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Read the full transcript here

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 

For more resources and research visit:

All About Audiology Website 

All About Audiology Facebook group  

All About Audiology Instagram

And the Prodana pay-it-forward platform here: https://prodana.org/practioner/lilach-saperstein/audiology-counseling–dr–lilach-saperstein

(Guest Links)

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Mentioned in this episode:

• company Cochlear
• Priscilla Soare
• Liz Petrone’s The Price of Admission

Listen Next/Related Episodes

• Lisa Honold – Internet Safety
• Michelle Wagner- writing a book
• Children’s Books, Literature and Representation – Episode 69 with Katie Petruzziello

Transcript:

[LS]

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?

[VG]

Thank you so much for having me back. I’ve been great. It was definitely pre-

[LS]

Pre-pandemic—in the old days.

[VG]

Yeah, it was a long time ago, so I’m really happy to be back.

[LS]

I went to look at the stats and that is a top 10 episode. Now there’s over 80.

[VG]

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.”

[LS]

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.

[VG]

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.

[LS]

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.

[VG]

Well, I’ll let you know when that happens.

[LS]

Oh, I see. [Laughs]

[VG]

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