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:
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.