All About Sharing YOUR own story – Episode 84
Today on the All About Audiology podcast, Dr. Lilach Saperstein Au.D. welcomes back Valli Gideons from My Battle Call for a continued conversation from their initial chat which took place in 2019 during episode 17. Valli speaks about the two books that she has written since. Her first book, Now Hear This, was inspired by a writing sample that her daughter Harper wrote as part of an assignment in school. Valli’s most recently published book Through The Fog is written from her own perspective of mothering her children, both of whom are both cochlear implant recipients. When describing this second book Valli says “ It’s truly a love letter to help serve.”
This week on the All About Audiology podcast: (Bold Important Info Below)
- 1:50 – Both of Valli’s kids received hearing aids as infants
- 5:00 – Kids should learn to take responsibility for their own cochlear implants
- 8:00 – Any book, such as Valli’s Now Hear This, can be written from the voice and life perspective of a child
- 13:00 – Providing support to those going through a similar experience via social media is a powerful way to give of yourself and build community
- 17:30 – Before sharing private information through a book or on social media, make sure to get your children’s consent
- 21:00 – Language matters depending on context; one may use different terminology to describe their life condition if they are talking to a doctor versus a friend
- 26:00 – Parents: Dealing with your own grief doesn’t mean you love your child any less. Audiologists: Speak to a child AND not at or about, a child
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Mentioned in this episode:
Listen Next/Related Episodes
- Lisa Honold – Internet Safety
- Michelle Wagner- writing a book
- Children’s Books, Literature and Representation – Episode 69 with Katie Petruzziello
Welcome back to the all about audiology podcast. I’m your host, Dr. Lilach Saperstein, and this is the show where we talk all about your experiences with audiology, with hearing loss, with parenting, with advocacy. This is where it’s really about your experiences, parents and educators as well, professionals working with us. We love you all. This is a very exciting reprisal episode with the one and only Valli Gideons from My Battle Call. You must have heard of the blog. You must have heard of her Instagram and the new book, which we’re gonna be talking about as well. The last time Valli was on the show was in 2019. It was episode 17. I will have that linked, and we talked about cochlear implants and the beginning of your journey when the kids were small and how all of that went. So definitely get part one, and here we are in part two. Valli, welcome, welcome to the show. How have you been?
Thank you so much for having me back. I’ve been great. It was definitely pre-
Pre-pandemic—in the old days.
Yeah, it was a long time ago, so I’m really happy to be back.
I went to look at the stats and that is a top 10 episode. Now there’s over 80.
Well, I have a very, very dedicated following who, when I share things they show up, so I’m going to give that credit to my mom—my mom actually kidded me the other day saying, “I listened to all your podcasts, but I’ve heard most of your stories by now.” “Well, that’s kind of my story, mom.”
That’s funny. Hi Valli’s mom, and thank you for all the support—and to everyone.
Will you give us a little short background for those who are new to your family? But really they should go listen to the first episode.
Sorry, mom. But I’ll just put it in a nutshell. Two kids. 21 months apart. Our first born failed the infant hearing screen, came back two weeks later for the ABR. We were told that he had severe to profound hearing loss, and that started us on the road. No family history. They had told us it was probably just fluid in the ear.
I talk about this. I open it in chapter two, I think, of my new book, and I think it’s one of the chapters that resonates most with parents because until I wrote it and put it out in the world, I had no idea how common this was and be so taken aback when you were not expecting it.
And we did three genetic tests and a whole series of things. We ended up finding out he had Pendred Syndrome. So then when we were pregnant with our daughter, we knew that she would have a one in four chance of also having the syndrome. It was a different dynamic then. So both kids born got hearing aids as infants, then my daughter has one cochlear implant and a hearing aid, and my son has bilateral cochlear implants, and that’s kind of the way it began.
I think a lot of young parents ask the question at what point did they take ownership, and really understanding—also in their identity, but also with changing batteries and with the devices, from when it was all on you to, when it transferred sort of into their responsibility.
Well, I’ll let you know when that happens.
Oh, I see. [Laughs]
I mean, it’s been so gradual that it’s hard to pinpoint. I think just as soon as they’re able to do a little task, you let them do it. Like the first time Battle was able to reconnect the magnet, external magnet back to his head, he was 18 months, and I remember it like yesterday. I see his little face. I can see his eyes lighting up. I can see the connection. It was profound.
I just saw a friend posts, a video of her son doing the same thing. This is before iPhone. So when we had our kids, so I don’t have any of this on video or documented, just it’s all etched in my mind, these moments, but that was huge. And going to their dry box in the morning and getting their own devices and bringing them to me was huge. And we’re just starting—now, my son carries a USB ported battery backup in his car, and that’s been a game changer because he’s driving himself. He’s got his car with him. So, he’s learning and he’s out of the house now more than 12 hours. So when he knows he’s not coming home, he’s making sure he has that backup, but if he comes home, then he’s leaving to go somewhere else, he changes his batteries. It took a couple of fails for him to be somewhere socially, and have his batteries die and be like, ‘Oh no, whoops.’ It only took a couple times at this age for him to not forget anymore. It’s just been really gradual.
Now, the next thing I’m preparing to do—I’m just talking Battle cause he’s 17, but Harper would be capable to—is get on the phone with our company Cochlear and help start ordering parts, and I’m going to have him walk through that with me the next time. I’ve never done that, and then we always use the phone to order parts, but I know you can do them online as well. So [we’ll] play around with that. So that’s kind of the next stage.
Both kids take their Aqua kits when they’re going to water and change things out and have cases, they put their devices. We’ve really not had too big of an epic fail with that.
You know, I’m really happy you’re breaking it down cause it’s not like, “I will hand you the Baton and now you’re in charge of everything.” It really is so slow. I’m glad you’re breaking that down to different milestones throughout their different ages.
And I think each kid is different. Like Harper, who’s 15 is much more responsible with her devices. They[‘re] never left on a counter or on the Ottoman or in the bathroom, where my son—it’s like our next children’s book is going to be Where in the World Is Battle’s Ear because the places he leaves—it’s mostly his left. He relies heavily on his right. That’s the one he got as a baby and the left one, he didn’t get till kindergarten. We call it the baby ear and the battery dies sooner on that one and he’ll just leave it in the most random places. So we had to implement consequences.
Eventually I just had to say, “You lose your phone if that ear isn’t backing in its case at night, because when I’m no longer here to help you search for it, you’re screwed, kid.”
That’s a big consequence. So I’m thinking that works. [Laughs]
Yeah. You have to find what works for each kid, right?
Yeah. And I also like that you mentioned before about how he experienced his own—‘Oh, I don’t have the battery,’ and then he got the natural consequence of that, instead of hounding him, nagging him for six months. It’s like, “Oh and you miss it? Oh, now he is responsible.”
It’s really hard as a parent. I mean, this is true in parenting in general. It’s hard to let your kid fail. It really is, but once I’ve taught them and then they still make a different choice, then you have to kind of let them fall then reason. So I’m just talking more about him because he’s driving now. He has a different level of independence and he doesn’t want to miss out.
I’d love to hear more about the books and the process. There can’t be anyone who’s in All About Audiology Instagram who doesn’t know about Harbor’s book and now your new book. So, of course, I’d love to hear your process and how you even decided to write about all this.
Well, what’s crazy as last time we spoke,Now Hear This, our children’s book didn’t even exist. Here it’s two years later, almost to the week that I’ve published the second book, which is crazy. So the first book—I’m sorry, mom, I’ve told the story – but you know, how did you even decide to write this book? Well, I mean, it was kind of a cool thing, how it came about, I’ve been a writer my whole life, and always had people saying, “You need to write a book. You need to write a book,” and I just really didn’t have that book in me because I just didn’t, and to sit and write a book, you have to really want to write that book. I mean, you do.
So Harper came home, I think it was out of summer, fourth grade, last day of school. She dumped her backpack on the sofa. The old sandwiches are at the bottom. I mean, it’s like just stuffed with everything that’s been in the classroom that she had to bring home. Thanks teachers. I appreciate that.
Anyways, I started going through it and I got to her writing journal that her teacher had them using all school year and each morning, they started out with a writing prompt, which I just think is brilliant. And they would be different prompts, sometimes super casual, like what’d you do this weekend? But this particular one that had kind of stopped me was what makes you unique? And I read what she wrote. And summing it up is that I am unique because I am a Deaf. I compete in basketball to show other kids that even when you have hearing loss, you can just be a typical kid and all these just profound—I mean, for a fourth grader, Harper’s story is the book. Not my story. It’s her story. I want this on every child’s nightstand, and so that’s kind of how it began. And I just told her, ‘Hey, we’re writing a book.’ Harper didn’t believe me and then we found an illustrator Priscilla Soares. Some of you have heard of her. She had done another book, How I Hear, which is a great book and I just gravitated towards her artwork. And she also has hearing loss and a son with cochlear implant. So it just was like, meant to be, and we started the process of putting pictures to the manuscript, and then that’s when Harper was like, “This is actually real. This is going to happen,” and so we launched that February 2020. We have book tours set up, had all these classrooms set to visit, and then COVID. We did the best we could virtually, but it did take getting over the let-down. You work so hard on a book and then to have everything just canceled book, launch party, all the things. I mean, we were going big but it still was at number one and thousands of copies have been purchase, and I just love it. People send me pictures of their kids with the book, and I share it with Harper and it just makes it so real. We signed copies with personal messages to kids. So that’s how Now Hear This became a thing, and then somehow in the last year, I decided I would put a collection of my essays together and just kind of package it in a self-publishing way. I just wanted to have something I could take with me to speaking events, also just to have my work put in a trademark, copyrighted package. And a couple of my writer, friends had done this and I thought I’m going to just do it.
So then, I decided to call on one of my good friends from college who’s a brilliant writer and ask if she would help me weave them together and edit them. Well, the next thing I know, this girl, she’s coming through all my work, she’s printing it out, we have it all over my dining room table—we’re doing this virtually. She’s on the east coast and I’m on the west coast of the United States.
She’s like, “Vall, this is more than just a collection of essays. You need to really look through your work and see what themes are here,” and I was like, “Thanks a lot.” I mean, it was like 25,000 words worth of stuff laying on my dining room table. And I kind of put it aside. I’d get overwhelmed and put it aside.
And then just—I had a back injury, and I was basically told by my doctor, you must lay on your sofa. It was only a couple of days, but that’s when day night it started flowing how I was going to put it together and just started elaborating on stories. And so a year later, now I got a professional editor and then I called on one of my good friends who does design and layout, and my friend Benny continued to be part of the rewrite and collaborative, creative, and then another friend was the queen of the Post-it notes, finding all the minutia. We were in the weeds. I mean, we were in the weeds, but it’s like, once you decide you’re going to do it, you just have to do it.
It’s a big project. Definitely.
Yeah. I mean, I’d been approached by a publisher after the children’s book about writing my book, and she wanted between 60 and a hundred thousand words, and I was just like, “I do not have that in me. No, this is not the right time. Thank you,” and it just came. It took an organic process for me to be able to dive into it, to sit and look at a blank screen and write a hundred thousand words would not have worked. It’s a passion project.
Definitely, and it’s amazing you have such a team. So many people in your life are jumping in here. That’s amazing.
People, you know, since the children’s book I’ll get, how do you write a book? Tell me everything you know. First of all, no. I’m not going to tell you everything I know. I’ve spent years and years and years learning. So, do your research. That’s how you do it, and then for me having this platform, starting on Facebook. I have such a big rich community on Facebook. I know people think that’s for dinosaurs, but it really is an engaged community and then Instagram, and then all these writer groups I belong to. It took over four years of building a community that I feel I can serve.
That is why it works because this is not some grandiose thing I’ve done, where let me tell you all about me and my family. It’s truly a love letter to help serve because I’m in the trenches with these people. I know their struggles, and so now it all makes sense. You know, “People are like, you work on social media. That’s just weird.” No, it’s about building community.
Sure, and it’s so powerful that everything you write about has that energy of supporting other parents and making them realize that you got this. You’re going to get through this. You have so many supportive. And there is such a beautiful engagement with the community.
That’s something that I really value, admire. [I’m] trying to also do with the podcast and with the programs that I run—are all about that community and that support, and I think it helps you when you get the support, but it also is very, very rewarding to be able to give support and say, “Hey, I do know things. Our experience can help other people.”
So I want to encourage anyone who’s listening to be open about what’s going on for you, because you never know who’s listening and who needs that encouragement that day. The Instagram hashtags, I will not stop talking about how powerful it is to find people in your specific topic. There could be a hundred people in the whole world talking about some things and you can find them.
I think I just wrote this in a post about my book. When it went to number one, I mean, I literally woke up and it said, number one bestseller. And I mean, I’m not tooting my own horn. I’m like, “That means people showed up for me.” I poured myself into my platforms and you don’t always know who you’ve touched. I know there’s a lot of people that follow me who never comment and that’s fine. You’re showing vulnerability to comment and to share, but for the book to be able to go to number one In two days meant not only did I do this as a labor of love, but not people showed up for me too.
I give, I give, I give. I serve. I do it humbly, and I really do consider it a privilege, but knowing people showed up for me also just brought me, I’m telling you, into the fetal position.
I could imagine it. It can be so overwhelming, so wonderfully—awe, inspiring.
Right. That is it. And then the other part is, and I have a couple of my writer friends who have become really close friends through the years—going to conferences now and going on retreats together. So, not only met them through the internet, but have actually spent real life time with them, and a couple of them were my beta readers early on for the manuscript. And so it’s been really fun. One in particular, her name’s Liz Petrone. She writes a comment in the very beginning of the book before the introduction. Her book was called The Price of Admission. One of my favorite writers. Best storyteller I know. And she’s lived through a lot of hard—different hard than mine, but hard, and that’s where we just speak a universal language to each other. And anyway, when it was getting closer and closer to going live, she kept reaching out, “How you doing? How’s it going?” I’m like, “I’m ready to burn this thing and I’m ready to throw it,” and she goes, “Okay, good. You’re doing good. That’s normal,” and like, once it goes, live, people are gonna read it. And then am I prepared for that? So I think was Glennon Doyle that said of her books and her work, “Once it goes out into the universe, her work is done.”
Have you received any negative or why are you writing about your kids—has anyone said that?
It’s too soon. They have been putting my writing out there since right after college. I mean, my first job as a writer was in a magazine, a weekly magazine. People had to do a letter to the editor if they didn’t like what you wrote. Get a thick skin, but yeah, this is the most vulnerable thing I’ve ever done because it’s personal and it’s not going to be for everybody and that’s okay. I mean, I am not for everybody because everybody is not for me. I told our story and actually, I told my story. I didn’t tell my kid’s story. I told mine, really from my point of view and it’s not for everybody and that’s okay.
That’s really healthy. I’m very impressed.
Yeah. Well, I also think once in a while, I’ll get a comment like I’ll write a piece about my daughter and someone will comment this applies to sons too. And I’m like, “Yeah, if you look through my feed, you’ll see, I write about my son as well but if you want to write a piece about your son, go for it.” It’s really easy to be a critic on the sidelines. Go ahead and write your piece. If you would like to pour four years of your life into a book, then we’ll talk.
And so how did the kids take it? Is it that they might say, “Well, I don’t want the whole world knowing about the things that are difficult for us or our struggles and our triumphs to,” Do they ever say they don’t want to be so public or—
Well, that’s a very good question. Cause I know a lot of people who are sharing their stories with younger kids have reached out to me about this.
And the good thing about having started this when my kids are older, they actually do have a say and I can run things by them. Now I cannot share a picture without my daughter’s approval. I had the cutest picture of us and she vetoed it and I was like, “But it’s one of my favorites.” She’s like, “No,” I’m like, “Okay.”
But I don’t tell their story. I’m very clear. It’s my story. As the mother, I’m not sharing their hardships. It’s my story, and they were 100% supportive of this book. And in fact, Harper was the first to read the first proof copy. I have a picture of her sitting in her pajamas curled up on the sofa. She didn’t put it down after she’d like, “Mom, I like it”. Okay. I’m crying. You’re okay with it. She goes, “Yes,” And Battls said, “I don’t care. Whatever.” I didn’t know. It was nothing embarrassing and it’s not super personal as far as sharing their secrets and that kind of stuff. So, but absolutely and people will be young kids, I think you do need to think about it when my child is 10 or middle school, are they going to be okay with what I’ve shared? Videos, photos. It’s just something to think about.
It’s so important. We did an episode about internet safety and teaching our kids, the boundaries we have around it, watching their apps, but also about this whole idea of do we put our kids online, post their pictures in what forum publicly, or via a friends only type of things, private accounts.
There’s so many versions of how to navigate this, and each family really does need to make their own decision and their own research about it. Definitely the people who explore. Their children and their whole business model is their children that I find quite problematic and that’s different than people sharing their journeys and their experiences.
But I think you said something so incredibly profound that applies for everybody who’s listening. I want to say this right. I’m reflecting to how you said that it’s your story. And it’s your experience and how that is true for everybody to make sure that you’re separating what’s happening to your kid, their experiences, their diagnosis, and their struggles and their surgeries and their devices and their IEPs.
And you, you are the parent and your understanding of that and how it affects you in your relationships. I mean, you and your identity. So I really focus on parents. Can you advocate, do you understand this? How does this affect your understanding of your future and your role as the parent? And it’s really hard to be doing both of those things.
You want to remember your own life and being there for your kids.
Well said, you said it first, you picked up on that. And I think it’s important. And even some of the language I use now has changed and evolved. And I think to be human is to change and course correct, or see things differently. I’m a walking contradiction. I might’ve said something two years ago that now it makes me cringe and that’s okay that I’ve learned and know better and do better.
You know, Maya Angelu said that and now I go to my kids because when it’s about their disability, they get to name it. And I follow that. And people come for you. Like not so much on my account, but I see it in a lot of other places because language does matter.
But also the person with the disability does get to name it. And so special needs is a big one and I used to use it and it used to be kind of a thing. So when we started this, I mean, Battle’s 17. So special needs parenting, special needs kids programs for special need and my kids always were cringed by the world special.
They would use the ghost quotes are air quotes, you know, and say we’re special. They didn’t like it. And now the more I’m reading on it and adults that have disabilities. It’s patronizing.
There’s a level of self forgiveness that goes into that. Times change, sensitivities change, and that you’re willing also to change and not go back and just hide in a closet and delete everything you’ve ever written, and people should look through that lens of change. You could see that absolutely. Throughout my podcasts as well, a lot of changes. And at times you get tongue tied, then you don’t know which version you should say, but we all have to have a little attitude for each other and ourselves when it comes to that.
But yeah, definitely there’s room for. Yes.
And also my kids are not easily offended. I think it’s generational. They’re just a much more tolerant generation. My daughter’s friend group is going to change the world. These people they’re just so accepting of differences. They are not easily offended. If someone gets a word wrong, they’re not.
So even hearing impaired—I mean, some people have a visceral reaction to that. My kids are like, “Eh, it doesn’t bother it. They have hearing loss. It’s deaf gain.” My kids are like, “No, that’s just dumb for them.” Right? So some people might want to say deaf gain and that is totally acceptable for them. My kids would be horrified if I said deaf gain.
If I’ve said my kids have death gain, that doesn’t match us. I follow their lead. That’s all I can say. Now that they’re at the age, they’ve always had their own feelings about it, but now they can really articulate and think maybe more on an analytical, deeper level.
And it’s really context dependent too.
If you’re talking to the doctor and there’s medical terminology, that’s going to be there, and audiology has certain ideological terms that are not appropriate for socially identifiers, the way people would like to identify themselves as, and that’s a bridge that we’re always trying to connect. But, you know, there’s still room for, okay for in this context, we use these terms and this other context is less appropriate.
And I’m not an expert in the terminology, nor do I pretend to be. I just go with it. And I don’t say I’m a special needs parent because that’s now labeling me. Me—I’m a parent of children with hearing loss, avigating life’s challenges while raising kids with hearing loss is what we settled out of.
My kids said yes, that, so that’s what I used.
That is so, so wonderful that you are sharing your story, to continue to inspire and encourage and connect people. It’s so wonderful. Thank you for sharing your story. Okay. So I always end with this last question and that is what advice do you have for our listeners? So we have two big groups, it’s the parents like yourself, and then the professionals, a lot of speech therapists, teachers, audiologists. So advice for them from Valli?
Well, read my book because the last final chapter is what I would have said to myself when this all began this journey, rather than just plug my book though, can you tell I’m super passionate about it?
And it just came out a week ago. So, I mean, I have a book on the brain, but I don’t have the device. I just have so much encouragement for the new parent to stop and take a breath. Do not feel like you have to know everything about everything immediately. And that is where access to information is probably not always helpful. There’s so much pace yourself and know that you’re possibly going to experience feelings of grief and give yourself time to work through that process of those stages and it doesn’t mean you love your child any less cause that’s something I wrestled with and I write about that. It doesn’t make you feel like you’re anything less.
I felt guilt for feeling that way because I should just be grateful. I had a healthy child and it didn’t mean I wasn’t grateful if you’re having feelings of accepting something you didn’t expect—it’s okay. it’s okay.
And professionals—our audiologist is an Angel. I love her. She’s in the book. We’ve going to see her next week and we cannot wait. It’s like a field trip for the kids now. It’s so fun. It really is. And she has always spoken to the children, not about them, not at them, and that has carried through today that they have such a rapport with her. I mean, they know her, she knows them and she cares about what they have to say. No, that that patient is a person. Even if they’re a little, get them involved in the process from the very beginning and treat parents with empathy and patients provide encouragement for every little victory.
One time, we had a negative experience with an auditory verbal therapist. We were in transition trying to find a new one, and we spent an hour of her telling me all the things Harper wasn’t doing and my mom happened to be with me at that appointment. And when we left, my mom said, “She did not say one thing positive about all the things Harper is doing.”
I wonder, I leave feeling defeated. You should not feel defeated. You should feel encouraged. Honesty, by encouragement. So there’s so many great professionals out there though. So I celebrate all the people out there working for kiddos with hearing loss. I’m super grateful.
I think take a breath and trying to enjoy your baby, your child, everything that you can learn today, you can also learn tomorrow.
And I think it’s also important for people to know that there are people, like myself, and many others who will help you sift through that information and actually tell you what is relevant to you and what’s not because I’ve had families come in with questions about a bone anchored hearing aid. They read articles about the BAHA and their child isn’t a candidate for that. So why did you read 16 articles and pages? Because they had just sort of stumbled upon it. And that’s very understandable because you want to know as much as you can, but don’t be afraid to reach out.
You just nailed it. And I think for anyone beginning this journey, that is such great advice, just because it’s on the internet does not make it true.
And also, there are so many varying opinions that you have to create a trusted team of people around you. And then you have to trust your own gut and intuition and you have to cancel out the noise. We were lucky that our kids were the age. We didn’t have all that noise because the internet wasn’t really a thing. So, I didn’t have to read hundreds and hundreds of articles telling you what we should do. A hundred percent no way. And ultimately you do the best you can and be willing to change. If something doesn’t work, be willing to try something else—Course Correct. It’s the word we use and every child’s different. So what worked for my kids?
I never tell people what they should do. A hundred percent. No way will what worked for my kids, work for your kids. My kids have the same syndrome and the same family, and they respond differently. Just do the best you can.
That’s true. That’s an amazing place for us to wrap up this episode again. Number one. So congratulations.
It’s Through The Fog.
I will definitely link that in the show notes, as well as the transcript of today’s interview and also the link to our previous conversation and many other podcasts we’ve done with other officers in this space. So that’s sort of been a little series you could say with other authors fighting Mila and Mikey on the move and others, so we’ll definitely link that. And in addition, I’d like everyone to know that I am here for you. And if you’d like to book a time to get to know, so I can learn about your story and your experiences, you can absolutely do that for a free consultation. Just get to know each other. Cause I love to know who’s listening and.
So be in touch that’s through Instagram or Facebook and the Facebook group, and I’m always very happy to be in touch. Thank you, Valli for being on the show.
Thank you so much for having me
Have a great day.