April 30th, 2009 by

Being Atypical

The Internet is a wonderful and terrible place sometimes. One of the things I have leaned on through our entire journey with hearing loss have been the other blogs, the other kids and parents who have gone and are going down the same road we are. I share their journeys, worry through cochlear implant surgeries for babies who I’ve never met, celebrate milestones.

And I sit back, realizing how different our journey is from all of theirs.

We’re going through the same steps, of course, but at the same time Danny is so different. These kids are signing and showing hearing recognition less than 2 months post-activation, babbling after 3 months. They are super stars! And I get so excited for them, but then I look at Danny and have to remind myself that it’s not a race.

It’s a marathon, not a sprint, and in the end most everyone will be a winner. And Danny is a super star himself, maybe not on the vocalizing side, but really to have him hearing at the level he is, and giving the responses he is, is pretty incredible.

With Danny’s latest IFSP meeting coming up, and his impending occupational therapy evaluation, it’s more obvious than usual that Danny isn’t your typical cochlear implant baby. His continued battle against solid food is now being referred to by some as an oral sensory texture … thing. A pit in my stomach is dreading the evaluation, because no matter how much I know Danny isn’t typical, I hate hearing it laid out on the table.

I wonder what our journey would be like if he didn’t have to work so hard on everything else too. What would he be like if he wasn’t so focused on learning to crawl still, on learning to use his once-forgotten left hand, on struggling and fighting the strange new things we mix into his food?

I find myself wishing Danny were a typical deaf baby.

If he were, would I be wishing he were a typical hearing baby?

But if he were either, he would be my baby. He wouldn’t be so in love with making raspberries and crawling around sounding like a motor boat. He wouldn’t be so laid back, so easy to put to bed and so happy in the morning to see me. He wouldn’t wave his wobbly, almost-but-not-quite controlled wave with his weak arm and laugh at the sight of me returning the gesture.

He wouldn’t stop my breathing, just for a moment, every time a sound was presented and he turned immediately to it, knowing exactly where it came from.

If he were typical, he wouldn’t bring me such frustration – or such joy. I think it’s a strange combination that every parent of a child with special needs struggles with, simultaneously mourning what could have been and being overly thankful for what is.

We parents of atypical children are hardly typical ourselves.

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2 Responses to “Being Atypical”

  1. I can relate with your situation. Even though Brandon isn’t hearing impaired, because he is vision impaired he has similar sensory issues. I am not certain if they are due to his autism disorder or his vision issues but I remember all the feeding issues because of his sensory issues.

  2. avatar Jess says:

    This was so beautiful, I cried Kel. Danny IS a superstar, and I really admire you and your family.

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