Severe to profound hearing loss.
That’s how the audiologist, an expert working with deaf children, described my son’s “condition.” I had suspected my toddler son was deaf when I started noticing little things here and there. He wasn’t turning to his name consistently. He wasn’t responding to auditory commands unless we signed as well.
I was pretty darned sure he had hearing in the normal range when he was born. Despite four generations of deaf and hard of hearing people in my family, we didn’t test my son’s hearing. This was long before the routine practice of testing newborn babies’ hearing at birth, a practice which is standard now in many hospitals. Besides, I was used to helping families with deaf children. Surely I would be fine if it happened to my own.
At the age of two, I noticed a significant decline in my son’s responses to auditory information and I knew. Deep down, I knew. It took a few weeks to get the pediatrician to agree to refer for a hearing test. He did his own testing in his office and proclaimed me to be an over-reactive mom. He dismissed the hearing loss history in our family.
Sure enough, the sedated Auditory Brainsteam Response test showed severe to profound hearing loss.
My kid was deaf.
My own journey with hearing loss took a couple of jagged turns. I was born with normal hearing and became hard of hearing in elementary school. When I was a teen, I took a hard fall while water skiing on my bare feet and instantly became deaf. While it was extremely difficult at first, I finally had an epiphany that turned the whole experience into a blessing: I decided to learn American Sign Language and embrace the journey as a deaf person.
So it surprised the heck out of me that I cried at my son’s diagnosis. At first, I was really confused. Why the heck was I crying when my own life turned out pretty well? I married a deaf guy. We had jobs, a house, two cars. We traveled for 12 years playing volleyball with deaf teams. Why did I feel so sad about my son at that moment?
I knew why.
I wasn’t crying because he was deaf. I was crying because people aren’t always nice to deaf people. I was crying because I remembered being teased as a young child and I feared my kid would go through the same thing. I was crying because the world was still a very inaccessible place. I was crying because sometimes it’s tough to find jobs when managers don’t want to hire deaf people.
Once the tears stopped, I got to work. I was determined that my kid would know how to read at the college level–way beyond that stereotypical idea that deaf people read at the fourth grade level. I shoved music down his throat–because if he wanted to be the next Beethoven–I wanted to make sure he had that choice. I put together a communication toolbox with a bunch of things that worked for him.
Then I had two more kids who added audiograms to the pile. My daughter was four and my son was two when they became very ill for a week and both of them experienced hearing loss. In fact, they had very similar results on their audiograms.
As a mom of three deaf and hard of hearing kids, I quickly learned to adapt. We had a kitchen drawer full of hearing aid batteries and extra tubes. I learned how to advocate at Individual Education Plan meetings and identify the teachers and staff who were committed to tapping into the best with each kid. Throughout the years, my journey as a parent has been filled with twists and turns. Just when I think I have this parenting thing figured out, the path changes yet again. And I learned the most profound lesson of all: that each kid is different and what works for one may not work for another. Ultimately, as a parent, I learned to celebrate each kid and embrace what makes them unique.