My A to Z theme concerns the joys and challenges of being the hearing mother of my Deaf son, Alex.
By now, if you’ve been following my A to Z posts, you might have noticed that sometimes I capitalize the word, “deaf,” and sometimes I don’t. It’s not as random as it might at first seem.
Being “deaf” with a small “d” refers to a physical condition. People who go deaf as they age will probably always be “deaf” as opposed to “Deaf.” “Deaf” with a capital “D” refers to someone who is part of the Deaf community. Those born into families who are already part of the community are considered “Deaf” from birth. Think of it like being born English, or African, and you’ll get the picture. Alex was born (or became shortly after birth) deaf. It wasn’t until he learned American Sign Language as his first language that he could be considered Deaf.
As his mother, again I was faced with a huge decision in regards to his deafness. He had an MRI to assess the extent and cause of his hearing loss, and it was determined that he would qualify for a cochlear implant*, which would allow him to hear, somewhat. It wouldn’t have cost me anything – he was deaf enough. I hadn’t realized that there was a chance I would have to pay for it. But that wasn’t my main concern anyway.
By the time he had his MRI, I had started taking formal American Sign Language classes at the Canadian Hearing Society in Ottawa, and he’d already started learning ASL. The Deaf community is tight-knit, with a culture that is unique to them. They tend to protect their culture with a fierceness that equals that of any other culture worldwide, and with reason. It is often misunderstood, as are the Deaf. I’ll get into that discussion on another day, however. My own focus was, of course, on my son, and I needed to decide whether or not he would be Deaf, or remain deaf.
It may seem like an obvious decision at first. I could have had my little hard-of-hearing child to myself, with his cochlear implant, and his tiny fingers that we still weren’t sure would ever be able to sign properly because of his low muscle tone. This last was related to both his Noonan Syndrome and the fact that he had spent eight months in a hospital bed instead of learning to play. Excellent reasoning to have a hearing child.
However, he’d been tube-fed from birth (and still is). On the surface this was completely unrelated, until an occupational therapist explained to me that, because he never learned to suck as an infant, the muscles in his mouth hadn’t developed properly. He would never learn to speak. His dad and I were still undecided when we went to see the surgeon who would perform the operation for the cochlear implant. We felt that it was important to know all the details involved in the procedure, so we could make an informed decision. The moment I heard the words, “five-hour operation,” and “drill a hole in his skull,” I threw up my hands and accepted that I would have a Deaf son. He’d been through enough.
To learn more about Alex’s beginnings in life, click here to go to my letter “A” post.
To learn more about cochlear implants, click here.