Linda G. Hill

Life in progress

Deaf vs deaf – #AtoZ Challenge

44 Comments

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.

Author: LindaGHill

There's a writer in here, clawing her way out.

44 thoughts on “Deaf vs deaf – #AtoZ Challenge

  1. Big, big admiration for your courage and obvious love of your child, Linda. This is inspiration and inspiring at its absolute best.

    Like

  2. Pingback: My Article Read (4-5-2016) – My Daily Musing

  3. Being part of a/feeling part of a community is huge — if you’re 8 months, 8 years or 80 years old. You’ve given Alex a special gift by providing access to a very special group of people.
    The only person I know with implants received hers when, as an adult, she lost her hearing to disease. Implants were no miracle cure; she still struggles, and in frustration, turns them off/takes them out. The technological “perks” just haven’t been as promised.
    Thanks so much for sharing.

    Like

  4. What a painful decision you had to make. Yet I know it was the right decision for Alex given the circumstances. I look forward to learning more.

    Like

  5. I totally understand this. My son has genetic hearing loss and has worn hearing aids since elementary school. Eventually he will progress to being legally deaf but before then we will look at cochlear implants.

    Like

    • I believe it will be a completely different set of considerations for you. Never having been able to hear, Alex had no idea what he was missing. For your little guy it makes much more sense to get them. I wish you all the best, Vic. It’s never an easy decision to send your child into surgery, no matter what the reason.

      Liked by 1 person

  6. When my wife was pregnant with our first child a friend told me, “You’ll never love anything as much as that little person.” I can see that’s the case for you. It’s encouraging reading all you’ve been through with Alex. Thanks for sharing.

    Like

  7. I learned ASL a few years ago and volunteered in an elementary school for the Deaf for a year. It was an eye opening experience for me, learning so much about Deaf Culture, and the debates about cochlear implants. Most of the students had them, but many opted not to use them, they were “annoying” , instead signing. Some did not have implants as they did have some hearing and used hearing aids, getting a cochlear implant would have rendered them completely deaf. There is a a large divide in the US between those who opt to get implants ans those who choose to remain Deaf & sign- and it continues still. Thank you for sharing your story.

    Like

    • I know many in the Deaf community are against cochlear implants. They feel that their culture is threatened by the technology, and I can see why. Introducing a way to completely eliminate the need for a way of life they’ve spent generations perfecting would be both insulting and frustrating, to say the least.
      Thanks very much for your comment! 🙂

      Like

  8. That “drill a hole in his skull” would have got me too. Finding Eliza

    Like

  9. “drill a hole in his skull” – just reading that gives me chills! I think I would have made the same decision you did had I been in the same situation. As a parent, you can only do what you think is best at that moment, and sometimes it works, sometimes it doesn’t – and sometimes you never find out if you were right or not. But I believe you made the right decision for Alex.

    Like

  10. WOW!!! Thank you for sharing this and informing your readers of the differences between deaf and Deaf. Warm thoughts to you and your family as you make these difficult decisions.

    Like

  11. No one knows better than mother’s intuition.

    Like

  12. Bravo for putting Alex’s quality of life first. It has been my experience that if the doctors CAN do something, they WANT to do something. They get a bit persnickety when you refuse based on a quality of life argument.Did you have any issues with that?

    Like

    • I don’t normally have that problem when it comes to the pediatric end of things. Especially at CHEO. They know the parent of a medically high-needs child usually understands and weighs the options carefully. One time, at the local hospital here, a teaching doctor told a resident that when a kid with high needs comes in to Emergency, ALWAYS listen to the parent. They know the history and their child better than anyone. And she said parents like me rarely overreact, and won’t bring them in to hospital for nothing – which is true.

      Liked by 1 person

  13. I am glad you are sharing this story, Linda. Making decisions on behalf of a child, seems like a very difficult thing to do. I admire your courage.

    Like

  14. What a difficult decision to make, but it certainly sounds like you made the right one.

    Like

  15. Thank you fit sharing your story Linda.

    Like

  16. I don’t envy you the sort of decisions you’ve had to make, although I know a few people with cochlear implants and they are amazing things.

    Like

  17. You are an amazing parent Linda 😊😊😊

    Like

Don't hesitate - jump right in!

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s