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All About Cochlear Implants- Episode 17 with Valli Gideons

Welcome back to the All About Audiology podcast. I’m your host Dr. Lilach Saperstein. In this episode we’re going to be talking all about Cochlear Implants. As you know, the reason I make this show is to spread information, support and guidance around everything that has to do with your journey in audiology; hearing, hearing loss, hearing aids, cochlear implants, sign language. What are the decisions that need to be made when you get a diagnosis or someone you know is dealing with hearing loss or navigating any of this. So the reason I’m making this episode is because there are so many myths about cochlear implants out there, just misinformation and things that people don’t really understand about the whole process.

So today I have invited Valli Gideons from mybattlecall.com, a mother of two children who have cochlear implants, who is a writer, who’s an advocate, who talks a lot about their journey. I’ve invited her onto the show to share some of that with us. And then also included in the show notes, a link to an article that I’ve written about the common myths and misconceptions around cochlear implants, such as cochlear implants restore hearing and cure deafness, cochlear implants are easy to use, cochlear implants will work instantaneously like flipping on a magic switch. I’m very passionate about this topic and spreading the information to the people that need to hear it. So if you are making a decision for yourself or your child or a loved one about the cochlear implant, it’s really important to be empowered, that means that you know what is coming, that you have information about the process and that you can be a really good advocate for yourself or your child. So you can go and read that article on the blog at allaboutaudiology.com and in the show notes you’ll have a link for that.

So let’s jump into the interview with Valli Gideons, a military bride who writes about raising kids with hearing loss, military life and other stories from the heart. She has a degree in journalism and wrote her first short story in second grade. She has co-written a children’s book with her twelve year old daughter about their hearing loss journey and is looking to get it published. You can find her on mybattlecall.com and on Facebook and on Instagram on the same name, mybattlecall. So welcome Valli.

Dr. Saperstein: “Welcome Valli to the All About Audiology podcast. I’m so glad you are here. You have a lot of experience to share and a lot of words of wisdom, so why don’t you start by introducing yourself.”

Valli: “Thank you so much. I’m so happy to be here. My name is Valli Gideons and I’m a mother of two children with cochlear implants. I’m an advocate, a writer and I’m married to a career marine so I’m also a military bride and I write about the perspective of raising children also with special needs, but in a military family which is kind of unique.”

LS: “Wow, that’s a lot of different moving parts and challenges.”

Valli: “Moving being the key word.”

LS: “Yeah, how many places have you lived?”

Valli: “We are getting ready to celebrate our 24th year of marriage and we have moved ten times.”

LS: “Nice, nice average.” (laughing)

Valli: “Yeah. So my children have moved, I think we counted six times.”

LS: “So we’d love to hear about your children and their journey.”

Valli: “Okay, well my son is 14 now, so without going into too much history, I’ll just say when he was born, he failed the infant hearing screening, and like most parents, this is pretty typical apparently. I didn’t know it at the time but we were told it was probably just fluid in the ear canal. So we took this little bundle home and spent two weeks just trying to keep him alive, right? Burping, sleeping, changing, all the things that any new parent is trying to accomplish sleep deprived, all of it. And we had to go back two weeks later for his follow up ABR (Auditory Brainstem Response), not prepared at all for what we would be told. We didn’t have family history (of deafness), I had never met a person deaf or hard of hearing, believe it or not.

So he failed and we were taken into that cold room no parent wants to be invited into and told your son has severe to profound hearing loss and he will probably need hearing aids or get a cochlear implant, go to mainstream high school, blah blah blah. And literally, I heard high school and they lost me, I’m like what, I have a two week old in my arms and now I’m being given information about where he will go to high school? We changed doctors after that, we pivoted because I didn’t think I was going to really trust being in the care of this particular facility that was so abrupt in how they gave parents this information. I’m not going to name the hospital but we were very blessed to go to another very large clinic and there is where we met our ENT, our geneticist, our audiologist, our auditory verbal therapist, all of the dream team.”

LS: “So when you had that really rude kind of abrupt conversation where they’re just not with a lot of empathy or compassion giving you this news, first of all what was your reaction, how did you take that? And second of all, after that, how were you able to say, ‘I actually don’t like the way we are being treated here.’ Where did you get that strength to say I’m going to seek care elsewhere? Because I know a lot of people in that state maybe would not have been able to make that decision. So I’m interested in that strength, where that comes from.”

Valli: “I think my husband and I are pretty strong, confident couple. He’s a career marine, he’s a colonel now, so I think sticking up for ourselves or advocating for ourselves is not something that’s very difficult. We were just lucky that we are kind of built that way and we both walked to the car bundling up our little baby, got him strapped in his car seat, we both just sat down in the front seat and wept, (thinking) ‘What were we just told?’ We both just looked at each other and said we are not going back there.

I’ve never actually really told the story about how that happened. It’s funny that I decided today to tell it. The abruptness of it, I guess I just felt like we were going to need empathy and support and we are going to need somebody who will not treat this like it’s no big deal. Because for two hearing parents who had no family history, this is a lot to take in. It doesn’t mean we aren’t going to accept it or love our child, but we need help here. And we were also lucky to live somewhere where there were options.”

LS: “Absolutely, it’s really the power that comes from sharing. I know that you do a lot of writing and advocacy and you share a lot with many other parents and really have built a community around this, that you don’t need to be alone, that this isn’t only yours, that there’s something really powerful about coming together and supporting each other. I think many people will relate to that just being sheer overwhelmed.”

Valli: “I think also we were a little older. We had waited to have children because my husband had done so many deployments. So at the time I didn’t know that would turn out to be a blessing that we were a little bit older and resourceful. But this is before literally there was no Facebook. I mean, my son is 14, it’s not like we can just go online and join a support group. We had to go through interventionists through the city, and our team of specialists, particularly our audiologist. I mean audiologists are angels to me. Literally, what you guys do and our speech auditory verbal therapist, they were really the champions for us and educating us. And we just rolled our sleeves up and got to work.

So with that being said though, I think that’s why I write that new parent that’s getting the diagnosis, yes you are going to roll your sleeves up and get to work but there is also a period of time that it’s OK to grieve. Feel the sadness. Feel it because if you are not expecting it, it would be true for any parent that gets a diagnosis for anything out of the ordinary that you’re not expecting, I think it’s a universal feeling, right? That this is not what I thought it was going to be. What is my child’s life going to look like. We didn’t really have any reference and that’s another reason I feel it’s really important to show my 12 and 14 year old children thriving. You’re that mom or dad or parent holding that baby to be able to see what is possible. We didn’t have that, we didn’t have anything to look to at the time. And so I think that caused a lot more worry and angst.”

LS: “Which is kind of ironic, because that maybe is what they were going for when they said, ‘Oh, by high school they will be mainstreamed’ but they kind of skipped too many steps and didn’t explain what they were talking about.”

VAlli: “Right. Exactly. I mean, it was not exactly probably what he was saying, it was how he said it, so flippant.”

LS: “Yeah, and also that they would even say that. How can they promise that? They don’t know what the outcomes are going to be. Very different than saying here’s what has been happening with our family to get a sense for other people. But I’m sorry you had to go through that really.”

Valli: “Oh, it’s okay. It gives me more empathy and understanding for others though because I know what it’s like to have someone not give you that compassion in the beginning.”

LS: “Alright, so you found your dream team at this other hospital. What happened then? Did you go forward the CI (Cochlear Implant) surgery?”

Valli: “So at the time, you have to remember back 14 years ago, they were not implanting children under the age of 1. So it’s been kind of cool to see how it’s evolving, the science. He got his hearing aids at 3 months, and so there were trips to the audiologist almost weekly because my son was the incredible, growing child. He grew overnight. It was crazy. And with that came his ears growing, and this was before feedback managers on hearing aids. So we got to deal with the dreaded whistle. Just thinking, ‘Is this as good as it gets? Okay, I guess this is just what it is.’ It was pain.

Those first couple of months were painful just managing a baby, an infant who is pretty much always laying on their side, pushing their heads against things and the whistle, those hearing aids. We started working with an auditory verbal therapist who happened to be one of the best in the country. He saw our son was smart, he could tell very early on, I think it’s just so sweet that he saw that in our child. He was just bright and alert and inquisitive and we would work with him twice a week. And it was during that time that the therapist started speaking to us about what a cochlear implant was and he didn’t tell us we should do it but he educated us so we can make a decision that we thought would be best for our child. So at 14 months, he got his first implant.”

LS: “So what was that experience like for you?”

Valli: “Well, let’s see. I was pregnant with my daughter so that was challenging to be pregnant and sending your baby off to surgery. I equate it to any parent I know that their child had surgery, it’s scary. We never questioned if we were doing the right thing though. It was just a choice we made based on all the information we had and knowing our child. So that wasn’t the hard part. Recovering from surgery, he had some complications, his incision got infected, nothing major, but it was things we weren’t really prepared for.

But once he was healed and got activated, words started to come and was alerting to sound. We didn’t have that magic moment that you see. I write about that, the magic moment. We all love the videos. Again, I write about how that really is a disservice. As much as we can celebrate the joy and I mostly have the visceral reaction to those videos because I see the parent’s joy, the parent’s emotions, but for most of us that is not the normal. The magic moments come after.”

LS: “For sure, I’m so glad you mentioned this and you brought this up because it’s something I really advocate for. A lot of education. When those videos go viral they are delightful (laughing)

Valli: “Yes.”

LS: but when that’s the only thing you know about cochlear implants or about what audiologists do…”

Valli: “(Laughs) Right. The cochlear implant, it’s the mapping, the sophistication of programming it and that it is not an exact science. You all have to be so good at reading the behaviors and all the things that comes with that. That it’s not just “one size fits all”, just turn on the on button and boom they can hear. And I think even with family, some of our family members, I found that they did think it was going to be as simple as that. Again, that makes you as a parent feel not understood. This is really hard work for us, yes. All the appointments, learning all the techniques to help our child to understand what this access to sound means and it becomes a parenting style of sorts. The narration of life. But for the child it’s to understand that it causes fatigue, it’s a lot of information to process. It’s a lot. I mean, my kids even now I’m in awe of them. I’m in awe of how hard they have to work and how they do it without a second thought maybe because they don’t know anything different. They never complain and say why me. It’s just who they are and they accept it. I’m just in awe of them.”

LS: “Well I think it’s a testament to the way you are saying that you were able to come to terms with it, accept it and say ‘let’s go, what are the action steps?’ That you gave your kids a lot of those tools. So talk a little bit about that process and what you guys did to make it that your 14 and 12 year old don’t complain even though they are preteens and teenagers (laughing) which complain all day for everything.”

Valli: “Well they complain about a lot of things, just not their hearing. It’s interesting. Just yesterday in the car, my 12 year old literally a piece of work, she’s a special kid. She has a personality that’s just infectious and like her zest for life and she’s getting ready to go into some school testing and they messaged me about, ‘Is she going to utilize the extra time that she’s permitted to have?’ ‘I don’t need extra time, I don’t want to be pulled out of class.’ ‘So let me explain to you like your audiologist has done, let me explain to you again how much harder your brain works. Your brain is having to work hard to hear, not just during testing, even though it’s quiet during testing, but the minute you wake up until the minute you go to bed, you’re working harder.’ She said, ‘well it’s still lame.’ That was about as much complaining, I don’t want to be pulled out, only people who aren’t smart get pulled out. And I said, ‘you know that isn’t true.’ They go to a school that is highly academic focused and everybody there are high achievers and even if that’s not the case, being pulled out doesn’t mean that. It’s now that teen/tween age of not wanting to be different or have attention brought on for reasons that they don’t see it that way. I’ve just gone off on a tangent but I think one of the things I would say about a teen/tween that’s hard now is that they want to act like they don’t need the accommodation.”

LS: “And you’re sitting here and saying, I fought for this accommodation and you’re going to get em’.”

Valli: “Yes, I think it’s pretty typical of this age. I have other moms that I’m in touch with that have kids similar in age and we share an audiologist so we have kind of become a little crew of parents that exchange stories. I’m hearing a similar thing but it’s just partly the age. It just cracks me up because they think, ‘we don’t need it’. ‘Yes you do, you don’t know what you’re missing because you’re missing it.’ “

LS: “And at any point do they actually reject the equipment?”

Valli: “It’s not a problem now but we did go through it. And I’ve written about this because I think this one is one of the things I hear come up from parents with toddlers is the pulling off the device. My son went through a stage where he was horrible, pulling his implant off and it wasn’t because he didn’t want it on, it was just cumbersome, it would just go flying off and he would just keep on going. It was not negotiable for me. I would just put it right back on and it was never used as a punishment, like you will wear this. Never. We never made it a power struggle, but magic ear goes on and we do a little happy dance and try to make it a positive experience. Sometimes it would be a 100 times a day and so then I would occasionally take a device time out where I would put it up on the counter, not for him but for me to give me ten minutes where I didn’t have to keep my eye on his hands going for his head. I mean that phase in the grand scheme didn’t last that long but at the time it seemed like it was never going to end.”

LS: “Wow, so we spoke about your son. So then your daughter came along. Had you done genetic testing. did you have any thoughts or expectations of a new baby?”

Valli: “Yeah so we did genetic testing and, again, the dream team happened to have one of the best geneticists to work with, who did the CAT scan and saw the enlarged vestibular aqueduct. She could see the size of the hair enlarged, so she knew what to look for in genetic testing and so we were able to identify the syndrome and then we knew that she would have a 25% chance as a sibling. Which I’ve discussed this before. At the time I thought, well most likely she’ll be born hearing, not really thinking 1 in 4, those odds are pretty high that she will also have hearing loss and we found it in-utero because she was also having some markers to present down syndrome. So my son was going in for his implant surgery three days before we found out that it was looking like a probability that she was down syndrome so we ended up doing amnio because if she has down syndrome, again, roll up the sleeves, it will be fine but I need to know before she is born so we can prepare. Because we already had gone through that experiencing a diagnosis the opposite way. And with that they can do the genetic testing. She came back negative for down syndrome and positive for hearing loss, the same syndrome. I’m really glad it worked out that way, because I grieved again but I was able to grieve while she was still safely in my belly with no hearing devices or anything else like that to worry about. So I was able to come to kind of come to terms with, okay here we go again. And I think at that point it wasn’t that I didn’t think I could raise a happy healthy baby with hearing loss, I just knew how much work it was going to be. That was probably the part that I needed to process.

We knew she had it and would also have enlarged vestibular aqueducts but the thing with that condition as you know, hearing fluctuates, and deteriorates. She was born with only a mild loss at first but then it quickly shifted and that was another challenge. I hear this from other parents, the fluctuation is very challenging. And that was another reason an implant just seemed like the best course of action because then the fluctuation just doesn’t matter.

My kids are very good at being tested. Our audiologist loves them. She’s been working with them since they were 1 and 3. No matter where we moved because of my husband’s job, we would fly back to be with her because one, the continuity, and two, I’m from California so it’s a trip home. We understood quickly how important that mapping was. So it’s almost like I don’t want anyone else touching my kid’s devices.”

LS: “The mapping really requires numerous, numerous trips and fine tunes and readjustments. and six months later again and annually after that. It’s a long process to get it and it keeps changing.”

Valli: “We were going every three months for the longest time. Now it’s three to six months. Every time there was an adjustment made, my son keeps requiring more power. He’s still growing, he’s six feet tall, he’s 14, size 12 feet. I guess with the surges of testosterone and everything else, it just changes the mapping as well with how much power is required. It’s like clockwork. I start getting a lot of ‘huh, and what’. So I’m like ‘Oh boy, we are overdo, aren’t we’. It’s like ‘Yep. It’s time, make our appointment.’ Like clockwork.”

LS: “To go back, how old was your daughter when she was implanted?”

Valli: “So again, hearing aids at three months and because of her loss being not as severe, she got her first implant at eighteen months. Again, her speech was not progressing and she was missing some of the high frequencies. It was inevitable that she was going to get an implant as well so we wanted to do that.”

LS: “And at that point when she was 18 months or 16 months, whenever you did the testing, by then had her hearing gotten worse?”

Valli: “Yes. It had changed from mild to moderate but still her speech sounds, it was clear that she was missing.”

LS: “It’s also about the quality about the transmission, not just the volume.”

Valli: “Right and we had seen what a difference the implant had done for my son. So we kind of knew that she was also going to get an implant, it was just a matter of when. It’s never easy to send your baby into surgery. She is only unilateral, she only has one. She wears a hearing aid on the other side.”

LS: “So she is a bi-modal superstar (laughs).”

Valli: “Yes and she tests very well with both her ears. We call them “ears”. I know some people don’t like that but that is what our family uses, our kids use it. Like, ‘where are my ears?’ They know their ears are attached to their head, they mean their devices. They don’t say, ‘where are my cochlear implants?’ That’s not the language we use. I’ve heard some people say, ‘they are not your ears, they are your cochlear implants.’ Okay, you do you…”

LS: “I know some people who’s kids name their shoes.”

Valli: “Right, we don’t get caught up or get offended very easily either. We don’t take a hard line. The only thing my husband and I decided early on and we haven’t really had, even with my kind of big platform of advocacy, haven’t really run into too much with people trying to put their opinions onto us as far as what we should do for our children. We always knew right away that there are a whole bunch of ways to do this. That’s why my tag line is “there’s no one-size fits all way”. It’s personal and you can have your opinion about what’s best for your child and we’ll have our opinion about what’s best for our child. Parents have to make decisions like this all the time for their children, so we just did the best we could.”

LS: “I mean, of course, people will get up in arms about using a pacifier or not. And don’t get me started about breastfeeding or not. Everyone’s going to have their opinions one way or the other on lots of parenting topics. And when you get into something like this diagnosis and the stakes are a little bit higher and people need to justify their decision. Sometimes, coming off as a little bit judgmental of other decisions. That’s a challenge. You’re saying it’s not really a problem with your platform, but has that happened in real life?”

Valli: “Only very few times. I can count on one hand how many times someone has questioned our decision and I just won’t entertain it. It’s like anything that you feel very strong philosophically about, you are not going to change that person’s mind. Likewise I would never tell anyone that made a different choice than we did that what they did was wrong. I would never. I just wouldn’t say you should do it our way. That’s why I’m very careful on my platform to say that these are the choices we make for our children. My children have the same parents, and they are very different kids and how they have responded to their hearing loss has been very different. There’s commonality but their experiences is very different.”

LS: “What has been the biggest challenge in their education journey or their social journey that has been affected by their hearing journey as well?”

Valli: “Wow, that’s a big question. I think it’s changed obviously from preschool to middle school. Like I said, we have moved six times and they have been school aged. They are at their fifth school so it has changed. Probably and this was something we were told would happen and I’ve seen it happen is because it’s an invisible disability and we use the word “disability”, and we’ll interchange it with an invisible special need, or an invisible need other than typical. Other than the device they are wearing, they are typical children and they look typical and act typical so people forget. Very quickly, family members.

So I think having to constantly advocate and remind people, that no I know it looks like my kinder-gardener doesn’t need to sit in the front row because it looks like she’s sitting in the back and engaged and following along but she can not hear everything you are saying if she is in the back row. She has to be in the front row. I had a teacher that said she follows along just fine. And I’m like ‘How do you know that? Do you think a kinder-gardener is going to raise her hand and tell you she missed every other word that you said?’ No, and we should not put that on a child.”

LS: “Yeah even if she is maybe hearing, how hard is she working to get that..”

Valli: “So it’s just constant with coaches and teachers and child care and family. I know people mean well, generally it’s not done to somehow exclude or not to provide access, they just forget. One of my son’s coaches of tackle football and lacrosse was yelling at him from the sidelines and I could see him getting frustrated that my son who is now fifty yards away can not hear. So I’m thinking, I get it why it’s frustrating, and I also thought to myself and guess what you are not allowed to get frustrated that he can not hear. You are just not allowed to be frustrated at him. You can be frustrated at the situation.

Socially, like I said, both of my kids are very different. One can pick up on social cues way better, more visual kind of more in touch with nuances and one is more kind of a wallflower. More sits back, not looking to be right in the mix and I think partly that’s because the social settings are challenging. So more one on one and small groups vs. big group settings. It’s kind of just learning what works for each kid. And who knows even with hearing, that might have been their style anyways. We’ll never know but I know with language getting more sophisticated into the teen years and how teens are locked to groups and quiet talkers or funny talking and turning their heads and sarcasm and innuendos and all that I think it’s way more complex to follow along socially. Both of my kids are really good friends to others. They are kind and have empathy, they can be jerks, yes because they are typical kids, right?! These are not perfect children but they are good friends. I think they make good friends, but that’s just me saying that as their mom.”

LS: “That’s wonderful. So lastly, I’d like to ask you to speak to our audience and tell them any advice, any wisdom you want to share from your experiences to anyone who is just starting out or wherever they are in their journey, what you’d share with them.”

Valli: “Well first, I want to say thank you for giving me this opportunity to come on your show and talk about this topic. You could tell it’s something I get passionate about and clearly turning it into a platform like I have, because I’m a writer by trade, that’s what I went to college for. It’s funny how my story ended up taking this sharp turn, my kids being born with hearing loss. There’s a couple reasons why I wanted to write about this story. First, because our kids are doing so well I did not want to forget about where they started and how hard it was in those early days. Because you know with time you start to get amnesia about the hard things. I wanted to have it just for myself even because we used to celebrate every little success. Turning and saying ‘I hear a bird’, that’s jumping up and down kind of stuff. Mom I heard bird…So I didn’t want to take for granted how far they have come.

And secondly, I share with parents what would I have wanted to know when my kids were born. And I would have wanted to know that it’s going to be okay. Their okay is going to look different than my okay but your child is going to be able to be happy and have a rich, full life and it’ll look different than my child’s life but anything is possible and to set the bar high. That’s what we were told early on and it stuck with me. Measure your child against all children when it comes to academics, athleticism, whatever. They are not just doing well for a deaf or hard of hearing child, they are doing well compared to all children. Just keep setting the bar high and they are going to rise and exceed it. That’s what I want parents to know.”

LS: “Tell everyone where they can read more about you and your story.”

Valli: “Okay. Mybattlecall is my blog, same as my website, I just launched my new website in January which was super exciting. There’s parent resources, videos, all my writing, t-shirts and other fun stuff on there. My daughter and I wrote a children’s book with my daughter’s voice and it’s her journey. So we are looking for an agent for it, a children’s book. It’s the sweetest book, it’s funny and inspirational. It’s called “Hearing, Shmearing” and we are looking to get that published and she’s ready to go on her book tour already. She’s like I need my professional photos done, and when they have me on the Today Show I’m going to need to have my head shots. So mybattlecall across Instagram and all the social platforms on there.”

LS: “That’s wonderful. Thank you so much Valli, I really appreciate it. Thanks so much.”

Thank you so so much to listening to the end. I hope you gained from this interview a little bit more about the texture of life and how the decisions that need to be made around the cochlear implant are big decisions. And as time goes on and your children grow, things will be different and new challenges will arise and you’ll have to learn and adapt to those kinds of situations. So I really want to hear your experience, your questions, your journey, your review. Whatever it is that you took away from this episode I really want to know about it. So you can always DM on Instagram @allaboutaudiology podcast and you can find us on the Facebook group and join the Facebook community, the allaboutaudiology group and I look forward to hearing from you.

An upcoming episode is all about speech therapy. And I have a very fond place in my heart for all my speech language pathology friends out there and colleagues so stay tuned for upcoming episodes. I really appreciate you listening and thank you for sharing the show.

I’m Dr. Lilach Saperstein and this is the All About Audiology podcast.

[Parts of this appeared earlier in a blog post on lilachsapersteinaud.wordpress.com]

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