All About YOU! Episode 32
Welcome back to the All About Audiology podcast. I’m your host, Dr. Lilach Saperstein, and this is episode 32 (Sorry, I misspoke in the audio). It is the All About YOU episode! Every other episode, we talk about things that are timely in the news and things that are going on on Instagram and on Facebook, and your comments and responses to the previous episode.
So, if you didn’t hear the last episode with Mama Manon, it was such a beautiful episode all about connecting, and she shared really practical and useful tips and strategies for connecting with our children and seeing them as whole people. It really can apply to anyone and everyone and I’ve been sharing it for sure outside of my audiology network and you know, people who are following for the hearing related content, and I really urge you to do the same because it was just such a nice, wholesome loving episode. It was just delicious. You know, one of these things that you feel it’s like, yes, it just feels like the right and good thing to do. Anyway, so if you haven’t heard that, please go ahead and listen to that episode.
And today we’re talking about some of the responses to International Cochlear Implant day, which was just last week. And it was all over. It was all over Instagram, all over Facebook, people were sharing activation videos, people were sharing time lapses from when their kid first got the implant to how they’re doing now with the implant. People shared their experiences as adults. And so there was a lot of awareness, beautiful user photos and user stories. It was just a great day, you know, a lot of people bringing cochlear implants to the mainstream. It’s a relatively new technology in the grand scheme of things, you know, 25 to 30ish years that the cochlear implant has been out and it’s becoming more and more known and for someone who doesn’t have a direct connection with audiology, they might know about it.
For example, there’s representation in children’s clothing ads, like there’s a couple of photos from gap where the children who are modeling the clothes also are cochlear implant users. There was a character in Toy Story, one of the children in the Toy Story movie who has cochlear implants. And so, these are the kinds of images that get circulated in the Facebook groups for parents of children with cochlear implants and cochlear implant experience groups, that I just love to be in those places because it’s so great to be able to see something in culture and in media and feel represented. And that’s important across the board for lots of different identities. But I think specifically, you know, with Deaf identity and hearing loss and being a cochlear implant user, these identities also are becoming more recognized and more represented.
So, the post that I posted to Instagram @allaboutaudiology podcast which you should definitely go follow me over there was, “When was the first time you ever saw or heard of a cochlear implant?” I got a lot of responses from you guys, which is so fun. Thank you for leaving your comments. It’s so interesting to see what everybody’s journey with it is.
So, my first time seeing a cochlear implant was when I met my friend Toby. We were kids. She was a friend of a friend of mine who lived in my neighborhood. And when I met her, I had never heard of cochlear implants before. And she had one. So, I was curious about it. And I learned all about it. And then afterwards, I actually did a whole project. I think I was in fifth grade. And we had to choose one of the senses. And I did a project on hearing. And I think that was my young 10 year old self setting myself up for a career in audiology without even knowing it. Anyway, so Toby, if you don’t know was also on the podcast and gave us an incredible and really honest interview about what it’s like to be a cochlear implant user and also use ASL (American Sign Language) and have family members who are ASL only and just being part of both the hearing world and the deaf world. And that was a great episode. I’m definitely the link that as well. You can always get the links and you can always get a full transcript of all of our episodes at allaboutaudiology.com, by the way.
And so, I’m going to read some of your comments, which was so great. So, Sarah Ashley said, “I honestly can’t say the first time I heard of a cochlear implant. I can remember a man in church who wore one when I was much younger, but I didn’t know what it was at the time. Whenever I did first see of them it sparked my interest and it stayed with me and led me to this career path.” So, thank you, Sarah Ashley for sharing that. It is a wonderful profession. You guys know that I love audiology. And it’s always so interesting to me to know, how did someone become interested in audiology? When was the first time you even ever heard of this as a profession?
We also had Ellie comment and she said, “The first person I know was my uncle who got his more than 20 years ago, it blew my mind that technology could give him access to sound and now it’s my life’s work.” Ellie is a deaf educator working with children. So, thank you so much for sharing that.
And we also had Nada B. from the “Our Journey For Hope” account, talk about when she first heard of cochlear implants, which was, “when I learned that my daughter was deaf like two months ago” written with the smiling emoji. So, that’s exactly the thing, you know, people might have absolutely no connection to audiology, might have never heard of what this is until they are, you know, thrown into a whole new world with the diagnosis of a family member. So, that particular point is exactly where I hope this podcast can come in, and the other All About Audiology resources.
In the beginning after a new diagnosis, it can feel so incredibly overwhelming like you have been dumped into a pool. And that’s it. Now you are just overwhelmed with this expanse of water all around you. And you don’t necessarily have any of the tools to know how to either swim, how to hold on to a lifeboat, how to you know, navigate this new pool. And really, you just want to be on dry land, and you just want to get out of the pool. But there’s also a lot of joy that can be had from swimming in a refreshing lovely pool. If you know how to swim and if you have the right attire and you’re not totally weighed down with your clothes and you didn’t have your phone in your pocket, right. So, sometimes being prepared and having the right tools make all the difference and make it that when you jump into that pool, it is a delightful cannonball, let’s go!
And that is exactly what motivates me to create these podcasts and to make the other resources like the free downloadable guide that’s on my website. It’s called “The Five Step Guide To Navigating Your Child’s Hearing Loss”. Over 200 of you have downloaded it. The guide helps you to get organized with what you know so far and what you don’t know yet. Which part of the journey are you on, what’s ahead for you and what’s your next step right now. Head over to allaboutaudiology.com/guide, to get your free copy, all you have to do is put in your email, you’ll be added to my mailing list, and you’ll get access to the free five step guide to navigating your child’s hearing loss. And after you’ve done that, I would love to talk to you about it. If you have any further questions, feel free to DM me on Instagram, or send me a message on Facebook or through the website.
And I love the conversations that I have with you guys. I speak to students of Audiology, fellow audiologists all over the world, and of course to parents like you who are going through this journey. And there’s a lot of resources kind of out there and lots of ways that people are saying, ‘Oh, yeah, you can get support here. There’s a chapter of this there. There’s, you know, this website, that website,’ but it can still be overwhelming to know, “what do I need right now?” What’s the next step? How do I make the next decision?
So, this cochlear implant decision for some people when it comes up, is an incredibly large and important decision, a big, big factor in how you’re going to move forward with the education and care for your child. Everybody knows that going into surgery is not a picnic. Nobody does that for fun. You really want to weigh the benefits and the risks. And being able to know what those risks are and being prepared or what the potential outcomes might be. There’s a lot of hope, which is wonderful. But there can’t be promises. There needs to be realistic expectations and embracing that there is an unknown element to everything in life, including how a person, how a child will take to the cochlear implant, both medically and also cognitively and behaviorally, and how the family can handle all of the steps that are required of them in order to maximize the potential of an implant.
So, in addition to talking about and celebrating the cochlear implant, this last week on International Cochlear Implants day, I also think it’s really important to recognize and be aware of the risks. One of the hard things for me with the medical model of cochlear implant is to say, ‘oh, a child is born deaf, then cochlear implant and they won’t then have to struggle with the challenges of being deaf’, which number one presumes that anyone who is deaf automatically struggles which is not true. There is a community and an identity and places where deaf people thrive, with language access, with early ASL exposure and all of that. Making the ablest conclusion that deaf people will not have successful and productive and loving and worthy lives is already problematic on its own. And number two, making the assumption that the cochlear implant is the answer and will “work”.
So, these are the big conversations and the big questions that parents have to take into account. And my goal here is of course to just provide information and awareness, helping parents parse out all of the different elements of all the information that’s being thrown out at them from different places and make the decision that’s right for them and their family and their child, taking everything into account, so that it truly is an informed decision. And, you know, full disclosure, I am a cochlear implant audiologist, I do mappings, I do candidacy. And I’m absolutely a believer and I have so much appreciation and respect for the technology. However, it isn’t the be all and end all of the conversation when a child is deaf.
What about when they take off those implants? How are they going to communicate? What if the implants are not working, going out for repair? Do they have a way to express their needs? Everyone’s journey and everyone’s development is different and your child is perfectly unique. I’d love to hear your answer for when was the first time you ever heard of a cochlear implant or you ever saw a cochlear implant and I welcome you to download that free guide, allaboutaudiology.com/guide.
I’m preparing the next couple of episodes for you and while you wait for those to come out, I recommend you listen to the other cochlear implant related podcasts. Listen to the episode with Toby. Listen to the interview with Valli Gideons from mybattlecall.com. And also check out her and her daughter Harper’s new book, “Now Hear This”. And you should absolutely listen to the episode I did with Dr. Lindsay Cockburn from @listenwithlindsay, where we talked all about the question of “Do cochlear implants work?” For a more personal journey, listen to the episode with Dr. Samantha McKinney, who is an audiologist and a cochlear implant user. So, happy listening or reading the transcripts on the site. I’m so grateful that you’re here.