I was implanted with an Advanced Bionics Cochlear Implant in my right ear when I was 13 months old. And in my left ear, I use the Phonak CROS system which is compatible with my Cochlear Implant. I started using this system at the age of 17.
Due to receiving my cochlear implant at such a young age, hearing technology is all I know. I never really went through phases of not embracing my differences however in fifth grade I went through a phase where I only wore my hair down because I wanted to hide my cochlear implant.
Some of my earliest memories with my implant would probably be when I took karate and sparring classes when I was five. I remember advocating for myself and teaching my instructor and my peers that my implant had to come off before putting on my helmet. The self-advocacy continued from that point on, in sports, at school, with my friends, and so on.
When I am asked what obstacles I have overcome in my hearing journey, it’s hard for me to answer that question. It’s a difficult question to answer because being deaf is all I’ve ever known. I don’t know what it’s like to not have to deal with hearing technology or with struggles regarding my deafness. I grew up not seeing each thing as a struggle; it was all normal for me. The ongoing advocacy, explanations, and education were a part of daily life. Eventually, I grew to love these things!
“I was used to the ongoing advocacy, explanations, and education. I even grew to love these things!”
Going into my teen years I wish someone had told me how important it is to stay connecting in the deaf community. I’ve found that by connecting with teen friends with hearing loss and being involved with hearing technology companies, I have felt more immersed in the deaf community. A few years into my teen years I became really involved with Advanced Bionics as a mentor. This really built my confidence.
Now I am a part of the Phonak Teen Advisory board, which gives me a chance to teach others about self-advocacy and grow a community for teens with hearing loss!
Written by Emmy’s mom, Helen Tinsman
Eighteen years ago, we were thrown into a world we never anticipated being a part of.
We had just had our second daughter, Emmy (Em), and she had failed her newborn hearing screening. It took four and a half months to get through testing to a diagnosis. She had a bilateral profound hearing loss.
It was devastating. Not in a way that we thought there was something wrong with her, just in the fact that we didn’t know anything about how to help her or communicate with her. Looking back on the time leading up to Em’s birth and diagnosis of a hearing loss, we had been divinely prepared for what we would face.
“…just in the fact that we didn’t know anything about how to help her or communicate with her.”
When I was pregnant with her, I saw “Sound and Fury” on Dateline. Then, a few weeks later, Em was born during Deaf Awareness week and I saw a news show on a school that worked to teach deaf and hard of hearing students how to listen and speak. Little did I realize I would use all of this information in just a few months.
When Em was diagnosed, I quickly had to learn a whole new language. I had to learn how to navigate the world of insurance, how to work on language with her at home, and how to meet with other parents in the same situation. I became empowered by the professionals and families I met. The diagnosis no longer upset me and I was armed with information and support to move forward. I had to learn how to navigate the Early Intervention and school system. We are currently navigating college applications and how to secure accommodations.
Through her journey, we have been amazed at how strong and advocate Em has become for both herself and others. From an early age, we had taught her that only she knows what she is hearing so she needs to speak up when something isn’t right.
By age 3, she would change her own cochlear implant batteries. By age 5, she could tell us if any part of her cochlear implant system wasn’t working and could pinpoint the cause. She advocated for herself at home and at school.
“By age 3, she would change her own cochlear implant batteries.”
She started volunteering with Advanced Bionics Bionic Ear Association and mentors other families and teens who have children with hearing loss. Also, she even helps the staff at her school when they need assistance troubleshooting FM systems for other students. She manages all her own hearing needs, including her audiology appointments.
My advice to other parents is to go through the mourning process at diagnosis. It’s a normal part of the process to accept the hearing loss and mourn the life you were imagining. But then, embrace where you are. Embrace what lies ahead and what wonderful people and experiences you will have along the way.
“Embrace what lies ahead and what wonderful people and experiences you will have along the way.”
At the day of diagnosis, our audiologist had given me a whole packet of information. One of the articles in there was “Welcome to Holland” by Emily Pearl Kingsley. Taking these words to the heart made me realize that our journey to Holland really was filled with beauty. It set us on a path to meet amazing parents and professionals, gave Em a passion for helping others, and helped me find my calling. We will forever be grateful for this journey.
Learn more about the Phonak Teen Advisory Board here!