Through the Fog: Valli Gideons on Raising Kids with Hearing Loss

Join us for an insightful journey with Valli Gideons, a military bride turned advocate for children with hearing loss. As we unpack her personal experiences of ensuring consistent healthcare for her children amidst frequent military relocations, you'll gain a fresh perspective on perseverance and dedication to family. Listen as Valli shares her decision to keep their trusted providers in California and discuss her heartening journey of maintaining continuity of care for her children.

Through stories and personal experiences, Valli shines a light on her advocacy for children with cochlear implants. Delve into her strategies for helping kids keep their implants on and leading a fulfilling life. We talk about the role of acceptance, the power of positive role models, and how to help children process their feelings about hearing loss. Glean insights from Valli's book 'Through the Fog Navigating Life’s Challenges While Raising Kids with Hearing Loss' and discover hope, encouragement, and reassurance for parents navigating the voyage of raising a child with hearing loss. Tune in for this heartwarming conversation and let Valli's wisdom offer comfort and guidance.

Transcript

Blaise Delfino:

You're tuned into the Hearing Matters podcast, the show that discusses hearing technology, best practices, and a growing national epidemic hearing loss. Before we kick this episode off, a special thank you to our Partners: Sycle - built for the entire hearing care practice. Redux - Faster, drier, smarter, verified. Otoset - The modern ear cleaning device. Fader Plugs - the world's first custom adjustable earplug. Welcome back to another Hearing Matters podcast episode. And we are so excited to be joined by the one, the only author Hearing Healthcare Advocate, Valli Gideons. Valli, welcome back to the Hearing Matters podcast.

Valli Gideons:

Yeehaw, thank you so much for having me back!

Blaise Delfino:

I love your energy. Before we hit record today, our last conversation, the last time we had you on the Hearing Matters podcast was sort of the tail end of the pandemic, so it's great to see you not during a pandemic.

Valli Gideons:

Yes, a hundred percent. I think it was right in the throes of the pandemic.

Blaise Delfino:

Yeah, I think my whole perception of time now is like I'm like 2020, geez, it's almost four years ago, but so great to have you back on The Hearing Matters podcast and Valli, so much has changed since the last time you actually came on. For those who are new to the Hearing Matters podcast and are not familiar with your story, tell us about your personal journey as a military bride and how it's influenced your advocacy for children with hearing loss.

Valli Gideons:

Well, that is a very long story.

Blaise Delfino:

We've got some time.

Valli Gideons: 

Yeah. Well, my husband has recently retired from 30 years in the Marine Corps, so we're transitioning to being now a former military, which is very surreal. But I think one of the biggest challenges of having kids, well one of the biggest, that's crazy, there were a lot of challenges, but being as it was tied to the military is Marine Corps, you move a lot.

Blaise Delfino:

Right.

 Valli Gideons:

So keeping the continuity of care and being able to find providers that you really trusted was exhausting. But we ended up muddling our way through it and found great providers and then rather than just every time we moved resetting up camp, we would fly back to the providers that we had found in California, which is now where we are and have settled. So, I mean that's not easy, but we had just decided it was the best option for us.

Blaise Delfino:

I remember when we first connected and the first episode that we released together, the name and actually the title of that episode is "Audiologists Are Angels", and you made that comment in our first conversation and that really stuck because they really are all hearing healthcare professionals are angels. And to your point, what we'll do is we will link that first episode for those tuned in to listen back to learn more about your story. But you recently released a new book and I was taking a look. First of all, it's like five star reviews, which I would expect nothing less from you, Valli, because you're so passionate about this and you've lived this. The name and the title of the book is :Through the Fog: Navigating Life's Challenges while Raising Kids with Hearing Loss". And what I like about the description of the book is you bring up the grieving process, you and your husband both raised children who present with hearing loss. There's so many challenges. So number one, what inspired you to release a second book? Number two, what is so special about this book, and what do you hope to accomplish with navigating through the fog? Three barreled question there, Valli.

Valli Gideons:

Thank you. I appreciate your support so much. And I have mom brain, so there's no way I can remember a three-part question, but I will say, so I guess it'll be linked in the show notes, but me and my daughter had written a children's book together and that was released during the pandemic. And so what did I decide to do less than three years later? Write another book. I don't know why I am a glutton for punishment. This one was my own story though. So a completely different experience and I think it really started as I wanted to put together a collection of my essays and have something because I'm doing a lot of speaking engagements and going to conferences and I wanted to have something to give to people that kind of put all my stuff in one place. So I got with one of my best friends from college who's also a writer and she helped edit the children's book.

 Well, this, I don't know if it was a mistake, but it's what started us down this road. She's like, I want you to print out all this stuff. And we laid it out on the dining room table and it was like 25,000 plus words. She's like, this is not a collection of essays. This is going to be a book. And she's like, I want you just to go through and see what themes you find. And it was interesting without even trying to do so I had the theme of coming through the fog through everything I wrote, whether

Blaise Delfino:

mmm.

Valli Gideons:

it was my dad dying of cancer, being a military wife, having the kids born with this unexpected diagnosis, whatever it was, it came back to feeling like I'm always trying to get through this fog. And so the theme was just there and then just decided, all right, I'm going to do this. So weaved all the chapters together and added and told more stories and really now that it's out in the world, I want it to be given to every parent who has a child that gets identified with hearing loss. It's all the questions I hear, either comments on my social media or on the parent groups I belong to. It's just a universal, they want to know it's going to be okay. They want hope, encouragement, and I'm like, it's all there. It's in the book. Read chapters one through 28. It's all there. All this to say it's going to be hard. There's going to be a lot of challenges, cannot sugarcoat it, but it will be okay and your kids can completely thrive.

Blaise Delfino:

What I think is first and foremost, the imagery of fog. We think of fog and it's like, okay, we know it's there. We know that eventually the fog will clear out because whether it be after a storm or what have you, I love the imagery with that because number one, we know that eventually fog will clear up, but we need to give it some time. And when we talk about time and the grieving process Valli, most of us have grieved one thing or another. What was it like grieving your children's hearing loss?

Valli Gideons:

I can only say looking back and a lot of this is retrospective, for me now that I just had shared with you, I have a junior and senior in high school, so it's a lot of time now to look back. The grief I felt was for the motherhood I thought I would have that I didn't have and worrying about not knowing what their outcome would be like because this was before social media. This is before you're seeing images of all these kids thriving and having access to all the resources and information at the tip of on your fingertip. But when I was experiencing that grief, I can say, and that's why I write so much about it, is I was afraid to say it out loud. Fear that it would be perceived or maybe I believed it too, that somehow people would think I loved my children less or didn't accept them. And so I stuffed it down,

Blaise Delfino:

Hmm.

Valli Gideons:

which Is a theme throughout this book, how unhealthy it is to not allow yourself to go through those feelings and to also give yourself grace when you really need it from yourself and from others. So I think mine is more of a retrospective that is what I was experiencing but didn't really know it.

Blaise Delfino:

What's interesting too, Valli, is that especially with parents who are raising children with hearing loss, you had mentioned years ago it was sort of social media of course wasn't as big as it today. And we can oftentimes go down these Google rabbit holes, right? Like, oh, I have a pain in my back. What does this mean? And it's like the worst thing possible will show up. But what's great now with, so you and I initially connected, I believe either Facebook or Instagram, but that brought us together. What's incredible is that there's so many support groups out there and something you've been able to do is create "My Battle Call", which is a widely popular social media platform that reaches close to a million people per month. How did this platform come about? What motivated you to create a supportive community for parents, professionals and individuals who are deaf or hard of hearing?

Valli Gideons:

Millions of people a month? I know that's very overwhelming, and I have such gratitude for this space. I really do have - I just love and honor this group of people who have decided to connect and be a community online. And some I get to now meet in real life, which is so much fun. But I think I just wanted to create a space that would've been exactly what I would've wanted that wasn't available for me. And I come from a YMCA background, I was a director of health and wellness for the Y. So the Y way is building communities and building communities within communities, making sure people feel included and seen and respected. And so I bring that. I think again, it's a little retrospective, but looking to why my platform has grown the way it has, but in a manner that I really can say, you're not going to come on my site and get trolled or have mean nasty comments. It's rare, rare, but it's a tone that's been set that we don't do that here. We appreciate other people's stories and there's no one way. I do not say this way is the way. I'm not saying do what I did, do what we do. And I'm also not telling my kid's story. That's theirs to tell. I only speak from the point of view of a mom muddling through.

 I think that's something I caution parents of young kids who have created platforms as well, where their kid is the center is centered and they're telling the child's story. And I guess I'm lucky because my platform, my kids were old enough to have an opinion about it and now they're part of it. There are things they don't want shared about any of this. So, same with the book. They got to have the last stamp of approval before it went to be published. So, I think, yeah, so before the books and I had been a writer, and I think I just wanted to have a place to share my perspective and bring other people together.

Blaise Delfino:

And hearing healthcare is absolutely community-based, especially in today's day and age where we have information at our fingertips. Number one, I love the fact, and we've seen this firsthand, outsiders looking in, being a hearing care professional, seeing your platform and community in a different light. I didn't raise children with hearing loss, but have such a deep appreciation for your position of "I'm going to share my story and then my children now share their story." And I love the approach that you take because you're not telling other individuals how they should raise their children. And that's really that empowerment piece where it's like, you know what? Let me empower you. I'll share my story. This is what worked for me. This might not work for you, but at the end of the day, they're going to do what works best for them and their children. And that's truly, Valli, being a quote outsider looking in what I think has created major platforms so strong because you are taking that approach of number one, you're just authentic. You're authentic, you're real, you're true. And what's incredible is you have this major following, so many visitors per month, but this is so natural to you and you see this as a way to give. So, you're giving back to the community to hearing healthcare in and of itself.

Valli Gideons:

Yeah, thank you for recognizing that. It really is. It is a service.

Blaise Delfino:

Oh, for sure.

Valli Gideons:

I get more from it than I give. I really, I mean it's not my ministry, but it kind of is. It's just connecting people and helping people. It's so cliche, but not feel alone. And that's the message. And it's probably why I don't have a deal with a hearing technology company. I also talk about the real hard parts of it. I don't sugarcoat, but it's not as easy as you just go get some hearing aids or go get a cochlear implant and you hear normal and everything's peachy keen, fine. It is not that. And if people have that misconception, boy does that set them up to fail

Blaise Delfino:

Completely. And Valli being a hearing care professional, being a former private practice owner, setting realistic expectations, number one with your patients. But now if you are a pediatric audiologist, setting those realistic expectations with the parents, because to your point, whether it is programming or mapping, it's not going to be the same as this natural mechanism that we call our sense of hearing.

Valli Gideons:

Yeah, it's a real misconception, which I hope the work that I do and others like me is starting to help make - just spread more awareness about how much work it is for the kids. And we present every school year, even just did my last one for my son, now it's via Zoom, but all the teachers in one space and I do a little presentation about this is what it's like to be a kid with cochlear implants. And then the kids share as well, and the teachers every time say "thank you". Those are things I just wouldn't have thought about. Even though they have the 504 educational plan in front of them, they know they're not supposed to turn their backs. They know they're not supposed to cover their mouth, but there's something about explaining it person to person that every time, I'm so thankful that we get to do that and that people are open to receiving it.

Blaise Delfino:

Not only are you advocating for your children, but they're advocating for themselves and it's another way in which they're able to increase awareness amongst their teachers. When we were talking a little bit about the technology aspect of it Valli, what are some common challenges that parents face when raising children with cochlear implants, and how do you address these in your writing and your advocacy work?

Valli Gideons:

I think probably the biggest thing that I see, even hearing aids, but cochlear implant is how do I keep it on? That is probably the biggest question that the parents of littles have. I mean, it's crazy. It comes up daily more than once a day I'm getting a message or comment or something reaching out, how did you and I really pivot from - there's now Etsy shops and you can go find all the hardware to try to help keep it on, but I think the biggest thing to stay focused on is teaching your child why they should keep it on. And that's going to come through repetition, consistency, positive experience, bathing in language, music, reading, I mean song, dance, having fun with it, just making language, just something that's celebrated. And then when that - it'll happen different for every kid when it connects, they're no longer throwing it off unless they're in the fit of a toddler tantrum, which will continue to happen. But then, I mean we had a down battle.

 Blaise Delfino:

You didn't have any of those, right Valli? <laugh>

Valli Gideons:

My battle was this kid, he was a handful. He was a big kid, he was rambunctious, he was curious, he was physical and the thing would just be flying off. So once he finally made the connection, which it seemed like it took forever, but he was like 18 months, now I look at an 18 month old and think, that's so young. And when he made that connection, so then what we would do if he wanted to throw a fit, it was never going to be a power struggle with us. We had decided we're never making this implant a power struggle. We just set it up on the counter and then okay, time to put some music on. Guess what? We're dancing little sister.

Blaise Delfino:

Hmm.

Valli Gideons:

"I need my ear. I need my ear. I need my ear." That's what they call them. The kids call them their ears. I know some people, adults do not like that, but I'm like, Hey, my kids named it.

Blaise Delfino:

Again. It's their story to tell. What I find to be so important and is a buzzword that you brought up when you talk about language. So, when you're raising a child who presents with hearing loss, and that word language comes into play, which is a code in which ideas are shared. So, you not only have a decrease in hearing sensitivity, but now this child and eventually they will reach those language acquisition milestones. What was that like in your experience, Valli?

Valli Gideons:

Well, since both kids had the same condition, it's all we knew and we really weren't measuring them next to hearing peers per se. When they were littles, we were just doing the work, going to auditory verbal therapy, speech therapy, and then practicing it at home. I mean, I really took it on as a parenting style. And so they never had a delay, and they always had access to a language rich environment. So, there might've been some articulation issues along the way. But once they got their CI's and were able to very effectively communicate with the audiologist, I mean from a very young age, they could describe what was happening. Like, oh, it sounds like an ocean or it sounds like very young they took ownership and were able to articulate, which was very helpful. And I don't think we really ever saw delays in language or academics or socializing or anything.

Blaise Delfino:

Now for the visitors of "My Battle Call", when they do have a child who is struggling to reach some of these language milestones, how does your community cultivate that supportive, warm encouragement with those families that are struggling with the language milestones?

Valli Gideons:

Yeah, that's a really good point because again, I can only empathize and we've had other issues, but how difficult that must be from all parents are measuring these milestones no matter what it is. And comparison is definitely the killer of joy. Know that every kid moves at their own pace, and as long as you're doing all the things, you just hardly have to trust that they're going to get what they need. And I mean, I don't know if catch up is the right word, but definitely I always advise, make sure you consult with your audiologist or one of your experts to make sure the technology is working correctly, make sure that you're providing them language, a language rich environment, which that means different things for different people.

Blaise Delfino:

For sure. And Valli, everything you're saying here is really navigating through the fog. The fog is made up of all of these external challenges, the grieving process.

Valli Gideons:

Yeah. Again, I think I never was grieving my children - a loss for my children. I think I always saw them as whole. They don't need to be fixed. So, I think that's coming to a place of acceptance because if you weren't expecting this, people might get caught up in why would you have to accept them? They're your child and dah, dah, dah. It's an acceptance of this is something I didn't expect and now I've had time to process and digest it. I think there's a big difference

Blaise Delfino:

Yes.

Valli Gideons:

And separating your love for your child and how you see them versus your own personal emotions you're going through. It's a grief for what you imagined, but this is true for all parents. You do not end up with the child you imagined.

Blaise Delfino:

I remember you said that our first interview, yeah.

Valli Gideons:

A hundred parents, they're going to tell you. My best friend, she's a surfer. She writes books about surfing. She goes on vacation. She has a child that doesn't like the ocean. She is in a different way, grieving that she imagined she'd have a kid that she'd be out there on the board with, and she's not. I could tell a million stories that are like that. So, I think it's really just, it's an acceptance and it's just a re-imagining. And then like I said earlier, we didn't have a lot of examples of seeing, not that it didn't exist, but seeing older kids, teenagers, young adults that were thriving, living with hearing loss, we just didn't have access. So, I really believe that's why we wrote the children's book, and that's why I think social media can be so positive is seeing is believing.

Blaise Delfino:

Yes, absolutely.

Valli Gideons:

You see it, you can believe it, and it will look different for sure. There's a lot of people who are not going to allow their child who has a CI to play football, completely respect that. However, for our family and for this child, the rewards have outweighed the risks, but that's a very personal decision. So, grief, you cannot go around it or under it or avoid it. You have to move through grief. So, that's why I want this book to give people permission to grieve or use a different word to say, this is hard. This is not what I expected. And it is hard. It doesn't mean there's anything wrong with your child or you don't accept them, but it is hard. All the extra appointments, all the extras, if you're going to implement sign language, learning a completely different language, that is not easy, and it doesn't mean you're going to do all these things as well. It's exhausting.

Blaise Delfino:

I'm happy you bring that up, Valli, because first and foremost, you are a sounding board, no pun intended for this entire community, and no, your child and your children, they don't need to be fixed. When we talk about the grieving process, we actually recorded an episode about grief and hearing loss, and there's a term called radical acceptance, and it's very difficult sometimes to get to that point, but to accept not only as I am, but as they are as well, because as humans, it's like if we're not present in the moment, we're either thinking about the past or the future. And that's where that gap comes in of anxiety and things of that nature. So I'm so happy that you bring that up. Number one, these kids don't need to be fixed. Number two, just be loving. Be there for them.

Valli Gideons:

I think another thing I would definitely encourage parents is to allow your children to also process the feelings they have about their hearing loss. And I know you probably speak to a lot of adults.

Blaise Delfino:

Well, how do you do that? How do you sort of talk to your kids about that?

Valli Gideons:

Well, when they're talking about, I mean, we have a really close relationship, and I think one of them was having some frustrations with socializing. The older you get, the more sophisticated socializing becomes, and teenagers mumble and they talk crosstalk and talk from the side and behind you. And so one of my kids was expressing how frustrating it is and how sometimes this just sucks. And you know what? Instead of saying, oh, but you have great friends and blah, blah, blah, blah, blah. I said, that must be really hard. I can't imagine. That must be really hard. Instead of trying to just again, swoop in and fix it.

Blaise Delfino:

No toxic positivity because oftentimes it's this toxic positivity that's like, oh, it's fine. You'll get over it.

Valli Gideons:

And also just that's their experience. There are things about it that are hard, and if they think it's too much for me or their dad to hear it, then they won't come to us with it. They don't want to burden us and make us feel sad

Blaise Delfino:

For sure.

 Valli Gideons:

Or walk away or, you know, there's been lots of occasions like that. Instead of, my instinct would be, I want to fix this. I want to encourage you. I want to lift you up. Instead, just sit with them on, they say, sitting on the bench, just sit and listen and empathize, and don't bring it back to yourself. Well, that happened to me one time. No, it didn't. The only two in my family that can talk like that are brother, sister who sit and can talk about scenarios. They were talking about in chapel at their school, how there was a mumbler up there at the microphone and they were laughing about it, but they could both relate. And my daughter Harper's like, yeah, I just tune it out. I'm like, well, that makes me sad that you're tuning it out. The message might've been something. She's like, no, actually I was just really tired anyways.

Blaise Delfino:

<laugh> No listening fatigue here! Valli, through your work, again, you've reached thousands of kids with your books and just families with your books and you've made a presence in classrooms and libraries across the country. How does it feel to know that your writing is making a positive impact on young readers and helping to promote understanding and empathy towards children with hearing loss?

Valli Gideons:

It's amazing. Whenever I'll allow myself to really let that in, because as a writer, you just send your words out into the universe and then they're not yours anymore. They're just released. So, to get so much feedback and to get to meet face to face with the people who it's touched, yeah, it's a gift that could take a bit of what was really hard and then help others. It's a gift. I don't know how else to put it, just I feel really lucky to get to do this.

Blaise Delfino:

It's sort of like when you actually stop to think about all the incredible work you're doing, I'm interpreting it as you are so just focused and tuned in that when you actually take time to step back and reflect, it's like, holy smokes, that is, that is incredible. My work is making such an impact, and truly on behalf of the entire hearing healthcare industry. Thank you, thank you, thank you. Because it's conversations like this, it's platforms like "My Battle Call", it's books like "Navigating Through the Fog", its all of these things that are going to allow us to not only cultivate the community of empowerment, but also raise awareness of hearing healthcare. As we close out, Valli, what exciting projects or initiatives that you can share with us are you currently working on, and what can we look forward to from Valli Gideons in the near future?

Valli Gideons:

Oh, goodness, goodness. Well, I've relaunched my "Through the Fog" book, so have a pretty strong, robust team of people, advocates and readers helping me to relaunch, because you write a book and like I said, you send it out into the world, but if it doesn't get in the hands of the people who need it, then no bummer. So, really trying to focus on getting this in the hands of people who need it. I come across them every day. Every day. I think I said earlier, we are sending a kid off to college next year, so we're in the throes of decision-making in that realm. My daughter will start basketball season, her team all the way and won CIF championship in California. First time in school history.

Blaise Delfino:

Holy smokes. Congratulations!

Valli Gideons:

Yeah, she was Player of the Year. Thank you. So, that started yesterday.

Blaise Delfino:

 Incredible.

Valli Gideons:

And we're in the middle of football season, so our kids' sports, like really just monopolizes all. But then my next big project is going to be another children's book that's in the creative stages, but that's about where it's at right now. And that'll be Battle's children's book, and it will be for little kids, and it's humorous.

Blaise Delfino:

We are very excited, here at Hearing Matters to continue to, number one, support your cause, support your family, and support your community in any which way that we can. Because, there is such strength, there is such strength in collaboration, and we consider ourselves so blessed to be able to have this platform, Valli, because it's allowed us to connect not only with you, but other individuals in the community, and there is strength in this collaboration. Before we sign off on the Hearing Matters podcast, what is one final statement you would want to share with families who were just told that their son or daughter presents with hearing loss?

Valli Gideons:

I would say take a deep breath. I would say allow yourself time to process and digest. Stay off the internet because you can be also inundated with over amounts of information, which can be so overwhelming. So, take your deep breath, give yourself time, and then from one mother to another parent to a parent, it will be okay. And it doesn't mean it won't be hard and there won't be challenges, but it will be okay. Give yourself time.

Blaise Delfino:

You're tuned into the Hearing Matters podcast. Today we had Author Valli Gideons not only talk about her experience raising two children with hearing loss, but also her latest book "Through the Fog: Navigating Life's Challenges while Raising Kids with Hearing Loss". Check out her, not only her most recent book, but also her previous works in the show notes and visit my battle call.com to connect with Valli. Until next time, Hear Life's Story.