Episode 37 Show Notes  

(Read the episode transcript below)  

On episode 37 of All Ears at Child’s Voice: A Hearing Loss Podcast, Haley and Elise are joined by talked to Kristen Van Dyke, Executive Director for the Foundation for Hearing and Speech Resources. Driven by a keen focus on early childhood challenges due to the income and health disparities, she works to create programs that address all the needs of children living with hearing loss. 

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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. 

 

Haley: 

Welcome to All Ears at Child Voice, a podcast discussing all things, hearing loss. We aim to connect parents of children with hearing loss, with the professionals who serve them. And now to start the show, 

Elise: 

Welcome to All Ears at Child’s Voice podcast discussing all things, hearing loss. We aim to connect parents of children with hearing loss, with the professionals who serve them. I’m Elise Sundberg. 

Haley: 

And I’m Haley Gubbins. Today on the show, we talked to Kristen Van Dyke, Executive Director for the Foundation for Hearing and Speech Resources. In 2015, Ms. Van Dyke transitioned into the position of a Executive Director after having served as a board director for eight years with a master’s in public policy from the Harris School at the University of Chicago, Ms. Van Dyke brings both professional expertise and personal experience to the position. Driven by a keen focus on early childhood challenges due to the income and health disparities, she works to create programs that address all the needs of children living with hearing loss. Kristen, we are so excited to have you on the show. 

Kristen: 

Well, thank you ladies. I’m so happy to be here. What an honor. 

Elise: 

Before we jump into the main discussion, we like asking each of our guests to share a little story from the past week. It could be anything to help the listeners learn a little something about you. Does anything cute, funny or heartwarming come to mind? 

Kristen: 

Oh my gosh. I have two boys who are 15 and 13. So every day is cute, funny, heartwarming, stressful, interesting. My younger son had broken his thumb over the summer and we found out that he has another stress fracture in the same thumb. So he’s been walking around in a splint once again and bemoaning his fate as a lacrosse player. It’s certainly putting a dent in his playing. And I have two dogs that are crazy and outta control and want to have all the attention in the world. So they’ve actually been walking around to lick his splint so that they can get some more attention to it. It’s very strange. 

Haley: 

How did he break his thumb? 

Kristen: 

Oh, in the lacrosse game. 

Haley: 

So it broke and then re-broke. And now he’s paying the price for it. 

Kristen: 

Yes. And now the dogs are being very empathetic to him and want all the attention and are trying to make it heal a little bit faster, which I think is quite lovely, but I don’t think they’re doing any good. 

Haley: 

At least they’re cute. Right? They bring a smile to your face. Exactly. 

Kristen: 

At least they’re trying and they made him smile. So that’s a plus. 

Elise: 

Well, that story is actually an excellent segue into talking a little bit more about your family, dogs included. Could you tell us a little bit about them? 

Kristen: 

Sure. We live in the city. We’ve been here on the north side for almost 17 years now. I have two boys Max, who is 15 and a half and Jackson, who is 13. And both of the boys play lacrosse. We’ve got two dogs, Teddy and Norman. And they’re crazy Labradoodles. You know, things are pretty busy around here in between school and lacrosse. And Max, my older son is starting on the college search process. I can’t believe it. It seems like just yesterday he was a little bitty baby. And now suddenly he’s this grown person who’s wandering around the house and looking at colleges, it’s just been great. David, my husband and their dad and I have loved the experience of raising the boys in the city and it’s worked out real well for us. So we’re excited to see kind of what the next couple of years bring about. 

Haley: 

That’s so exciting. That transition period. I know as a mom, it’s probably a little bit scary, right? I remember doing that, but it’s, it’s a very, very exciting time for a 15, 16 year old. You mentioned your two sons, but you left out a part that we may be interested in talking about. So can you go into little bit more. 

Kristen: 

The whole reason why I’m probably here. So Max, my older son, the 15 year old who’s in the college hunt, and I think he’s looking very far away to your point. He’s ready to go. He’s ready to launch. Max was born profoundly deaf. He was diagnosed thanks to the Illinois newborn hearing screening test. So a little piece of legislation that requires all newborns to have their hearing tested before they go home. And lo and behold, he failed the test and we were referred over to Lurie Children’s Hospital to have a follow-up. And they confirmed that he had hearing loss, as you can imagine, we were floored. Neither David nor I had had any kind of hearing loss, as far as anyone could remember on either side of our families. And we just didn’t even know what to do. So like any other parent in shock, we took to the internet and started searching the internet to see kind of what our options were, what this new uncharted territory was going to be for us. Mercifully, we stumbled on reputable sites that talked about cochlear implants, and we got ourselves into starting right away over at Lurie Children’s as quickly as we possibly could to start the process, cause there’s a process and it takes time. It was really a difficult period for us as it is for all parents. Suddenly you have this beautiful baby and someone says, oh wait, there’s something wrong and you need to address it and you need to jump on it right away. And there isn’t a lot of time to kind of go through what I call the “mourning period” where you’re trying to adjust and reconcile what you envision your baby’s life was going to be. And the hurdles that you were going to be facing and the trajectory that you had to select and the path you had to go down. It’s really very life altering. And I think for us, we really had to lean in hard on our family and our friends and our community to support because we didn’t know anybody else who was deaf. So we all kind of learned it together. Everybody was on the same trajectory and we were all trying to find the information that we needed to help Max be successful. 

Haley: 

That’s something we hear a lot actually, when we do these other podcasts, the way you’re talking about it. Reminds me of how (guest) Melissa Hyder was talking about it. There was no history, same thing, kind of just scouring and you didn’t have a moment to process what was happening. But on the flip side, now he’s this 15 year old looking at colleges. So like, look at that, look it how life works. 

Kristen: 

And Max is occasionally tired of being trotted out as the exemplar of success at his age. But everyone, all parents go through that morning period where you’re sad and you need to figure out what to do and you need to make big decisions within months of gathering this information. And I’m thankful for my background, for my education, where we really focused tight on early intervention, early action for kiddos. So it resonated with me that we needed to make a choice, make a decision, put a flag in the sand and say, “okay, unrelenting, we’re gonna get there. And this is what we choose for our son.” We chose to have Max bilaterally, cochlear implanted. Thank goodness we live in a city where we have access to nothing but the best service providers and surgeons and audiologists that ended up being truly a saving grace for us to have that level of service provider available for Max. For us, we knew we wanted Max to be an oral communicator. I wanted him to hear me say “I love you” in my voice and to sing a song with me and go to classes with me and be able to hear his friends whisper in his ear when he was in the lunchroom. You know, those are all of the things that I kind of projected out. So when we were going through the candidacy process for the implant and it is a holding period, we were solely focused on hoping that he would be a candidate. He could go in, he could get the surgery. He was, he ended up being, I think Max is the second youngest bilaterally implanted kid in Illinois at the time. So he was six and a half months old. David and I really just said, we believe in the science. We believe in the technology. We trust the doctors. We trust the audiologists. They know far more than we do. We’re gonna trust the process, trust them. And we’re just gonna jump in with both feet. And we did. 

Elise: 

I was thinking about if he’s 15 now, where was the technology then? How was the process? How early could he get implanted? It’s a very big level of trust and respecting everyone on your team and them also respecting your choice as parents and learning everything you needed to in order to get that done. 

Haley: 

Yeah. And in six and a half months you made that decision. 

Kristen: 

Elise like you said, it was really trusting the experts. We were so far out over our skis. We had no idea what we were doing that we really wanted to trust the people. And we surrounded ourselves with a team. Max had a great team. Sally Tannenbaum was his original auditory verbal therapist. And I’ll never forget being on the phone. And she was like, “it’s gonna be okay, trust me. It’s gonna be okay.” And knowing at that moment, I had to take that leap of faith and I had to be like, “okay, it’s gonna be okay”. And it wasn’t without hard work making the decision is literally just the first step. There are so many steps that go along with it. And Dr. Nancy Young at Lurie Children’s did his surgery. And I remember she said to me, “oh, the surgery is the easy part.” She’s like “everything else after is the hard work. And you need to be on board to do the hard work.” And it is, I mean, that’s where we needed experts like yourselves and experts like Max’s AVT therapist and his audiologists and his support team who could really come in and swoop in and surround him and help get him to the level that he is today. 

Haley: 

I like that you brought up the point that Dr. Young said that this is the easy part because there’s a misconception that once you throw these cochlear implants on, “your child can hear, it’s done.” For people who aren’t familiar with hearing loss or parents that are thrown into this. It’s a lot more than that. Like you have the auditory verbal therapist and you have to think back of like six and a half months, plus 40 weeks in utero or 20 weeks in utero when they start hearing, you’re further behind a typical hearing child. And so really getting that early intervention, really working with the audiologists, the speech therapist, the teachers, the list goes on and on.

Kristen: 

It’s it’s a team, right? 

Haley: 

It is! 

Kristen: 

Full-court press 

Haley: 

Yes. 

Kristen: 

Yeah. You bring up a great point. Your sense of hearing is your first sense that develops in utero. And so you have that deficit from the get go, and those kids come out. And once they access to sound, whether it’s Baha, implant, hearing aid, there is a catch time. So we talk a lot and you guys know, we talk a lot about birth age, hearing age. And the goal is to like close that gap. Max at six and a half months got access to sound. And it was hard work. He was in therapy two and three times working with a speech therapist, working with a, what is it? DTH.

Haley: 

Developmental hearing therapist.

Kristen: 

Developmental hearing therapist. Thank you. But every single moment beyond that was a teachable moment you were constantly doing, oh, I hear that. What’s that? And you’re constantly doing the Ling sound and you’re constantly pointing stuff out, so it’s not, “oh, you go to therapy and then you’re done.” It is every single day, 24-7 to make sure that they are starting to identify sounds that they’re turning to said they’re eliciting a response. And then it’s making a gurgle, making a noise. I think Max was probably nine months old when he kind of really started producing good sound. And that’s hard for parents because I think a lot of parents to your point, think I’m gonna put the device on and we’re gonna just, and we’re gonna go, but there’s still all of these delays cause their little brains are trying to figure out what is that? I’ve never heard that before. 

Haley: 

Yeah. All day, every day we do listen. Cause you have to teach them to even “listen!” Like “I heard that. Did you hear that? What is it?” You know, even down to the, just, I just think of farm animals. So we just oink, oink all day, you know. 

Kristen: 

It was so ingrained in me that I was doing it with my younger son when, he was born Jackson a couple years younger, but wait, here’s the worst part. I started doing it with my dogs. So I was like, “I hear that Teddy what’s that?” And like, I’m trying to teach my dogs how to talk. 

Elise: 

We bring the therapy and the behavior management to our, our dogs at home too. 

Kristen: 

It’s such a great way. I actually think that Jackson, my younger, developed language faster at a younger age because I was still practicing the therapeutic listening skills and sound identification religiously with Max wasn’t so far out that it didn’t benefit. Max still used the benefit of it. But I do feel like Jackson’s vocabulary is infinitely better at a younger age than it would’ve been if I hadn’t carried on that type of therapy. 

Haley: 

Yeah. We see that with typically hearing siblings. I can think of a student right now. Their younger sister has just taken off, especially because of virtual learning. You know, like when there’s such a focus on language in the home, it just happens. So it’s like, it’s a win-win for everybody. So…

Kristen: 

Yeah. The younger one, you sit in long enough on a therapy session cause they always get dragged around to the therapy. You know, they’re bound to actually like skyrocket from a language perspective 

Haley: 

Well, I think that’s awesome that we kind of have a background on your family and how you got into this, this leads into our next wonderful question. Yeah. So the reason we have you on here today is while yes, you are a super mom who has helped your child reach all his potential goals, regardless of his hearing loss. We also know that you are part of the Foundation for Hearing and Speech Resources. So you, can you tell us a little bit about how you got involved with FHSR? 

Kristen: 

Absolutely. Right after we got enrolled over at Lurie’s, we received a brochure from the foundation and I immediately started looking and said, “I need to get involved.” Max was probably only nine months old. And I knew that Max really benefited from the fact that he had a team around him. He had support systems that he wasn’t even aware of. An HR person was dealing with all of the insurance and taking care of that so that I didn’t have to worry about it so that I could solely focus on him. And I wanted to give back and to really help other kids and other parents who were in this situation, who might not have as many resources, who might be struggling, how I was as a new mom with a newly identified baby with hearing loss. It really resonated with me that it was important to find an organization where I could give back. So I joined the board and I think that was back in 2007. When we started looking around to hire an executive director and bring on some staff, I was happily enough in a position in my life where I wanted to take on more outside of the home. And it happened to mirror with what I had studied when I did my masters and I had both the education and professional experience and the personal passion to understand in the mission intimately. And I took the role and it’s been fantastic.

Elise: 

Haley and I we’ve recently become involved with FHSR and the associate board. And I just love learning about all of the different programs that FHSR is getting together and doing for parents and families. I didn’t know that you got the brochure from the hospital, which I think is great. I would love to know today what they’re giving people and the fact that they can give parents those resources is amazing. For people that don’t know. Could you explain a little bit about FHSR’s mission and goal? 

Kristen: 

Yeah, absolutely. At our heart, the mission and the goals for FHSR are to level the playing field for all deaf and heart of hearing children in Illinois. So they can enjoy the same educational, economic, social, emotional benefits as their hearing peers. So we build programs that address all of those areas so that the children can be put on a path to be successful. We build them in thoughtful and meaningful ways. So they layer on top of their therapies. We’re not trying to be their speech therapist. We know they’ve got those people. You guys are the experts. You guys are the teachers. We know what you’re doing. Our role is to help your children be more successful. So to that, you know, we’ve built out programs that are free to our families. Our goal is to reduce as many barriers as we possibly can for them to come and attend one of our programs. And we wanna build a community. I think underneath it all, it’s really about this community. That is part of the mission that really resonated with me as a mom and a professional is how important it is to have that support and people around you have been through the journey who are experts in the journey. It’s a terrible place to be alone. And if the foundation can step in through our programming, through our advocacy, through our community development and help support a family, help change a child’s life, that’s amazing work for us to do. And we’re very lucky to be able to do that work. 

Haley: 

As somebody who’s a part of the board, I’ve been able to see and Elise, I know you feel the same way, the impact it can have on a family. And I think it’s really important that you said that you wanted to find a community. That’s a word that I think pops up in every single episode we’ve ever done. There really is something about the hearing loss community and you have to find your people and whether that’s through the Foundation for Speech and Hearing Resources or teachers or therapists, right, it’s so important because it’s such an understudied field. It’s an area that it’s low incident. So there’s not funding that goes towards certain program. And this is unique in itself where it’s solely for these kids. I mean, I don’t really know of a lot of other programs like this. And so this is something that I think for families, they should just take advantage of it because it’s such a wonderful, It’s such a wonderful resource! 

Kristen: 

I think we’re pretty unique. I have looked to try and find a peer foundation and there really isn’t one doing what we’re doing, working how we are, cuz we’re not a direct service provider. We knew enough to know that you all are the experts, how you are going to take care of the children is far better than any direct service program that I could ever develop up. So why would I replicate that? So I’m gonna develop programs in a community to support both the parents, the kids and the professionals. So we have three people that we’re hoping to support. Obviously the child is first and then the parents. And to your point, it is so low incident that our kiddos can go weeks, months, years without ever seeing somebody else who has hearing loss. Same thing for parents. One thing that I love about this job is it allows me through some of our programs to have access to families with newly identified kiddos and I’m able to connect them. So there is nothing more powerful than when two or three parents or caregivers get together with their children who have recently been diagnosed with hearing loss and they come together and you literally see that community start to build and you see the stress come down because suddenly they have a common language and someone else is in their exact same position and their child is having the exact same issues or struggles. And that communication in between the parents is so incredibly moving. It makes all the work so worthwhile. It’s a lovely thing to see those parents actually find a peer who is going through the same situation. It’s beautiful. 

Haley: 

Absolutely. I can’t even imagine as you know, we’re, we’re on the teacher side of it and I always say, we’re not the parents and it’s just a whole different ballgame. You keep mentioning different programs. Can you give us just some examples of what programs are people understand what kind of programs you offer? 

Kristen: 

Absolutely. And thank you to both of you guys first and foremost for being on the associate board. We really couldn’t do it without you. So thank you. Thank you. So we have three different program pillars as we go through how we support our children. Our first program pillar is our clinical and community outreach. And that program pillar, we do the Heart Family Cochlear Implant Education Coordinator out of Lurie Children’s hospital. She supports CI kiddos as they start the school process and the parents. We also have the loaner hearing aid program, which helps to fund pediatric loaner hearing aid banks throughout Chicago, which is crucial if you you’ve ever had a kid with a hearing aid, you know, they’re gone or they’re eaten or the dogs had ’em. So getting those kids back up seamlessly to have access to sound is crucial for safety and education and social and all the good things. So that’s a huge piece to that program. And then we’ve got the community events. We do a whole bunch of free family events when it’s safe together that are focused on the kids and some are focused on parents and professionals. So that kind of falls all under the community outreach and advocacy. We do an education program where we’ve built out our website to be very parent focused. It’s a clearing house of all the information you need at each age and stage of your child’s life. So right now, we have the early intervention piece that’s up and that goes from birth to three. And that talks about-you’re a newly identified parent. I didn’t know what an audiogram was. I didn’t know what the banana was. They were throwing all these acronyms at me. And I was like, I don’t know. I don’t know. I don’t know. So it’s really a lovely part of our website because you can go on there as a newly identified parent and you can find incredible resources and information presented in a very unbiased way that is in parent speak. So it’s not, “we’re gonna talk about anatomy” or that it’s really very conversational so that parents can come in and feel like they’re really just talking to another parent. We were very mindful when we built it out so that it would be so easy for them to access because we know how difficult it is at that time. And then we have one of my favorite programs, which is our Music to my Ears program. This came out of our Cheers for Ears, free family concert and to celebrate the 60th anniversary of the foundation. We started a music scholarship program. So we partnered with the Merit School of Music and the Old Town School of Folk Music. And if your child is born with hearing loss, we offer a year of tuition, free music, enrichment classes. So they can go from up to four years of age, we will pay for your child to go and have this wonderful bonding, incredible experience of taking music and parents getting to bond with their children and bond with other parents in the classroom. From there, we’ve expanded it to instrument lessons. So I’m so happy and proud to say that we now have children who have graduated from our early childhood program who are now taking piano lessons and they’re doing incredible. We don’t feel that hearing loss should hold these kids back at all. Back in 2020, right before the pandemic, we piloted our school-based program. So we have a music class that at Child’s Voice was one of our pilot schools. And we’re so thrilled to partner with Michele and Anna Tess over there in you all to bring in an instructor who has a curriculum that’s built directly to support children with hearing loss so that they can have access to music and have a high quality music program that will layer on top of all the hard work the teachers are doing to help them help the children with active listening, with call and response with rhythm, with pitch.

And really our big one is this idea of confidence. So it’s solo voice presentation. So we found that when the kids feel comfortable singing and doing call and response, it translates into higher self-esteem and it translates into them being more comfortable advocating for themselves. And ultimately, we want all of our kiddos to be able to advocate for themselves and to feel comfortable and proud of who they are and all they’ve accomplished and all the hard work they’ve put in to accomplish what they’ve accomplished. So the music is a feel good piece, and we’re doing music therapy in the summer of 2022. That will be fun. That will be just a short summer program. And we just keep continuing to grow and expand and hopefully bring on more schools on the curriculum side. We have three schools right now, and we are so proud to be able to provide this programming free of charge to families and to the schools because we know the power of music and all of the benefits that music has for normal hearing children. For children, with hearing loss, it’s increased tenfold and it is a magical way to sneak in all, all kinds of great, beautiful therapy and supports for those kids. 

Elise: 

I love that. I feel that’s one of my favorite parts as well, the music program, and I get to see Miss Sally teach when we go for music. And there’s so many amazing things that she works on that I can just carry over into my classroom. I actually did it today where Miss Sally was clapping the syllables along to the rhythm, which she’s connecting. They’re the same. We keep the rhythm. And I saw how challenging it was for some of my students. And I was thinking, “that’s something we do in the classroom”. We do the auditory skill development and we work on that, but transitioning it over to that music, part of their brain was just difficult. So with everything I was doing, I was starting to sing and clap along to the syllables or the rhythm. And they just thought it was hilarious. So they were responding, doing that. And it was in a more natural way, but I feel like next week, Miss Sally is gonna see an improvement just because we can work on it. And I love that part too. 

Kristen: 

Yeah. I love that. You totally picked up on that. That is the coolest thing about your program and your school. You guys are so intuitive and so aware and involved. We really couldn’t ask for a better school to have piloted the program. And we’re expanding by you guys gonna do early intervention starting in January. So we’re gonna give the little guys some music classes as well. So they always talk about, read it, write it, learn it. And when you talked about your music brain versus kind of your education brain, it’s fascinating to me, you know, the kids can have mastery of clapping out to syllables in a classroom setting. But then when you flip it into a music class, it’s like, “Hey, ho wait a minute. I gotta figure that out. And I gotta engage a whole ‘nother part of my brain.” And what happens when we activate that brain is those synapses start firing. And then those kids then do translate it right back into your classroom. And so you start seeing that bridging out. And I think that is where we’ll start seeing huge successful gains with the kids. When we see that kind of collaborative effort and that bridging in between the two, cause then you’ve activated both parts of the brain. 

Haley: 

I just think of every time we have a music class or the kids come from it, (Child’s Voice teacher) Elsa, she always says, it makes her want to cry. Every single time she sees a child with hearing loss, being able to sing and dance and clap it out. Because when she first started this journey, as a teacher could never see that happening, I know what music does for me and for you. It’s an emotional piece. And to bring that kids everyone’s like, “there’s no way they can’t hear.” They deserve every bit of that. And the fact that you guys are giving them the resources to do that is really just so beautiful. 

Kristen: 

Well. We’re so lucky to be able to do the work it’s such good work who doesn’t wanna do that work 10, 15 years ago or even longer than that. Cause I, my gosh Max is already 15, 20 years ago, we didn’t have the technology hearing aids and implants were built for speech. They were never built for music and people never thought that that would be accessible. I just read an article today where they were saying all of these kids who are born pre lingually, deaf, who get an implant, they love music. They don’t know music as anything else. This is how music sounds to them. I ask Max all the time, “do you like music?” And he loves music. He’s like, “I love it.” I’m like, how does it sound? He goes, oh, normal. You know, so sounds normal to me. And he listens to everything. He’s a rap guy. He’s a hip hop guy. He’s an indie rock kind of guy. He doesn’t box himself in. I mean he loves all music and I couldn’t imagine his life without it. His life is so much richer having music in his life as a part of his daily routine to make those connections. We can all think about any moment in our life. And there’s a song or a melody or a rhythm that you associate with those significant moments in your life. I couldn’t imagine not being able to give that gift to deaf and hard of hearing children. 

Elise: 

Yeah. And as a relatively young teacher that graduated from college and then started working at Child’s Voice, I wouldn’t have really known anything different, but I love seeing that reaction from parents that might not have known and had these hopes and then thought that it wasn’t possible or Elsa who’s been in the field of deaf education teach for years. And she’s seen such amazing gains in that. And it is so emotional for her. And I love remembering that because sometimes I don’t think anything of it when our kids can sing and talk non-stop. 

Kristen: 

‘Cause it’s normal to us cause that’s part of your time! But trust me, there is nothing more powerful than being in that room on the occasions that I’ve had the opportunity to come and be in your room during some of the music classes and to see all of those kids, I’m almost at a loss for words. And I get emotional thinking about it. I mean, even as close as 15 years ago, there wasn’t a lot of support that Max would have would enjoy music or would want music in his life. As a parent, I was desperately seeking for something to have some sense of normalcy. And I really said, “I’m gonna go and enroll in this music enrichment class at Old Town School of Folk Music,” Wiggleworms, which is now the class that our kiddos can take and the equivalent classes at merit. But I said, you know, “I need this for me. I need this for me to re-capture one piece of what I thought my life was going to be with my baby.” There was no science behind my decision. You know, I hadn’t looked up all the science for music and I just kind of said, uh, I’m gonna go do this cause I need it for me. And we did it. And I honestly think just by happenstance, it ended up being a decision that helped put him on a trajectory to have music in his life and to enjoy it and to inform me. It taught me how important it was and how as a foundation, we should get behind the principle of supporting music and do music programming for our children because everybody should have that opportunity to have that joy in their life. 

Haley: 

Well, you bring up a good point. He was so young. Singing is such a normal thing to do with your baby. We even do the sing songy, motherese voice. “Oh, I see you.” Like you get, you know, like your voice, your pitch changes. And so you don’t think about it until you’re forced to think about it. And the fact that you’re like, I want something normal. You wouldn’t ever think that. And you were talking about how over the past 15, 20 years a lot has changed. And you said you joined FHSR about 2007. What have you seen change in these past 10, 15 plus years working with the foundation? What have you seen change within the deaf hard of hearing world? What have you seen changes in the foundation? Just tell us a little bit about that. 

Kristen: 

The foundation is probably an easier answer. We’ve totally grown. We have this amazing engaged and active volunteer board. We’ve got a couple of them. We have our board of directors, our associate board and our advisory board. And they’re all people who either have children who have been affected by hearing loss or they themselves have hearing loss or their educators or teachers or service providers or professionals in the hearing loss world. And I think that gives us such an edge when it comes to growing our programs and supporting our families because we’re kind of getting it from it’s a grassroots, boots on the ground kind of position. I had a meeting earlier today with one of our new directors and we were talking about a need that she was seeing for her daughter. And it was something that we hadn’t even thought about and I’m like, “huh, okay. We can build a program around that”. We have this lovely ability to listen to what our directors are saying. And they’re so informed because they’re doing it and living that life every day with a deaf or hard of hearing child. And then we can react to that. So what I love is the foundation has continued to evolve and grow. We’re 60 years old, we’re over 60 years old, but we’re kind of like a startup. So we’re all still growing and expanding. So that’s the easier answer. As far as the foundation goes in the landscape of deaf and hard of hearing children. What I have seen is a lot of support and energy around early intervention, around getting to the kids early identification, of really trying to be that safety net to catch the kids so that we don’t have so many kids falling through who aren’t getting diagnosed early enough and who are not getting aided early enough.

My cohort at the Chicago Hearing Society, Karen Aguilar, really works very hard on that mission. Carla Geese, who works with connections, that is a major action item for them. And they do an incredible job now of catching those kiddos who might fall through the cracks, cuz we wanna get to those kids for early intervention, Illinois early intervention program is outstanding. They come to you, the service providers will come to you in your home. It is a sliding scale. So these are the things that I’ve seen that continue to grow and get better in ways to support children born with hearing loss. The technology is night and day. 15 years ago, these kids were wearing these processors on their bodies that were huge and the technology to hear, they didn’t have microphones right in their ears. And the hearing aids weren’t that good. And it was kind of, they taken this adult technology and shoved it down to pediatrics. And now I feel like all the manufacturers across the board from hearing aids to implants, to Bahas have really seen and started at building products specifically for pediatric. They’re smaller, they’re lighter, they’re more discreet. They’re sturdier cause they need to be sturdier. The technology continues to get better and better and better. And what I have seen is a child who’s implanted today has better technology platforms than my son had 15 years ago. I can only imagine what’s gonna happen in the next 15. And because the technology keeps getting better, we see a compression of trying to close the gap in between hearing age and birth age, where in the past 20 years ago, it might take you years and years to actually close that gap because the technology just wasn’t there. But now that we have the technology, that gap is getting shorter and shorter, which really only puts these kids on a much more successful trajectory. There’s some kind of cultural zeitgeist that’s happening right now. I don’t know if you guys have seen it, but all of these big companies are suddenly recognizing hearing loss. Yes. And I’m so excited about it. 

Haley: 

The Disney mannequin with the cochlear implant. 

Kristen: 

Totally Disney. How about the Disney deaf  Marvel superhero? There’s a Google commercial. There was a McDonald’s commercial on last night’s football game where they were all of this helps normalize hearing loss. It brings it to the forefront. It makes people aware of it. It’s so inclusionary. I love it. The WHO came out a couple years ago and said that hearing losses, the fastest growing disability across all age groups, a lot of it’s environmental people, cuz we’ve all got the earbuds in and we’re ruining our hearing that way. But even that being part of the conversation helps people to recognize hearing loss because it is low incident, recognize our kids and to start building a more inclusionary world for people with hearing loss. I love this change that we’re feeling. So it is dramatically different than it was 15, 20 years ago from that aspect. And I think the future looks bright for these guys. 

Elise: 

That was amazing. Kristin, thank you so much for being on with us. There were so many amazing things that you just said. That’s why we’re a part of this podcast, joining the community and making it easier and not as isolating for parents and families that need support and FHSR doing it. We love all of your amazing programs and events before we sign off. Do you have any additional advice or information that you’d like to share? 

Kristen: 

Well thank you for letting me be a part of this. I clearly could sit and talk about this stuff for hours on. 

Kristen: 

I’m happy to have a captured audience. Thank you. I think I would say I’d be parent focused and I’m gonna put my parent hand add on and I would tell parents it’s gonna be okay. Trust in the process. Trust in your decision trust in the goals that you have put out for your child, take in the good stuff. Don’t get so bogged down in the day to day heavy lift that you don’t embrace all the good that comes from these children. Every child that I see that has hearing loss has the most incredible smile. And they’re so engaging and they’re looking at you and they’re excited to be with you. That’s really special. And those are gifts that those kids will have that will carry them through for the rest of their lives. And these children are resilient and they’re going to be successful and it’s all going to be okay in the end. So stick with it and find your community. I think community is key so that you don’t feel so alone. And so that your child doesn’t feel so alone and lean on your people, lean on your educators, lean on your school, 

Elise: 

Lean on FHSR. 

Kristen: 

Yeah, lean on us. We’re here. We’re happy to help in any way we can. That’s what we’re here for. 

Haley: 

Well, thank you so much, Kristen, you are clearly so passionate about what you’re doing. It shows in your conversation and the work that you do. And I just can’t stress enough how wonderful the opportunities are that FHSR provides for not only parents, but as an educator, we’ve seen firsthand what it can do for families and students. So we really thank you for coming to talk to us. I would do another hour if we could. Because you’re just so engaging and it’s so inviting to have this conversation with you because you just radiate positivity and a passion for hearing loss. So thank you. 

Kristen: 

Thank you. 

Haley: 

Thank you for joining us and thank you listeners for joining us on another episode of All Ears at Child’s Voice. Be sure to join us for our next episode. We release episodes once monthly, 

Elise: 

You can follow us in this podcast on Instagram with the handle @childsvoicepodcast, 

Haley: 

And we’d love to hear from you. So please send us an email at podcast@childsvoice.org and you can find episodes, show notes and archived episodes at our Child’s Voice website, childsvoice.org. 

Elise: 

And if you’re interested in learning more about Child’s Voice, we are on Facebook as well as Twitter with the handle @child_voice. No apostrophe, 

Haley: 

Thanks for listening. Bye 

Elise: 

Bye 

Kristen: 

Bye. 

Speaker 5: 

And that’s all be sure to subscribe to the show wherever you listen to don’t miss any episodes. If you are interested in supporting child’s voice in the programs like this one, please visit us at child’s voice.org and click on the donate now button. Thanks for listening. Bye.