In-between Two Worlds – Our Journey with Progressive Hearing Loss
It is hard to believe that it has been 6 1/2 years since we first received our daughter’s diagnosis of hearing loss. I still remember the fear that washed over me, suddenly feeling unequipped to be her mom. I had never known a Deaf person, I didn’t know ASL, what do we do next?
At age three, we had her fitted for her first hearing aid, enrolled her in the Special Education Preschool in our district, and met with an ENT and geneticist to see if we could see what was causing her hearing loss. Just as we were settling in to our “new normal,” we found out our daughter has Pendred Syndrome, which is characterized by progressive hearing loss and possible Goiter that presents in early adulthood.
We have had our ups and downs with the diagnosis. The first audiogram that showed a significant increase in loss was a hard reminder of what our future held. Our “new normal” was always going to be changing. We were always going to be adapting, and making adjustments.
By kindergarten, she was in a mainstream classroom and excelling across the board. Her personality is infectious and she made friends wherever she went. She educates her peers on her hearing loss, and has become a strong advocate for herself.
It wasn’t until her brother was born that the issues with progressive hearing loss started to present. Our son, while a carrier for Pendred Syndrome, does not have hearing loss. My daughter was heartbroken. At first she didn’t want him to have it, but as we awaited the results, she was hoping for someone like her. She so desperately wanted to teach her brother about hearing loss, make hearing aid charms for him, and “have someone in the family like ‘her’.”
At that moment, she burst into tears, letting her emotions spill out. She was scared of losing her hearing, and losing everything she had known for the last 6 years. She was scared of losing her friends, but also feeling lonely having only met one other person with hearing loss.
Trying to find groups to join proved difficult. Family ASL classes were hard to come by. As a family, we felt most of our resources kept us in, isolated from both worlds. Eventually I was able to join some social media groups, but many recommendations didn’t really consider my daughter’s situation. She was deaf, but she had some of her hearing. She had her feet in two worlds.
During a third grade project, she had an amazing opportunity to interview one of her role models, Dame Evelyn Glennie. Evelyn is a world renowned solo concert percussionist who is not only deaf, but lost her hearing at age 12. It was a moment that will stay with my daughter forever. The opportunity boosted her self-confidence, and you could see the smile wash over her just to be talking to somebody like her. Not only was Evelyn deaf, but she knew what it was like to hear before her hearing went completely. She opened my daughter’s eyes to different ways of hearing, and for a time, removed the fear she was feeling about losing all of her hearing.
Fast forward to today, my nine year old fourth grader is in a new district, doing well, but facing new obstacles. She is the new kid at school AND she is deaf. These kids have not known her since kindergarten, and they don’t always know how to interact with her, even though it is the same as they would with anybody. Her sadness and exhaustion comes through more days than before.
Friendships take time, they thrive on common threads, and it has been this process of forming new friendships that has made her differences stand out to her. She has cried often, feeling alone, missing her old friends, and scared of when her hearing will go completely. It has rekindled the need and the drive to find deaf friends, to become more involved with Deaf culture, and to become fluent in ASL.
At times, it feels very lonely. The advice we often get is either “make her get a cochlear implant” or “you need to put her in a Deaf school.” It is always black or white, but Addie is deaf AND (for the time being) she is hearing.
We are working hard to prepare for the future, learning ASL, and at times it is uncomfortable. Though we are always welcomed warmly, we sometimes feel like outsiders at DHH events as we are still beginning to learn ASL. We also feel like our daughter’s hearing loss can be forgotten when we are in the hearing world and have to look for accommodations so that our daughter does not miss out on experiences.
I often wonder what her relationships in the future will look like. Will any of her hearing friends learn ASL? What will family functions look like? What is going to change and how will she feel with the inevitable changes? The waiting and wondering drives a lot of conversations in our household, and ultimately is basis for a lot of decision making.
Fortunately, we are in an amazing school district that houses the DHH middle and high schools. We have been able to attend a few Family ASL classes, and have joined a parent support group. While we are very excited as a family, the whole process has highlighted the middle area that we fall in. The DHH program sounds AMAZING, and while my husband and I are very excited about it, our daughter is not. She is conflicted. She wants to make friends like her, but she also doesn’t want to leave her hearing friends again.
It feels like a constant struggle. When are we being good parents and letting her have a voice? When is it neglecting her needs? I imagine the conversation will get slightly easier as we get better at ASL and can submerge ourselves in the Deaf community more. For now, we feel like outsiders of both worlds, and are desperately trying to find the best way to blend the two for our situation.
Visit Amanda and her daughter’s Hear with the Heart shop (Hearing aid charms)
Amanda’s blog: Hear with the Heart