My parents never expected to have a hard of hearing kid (not to mention 3). I wasn’t initially identified as hard of hearing, as I passed my newborn hearing screening. For a little bit of time, I was just a normal kid. Then, when I was 3 ½ years old, I was diagnosed with moderate bilateral hearing loss. Since my loss is sensorineural, I use Phonak Sky V hearing aids with a ComPilot to stream audio and a Roger Touchscreen Mic at school.
Some of my earliest memories of encounters with my hearing loss include traveling to California for a trip to Disneyland and coming across another kid who asked my six-year-old self what those things in my ears are.
I happily responded, “well, they’re my hearing aids, silly!”
Now, as a high schooler, I use a slightly more conservative approach. If someone asks me what “those” things are in my ears, I reply with “they’re my hearing aids, would you like to listen?”.
Although my hearing loss plays a big role in my life, it doesn’t define me. I am still a BTS fan (called ARMY) and went to a concert with my hard of hearing sister last November. I’ve swum on various swim teams since I was six, making friends who have a lingering smell of chlorine. I enjoy baking and often make treats to take into my classes and make meals (such as waffles for breakfast) for my family.
Just because I am D/deaf or hard of hearing doesn’t mean it defines me. If I don’t define myself by my hearing loss, that doesn’t mean I don’t advocate, ignore, or identify as D/deaf or hard of hearing. It’s just a part of who I am. It may not be the easiest part of who I am, but it plays a major role in shaping me. Asking for captions every time I watch a video isn’t necessarily easy, and neither is constantly bugging teachers to mute or unmute the FM at school. I have learned that these aspects are a part of my identity and have made me who I am today.
“It may not be the easiest part of who I am, but it plays a major role in shaping me.”
I started learning about my Deaf culture in 6th grade after asking my teacher of the deaf to teach me American Sign Language (ASL). I learned enough ASL to be proficient and started meeting with a Deaf mentor during my freshman year. Also, I started ASL Club at my school this past year and have thoroughly enjoyed the experience. If I could give any advice to a teen with hearing loss, it is to be fun and educate people about your deafness. People won’t know what you need (i.e. for them to stop covering their mouth) unless you tell them. Once they know, most people will accommodate you. Even showing little kids my hearing aids has made an impact, where they say “oh, I know a kid who also wears something like this!” and I can advocate for that child who may not be as comfortable with their hearing loss. My biggest hope is that you will be more comfortable with your hearing loss and not care what others think or say about it. Your deafness doesn’t define you.
written by Ellie’s mom, Camille Warren When Ellie was three and a half years old, she was in a private part-time preschool program at a local church. One morning, I saw a poster saying that they would be doing hearing and speech screenings that day. I thought nothing of it, until she came home with a slip of paper in her backpack saying that the screening showed that Ellie needed to have a more in-depth evaluation from an audiologist. Quickly, I followed up with an audiologist at our local children’s hospital, and I was absolutely floored when she told me that Ellie has moderate hearing loss, and would benefit from hearing aids. I spent the next several months navigating an entirely new world – technology, special education, the need for speech and language evaluations, meeting with an ENT and audiologist, as well as setting up and starting regular audiology appointments for my second child, who was 6 months old at the time. (She would later be diagnosed at age 20 months with a similar hearing loss as her older sister). At first, I struggled with a lot of guilt. How many times had I lost my temper with my preschooler when she “ignored” me? Or put her in time-out because she couldn’t hear my directions? How much had she missed out on because of not hearing me or someone else? Shouldn’t I have known that she couldn’t hear me? How could I have missed this? But in time, I came to a place of acceptance. My daughter was just as smart, capable, outgoing, and precocious as she ever was, nothing had changed. When she was diagnosed, what needed to change was me.
“My daughter was just as smart, capable, outgoing, and precocious as she ever was, nothing had changed.”
I needed to learn how to accommodate her needs. I needed to learn how to advocate for her, and how to teach her to advocate for herself. There were numerous topics to learn about including audiology, technology, closed captions, IDEA and ADA law, Deaf culture, deaf education, and educational placement options for her. I started to reach out, both online and in person, everywhere I could find. In time, I found Ohio Hands & Voices and knew that there, in the parents and professionals who work and volunteer on behalf of families with children with hearing loss, that I had found my tribe. I now have four children, and the oldest three have moderate or moderately-severe hearing loss. Our family (with 12 ears) wears six Phonak Sky V hearing aids. We have a veritable pantry of audiology supplies, everything from ear hooks to cleaning tools to back-up ear molds. I’ve become more involved in supporting others who are embarking on this new hearing loss adventure. I serve on the board of Ohio Hands & Voices and volunteer as an educational advocate for the ASTra program. I have friends who are Deaf or hard-of-hearing, and my children have peers and mentors who are Deaf or hard-of-hearing. Each day, I strive to expose my children to opportunities within the Deaf community as well as everything else that interests them individually – be that swimming, art, music, taekwondo, or whatever they want to try next.
I’ve often heard people talk about hearing loss as being isolating. My job, as Ellie’s mom, is to not isolate myself or my family – but rather work to make my world, and my children’s world, bigger. Did you read the article about Phonak Teen Advisor Mia? Read it now!