A Hearing Loss Podcast: Season 3 Episode 15 Notes and Transcript
Episode 15 Show Notes
On episode 15 of All Ears at Child’s Voice: A Hearing Loss Podcast, Tatum and Wendy interview Julie and her daughter, Clara, about their experience with Clara’s hearing loss. Clara uses bilateral cochlear implants and is a graduate of Child’s Voice. She recently graduated from high school and, at the time of the recording, was preparing for her upcoming transition to college as a student at the University of Illinois at Urbana-Champaign. Julie continues to be actively involved with Child’s Voice and currently serves on Child’s Voice’s Board of Directors.
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Special thanks to John McCortney for his work recording All Ears at Child’s Voice episodes. Episodes of All Ears at Child’s Voice are graciously edited by John McCortney.
Episode 15 Show Notes
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On episode 15 of All Ears at Child’s Voice: A Hearing Loss Podcast, Tatum and Wendy interview Julie and her daughter, Clara, about their experience with Clara’s hearing loss. Clara uses bilateral cochlear implants and is a graduate of Child’s Voice. She recently graduated from high school and, at the time of the recording, was preparing for her upcoming transition to college as a student at the University of Illinois at Urbana-Champaign. Julie continues to be actively involved with Child’s Voice and currently serves on Child’s Voice’s Board of Directors.
Tatum and Wendy talked with Julie and Clara about…
- Julie’s experience first learning of Clara’s diagnosis, choosing a communication mode for Clara, & pursuing cochlear implantation for Clara
- Clara’s perspective on her hearing loss, communication mode, and cochlear implants
- Julie’s experience with Clara’s time in early intervention and preschool & Clara’s transition to the mainstream
- Clara’s education experience up through high school and her memory of her time at Child’s Voice
- Julie’s & Clara’s experience with Clara becoming more independent with her devices & advocating for herself as she’s gotten older
- Clara’s upcoming transition to college
- And more!
Special thanks to the cochlear implant manufacturing company of Clara’s bilateral cochlear implants, Cochlear Americas, as they helped coordinate Julie and Clara’s appearance on the show. On the episode, Julie speaks briefly about how she made the decision to choose Cochlear for Clara’s cochlear implants and Julie & Clara share some about their experiences with the company.
As a note to our listeners, All Ears at Child’s Voice does not intend to promote any specific product on the show. If you have questions about selecting a manufacturer when considering a cochlear implant, please talk with your team and especially your audiologist. Information on all three cochlear implant manufacturers can be found at their websites, listed below.
Special thanks to John McCortney & Michael McCortney for their work recording All Ears at Child’s Voice episodes. Episodes of All Ears at Child’s Voice are graciously edited by John McCortney.
Disclaimer: Child’s Voice is a listening-and-spoken-language program for children with hearing loss. All Ears at Child’s Voice: A Hearing Loss Podcast is a resource provided by Child’s Voice. Reference to any specific product or entity does not constitute an endorsement or recommendation by Child’s Voice. The views expressed by guests are their own and their appearance on the program does not imply an endorsement of them or any entity they represent. Views and opinions expressed by Child’s Voice employees are those of the employees and do not necessarily reflect the view of Child’s Voice.
Episode 15 Transcript
Jessica Pearlman: Hi! Welcome to season three of All Ears at Child’s Voice, a podcast discussing all things hearing loss. We aim to connect parents of children with hearing loss with the professionals who serve them. My name is Jessica Pearlman and I’m one the school’s speech-language pathologists here at Child’s Voice. I work with all the students on their speech and language needs. And I love getting to work with the students and watching them grow over time. And now on to the show!
Wendy: Welcome to another episode of All Ears at Child’s Voice. We aim to connect parents of children with hearing loss to the professionals who serve them. We’re your hosts. I’m Wendy Deters.
Tatum: And I’m Tatum Fritz. This week on the show, we are joined by Julie and her daughter, Clara. Clara uses bilateral cochlear implants and is about to be a student at the University of Illinois at Urbana-Champagne. So she just graduated this past summer and is about to be transitioning to college. Julie additionally serves as a current member of the board of directors for Child’s Voice. Today we’ll be talking with Clara and her mother, Julie, about their experience with Clara’s hearing loss. Julie and Clara, welcome to the show.
Julie & Clara: Thank you.
Wendy: Julie and Clara have a long history with Child’s Voice, but we were also reconnected with them through the manufacturer of Clara’s devices, Cochlear. So before we continue, we just want to make it clear that although we’ll be talking to Julie and Clara specifically about the Cochlear device, we’re not promoting any specific product on this podcast. We are really working towards having representation from all cochlear implant manufacturers at some point on the show. And if you have questions about selection when you’re considering a cochlear implant, please talk with your team, especially your audiologist. We will link all three of the cochlear implant manufacturers’ websites, including Med-EL, Advanced Bionics, and Cochlear in our show notes today. Now that we’ve addressed that, let’s get to know our guests better.
Tatum: Julie and Clara, we’ll definitely be talking about this more in depth when we get into our main discussion. But Julie, can you briefly tell listeners about your family? And then Clara, can you share some about your hearing loss and the devices you use? Julie, would you like to start?
Julie: Sure. So Clara is a twin. Her and her brother were born in 2001 and we didn’t uncover Claire’s hearing loss until she was about 14 months old. So we had suspected her hearing–, there may be an issue with it based on her brother with just responding to, you know, basic things. So when we took her into the pediatrician, at first the pediatrician thought I was a nervous new mom and kind of dismissed the situation. And then after a month I went back to her and said, no, I really think I need to like see somebody. So then she referred me to an ENT and we went ahead and she was tested and then we discovered that she had a severe to profound hearing loss and then sought out as much information as we could on our different options.
Clara: Yeah. So I use cochlear implants and I’ve grown up using them all my life and I’ve really been supported with my family, teachers, friends, and just kind of learned how to overcome the different struggles that come with having a hearing, a hearing loss. But I’ve also found a lot of accomplishments through that and a lot of successes doing that.
Wendy: So can you both briefly share with the listeners about your connection to and ongoing involvement with Child’s Voice? You said you first started to suspect the hearing loss around 14 months old, and then when did you start to find Child’s Voice, receive services?
Julie: Sure. so back in 2002, we started, once we found out she had her hearing loss, we started exploring different options. We knew that we wanted her to be able to be in a oral environment, being able to communicate with anyone that she chose to and not be limited in her communication mode. So we immediately started exploring oral communication and found that there were multiple therapists in our area that offered this communication mode. So we started working with a lady early on. Clara was diagnosed at 14 months, immediately got hearing aids. So she was working with this therapist on sounds and then as we explored you know, her hearing aids and realizing that she was still missing certain sounds, she just didn’t have access to all the sounds. Then we were introduced to the idea of cochlear implants and started to explore and seek out different surgeons, experts in their field on that. And after researching and interviewing a couple of different surgeons, we decided that the cochlear implant was the right way for her to go so she could have access to the speech sounds that she just couldn’t get through her hearing aids. We actually found Child’s Voice through an article in the Tribune, back in the days when people actually received newspapers. But we read an article. In fact, my sister-in-law was the one that had made me aware of it. And I read about this school and I thought, wow, this sounds fabulous. These children are learning to listen and speak through speech therapy programs and we have to go check this school out. So in the process of that, I had referenced the speech therapist that we were seeing at home and she had heard about Child’s Voice and suggested we go check it out. Because she was getting just limited speech therapy, I think we went maybe one or two hours a week with this woman. And we knew that we needed to have a little bit more of a aggressive plan to get her caught up in her speech. So when we visited Child’s Voice school my husband and I walked through the halls and we heard children talking and singing and laughing and playing and sharing books. And we thought, wow, this is where we need to be. This is where Clara needs to be. And we immediately saw like a light at the end of the tunnel from a full communications perspective. We felt like, wow, she’s really going to be able to learn what she needs to at the school. And we’d also learned that so much of speech is acquired before the age of five, approximately. And so we knew at this point, she’s two and a half and we’re evaluating cochlear implants and we realized like, we really need to make sure she’s in the right program. So we immediately fell in love and signed her up and enrolled her Child’s Voice school and worked with our school district and they were cooperative at first. And then we did have to advocate for why we wanted her to go to Child’s Voice and it all worked out great. We immediately saw a difference in her responding to sounds and working with the teachers there. She went, I think initially you were there three days a week in the mornings and she really flourished. She had other kids in her class that were learning the same things she was, it was very play-based. But also great opportunity to pick up so initial speech sounds and then words and then phrases and then sentences. And so that’s how we really arrived at Child’s Voice and, and stayed.
Tatum: That’s so cool that it was a news article that originally got you connected.
Julie: Yeah. So that goes to show you got to, you know, promote awareness in the media.
Tatum: Yeah. In a printed article. (*laughs*) I can’t imagine. I’m sure you can’t either Clara.
Clara: Nope. Nope.
Tatum: So, we also know that you’re still connected to the school. So you’re on the board. Are you involved in the alumni program at all?
Clara: Yeah, I am. So we do have every once in a while we’ll have events where we get all the alumni together to talk and hang out and just reconnect. Cause it’s really good to see other people who have hearing loss and just kind of like relate on experiences. Cause usually you’re not really going to a school where you’re going to have many other people with hearing loss. So it’s awesome to be able to kind of laugh about different experiences we both go through. And then we also do events where we’re fundraising for Child’s Voice and for other, different programs. And it’s really awesome just to be able to come together and then also we’ll volunteer for things like that Child’s Voice has like, the golf events. And I currently do have two best friends still from Child’s Voice. I still hang out very often with and it’s really awesome cause we would have carpools to Child’s Voice every morning and it was just really cool that we stay connected and we still get to see each other even though we’re at different schools and stuff. So.
Tatum: Oh, that makes me so happy.
Wendy: That’s so amazing. I’m sure the parents and the parents bring you and you guys get to share your unique experiences together, but that’s so cool that you’re involved with other alums. Have you met any other alums that you weren’t in school with but have become friends with later on?
Clara: Somewhat. Everyone lives so far away when they go to Child’s Voice. But we all like kind of know each other more now and we’re a little more connected.
Wendy: That’s really cool.
Julie: Yeah. I feel like the alumni group that’s working together now, it was really neat to watch them reunite as a parent seeing these little people at five, six, seven years old and many of them I hadn’t seen in 10 years or so. At the first few alumni events, it almost brought me to tears to see these young men and women now together and enjoying each other’s company and outings and then actually planning events to help support the future students at Child’s Voice and seeing the little people that are there today and recognizing that they were once that age. Yes. That’s really neat.
Tatum: That’s wonderful. So before we go into the main discussion, we like asking our guests every week for a story from the past week. It could be anything, something cute, something funny, something heartwarming. Do either of you have something that comes to mind?
Clara: When we were singing, terribly singing the lyrics at Summerfest.
Julie: Oh yes, we were together at Summerfest watching a band and we knew this song but didn’t necessarily know all the words. So Clara and I were singing together and making up new words to it.
Clara: And singing along to it.
Julie: And she had different words than I did and I had different words than her and we just laughed and we just thought it was hilarious that we tried to just make up our own words of what we thought the song was.
Clara: Yeah, we’re both just not good at picking up what the exact lyrics are. So we were both just laughing, figuring it out that we both were doing that wrong
Julie: Cause I’m famous for getting the wrong lyrics in a song. And Clara has done it several times as well. And I say, I’m sorry, I think I must have passed that along to you because my friends make fun of me all the time.
Clara: But it’s fine if you sing confidently and it’s fine. It sounds just as good.
Julie: It’s good.
Tatum: That sounds so fun! I love Chicago summer festivals. So we’ll get into the main discussion now.
Wendy: Can we go back to that for just a second? I want to ask a question about the experience that you had with your pediatrician. Often times parents will say that they’re the first ones that notice concerns, but sometimes other professionals don’t share those concerns. What gave you the confidence to go back again and say, you know, I’m really concerned and how can you advise other parents to do the same thing?
Julie: So, you know, even though I felt like my pediatrician was attentive and she knew us, I knew she, I mean she didn’t really know us, like she would see us every couple months and after I had addressed a couple of concerns with her about Clara’s hearing loss, the tricky part was that she could hear very loud sounds so like, you know, they’d say, Oh, bang, you know, pans together. Or she would respond to the dog barking or she would hear an engine go by and look up. So part of that was like, oh, well, she’s hearing, but you’re not educated as a new parent to know what speech sounds and what levels of hearing begin. So I did notice finally after I addressed the concern and she said, no, no, you’re just a nervous new mom. So then I was like, oh, okay. Maybe she’s right. And then like a week or two later I’d walked into the room with Clara and Leo. They shared a room and I was talking with them as I walked in and Leo immediately popped up and was like, “Mama,” you know, and looking at me as I was talking and smiling and Clara was staring in the opposite direction. And I thought, well, “Clara” and I called her a couple times and she didn’t look over and I thought, okay, something’s not right. And that’s when I called her back and said, I need to see you. And within like a week I was back in there. But then, you know, the problem is too, they’d take time to do the ABR testing and the hearing testing so it was like another month or six weeks before we actually got a diagnosis even.
Tatum: So the official diagnosis was more like 16 months?
Julie: Yes, it was like 16 months. Yep, exactly. Yeah.
Tatum: Cause you started having concerns at 14 months.
Julie: So 12 months I brought up the concerns. 14 months I think I brought her back. And then within six weeks we had a diagnosis because we had to go to ENT and then she did her testing and then we had to go to the hospital, do the ABR testing. So it was definitely this longer process. In hind sight I’m glad that I, you know, went back at, you know, and challenged her. But initially I probably should’ve just stuck with it and said, no, can you just refer me to someone? Cause I thought that was odd as well. Like why wouldn’t she have just said, well, if you’re concerned, why don’t you go see this ENT here. I’m not sure why we didn’t get a referral for an audiologist originally, and that I had to go back and stress my concern again before we were able to get that referral.
Tatum: Yeah, I feel like that it’s really brave to go back. And I know you’re talking about how you didn’t push it hard enough, but that’s so hard as a new mom and then the professional, like you’re inclined to trust them. So.
Julie: Yes, exactly. So I would always tell my friends if you have any concerns or your gut’s telling you something different then just challenge them and you know, you know your child best and you need to really just be confident that you know, you’re doing what you think is in the best interest of your child.
Tatum: So before her diagnosis, what was your experience like with hearing loss? Did you know anything about hearing loss in children? Had you met anybody with a hearing loss?
Julie: I didn’t. I really didn’t have any exposure to hearing loss. I remember at the playground when I was younger, there was a family where there was several of the children with a hearing loss and they were using American Sign Language. Other than that that would be like my only exposure to anyone that couldn’t speak and used sign language. And the same for my husband too.
Wendy: So that being said, like not having the previous experience, what sort of got you through that time of figuring all this out and starting to learn about the process? I’ve heard from parents that it’s, it’s just very overwhelming in the beginning. It’s all new. You’ve got this new baby, twins on top of that, which sound, is overwhelming in itself. So what helped you and your husband sort of navigate the process early on?
Julie: Good question I I feel like my husband and I were always a really good team. We work together to solve problems no matter what it was. But and I think, you know, having twins, we constantly learned from the onset to like work as a team. But think I’ve always been the type of person that is doesn’t take no for an answer. And I’ve always sought out professional advice and seeking and problem solving my way through things, whether it be personal or career wise. So we both really just kind of put on our…seeking out what are all of our options mode because we were unfamiliar with hearing loss. And I knew right from the beginning that I wanted Clara to have the opportunity to communicate with anybody she wanted to. I just didn’t see her as having this limited communication. I wanted her to be able to play with the other kids in our neighborhood and communicate with them. And I wanted her to be able to speak her words and express how she felt to anybody. So I just immediately knew that I needed to find a way that she could become an oral communicator. And I think my husband and I both felt like, well, this is just what we need to do. And as a parent and every parent out there knows this is that you just put on your hat and you just say, okay, I am going to do whatever I need to do to get the right answers and to find the solutions that I think are best for my child. So we knew we had a vision of her being able to communicate with, you know, whoever she chose to and live in a community, you know, a world that is speaking so we just continued to seek out and ask questions to get the answers that we felt like would help us get there.
Tatum: Who first started talking to you about like communication modes and how early was that?
Julie: So that started with the ENT. Initially she had really talked about American Sign Language. She said, your daughter is, you know, severe to profound or severe, has a severe hearing loss and the ABR will tell us exactly what that is. But she said and we said, well, what does that mean? And she’s said, well, I think you might want to start looking at sign language and learning sign. And that my first reaction was like, well, wait a minute, you know, like, this isn’t what we were expecting. And, and she didn’t initially share with us that there was this whole oral communication mode, which I thought was a little alarming. But then she did say, well, there are children who learn to listen and speak and you know but you know, she’ll need hearing aids and so she didn’t really walk us through much. So then we went to Lurie’s, Lurie Children’s Hospital, and we had the ABR tests done. And there we met with audiologist and they gave us this packet of information that listed like all the modes of communication. So we looked and saw that there was like you know, options for American Sign if that’s what we chose. Or to work with her hearing device, which were her hearing aids, and learn oral communication. And then there’s total communication. So we felt relieved like, okay, now we know some of our options. And then we pursued the oral communication. I started calling just therapists to see, you know, who was a good fit and realized quickly that there were several in my neighborhood and I ended up starting with one of them and she was wonderful and she worked with Clara. But I was feeling anxious in the sense that I thought like this was moving really slow in the sense that I thought you know, we tried to do as much as we could at home. Of course, working with Clara and, and going over sounds. But we quickly learned that with hearing loss the child doesn’t really get incidental learning. So I could say to my son like “Oh, put the light switch” on and he could go over to the light switch whereas Clara had no idea like light and then switch and together. And so it was until we really arrived at Child’s Voice that she learned all of that incidental learning that she missed. She was able to learn through a play-based therapy and word association. That really made a huge difference then too.
Tatum: That’s really interesting to hear that back then the ENT was talking more about American Sign Language because I feel like today we hear from families that the oral route is emphasized a little bit more. So it’s interesting to hear that perspective. So a lot of the families I work with they feel, they talk to me about how you have to make this choice really early on for your own child. And some of our, the families I work with talk about how they wish that they could wait a little bit and have the kid make the choice. But as you mentioned that everything happens like before age five. You need to get everything moving really fast and it’s awesome that you got everything moving as fast as you did. How does it feel to hear your mom talking about this period of time where she’s making this choice that’s going to go with you the rest of your life?
Clara: I mean I’ve heard my mom talk about this decision-making process for a lot of times now. But whenever she does talk about it kind of talk about it I feel like I’m hearing it in a way that I would have kind of gone about it too, like with making sure I know all my options and then which one seems to be like the best outcome. And I really think that like she did it. My parents both did it in a way that like I would’ve taken it on and I’m really glad that they made the decision they made with me going into oral communication and having cochlear implants and making sure I had the best way to be able to integrate into like a hearing community and be able to communicate in a hearing world. Because otherwise it would have been very late for me to try to get cochlear implants, try to learn how to hear all of the speech and the sounds and interpret what I’m hearing a lot later. Because all of that comes so much easier when you’re doing it with a child and you’re making sure that they are able to connect things and then as they go on later in life, it’s all just effortless and more natural for them. And so I think that’s really was a great decision my mom made and parents.
Wendy: That must be good to hear.
Julie: Yes it is.
Wendy: So I have a question about this issue of incidental learning that your mom mentioned, we talk about that a lot with young children with hearing loss, that it’s hard for them to learn language incidentally. And parents will often ask, well, is it going to be like that forever? So I guess that’s a question to you, Clara. Do you feel like you pick up information incidentally, sort of without really having to focus on listening? How natural is that process for you?
Clara: I would say, I always thought growing up like maybe learning new things was kind of just the way I was doing it was kind of how everyone was doing it. And then I kind of realized like people do like tend to pick up more and then I kind of need to hear something maybe a few more times and then it will register like, oh, that’s what that means. And that’s how I use that in a sentence and stuff. But I really do not think that it’s made it very different for me. I’ve just like kind of need to hear it more like maybe more intentionally learn what like a word is. But yeah, I just needed like kind of focus more on that kind of thing. Yeah.
Tatum: It sounds like you’ve learned like what works for you too, so it’s probably gotten easier over time.
Clara: Yeah exactly
Tatum: Now that you’re an adult and can figure out what works best for you.
Wendy: That’s so helpful. I think it’s really helpful for parents of really young kids, which is what Tatum and I work with to hear from someone your age, you know, what’s it like to be a young adult with a hearing loss and cochlear implants. And because like you said, it’s, there’s so much unknown when kids are babies and it’s amazing to hear what some people’s outcomes are when they’re young adults.
Tatum: So it sounds like you were always on board, Julie, with listening and spoken language, cochlear implants. Was there ever anything that you were hesitant about? Like the surgery or any aspect of getting a cochlear implant?
Julie: Yes, definitely. So we started exploring the cochlear implants and I mentioned, spoke to a couple of different surgeons. It’s a serious surgery and we were looking for a surgeon that was an expert and had done many surgeries cause that was where our comfort level was. But we recognize that there was always potential complications with surgeries. So you have to take that into account. But the fact that this particular surgery was essentially going to eliminate whatever hearing she had at the point. So she was severe to profound diagnosed. She could hear loud sounds, but we knew once the cochlear implant went in that she would potentially lose the little sound that she had. And then she had enlarged vestibular aqueducts, which was a progressive loss potentially to, so her left ear was worse than her right ear. So we decided to do her left ear first. But we had considered maybe doing both ears, but back 15 years ago insurance companies only wanted to do one ear cause I guess they felt like you were capable of just hearing with one ear instead of two. But that’s a whole ‘nother issue. So we evaluated all of the scenarios and we felt like the cochlear implant was going to be the best option for her because it would give her access to all those sounds she wasn’t hearing. So at that point we felt confident in the surgeon and the success of the surgeries and the very limitied possibilities of not successful outcomes I guess that we felt like it was worth moving forward to give her this option. So we were nervous and we were very happy with the success of her first surgery, the doctors at the hospital and even the nurse staff was just amazed at how brave she was. And she didn’t cry. And she was very easy to work with, never screamed. They said they’ve never worked with a child that was more trusting than Clara. And of course that made me cry because it came out and she had this, you know, big wrapped, you know side of her head that was in gauze and, and she came out of it as like a champ. And then went through the whole process of, you know being turned on and her hearing being activated, which was just like amazing and so exciting to watch her expressions. And hear her first like real sounds of speech cause she was getting such little speech sounds with her hearing aids that her speech was really suffering. So it was amazing to watch the transition within a couple of years of the cochlear implant and her sound being so clear. And then at seven she received her second implant, we realized that the residual hearing she had just wasn’t worth not giving her the bilateral ability to hear with the cochlear implants. So we, she had her second surgery when she was seven and after the surgery, same thing, everybody was complimenting how well she did. She was so brave. And after the surgery we are on the way home and she asked if we could go to Subway. So I was like, okay, you’re going to snap right out of this from the anesthesia and everything. She was hungry and we got home and she ate her subway. And in fact the audiologist had me send pictures of her because she’s like, I have to share this with my other patients so they can see like that the bounce back can be pretty quick. So
Tatum: Clara, so at seven, do you remember that surgery then?
Clara: Yeah, I do remember that one, definitely more. I remember just like waking up and, I had my little dog stuffed animal and that was all I needed to be happy at that time.
Tatum: That and Subway.
Clara: Yeah, that and Subway.
Tatum: Do you remember like the lead up to that surgery, like deciding to get an implant? Did you guys talk about it together?
Clara: I remember we did talk about it a little bit and I just remember being really excited and like I would tell my friends like, oh, I’m going to get another hearing aid. And I was really excited about it.
Wendy: What about the initial turning on of the device? Do you remember what it sounded like and what that process was like?
Clara: Yeah, so I was able to have like the comparison of like a new cochlear implant. And when you hear that you’re not like used to the new different like distinguishing of sounds with your new ear compared to my other ear, which I had like worked so hard on. And it did sound like more kind of technological and robotic. I remember kind of talking with you about that. And then it was just a little uncomfortable at first, but then I just kept wearing it and working with it and it now sounds almost the same as my other ear. Like I don’t notice a difference. But before I used to be like, oh, like is ever going to sound the same? And it like totally did. I just worked with it.
Wendy: And what does that sound like to you? A lot of families will ask, well, does it sound mechanical? What is my child going to hear? So what, what does it sound like to you?
Clara: It’s hard, you know, just kind of when you can imagine like robotic is like, I guess the closest I can get to it. And it just like sounds more like maybe just different pitch, not like as fluent and like as I just listened to it more and I would wear it more often, it would sound more closer to my left ear cause my right ear was a new one. So then they just kind of started to flow together.
Wendy: And what does it sound like now that they’re flowed together? I know that might be hard to explain and your perception of sound is different than ours, but do you hear that robotic speech now? What does it sound like to you now?
Clara: I don’t hear any sort of robotic speech. It sounds very normal to me. I’ve always wanted to see if I could like compare what it sounds like. But I don’t obviously know the difference. To me it sounds normal and every day just it’s, that’s what I hear. So like there’s nothing to compare it to. I’m not like, oh like it’s, I wish it sounded like this because this is like the best I can get. And it’s like good, really good for me.
Wendy: It sounds like you go to concerts, you enjoy music, you know, how, how do you listen to music?
Julie: I have a speaker and I listen to music at concerts like anyone else. On my new hearing aid I have Bluetooth so I can actually listen to music straight from my phone to my hearing aid. And it just, it sounds like I’m listening to a speaker like right next to my ears or something. It just sounds very clear and awesome.
Tatum: Do you ever like listen to music in class cause no one would know?
Tatum: Or no, are you a good student?
Clara: Honestly, I have. Yes.
Tatum: So, my husband knew knows somebody with an implant and they were talking about how, I’m sure you’ve never done this, they like cheated on a test once cause they like just connected. Don’t do that. Don’t cheat in college.
Clara: Oh wow, no I’ve never done that. I’d be too frightened and scared I was going to get caught or something. I’d be like shaking while doing it.
Tatum: Yeah, it’s much better just to learn the information. But, I guess if you were at a really boring class you could just put on like audible or something.
Clara: Yeah, usually. Yeah. well not the cheating part, but usually…
Clara: …Usually If it’s like a quiet class, like kind of boring, I would like can just like listen to music or something. I don’t abuse the ability to do it though.
Tatum: In the background. You probably don’t want to say this in front of your mom. Okay. So we’ve talked a lot about your devices, the beginning but we haven’t touched on this yet. So Cochlear helped connect us with you guys since you use Cochlear devices. So how did you go about making that decision, Julie, like choosing between the manufacturers?
Julie: We had again evaluated the different manufacturers at the time. And I since we are at Child’s Voice school, I was able to talk with a lot of the other parents who had children with cochlear implants, which was another amazing aspect of the school was that it was just wonderful networking and meeting other parents and being able to share with somebody what you’re going through and they really get it, so that was really important. And I had only really heard very positive things about Cochlear. And my audiologist was also very helpful in establishing my confidence I think in Cochlear too just based on her experience when I was, you know, specifically evaluating Cochlear, she had nothing but great things to say about them and that they were very progressive and appeared to be really looking in the future and trying to continuing to improve. And then at the time I think it was the Nucleus 24 back in 2003 and part of my decision was that there was going to be this advancement and that there was only going to be certain amount of the electrodes that would be fired up and then there would be reserved for all these other advancements. So I felt like it was a company that she could grow with and that it was going to be changing and honestly like to think about where we are today, even with her device versus back when she was three is like night and day. She has been able to over the years, I think she’s upgraded like four different times. The device, the external device, the internal device has been compatible. But she has been able to benefit from so many of the upgrades and most recently the Bluetooth, which she just mentioned. And also the benefits of just being on the phone with Bluetooth has been tremendous for her. She’s so happy. And there’s also an aqua device now so she can actually swim with her friends, which was very challenging in her early years of, five to 10, 13 years, whatever range, you know, obviously the challenges of being at the pool without being able to swim with your device. When she was little, we tried to, you know, create our own ways to make it waterproof, but we won’t tell anybody else that.
Tatum: And we would not recommend that.
Julie: No, no, no. And it didn’t really necessarily work all the time. So the best part of it is that you don’t have to worry about that now. It’s got, they have the, the technology, they have the solution. So that was part of really our decision making. I just felt like, you know, it was the most confident with them and I’m very happy with our decision and they’re very responsive. It’s, it’s been very easy to work with. The turnaround time is amazing. Within 24 hours I can get a new device or if something breaks or a coil’s not right. The people are always so helpful and I’ve just been extremely happy with the service.
Wendy: What would you recommend to other families that are trying to make this decision of device selection? What would you tell another family to do to try to help them make their decision?
Julie: Because all the companies are changing and, and you know upgrading again, just doing a thorough evaluation of each company and the size of the device, the compatibilities, the future upgrades, the options available. There’s lots of accessories. What works best for you. Maybe one company has something another doesn’t. I would just evaluate all of those things and then you know, decide what you feel would work best with your child.
Tatum: Clara, so this is kind of similar to making a decision about communication mode, getting an implant, your mom and dad also picked something that you’re going to use the rest of your life. So you’re now working with Cochlear for the future? How has your experience been with the company and your devices?
Clara: I’ve just been very happy with like, you know, the turnaround time. It’s very annoying if like something happens with your device and you don’t want to like not be able to have the full use of it for a long time. But it would be like within the next two days, I would instantly get something that would help it just be the normal device again. And then also all the upgrades have been great. Like they’re continuously upgrading them and making it better than I could’ve even imagined. Just there’s different things that you kind of think like, oh, like this would make it better and then they do it. And it was just really awesome that that would happen because I’m confident that they’re just going to keep on improving as I grow up. And that’s just, that’s awesome.
Wendy: How much of your device do you manage now as opposed to, you know, when you were young, your parents probably did it all for you, changed your batteries, made sure nothing was broken. How do you manage that now?
Clara: I have like all the stuff in my room and I mean, growing up I used to like have to be like, oh like mom can I have this? Where’s this, what do I do with this? And they had everything there. As I grew up, I like had to become more independent with it. Before I used to like rely on them to bring my batteries places and stuff. But if that got messed up, I realized it’s on me to do that because it affects me. So I learned that I had to really just take it upon myself to make those decisions. Especially since, I dunno, it’s so part of me that like, just like any other child who has their own thing that they need to take upon themselves, I just needed to like take that and be independent with it.
Tatum: And have you become independent like if there is something wrong with the device, do you contact Cochlear and set that up or?
Clara: We kind of just like work together. Like, sometimes I’ll do it, sometimes I’ll ask my mom to do it. But yeah.
Julie: Like recently when you went on your trip, you took it upon yourself to call and ask them questions about things you were curious about.
Clara: Yeah, I was traveling internationally, so I was wondering if there was anything at the airport I needed to like worry about or like I was gonna encounter and so I called them and Cochlear was really easy. They were just like talking with me and it was really nice. So yeah I called them and was making sure that that was gonna be good.
Tatum: Was it good? Did you have any issues?
Clara: No, it was fine.
Wendy: Around what age did you start encouraging Clara to take responsibility for her devices? Was it a process?
Julie: Yeah, I feel like it was mostly in high school. Because she became more independent in high school. She was on several sports teams and service clubs and you know, out and about in the community for 12 hours a day. I think it was just a process of like, let’s make sure you have x, y, and z before you leave. Then then over the years she just took it upon herself to make sure she had all that as she mentioned, you know, there was times when she might’ve forgotten her backup batteries and then batteries died and she’d be like, “Mom, my batteries died. Can you bring me some batteries?” So, she, you know, I think over the course of like the four years, you’ve really just independently took it upon yourself now to handle all that. I mean we’ll talk about like ordering batteries, cause of course I’m paying for them, so I will order them, but she’ll come and say, “Mom, I need to order some batteries” or she’ll order them and then, you know, she’ll, you know, take my credit card and order, or whatever it might be, or microphone covers or whatever it might be. But yeah, so I feel like it’s, you know, it didn’t happen overnight, but…
Clara: Just kind of as things like mistakes would happen where I didn’t have anything, I just realized like, I can’t just rely on you to do everything for me so then it was on me to do that.
Tatum: That’s wonderful that you intentionally helped Clara become more independent because now you’re going off to college and it’s going to all be on you.
Wendy: That’s exciting. What kind of preparations have you made about going to college?
Clara: I think there’s some things that just are gonna transfer over and it’s not like it’s going to be anything different, but for my like accommodations and help with my education services and stuff at University of Illinois, which I’m going to be going to next year they have a program DRES, which is disability resources, education services, and they have like a lot of great accommodations there. So we made an appointment with them and I’ll be having someone who will help me if I don’t have any accommodations that are being met from my professors. And so that’s, I would say the biggest transition. And that’s already been taken care of and I’ll be supported in that way. So it’ll be good.
Wendy: Did you specifically pick the University of Illinois at Champagne for any particular reason?
Julie: Well, Clara can talk to that based on her major.
Clara: Yeah, so I’m going to be studying bioengineering and basically they have a really good program for the engineering school as a whole it’s just a very good school. And so that was one of my top schools I was looking into. And really the whole, like for my hearing loss that kind of just came afterwards cause we just figured hopefully the school has good accommodations and usually they do. So that wasn’t really into consideration, but more my major, the proximity of the school. And just kind of it all like really fit together.
Wendy: That’s incredible to hear that like that was your driving force in picking a school is bioengineering, not having anything to do with your hearing loss, but what you want to do for your career, in your life. That’s amazing.
Tatum: What do you even do with that? *laughs* What kind of careers come from that?
Clara: You really can do like anything with it, consulting research. You can even go into medicine still like so I like how there’s a lot of options open for it and I’m going to really find out what specifically I can do while I’m studying it. I haven’t really like decided. I just know that I really like that general fields and I will figure it out later.
Tatum: It sounds amazing. When I first entered school I was like, what am I doing? You sound like you have more of a plan than I did. So you have a good start.
Wendy: I think it’d be cool to hear from both of you guys your experience at Child’s Voice, both as a parent and then if you remember anything about it as a student. And I think the one big thing that Tatum and I are interested in is like, the kids work so hard. We perceive that as the kids work so hard. So we just talked about college and sort of where you are now and where you’re going, but let’s go back for a minute to where, where you started. So back to Child’s Voice. It sounds like you started in 2002 and graduated in what year?
Julie: 2007. Clara was going into first grade.
Wendy: I started in 2006. I remember overlapping just for a little bit. So do you remember Clara anything from that time at Child’s Voice? I know you were young, but what was that experience like for you?
Clara: I just remember the car pools there and just running into the school and being greeted by everyone and just how amazing all the teachers were. Everyone was so nice and welcoming and I just like, it felt like a second home and all of the other children were like me. So we were all like, just working really hard. And that was kind of just how it was. It wasn’t like, oh, like I’m working extra hard cause all of us were working so hard and then we also had a really great balance of singing and playing, so it was really still totally fun. And I remember like recess and all the little fun events we had like water day. And I remember they would bring like the zoo to us and they, we would go into like the big auditorium and would have like different speakers and singing. I just remember a lot of like constantly having fun. I remember just smiles around me and just everyone was very supported and it really gave me a lot of confidence. And I really graduated with a lot of confidence in myself and my abilities. And I didn’t end up needing to like question that at all when I went into mainstream schools. During my vulnerable times of learning all that I learned at Child’s Voice I came into mainstream school confident and knowing like I am just as smart as everyone else in this classroom and even despite my struggles, like it’s, I’m still going to be learning just as much as my other classmates.
Wendy: That’s a really interesting perspective for you to say that you didn’t feel like you were working as hard because all the other kids were doing the same thing. Julie, do you remember, I’m sure you, of course, you remember that time, but what do you remember about it?
Julie: Yeah, so I remember so many wonderful things. Even when she first started, I remember her the two and a half, three-year-old stage of just learning again words and being so excited about all the new words she was learning and then turning those words into phrases and then phrases into sentences. And the thing that really was just a neat experience was that they were, I always felt like there were so clever in teaching the kids language. So Miss Janette was the teacher at Child’s Voice for years. She had a Golden Apple award and just was wonderful. And she had taught them words through singing. And so, Clara learned like all her vowels through singing through that special song that they had. And every once in a while, I still to this day catch myself singing that song. It’s so funny because it stuck with us. We would sing it all the time. We had a poster at home and we would go through the, the sounds. So that was just really just a neat experience watching her learn through song. And then the shopping experience… So Elsa would have them shop and so she would set up a grocery store in her classroom and the kids would shop and then they would have a list of items, they’d pick it out. And it was just adorable. Like Clara just always had so much fun and she was learning so much and I felt like she didn’t even realize how much she was learning because it was such a, you know, a play based environment and you know, just loving and very caring and she loved her teachers and she would have pictures of her classmates and her teacher in a room all the time. So I felt like it was just a really such a positive experience. And we learned about advocacy, how they taught Clara advocacy. They taught us parents advocacy. We learned our rights the disabilities act. We understood how to fight for you know, her rights in the classroom, in mainstreaming. It was such a great environment for parents because we were educated, we had networking with other parents, and we had the support and then our child was being taught in such a wonderful manner in and learning so much. So it was just such a very positive experience overall. And then when we mainstreamed into the school system, we chose a private school for Clara, a private Catholic school in our community versus the public school. And her twin brother was going there and she went to school with her twin brother and her friends from the community. The school was wonderful and Child’s Voice helped us do in-services to help explain and educate the teachers on Clara’s hearing loss and how to work best with her and her accommodations. And Carrie would come out a couple times a year to just check and make sure that things were going right in the classroom and Clara was comfortable. And her teacher was working with her IEP. And we also had our hearing itinerant, which was wonderful, Gloria, she worked with Clara since she was mainstreamed into high school. And that relationship was really special and very helpful and they were great in the mainstream environment and again supporting and helping advocate that was really important for her success.
Julie: Yeah, I think I really got a lot of the importance of advocacy because that’s just so strong to have to be able to say like, “oh, like could you repeat that?” Or like,” or like “I do need more help with this.” Talking to your teachers. And I even took that advocacy with me in high school and I would even tell my friends you need to ask your teacher for more help, maybe more time. I grew up being told advocate for yourself, advocate and that word, I just knew so much earlier than I think some people. And you don’t really think to like advocate even if you may not need it. It like, I just learned it doesn’t hurt to try and like to ask because you never know what doors could open for that. So I think that was like a really big thing I did learn from them.
Tatum: Yeah. That’s amazing. I often think that the kids coming out of Child’s Voice have much better advocacy skills than I even did in college. Like I had to learn that over time in college, sometimes I still don’t advocate for myself. So that’s so funny that you’re teaching your other friends to do it.
Wendy: Yeah. That’s amazing.
Julie: Even her twin brother.
Tatum: So how old was Clara when she transitioned out of Child’s Voice then? And how did you know that she was ready to transition into the mainstream?
Julie: So we decided along with Child’s Voice staff that she should do kindergarten at a Child’s Voice. Based on all the testing, I can’t remember what they called them.
Wendy: The TASL level.
Julie: Yes, these different levels of showing where a child is. And she up through kindergarten was doing phenomenal and she was on pace, but there was definitely some gaps and we felt it was the best interest of her to be at Child’s Voice for kindergarten versus being mainstreamed at that point so that she could really learn some of those critical reading and math skills to prepare her for first grade. So that was, I thought, a great decision because by the time she got to first grade, so she was seven and she entered first grade in the mainstream, and her teachers were just blown away. They were just amazed at her vocabulary and her articulation and her math skills and science skills, which we’ve found out is just extremely strong for Clara, science and math are just her thing that comes easy to her. Well, of course you work hard at it, at the same time, it’s just a more natural interest for her, so she learns it quick. And I think that was, m testament to the or the decision we made because she was completely ready to mainstream.
Tatum: Do you remember that time, Clara?
Julie: Yeah, I remember cause I was very excited to finally go to the same school as my twin brother. So that was really exciting too. I do remember graduating and having my cap and gown as a young little girl. Yeah, it was really a cool experience to finally have such a great accomplishment and then be going into a mainstream school with my brother and the friends that I had in my community. Yeah, I just felt like, another year of school just everyone would graduate from Child’s Voice and go to mainstream schools.
Julie: Yeah, I feel like they prepared you well for that too.
Clara: It wasn’t like a scary thing to do.
Julie: Right. Carrie did a great job teaching the kids, this is what it’s going to be like in the classroom, you know, with your hearing peers and this is how you need to ask for help and let’s practice that. And they did like a lot of role modeling, so I felt like you just were extremely prepared.
Wendy: That’s great to hear. Yeah, that’s still a big focus of the program now is sort of preparing kids to move on to wherever it is that they’re moving on to. They do the self-advocacy. They also do like a kindergarten mainstream experience where we partner with a local kindergarten and our kids go over there for an hour every month or so, and then their kids come to us. Because they’re going into classrooms with 25 children at Child’s Voice our biggest class is 10. So it’s a really big shift. So we do whatever we can to prepare everybody for that.
Tatum: And then when you transitioned into the mainstream, were are you the only person with hearing loss at that school?
Clara: Yes, I was.
Tatum: What was that like going from Child’s Voice where everyone or everyone your age had a hearing loss into the Catholic school?
Clara: I don’t know. I don’t recall it being strange or anything. There was no hesitation to be in a different environment where I wasn’t with people who had no hearing loss. I think, when you do have family, no one has hearing loss in your family or just in your community and we were used to socializing with everyone in my community too. It just didn’t feel out of the ordinary. So it felt comfortable.
Tatum: So just over the course of Clara’s life what kind of like positive experience have you guys had related to her hearing loss? And what kind of challenges have you guys experienced related to your hearing loss as she’s going from middle school, high school, growing up?
Julie: Well, I think with any of the challenges, I felt educating people on hearing loss and just getting them to understand the best learning and listening environment for you. It wasn’t really challenging. But just having to really be advocating all the time through school. Like every year there was a new teacher and teachers and new people that needed to understand her hearing loss to make sure that she was in the best listening environment, So at the pool and or just people not realizing maybe she had a hearing loss. There was so many people that would talk to Clara if she had her hair down. I would say, “yes, she’s hearing impaired” and they say “what? I would have never suspected that.” So I think people have in their own mind like what that looks like. And even at the pool one time when she didn’t, she couldn’t go in the water with her hearing aids, she’d been talking to lifeguard and she walked away and she’d come out of the water talking to the lifeguard. She walked away. And so I said to the lifeguard, “oh, could you make sure you like, you keep an eye on her just because she doesn’t have her hearing devices out in the water and she may not hear you.” He’s like, “wait a minute. I just had a conversation with her. How did she like talk to me.” “Well, she lip reads.” So it was just again, the whole education process of having people recognize, you know, what the best way to make sure that Clara is able to hear everything that they’re saying or communicating.
Clara: Yeah. I guess it was just, it’s kind of the continuous, like it doesn’t end that you need to advocate for yourself. And I needed to, every new teacher I had, I needed to like explain. Yeah. Like I’d prefer to be in the front of the classroom or like maybe if you repeat something that someone saw spoken in a class room says that would be very helpful for me. And just kind of working with everyone I met. And meeting new people who talked different. Maybe there were a lot of people who like were soft spoken and I like get so annoyed and be like, “Oh, like you just need to talk better.” Every little experience I had, I learned how to find a good way to deal with it and I learned a better way to take it on next time I experienced it. Different environments where it was really noisy and restaurants, playing sports and being in loud gyms, being with my coach in like a loud gym too, every little experience was just like a continuous progression into making things less challenging. But it’s always like a continuous thing.
Julie: And on the positive side, I feel like your other senses are extremely heightened and her sense of smell
Tatum: Yes, I’ve heard that a lot.
Julie: And taste, right? We like our food, we’re foodies. And I feel like Clara’s hearing loss has made her such a compassionate person. She’s got a ton of empathy. She’s like such a loyal friend. She’s a great listener, which is just awesome. And she’s just a really special person. Everybody who meets her feels that. *with Emotion*
Clara: Thanks mom.
Wendy: It sounds like she had a wonderful role model and a great environment to grow up in. That doesn’t just come naturally, that comes from the environment that create, you create for your family. So it sounds like all has kind of come together.
Clara: Yeah. That’s all there with you, being in the family.
Tatum: You guys are going to make me cry in the therapy room.
Wendy: It also sounds like Clara has become a role model for her friends. You know, teaching them how to advocate for themselves, even though they don’t have a hearing loss. You’ve just become such a strong young woman. It’s great to see you be a role model for so many people and you as a parent showing other parents that your hard work does pay off and just to sort of trust that things will be okay. Trust your instincts, trust your child, trust yourself.
Wendy: Those are hard things to, to know when you’ve got a six-month-old baby that you’re thrown this curve ball of life. So thank you for, for sharing all this with everybody.
Julie: Sure. It’s important to stay optimistic and just you know, continue doing what you need to do to get the outcome you want. That’s the most important thing.
Clara: And just like us working together, we really kind of did this together and I had like a lot of support, so it was easy with that.
Julie: I’m glad you feel that way.
Tatum: So before we wrap up, Clara, what are you looking forward to most about college?
Clara: Well I’m just really excited to be in a new environment and try new things. And it was really fun going into high school with a new environment, making new friends. And I’m excited to do that again. I still have such amazing best friends from high school. We’re just so supportive of each other. That I’m excited to make more new friends and to also learn so much educationally too. It’s gonna be just a really fun time to like be doing what I’m passionate about and then also be surrounded by a lot of new people and just learn more about who I am too.
Wendy: Yeah. We can’t wait to see what you do. We’ll have to have you back on the podcast in a couple of years to tell us about all of the great things that you’re doing in college.
Tatum: As a bioengineer.
Tatum: Julie, are you nervous about the transition?
Julie: I think as much as like any parent whose sending their child off to college, I’m going to miss her a ton, but I’m so excited for all the adventures that she’s has awaiting her and I think she’s gonna love college and I’m excited to watch her find what she really wants to pursue. And, she’s prepared. She’s always been very strong willed and independent to a large degree, so I feel like she’s gonna be able to make this transition as easy as it can be for any college student freshman year.
Tatum: It’s a scary but exciting time. But it sounds like you’re really prepared, so.
Julie: Yes. And I’m going to jump in the car and come visit her.
Tatum: It’s only like two hours ish?
Clara: Yeah’ it’s like two, two and a half hours.
Tatum: That’s how, I was an hour and a half from my family and I felt like it was a good distance for your first moving away.
Julie: Yeah right, yes.
Wendy: And what about your twin brother?
Clara: He’s actually also going to University of Illinois, so…
Wendy: That’s great.
Clara: It’s a very big school. But we’ll still be able to connect every once in a while.
Tatum: That’s amazing.
Tatum: So final question. We like to ask our guests just for general advice. It could be for families, professionals, anything that you feel you want to share with our listeners.
Julie: I would just say if you are exploring options for someone in your life that has a hearing loss and if they’re a child that you absolutely have to visit Child’s Voice school. It will change your life forever in the most positive way possible. And if you are an adult or a teenager that is considering cochlear implants or suffering from a newly diagnosed hearing loss there’s so many wonderful therapists out there and speech pathologists that stay optimistic and you can get the help that you want. It’s out there. You just have to seek it out, talk to professionals, talk to anybody who has any knowledge in the field and you’ll find your answers and you’ll find your outcome.
Clara: I would say as a person with hearing loss or a different disability I think you need to really take advantage of all the opportunities you have. I think sometimes like growing up, I’d be like, oh, I’m too embarrassed to like use this extra thing I get to have because like it makes me look more different, but it’s really just so worth it to make yourself have get rid of that disadvantage you have because no one really cares anyways in the end. Everyone has something different about them too. And I think you just really need to make sure you are using all the opportunities because you need to care about your success too. And you just need to look out for yourself, you know, not care about what other people are thinking.
Tatum: Why don’t we wrap things up there. Julie and Clara, thank you so much for joining us.
Julie: Thank you for having us.
Clara: Yeah, thank you so much. This has been great.
Tatum: Thank you for fitting us into your busy summer schedule too. When you first sent me the dates, I was like, “Uhhh.” I’m glad we found a time. I know you both mentioned that if someone wants to get in contact with you, they can do that by reaching out first to Child’s Voice. So we’ll share our podcast contact info in a second. And then listeners, we’d love to hear from you so we have contact info, more info that we’ll be sharing, but if professionals, families, if you have any thoughts on the episode, we love getting feedback.
Wendy: If you’d like to reach out to us, you can find us on Twitter and Instagram. I’m @wendydetersSLP and you can find Tatum at @tatumfritzSLP.
Tatum: You can also email us at firstname.lastname@example.org and you can find episode show notes and archived episodes at our Child’s Voice website, childsvoice.org.
Wendy: And if you’re interested in learning more about Child’s Voice, Child’s Voice is also on Facebook as well as Twitter and Instagram with the handle @childs_voice, no apostrophe.
Tatum: And as always, we release episodes every other week on Wednesdays. So be sure to look out for our next episode in two weeks. We’ll see you next time. Bye.
CV Students: BYE THANKS FOR LISTENING.
Jessica Pearlman: Thanks for listening. Be sure to join us for our next episode in two weeks on September 4th. Wendy & Tatum will be interviewing Dr. Nancy Young, who is a cochlear implant surgeon at Lurie Children’s Hospital in Chicago, about her experience as a surgeon and the changes she’s witnessed in the cochlear implant surgery over time. It should be a great discussion! Don’t miss it!