Sunday, February 19, 2012

Is my son turning invisible?

Jessie Kirk Photography



Malachi has been doing really well lately.

He scoots around on his scooter board like nobody's business and his communication has blossomed. He says "mama" all the time now and I never get tired of it. I hope to never forget the expression of pure joy and satisfaction on his face when those two syllables get my attention. He also spontaneously says "nana" for banana, "ehzz" for eyes, "chzzz" for cheese and "szz" for shoes. He can sign "more," "store" (default word for "let's go") and "berries," even though he doesn't actually like berries. He also says "ssss" when I talk about the potty and sometimes does "baba" for baby.

In front of him, I act like these things are no big deal. Sure, I praise and reward him, but I try to keep my attitude similar to when Jaden learns a new skill. I don't want to go overboard for Malachi or treat him more differently than I already do.

But every once in a while I allow myself a swelling of pride and a sigh of relief. I still don't know what the future holds, but I can be reasonably certain that he will at least be mobile with assistance and verbal. Those two things take an enormous weight off my shoulders.

Despite these marvelous advances, I feel like I'm beginning to notice the very early signs of Malachi's invisibility. Yesterday, a relative said Jaden was the "right age" for a toy, as if his twin brother weren't exactly the same age. And today at the science museum, a worker looked me in the eye and asked how old Jaden was, as if his genetic copy weren't strapped to my chest and staring her right in the face.

I certainly don't think that in either of these cases the people were being malicious. I think it's like when we are driving, it is hard to see bicycles because we are looking for car-shaped things. We are programmed to think of independently upright creatures as sentient. Dependent or immobile creatures simply don't trigger the appropriate cues in people who aren't used to people with disabilities.

This is yet another reason why I think integrated schools are necessary.

But it made me sad. And it made me wonder what I can do now to smooth the way for my son. Or if there even is anything I can do.

Then I got online and I read an article from the mother of a child with a genetic condition. The mother laments the fact that as her child, a high-schooler named Ben, grew up, his friends slowly disappeared. She read studies that found that children with disabilities are segregated, not because of ability or transportation issues, but by attitudes:

Then there was the Holland Bloorview research that showed teachers and students alike shut out kids with cerebral palsy in regular classes. "The kids act like I am invisible," one participant said. And it's not just the children. A teacher turns off a student's communication device, rendering the student silent. Another teacher refuses to allow a child to have a bathroom communication button -- so the child, toilet-trained, must wear diapers. The reason? The button would disturb other students.
And the final nail in the coffin? In Dr. Anne Snowdon's recent study of 166 families in three Canadian cities, more than half of children with physical and developmental disabilities have no friends or only one friend. Only 1 per cent spend an hour a day with a friend.


I can't tell you how depressing this is to me. It is exactly what I've feared for Malachi since the day we got his diagnosis.

But then I read another blog post from another mother of a boy named Ben. She is halfway through a six-week intensive therapy session with her identical twin son who has undergone surgery in an attempt to gain the ability to walk. Like me, today she finds herself hopeful, but worried.

She found this boy, also named Ben.

Ben has cerebral palsy. Ben runs. And, most importantly, Ben has friends.

Ben is not invisible, and there's no reason my son has to be.





7 comments:

  1. Awesome video - Ben is a true mentor - here comes Malachi who may show the world HE IS NOT INVISIBLE!!

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  3. I cried when I watched the video. It was inspiring and yet made me a little sad. It shouldn't be so hard to feel like you belong. I hope our children feel like they belong...without needing to try so hard. Not that it's that easy for anyone who is "different"...whether it's race, skin color, physical deformity, etc. I hope all this writing leads to an informed public, who can accept different as human.

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    1. It's true. I'm reading a parenting book that asserts that the primary motivation in all human actions is to feel like you belong and that you are significant. We need to help ALL our children — disabled or not — with this for them to be happy.

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  4. Holy Cow I'm typing through tears. That's the dream, isn't it...to belong? I can pontificate about a lot of disability related subjects but having friends always cuts to my core and usually discourages the crap out of me. Ben is articulate and was able to make a place for himself, surely not without obstacles, but still. What about kids like my son who is non-verbal, more "different?" It's constant work for me to keep him included with his peers, and even then, will they become real friends? Thanks for sharing your thoughts and this video.

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    1. Yes, you're right. I didn't get into it here, but I am not blind to the fact that the Ben in the video can talk normally, whereas the other children mentioned who have difficulties finding friends cannot. I think effective communication is a huge dividing line between SPN kids. Thankfully there are so many more technological options these days for them, but I still think it's a huge barrier.

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