I have a special type of sensorineural bilateral hearing loss called a “cookie bite” hearing loss. This expression is used to describe the loss of hearing of mid-frequency sounds, but with less, or no challenges hearing the high and low-frequency sounds.
At birth, I had passed the Ontario newborn screening program for hearing loss, as well as a follow-up hearing test a year later. But by 6 years of age, it was evident that I had hearing loss after all. Shortly after this discovery, I received my first pair of Phonak hearing aids.
Today I am using the Phonak Bolero B hearing aids in both ears along with the Roger Touchscreen Mic. I still remember being fitted with my first pair of sparkly, hot pink hearing aids. I would place my ear against the window of my mom’s car, in awe of how weird and unique the sounds were. Yet, all the new noise was intimidating and I struggled to adjust.
For a while, I even alternated wearing only one hearing aid. I recall when my first-grade teacher asked if I would like to tell the class about my ‘new ears’, or if I preferred that she tells them. I had my first taste of advocacy when I jumped at the chance to be the one to share this part of me with my classmates.
My experience with hearing loss and elementary school went fairly smooth, most of the time. I was in class one day when the supply teacher on duty began speaking at large about what people with hearing loss ‘can’ and ‘can’t’ do.
“I was in class one day when the supply teacher on duty began speaking at large about what people with hearing loss ‘can’ and ‘can’t’ do.”
I had dealt with peers being misinformed about hearing aids and hearing loss in general, but having an adult figure make incorrect assumptions, left me unsettled, and thinking “Is this really how it is?” At the time, I had no friends with hearing loss who could relate to my feelings, which left me feeling isolated. I realized that my little safety bubble that I had built up to protect myself would fail me at times.
As teens, we are exposed to a significant amount of change, happening all too quickly. Add the challenges of hearing loss and the amount of pressure is intimidating. The bit of advice I would like to share with other teens with hearing loss, is to take the daunting challenges, embrace them and make something positive out of the experience.
The Phonak Teen Advisory Board has given me the opportunity to not just ignite change in my own life, but to also spark a movement for other teens. I do wish that I had stood up to that supply teacher, but I learned from it.
“The Phonak Teen Advisory Board has given me the opportunity to not just ignite change in my own life, but to also spark a movement for other teens.”
Without that bump in the road I would not be here as a teen advisor writing this. My life is richer for the opportunities and life lessons that have been afforded to me because I have hearing loss. I would like to leave you with this quote: “You can succeed if nobody else believes it, but you will never succeed if you don’t believe in yourself.” William J.H Boetcker.
written by Cynthia Wilkinson
Hearing loss is something our family is familiar with. I have profound hearing loss and my two daughters, Bonnie and Natalie have ‘cookie bite’ hearing loss as Natalie described. As a young girl I had a transistor -style hearing aid. If you are familiar with this style of hearing aids, you might want to do an internet search. They basically looked like the Walkman of the 80s, but without the music! Trust me, hearing loss has come a long, long way since then.
My own childhood was riddled with social stigma associated with being hard of hearing. When my first daughter Bonnie was born, it was extremely upsetting to find out she had hearing loss. At the time when it was discovered, the hearing loss was thought to be associated with febrile seizures when she experienced a high fever. When Natalie was born, all seemed well.
It wasn’t until Natalie was 6 years of age that I started to see the signs of hearing loss. She wasn’t turning her head when I tried talking to her and she was misunderstanding words. This all came as a great shock to me, I was devastated. It had never occurred to me that I might be passing on a hereditary hearing loss condition. With Natalie, we had genetic testing done after her hearing test results confirmed her loss. Nothing came up. Granted, the complete set of genes that play a role in hearing are likely to still be revealed.
Because of my own experience with hearing loss and social stigma installed a deeply negative self-consciousness. I did not have a positive approach to handling the parenting side of things with my daughters and their hearing loss.
I am regretful that with my older daughter Bonnie. I allowed the stigma to frame her view of herself and her abilities. After Natalie’s hearing loss was revealed, Bonnie motivated and challenged both Natalie and me to push the negativity aside and think outside the stigma-box. This approach was proven useful.
“After Natalie’s hearing loss was revealed, Bonnie motivated and challenged both Natalie and me to push the negativity aside and think outside the stigma-box.”
As Natalie mentioned, she too has faced some social stigma along the way, but instead of giving in to defeatism, she has committed herself to proving otherwise. This has been truly uplifting to see. I wish for any parent of a hard of hearing or deaf child to feel inspired like I have, watching your child empower themselves with knowledge and skills so they too can continue to believe in their dreams and educate.
Did you read the article about Phonak Teen Advisor Maddy? Check it out here!