For My Son, My Daughter and Myself
By Taylor Judd, Colorado H&V
My first and main exposure to the deaf and hard of hearing (Deaf/HH) community was with my older brother. For as long as I can remember he always had playdough in his ears and he couldn’t hear without it (or that’s what I thought as a little girl). It wasn’t until I was much older that I found myself immersed in the Deaf/HH community itself.
In August of 2015, I was officially identified as hard of hearing and advised to pursue hearing aids. Beforehand, I knew my hearing wasn’t great as I would always turn my right ear out whenever someone was talking to me. Once I put on my hearing aids I became fully aware of what I had been missing. The new sounds were overwhelming and took some getting used to. Still, for the next few years (unless you were a close friend or family), you might not know I was hard of hearing and wore hearing aids. It was not because I was ashamed; I just didn’t see myself as someone who was hard of hearing. That all began to change when my oldest son was identified with a hearing loss at the age of three.
When my son was born, I knew right away that there could be a chance that he could have some hearing loss. My hearing loss is hereditary. My mom and three of my siblings have what is called BOR, or Branchiootorenal Syndrome. The main thing it affects is our hearing. There are distinct “pits” on our ears and neck that are the main sign of BOR. In the genetic lottery, each of my kids has a 50% chance of having it. My son had three pits when he was born; one on each ear and one on his neck. He had passed his final newborn hearing screen after not passing the first one. No one suggested we look further into BOR.
When he was three, we took him to see an ENT as I wanted one of the pits on his ear closed. She then gave him the official diagnosis of BOR and kindly recommended we test his hearing. We learned he had a moderate to severe loss in his left ear, and a mild loss in his right. He was set up with his first hearing aid, and it was then that I started to become more open about my own hearing loss and using aids myself. I wanted my son to see me as a positive role model and look at his hearing aids as a good thing.
We had a third child, a little girl, in 2021. We noticed that she had signs of BOR too. When the hospital did the routine newborn hearing screening, she failed in both ears. While I had missed the information pouring in about what our next steps were with my oldest son (since he had passed his newborn hearing screening) this was much different. Six weeks later she had her first ABR, and we learned that she had a mild hearing loss in her right ear. Four weeks after that appointment, she received her first hearing aid. And then my immersion into the Deaf/HH community began.
Within a few days of the appointment, people began reaching out to me. Honestly, I couldn’t tell who was who and/or what they were for. The first meeting I attended with TRE for an IFSP I was just there for the ride. I was dealing with my second child having a hearing loss, and I was a mom of three young kids, and I was postpartum. I don’t recall much of the meeting but somehow I agreed to have a CHIP Facilitator (Colorado Home Intervention Program,)come to my house once a month. When she arrived, she began to introduce me to a community that I guessed existed, but didn’t really know about. Within a few months, I started taking ASL online and eventually got the courage to attend an event at the library. As I attended more gatherings, I have found the Deaf/HH community to be welcoming and encouraging. I have been able to form friendships with some amazing people who I wouldn’t have met otherwise.
Now, almost three years later, my mother is more open about her hearing differences and we are learning about more technology options. I also trained and am working as a Parent Guide for my local Chapter. My kids see their hearing aids as a positive. (And now I can explain the EHDI system much more clearly to the new families referred to me!) While the journey is not one that I would have chosen for myself, it is a journey that I have come to value and enjoy. ~