Hearing Matters Podcast

Audiologists Are Angels feat. Valli Gideons | My Battle Call

February 09, 2021 Hearing Matters Season 2 Episode 13
Hearing Matters Podcast
Audiologists Are Angels feat. Valli Gideons | My Battle Call
Show Notes Transcript

The Hearing Matters Podcast discusses hearing technology (more commonly known as hearing aids), best practices, and a growing national epidemic - Hearing Loss. The show is hosted by father and son - Blaise Delfino, M.S. - HIS and Dr. Gregory Delfino, CCC-A. Blaise Delfino and Dr. Gregory Delfino treat patients with hearing loss, tinnitus, and Central Auditory Processing Disorder at Audiology Services, located in Bethlehem, Nazareth, and East Stroudsburg, PA.

On this episode we interview Valli Gideons. Valli is a military bride, who writes about navigating through the fog of raising kids with cochlear implants and other things from the heart. She has discovered that there is no such thing as “typical” and prefers square pegs. Valli has a degree in journalism and in second grade wrote her first short story about a walking/talking sponge (Can you say: “She was robbed?” Hello, SPONGEBOB); She's been an exercise instructor since her teen years (Flashdance sweatshirts, leg warmers, and vinyl records to prove it); and may have been an extra on the vintage 90’s hit, Beverly Hills 90210 (proof still found on VHS tapes).

During this episode you will learn:

  • How Valli and her husband responded when they were told their children were diagnosed with Pendred Syndrome 
  • The importance of advocating for your children when they present with hearing loss 
  • Raising children born with hearing loss 
  • The importance of hearing healthcare providers practicing empathy while working with patients 
  • Realistic expectations as it pertains to hearing aid and cochlear implant fittings 
  • Harper Gideon's newest book Now Hear This: Harper Soars With Her Magic Ears 

Now Hear This: Harper Soars With Her Magic Ears

When a child is diagnosed with hearing loss, it is overwhelming. The future can feel uncertain and parents might worry whether or not their child will thrive. Harper's real life story allows readers to follow her journey, providing both parents and children who are facing any kind of diagnosis a much-needed dose of encouragement. Through Harper's navigation of hearing loss, kids can imagine what is possible. Understanding and awareness are key to feeling included, and the community around a child with hearing loss is critical. This story shares ways people in a deaf or hard of hearing child's life can better support them. Harper's witty approach to storytelling resonates with young readers and will surely inspire the people who love and support them.

Audiologists are Angels

We are grateful for the opportunity to have Valli Gideons as a guest on the Hearing Matters Podcast! It was either in a blog post or another podcast, but we heard Valli say, "Audiologists are angels." The aforementioned describes the impact that Harper and Battle's (Valli's son) audiologist has had and continues to have on their life! The countless follow-ups, reprogramming, and clean and checks all positively influenced Harper's and Battle's hearing world. If your child presents with hearing loss, or you're an adult who presents with hearing loss, teaming up with an audiologist that understands your type and degree of hearing loss, social activity level, and your hearing, listening, and understanding goals is essential.

When to take your child to a hearing professional

We Heard You Have Some Questions, Let's Hear Em'

Email:
[email protected] 

Blaise Delfino:

You're tuned into the Hearing Matters Podcast with Dr. Gregory Delfino, and Blaise Delfino of Audiology Services and Fader Plugs. This show that discusses hearing technology, best practices, and a growing national epidemic hearing loss. On today's show, we have a very, very special guest. Her name is Valli Gideons, and she is an author, military bride, speaker, and mother of two thriving teens who were born with hearing loss. Valli, welcome to the Hearing Matters Podcast.

Valli Gideons:

Thank you so much for having me. I'm happy to be here.

Blaise Delfino:

We were so excited for this episode, because your story is truly, truly incredible. And Valli, we're gonna dive right into the episode. Can you please share with us your story because it truly is exciting. It's a very interesting story of how you have been raising children who were born with hearing loss.

Valli Gideons:

Well, how much time do you have? It's always funny to be asked to tell our story because you don't know exactly what place to start. But for the purposes of this podcast, I would start with my son, Battle, being born in Cleveland, Ohio, and failing the infant hearing screening, and then being brought back two weeks later for the AVR testing, only to be told, after being sent to the little cold, dark room, that they put parents in for bad news that he had severe to profound hearing loss. And so that kind of began our walk with what this hearing loss meant. Having to get educated, we had no family history, it wasn't what we were expecting. So we were military family. So at the time, we were living remote, so we didn't have family nearby. So we really had to build a team of advocates around us that we could lean on which it was challenging, being a military family. Once we kind of started to get our footing, we found out my second child also had hearing loss. So she has the same syndrome that our son has. And so 21 months later has the next baby and continued the journey.

Blaise Delfino:

Valli Can you share with our listeners, the syndrome that both of your children were born with?

Valli Gideons:

It's called Pendred Syndrome and it's just basically a genetic mutation that together my husband and I cause I don't I don't like that term. I don't I haven't really haven't come up with a good term. And so really, the biggest thing is it's in causes enlarged vestibular aqueduct and that's what caused the hearing loss. And other than that, they're just typical kids.

Blaise Delfino:

Absolutely.

Valli Gideons:

So the challenging thing with the enlarged vestibular aqueduct is the hearing fluctuates. And so when you're dealing with babies who are wearing digital hearing aids programmed for their specific loss, and their hearing could be changing daily, weekly, monthly, whatever. And that was pretty challenging, although they did become experts, behaviorally, like being tested, both kids were so accurate, very So bi-modal early on well, so we were we are we were pretty lucky. They both complied and became really good testers. And then, you know, we got to a point where in the fluctuations that my son's hearing his started off at severe to profound so his head dropped off severe enough that we decided to do a cochlear i plant, where my daughter's was o ly mild at birth, her loss, a d so hers fluctuated in one y ar enough that she got a co hlear implant, but she also ears a hearing aid in her other ar. Yeah, so she has enough residual hearing there that we're holding on to that hearing aid.

Blaise Delfino:

Valli, you had mentioned, you had no family around when the audiologist had reported to you that your son presents with a severe to profound hearing loss correct. Now to be told that you present with a hearing loss number one, the stages of grief can start to settle in, right. But I'm curious to know, what were some of the feelings that you and your husband started to feel when it was told to you that your son presents with hearing loss?

Valli Gideons:

Yeah, that's a great question. Thank you for asking that one. Because initially, they told us, it was probably just fluid in the ears, ear canal from the birth. So we really left the hospital not even thinking twice about it. So when we were returning for that second test two weeks later, we really did not anticipate at all that we would find out that there was anything not normal with his hearing. So The initial feeling was shock. Like complete shock. We were not prepared at all that we would get the news, anything other than, yeah, he's fine. So and then it wasn't the audiologist that talked to us at this particular clinic, we were put in that room and a doctor we hadn't even met, I called him doctor lab coat. That's the only thing I know about the guy that walked in and said, your son has profound hearing loss, he'll probably get hearing aids, maybe get a cochlear implant probably go to mainstream high school? And do you have any questions? And we're like, what? Huh?

Blaise Delfino:

Oh, my gosh.

Valli Gideons:

So then we left with all these scheduled appointments. And needless to say, we changed clinics. Because we know yeah, we, we knew, this isn't the right fit, because how we were told, and I do hope, and I think this is changing with sensitivity training that's going on in schools, and people who are becoming audiologists and whatnot in that profession all well, the deal with anything you're diagnosing or giving this kind of information to parents is, there's definitely a way you can give the information that's going to leave the parents feeling like there's hope and help begin the process of accepting. But so for us, it was just shock. And then it was denial of what the gravity of it was going to mean, for a moment, like just didn't want to believe it, because he wasn't going to get fitted for his hearing aids till he was six weeks old. So we had like four weeks to not have a baby with hearing aids. So a little bit of me, I think was just holding on to that kind of denial, but we had set up all the appointments and starting to educate ourselves about it. And so there really was no time to grieve, I guess that's what I'm trying to say. There wasn't time because having an infant is so challenging. And then having an infant that then needs all these appointments and fittings, and then also then the full time job of keeping hearing aids on an infant. There was just no time to really process

Blaise Delfino:

And that fluctuating hearing loss as well. You were just presented with copious amounts of information and the delivery of that information, of course, was insensitive, how important Valli is it for hearing healthcare providers, and really any healthcare provider to practice empathy. You know, I think about the experience that we provide our patients here at Audiology Services, and we fit children with hearing instruments, adults and individuals within the geriatric population. And most often, these individuals haven't had their hearing tested for 20,30,40 years and then we let them know that they do present with a decrease in hearing sensitivity. And we we make sure we do it in a way that, like you said, is sensitive because to tell someone that they do present with a hearing loss, they are going to more than likely go through that grieving process. So again, how important is it for not only health care providers in general, but specifically hearing health care providers to implement and practice empathy?

Valli Gideons:

Oh, geez, I think well, thank you guys for the work you do. Sounds like, too bad Pennsylvania's so far.

Blaise Delfino:

3000 miles away

Valli Gideons:

Yeah. Although we have an amazing,

Blaise Delfino:

You do

Valli Gideons:

Amazing audiologist. Yes. So why wouldn't trade it for the world. However, when we were living in Cleveland, and we ended up finding a fabulous audiologist and a whole team, auditory verbal therapists geneticist, and once we found the right fit, then we were in really good hands like excellent hands, but it's a fine line, because you don't want that professional to pity your child. Like, we it's not time for them to be crying about it, you know, I guess you want to have somebody acknowledge that this has a lot to take in, and you've got to be very, feeling very overwhelmed. It's okay to feel sad. And then you want someone to say that, you know, the next breath, but I assure you, you're in the right hands and we're gonna hope to do everything to make sure your child has all the opportunities in the world, and your child will thrive. It's going to take a while to get there, but you're going to get there and we'll be here to walk you through it. So letting you know you're not alone. But also acknowledging This is really hard. Don't make it like it's not a big deal.

Blaise Delfino:

Don't say Everything's going to be fine. Right?

Valli Gideons:

Do not say everything is going to be fine. Do not because it's not initially, actually To this day, I still hate the phrase. It'll be fine. They'll be fine. She'll be fine. Because it just is so patronizing and just, it's almost to me, it's like telling you to buckkup, suck it up, suck it up, buck it up, okay, they'll be fine. They're fine. And it's

Blaise Delfino:

What you had said in your blog post, and it's like, yeah, they'll be fine. sort of goes against the the term empathy in and of itself truly. And I think it's essential to, and I believe you'll agree with me and saying this is that as hearing healthcare providers, we take that team approach, I don't know what it's like to present with hearing loss. But the patients that we have fit with technology, the patients that we have worked with, this is what we've done and this is what we found and this is how we can work together to accomplish your goal of better hearing and connect you to your new hearing world.

Valli Gideons:

Yeah, that's great. I think one of the really valuable things that they the new team, I'll just call them the team now that the team that we shifted over to, they also invited us to meet other parents, and we got to see go, we did the auditory verbal route. So we got to go just be spectators at a few sessions watching older, like toddlers, they, you know, which toddler seemed older since we had an infant, but watching them, you know, playing and laughing and just looking like just typical kids and then speaking to parents who I don't know, somebody who's walked in your shoes, it's important. And that's kind of, I guess, the basis for why I began this online community that I have, because, you know, my son is 16. So when he was born, there was not on social media there were there were not easy ways to connect and I mean, locally, yes. If you happen to live somewhere where there was a community of particularly even cochlear implants, you know, it's not like every kid on the block has one. So I wanted to create the community that I wished would have been available when our kids were born. Because

Blaise Delfino:

Doing just that. And to our listeners, right now, it's everything. Valli Gideons represents My Battle Call. And you can visit her community, it's mybattlecall.com and Valli, I have to say, I've had the opportunity to go through your website, you have so many incredible resources truly, between the blog posts and the podcast, you are a true advocate, you want to get that message out there. And you're doing this, not only for your children, but the parents currently going through the same thing you went through, and that that's what we're about here to with the Hearing Matters Podcast. So to be able to partner and team up with My Battle Call is such an honor so hank you for the opportunity. nd I was listening to one of our past podcasts. And you had aid that audiologists are ngels, can you please expand on his statement and how it arallels My Battle Call?

Valli Gideons:

Sure, to tall order right to call them angels. But I really do feel that way, particularly now having a 14 and 16 year old and you know, your ENT, you see annually perhaps now less than that I don't we don't even have an ENT. Don't tell my mom, but with like our kids, they don't have an ENT our pediatrician, you know, it's it's a well visit and it's a you know, it's a good rapport. But when they were young, our auditory verbal therapists, of course, was key, but they worked hand in hand with the audiologist, who I would say it has had the most influence over our journey of any person that we interacted with. She has been the most encouraging and supportive and honest person when it comes to navigating this whole crazy thing.

Blaise Delfino:

It's important throughout this journey, incredibly, incredibly.

Valli Gideons:

It's so critical. Important. Yeah.

Blaise Delfino:

What's interesting is that you are a military family and thank you for your service. Truly, you and your family have moved many times you lived across the country. But you were originally from California. When you lived down the east coast, you would actually fly to California to see your children's audiologist. I mean, when you say audiologists are angels. That's incredible. And you were so confident and had built up such great rapport with that audiologist tell us why you and your husband decided to even though you were living 3000 miles away maybe why you decided to fly back to see your children's audiologist in California.

Valli Gideons:

So early on we had a decent audiologist and then we moved to another state and had to find somebody in an implant center and it was an okay, audiologist, but then once we got stationed out to California and met our current audiologist, it's like, whoa, we saw what right looks like

Blaise Delfino:

Dream Team.

Valli Gideons:

That's what my husband, yeah, my husband, I say, once you see what right looks like, and she was never, she would never criticize what any other audiologist or any other professional had done. That's not her way. Because that's, you know, that's not professional, but she would make her recommendations to be able to say why, you know, backed up with information. So once we were dialed into her, and our kids were bait, I mean, we were in the decision making process of our daughter getting a cochlear implant. So it was a pretty critical time in our kids lives. So she worked with us through that whole journey. And then by then the kids are building such a good rapport. And for me, it almost was sitting down for therapy sessions with her, because in between all the, you know, audiology stuff, we're talking, I'm asking questions, we're exchanging, you know, stuff about the kids things they do and say, and what's working, what's not working. So it was somebody who was like, in our camp able to just really collaborate with. And so then when we got orders out of California, my husband are like, there's no way we're shifting care on these kids now, because the continuity for us was important. Now, not every military family, we had to do it on our dime. I mean, nobody paid for the travel. Plus, I was from California. So flying home wasn't the worst thing. You know, coming home to visit with two kids so that wasn't the easiest thing. But it just was important to us to keep that continuity of care. And I mean, it's a kind of a big deal in your kid's life, you know, audiology for kids who are deaf and hard of hearing this kind of a big deal.

Blaise Delfino:

Absolutely. And when we talk about building language and speech skills, and things of that nature as a child, to ensure that they are hearing and understanding speech, that is so critical. And I want to dovetail off what what you're saying. And if you can kind of deep dive into this. You had said it was sort of like a therapy session quote unquote, in that it sounds like your audiologist listens. How important is it as providers and even as parents to listen not to listen to react but really listened to understand how important is that?

Valli Gideons:

I love that. We have a quote my daughter said when she This is when I knew everything was changing for her. She was like, you know, hearing loss is not about hearing. It's about understanding. And ironically, we were guests at our audiologist's class she teaches at a college to audiology students. So we went as guests. And my daughter said that and I swear Audiologist was so proud of her for saying it's not about hearing, it's about understanding. And it's the same with it's not about hearing, it's about listening, to our kids right they can hear it. But can you make sense of it? So I think our audiologist models that

Blaise Delfino:

it sounds like it. I mean, incredible. Really.

Valli Gideons:

Yeah. And I think also, here's the other thing, I am really painting her out to be an angel aren't I? But I know I could go on

Blaise Delfino:

that is so important Valli because when you are teamed up with a provider, whether it's a PCP, an audiologist, ENT when you just when you click with that provider, and you know they have your best interest at heart, my gosh, that makes the process that much easier. I mean, truly, we're a family private practice here and we always tell our patients, listen, you're part of our hearing family, we're gonna treat you like you're part of our family because we understand what goes into the overall process of living with hearing loss being told you have hearing loss, and it can be scary not only for new hearing aid users, but I'm sure it was scary for you and your husband when you were told that your child presents with hearing loss, which I'm curious to know you had talked about in another podcast episode about that magic moment with children who are just fit with cochlear implants and the videos of the implants being turned on and the videos go viral. And that was on the All About Audiology Podcast, great podcast as well. And that magic moment, which you had said, that's really not the magic moment, per se. Can you please expand on that? With your belief system that that's actually not the magic moment because you you have children who, you know, wear cochlear implants. Tell us more about that.

Valli Gideons:

Sure. Thank you. Well, going back to one quality about our audiologist that I think is important that I forgot to mention is she listens to the children. She talks directly she's treated them like Young adults, well, their opinions matter, their feedback matters. The appointments for them, this is your hearing, this is your your, these are your ears, we call the devices ears. And this is you take ownership, you take ownership of this, I think they trust her because of that. And I love when adults do that to children. And now teenagers, I love when they address, don't just speak to the parent, but they actually speak to the child and listen to what they have to say, rather than sitting there talking about them,

Blaise Delfino:

Talking to them

Valli Gideons:

You know, she talks, she yeah to them with that, It's a collaborative, it's not mom and doctor, it's collaborative. So anyways, back to the magic moments. Yeah, we never had one of those. Although I have to say, I am elated for people who have those moments. I don't begrudge them. And I mostly love because I love to look at the videos always to me, I look right at the mom.

Blaise Delfino:

Yeah.

Valli Gideons:

And it's that profound moment that the mom feels, but what I've written about that I feel strongly about is that that is setting an expectation that is often not the case for most people. And so if you go into your appointment, everyone's got their iPhones ready to take the video, and then your baby is crying, screaming and throwing them off, because it's just

Blaise Delfino:

Too much sound.

Valli Gideons:

Yeah, that's more typical. They're hungry, they're tired, whatever. And then you don't get that moment. And now you're disappointed, and you think something's wrong. And so I think it's really important. I've always said, if we're going to tell our story, we have to tell the whole story, not just the pretty part wrapped up in the bow, I've asked my readers to share with me their magic moments. And it makes me cry every time. So it could be as simple as your kid turns to their name for the first time. Or the first time my son, I'll never forget this. We're walking Cleveland all bundled up. And he's a toddler. And he says, I hear a bird. He pointed to his ear and looked up and he had heard a bird. And I mean, done, I lost it. I'm like, I never thought he would hear a bird. And you know, maybe if that hadn't been what was meant to be, and he'd never ended up hearing a bird I would not have loved him less or thought his life wasn't just as valuable, but it's those moments like my daughter saying hearing is more about understanding and hearing. My son is in Chinese three in high school, like a deaf child who's speaking Chinese. And he, I mean, he walks around now singing in Chinese, he has to record himself for school every night. They have to send in a recording to their teacher and he's very artistic. And so watching him write the characters. He's got a photographic memory. So I think Chinese comes easy to him as far as the characters, but to speak it because and his Chinese teacher wants to cry over him because I'm like, do you understand children who are deaf and hard of hearing? That's not the top 10 things that people tell them they're going to probably be able to do. And he's doing it so he must be wired very well for language.

Blaise Delfino:

Valli, you and your daughter Harper recently released a book called Harper Soars with her Magic Ears. You and Harper released this book February of 2020. To work together as a family. This has to be so special to you in the family. Can you please share with us a little bit about Harper Soars with her Magic Ears?

Valli Gideons:

Sure, thank you. It's I can talk about this book for days. It's called Now Hear This, Now Hear this Harper Soars with her Magic Ears. And long story short I've been a writer since like second grade, I think is when it really clicked with me when I had

Blaise Delfino:

Spongebob

Valli Gideons:

An amazing teacher. Yes, I did create SpongeBob. I swear I'm waiting for my royalties. I say that, but I'm not lying. Mrs. Shim was my second grade teacher. And she

Blaise Delfino:

Use of imagination just thought every story I wrote was fantastic and encouraged me and so I continued just to write on my own and, and it wasn't until college that I had another professor who, because I wasn't going down the track of journalism in college, and he just convinced me you need to do this, and yada, yada, long story short, so I was like one of those people. I was always like, you should write a book, probably too, because our life has just been so crazy. We've had like nine lives. You should write a book, you should write a book, but I really didn't have this burning desire to write a book because it's pretty much something you have to be burning to do. To write a book is such a commitment. And I just, I was like, I have my blog and I write for magazines, and that's kind of what I'm wanting to write about right now. And then Harper came home from fourth grade and you know, at the end of the school year, they have the big tattered backpacks full of all their stuff from the classroom for the year. She plops it down on the sofa takes off probably to go get a snack. And I started unpacking the backpack because now you're gonna find old apples and you know, dirty socks and whatever we're going to find in the back. And I pull out her tattered, torn writing journal and I opened it up. I said, I mean, I am now I'm not getting up. I started thumbing through this thing her teacher had done, they did daily writing prompts. So every day they started the day with a prompt, and then they would just sit and write, or whatever, how many minutes of the day, which for me, as a writer, I just think that is the greatest way to start a kid's day. It's reflection, it's sometimes they were funny, sometimes they were deep. Sometimes they were, you know, what's your favorite candy.

Valli Gideons:

Yes. And this particular piece that she had written was entitled, the prompt was what makes you unique. And she wrote, I am unique, because I am deaf and she just went on to discuss how that she really feels like her role is to show kids that no matter what your challenges are, you can still do anything you put your mind to. And she likes to play basketball to show her hearing friends that deaf kids can compete just like hearing kids can and the skies. I mean, all these metaphors, and because I'm a military kid, I think it's even more of my battle call and

Blaise Delfino:

Wow.

Valli Gideons:

So I just like, that is the book. I'm like, that moment, right there. I go that and I told her I go, this is the book. She's like, what book I go. This is the

Blaise Delfino:

book we're writing together.

Valli Gideons:

Not. It's not my story. It's your story. Your story is the one that people need to hear. She didn't really believe me. I'm not sure she was that into it. She's been interviewed about it, where she'll say I didn't really think it would happen. It wasn't until it started to come to fruition. Like, okay, I hired an illustrator. I'm working with publishers, like we're actually doing this, then she got really into it, and then started wanting to really work on dialing in and buttoning up the manuscript and telling me Well, that doesn't sound right, that sounds corny, and because it's really told that her 12 year old voice, and so by the time the manuscripts in it's like 100 edits, she's now 13. So a lot of the language, she thought, well, that just sounds corny. I'm like, because you were 12. And now you're a teenager, but it's written for kids ages, preschool to sixth grade. And it's pretty wordy, because we like words. So it's not a picture book. It has illustrations, but it's witty, and it's informational and it says what you can give ways you can help your friends that are have hearing loss, like there's ways to be more supportive, and it's supposed to be encouraging and inspirational. And then we end the book, the back of the book is all pictures of our real family with captions. So you get to see all the people, the characters in the book, get to see him in real life, which is something that was Harper's idea, because she's like, I always want to know more about the person who wrote the book and the characters in the book, because they're all real people.

Blaise Delfino:

So Valli for our listeners tuned in, where can they find My Battle Call to get their own copy of Now Hear this Harper Soars with her Magic Ears?

Valli Gideons:

Well, they can go to my battle, call calm. That's where I host my site. And then I'm on Facebook and Instagram, same name, my battle call. And then now here, this is on Amazon, and Barnesandnoble.com. And then there's a link from my website, you can get straight to the book. And also I wanted to offer to your listeners, if they want to email me, I have author copies that I can sell, where we can sign personal messages.

Blaise Delfino:

On your website, you talk about the power of positivity, how important is it for individuals who are just told they have hearing loss or parents who are told that their children presents with hearing loss? How important is it to embody the power of positivity and to embody a positive attitude?

Valli Gideons:

I would say I never underestimate the power of encouragement. I believe in you have to see it to believe it. But But if this is unknown territory, like the first deaf person I ever met was my own son. So how could I see it? What did I know? So I think sharing stories and I think that's how we encourage others is we share our story. And that's why Harper's on this book tour with me, you know, like they don't want to hear from mom, I want to hear from you. Like you're the kid living this. And you know, my kids, I get encouragement from them. It's crazy. They really do not think that their hearing loss is anything that should make anyone think they're inspirational in any way. They just think it's just one part of them which is true, but they do root for the underdog and I think they're more empathetic because of it because of they've had challenges but I think sharing our stories is probably the best way we can encourage others.

Blaise Delfino:

You're tuned into the hearing matters podcast with Dr. Gregory Delfino and Blaise Delfino of Audiology Services and Fader Plugs. We had Valli Gideons from My Battle Call talk to us today about her experience with individuals and her own children who do present with hearing loss. Until next time, hear life's story.