizing how everyone is different. And everyone might need a little bit of help in different ways. And that this hearing device is what's helping, you know, their sibling be able to hear better. And I think once kids. I can understand that and even see their sibling, like how they are without their hearing aids and then how they are with their hearing aids can kind of understand that like, oh, this is really helpful.

And I've seen a lot of siblings and parents that come in and be like, oh yeah, you know, Johnny gets really upset if someone on the playground says something about their, you know, sibling's hearing aids, or if they don't have them in, you know, they'll bring them to them and, um, want them to be like, I'm trying to talk to you.

Like, you know, so I, I think that as open as you can be with your kids and normalizing all differences, you know, whether it's hearing aids or glasses or skin color or gender, all of those things. I think just normalizing difference. Kids are so resilient, and I think understand a lot more than we give them credit for.

Kathleen Colella, AuD, CCC-A: After you listened to this, what are your thoughts about Katie's journey? Especially with her identity?

Danielle Lee: Yeah, I mean, I think. When I was listening to it, it's amazing to hear her siblings and her parents kind of talk about Katie as an individual. And, you know, hearing is just one part of who she is, you know, whenever I talk about or write notes, you know, after meeting with a family, I think it's a lot of people can clump, like, oh, so, and so is, has, is diagnosed with a hearing loss.

And I think being able to separate like the person from whatever diagnosis that they have is really important and it lends or it enables that person to be able to develop whatever identity that they want and, you know, and maybe they really want to embrace the, that okay I have a hearing loss or I use a cochlear implant and I'm really wanting to dig into that and be a really great advocate on that side.

But also maybe I just want to be Danielle who loves to dance and hang out with their friends and do this and that, and happens to wear a hearing aid. So I think being able to open that up and not necessarily always focusing on the hearing loss is so important and will really help children in general, be able to kind of discover what they want.

Kathleen Colella, AuD, CCC-A: Yes. I, I love that because nobody should feel obligated to be an advocate or a spokesperson for any part of their identity, unless that's what fuels their, their passion. And even though Katie is a wonderful spokeswoman, if she didn't want to do that, that's okay, too. So I think that's a wonderful point that, and parents shouldn't feel like they need to be spokespeople either. They shouldn't carry that pressure with them. You know, they don't deserve that. Unless that's what they want to do.

Danielle Lee: Absolutely. You know, you're free to be who you want to be and incorporate whatever difference or part of your body or anything that you would like to.

Kathleen Colella, AuD, CCC-A: You're right. Yeah. And I love the personalization of devices these days. Um, you know, you can get the bright, fun colors and the stickers and bling it out. And I love that and I know that's what I would do, but then it's okay, if you, if you want to go the more neutral route, whatever, whatever works for you and your family.

Danielle Lee: I think that's all part of your like own identity, you know, do I want to be out, you know, have it like loud and proud or am I more just like, you know, I just want to be a little bit more subdued and being able to decide that for yourself and figure out, you know, where you want to fall. And maybe like this year I'm going to have really, you know, it's the same color as my hair, but you know, in the next couple years I'm going to get new ones and I want them to be like a different color or something. But I think just giving everyone space to kind of develop their own identity.

Kathleen Colella, AuD, CCC-A: Absolutely. Well, thank you so much for listening with me today. And for being here and for everything you do for our families.

Danielle Lee: Oh, thank you so much.

Kathleen Colella, AuD, CCC-A: There are volumes of research about what factors correlate with childhood hearing loss and successful outcomes. These successful outcomes are usually considered speech and language skills comparable to typical hearing children. The main factors correlated with success is identifying the hearing loss as early as possible, fitting hearing aids as young as possible, wearing the hearing aids at least 10 hours per day, pursuing speech therapy. I could go on and on. Eileen and Rudy did not have the opportunity to follow all this now well-established research back in 1991. Katie was identified relatively late with a significant hearing loss yet sits on these interviews today with perfect speech and incredible academic accomplishments.

I stand by how important early detection and intervention is, but it makes me wonder how to quantify the support the Radasevich family had on Katie. How do you create a metric for Abby's patience or Julie's empathy or all of their senses of humor? There is an immeasurable power in one's environment which can make or break success depending on what success means to you.

So what happens when our heroine goes off to college, find out next time on Amplified. Thanks for listening. Amplified, presented by Lurie Children's was created by me, Katie Colella music by lesfm, artwork by Katrina Graziolo special. Thanks to Jamie Budzig, Lisa Weber, Joy Ringer, Jen Haney, Danielle Lee. And of course the Radasevich and Farnsworth families.

If you need resources regarding childhood hearing loss, go to Luriechildren's.org/audiology-resources. Transcripts of all episodes are available at Luriechildren's.org/amplified. Learn more about Katie and the incredible division of rehabilitation services on Instagram @Lurierehabservices.

That's @L-U-R-I-Erehabservices.