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Leaps, Bounds, Hurdles, and Stumbles

March 13, 2011

S-O-S’s Best of  Best for March is on family as it relates to invisible special needs. This post is my submission for it.

Do you know, when Bobby was in kindergarten and we were seeing both a psychiatrist and a psychologist for his care and going through the hurdles of various diagnostic labels and medication trials, the psychiatrist told us the best we could hope for was that Bobby would live in a group home? It was like a shock of ice cold water being splashed in our faces. All these years later, while there are fuzzy edges to the memories (thank you for that, accidental cosmos), that cold prediction still rings in my ears, no less because of its relative truth. Bobby, handsome young man with a Shaggy goatee, well, he’s come a long way, and he makes progress each and every day. It’s phenomenal and humbling to think that while he may always need a little extra help, he’s going to continue to grow, to refine his niche, to make strides towards more independent living.

Two things recently have given me the hope to believe this to be a reasonable goal. Bobby’s got an intellectual impairment; he didn’t really get past third grade work, though he comfortably reads adult fiction; he misses a lot of the words, but he gets the gist, and he’s pleased with the activity. He really can’t write, though, without tremendous difficulty, and he hates it. Now, he manages to navigate the internet, but he uses his yu-gi-oh cards and anime magazines to help him get where he wants to go, and there’s a four letter word I wish he couldn’t spell that nets him all sorts of interesting things if we’re not watching closely (we watch closely). What recently surprised me, though, was that through the auto-complete function on texting, was that we were able to communicate through texting when I was unable to speak on the phone with him. No, it wasn’t easy for him, as he made sure to tell me when we were able to speak over the phone, but he did it. And he’s going to keep doing it, whether he finds it comfortable or not, because that’s when you make progress, when you reach a little further than you thought you could.

The second thing that surprised me was the progress he’s made on cooking. Last night he prepared spaghetti and meat sauce (with onions he chopped on his own and fresh mushrooms) and zuchini and squash with onion (also all chopped independently) for the family. He’s moved from cooking hotdogs with supervision through some early stumbles where he left the paper wrapper on ground beef and one experiment where he added turmeric to alfredo sauce to cooking a full and fairly complicated meal all by himself.

He continues to make progress because he continues to try new things, to reach for new experiences. His independence when we do the grocery shopping together each week continues to improve and he fills his cart with more and more of the groceries we need all on his own while I fill my cart. He’s making connections, taking more responsibility, and he’s growing. We still have hurdles. We still have more stumbles than I like, but he’s making progress, too, and even if his leaps and bounds don’t look like the average kid’s leaps and bounds, they are mountain moving to me. He is a valued family member, and even if, at 21, he doesn’t work a job, he doesn’t earn a paycheck, he contributes to the household in invaluable ways through his assistance in helping it run smoothly. He has chores every bit as strenuous as the ones his father and I have, and he carries his weight in this house. He makes it possible for me to work full time, and I’m very proud of the man he’s become.

His sisters are not challenged with the kinds of or depths of issues Bobby’s overcome, but they, too, have come a long way in their short lives. Living with invisible disabilities (I’m not sure that autism is all that invisible, though) can make navigating the wider world and its denizens frustrating; there are no wheelchairs, no crutches, no canes,  for autism. My children don’t have blue As stamped on them anywhere, either, so there’s the potential that strangers will misinterpret my children’s behaviors, the risk that their differences will make them easy targets. Teaching them to blend is a must, even when I think that society ought to be the thing that blends with them and all the wonderfully diverse people that make living interesting and worthwhile.

We’re a family of BAPpy folks, and my children don’t stick out like sore thumbs. We don’t wonder where they came from, or why they’re so different from the rest of us because they’re not so different at all.

They have issues, multitudinous and many, but so do we, and that’s okay. Because so do we all. And when we can accept that reality, we can accept each other, and we can work to be the best whoevers we are, knowing who we are is okay.

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