This guest post has been contributed by my friend, former colleague and fellow gig-goer Stereoboard, as part of Blogging Against Disablism Day, May 1st 2007.
My son was born just over three years ago, ten weeks early, weighing about 850g. He was in hospital for the first eleven weeks of his life, during which time he had a hearing test that the doctors were concerned about. A subsequent hearing test indicated that he had a “severe hearing problem”.
That was how we found out.
I’ve found that hearing parents of deaf children fall into two camps: those whose babies struggled to live at the start of their lives, and those who didn’t. It’s easier to cope with a little thing like deafness when you’re just thankful that your child is still alive.
I’m not saying it’s easy.
There were some things that worried me, that may seem trivial to others. For example, music is a great part of my life. I can measure the passage of time by the music I was listening to. So not being able to share that with him makes me sad, but music is my thing. He’ll be different anyway – I can only hope he’ll find something else that will fill that part of his life.
Similarly, I was really looking forward to reading to him, and I thought that that was never going to happen. I needn’t have worried so much. He loves books as well, and we do look at them together – you just have to make some adjustments. I usually face him, though during the last story of the day I insist on a cuddle.
There are also times when it gets to me.
It occasionally makes me angry. This can be triggered by small things – I remember hearing the sound of waves, and thinking that he’d never enjoy that. Once again, that’s my relationship with the world: the effect of the sound of waves on me works because of its association with other events, like happy childhood holidays. The feel of the spray may have an equivalent effect on him when he gets to my age.
There are things that I haven’t worked through yet, or that I know will be a problem.
Communication is such a fundamental part of being a human, that there are people who claim being pre-lingually deaf is one of the worst disabilities. We combat that by using non-verbal communication methods (BSL), but we’re still only learning, so he doesn’t get as much input as he should. We also have to convince the rest of our families that they’re going to have to come to terms with BSL being our main method of communication.
The thought of him going to school scares the living daylights out of me, but I don’t think that that’s necessarily anything to do with his deafness.
I would rather he hadn’t been born deaf, but I wouldn’t change him now.
My son’s not deaf, he’s Ben.
troubled diva 