I am supposed to be packing my workshop suitcase right now.But I owe you a post or two, don't I?
This is my family. Katie on the left, her boyfriend Nathan's three children, Nathan....and then my son Kevin on the right.
Tonight, I picked up Kevin from his group home and drove to McDonald's where we met with Katie, Nathan and his kids. Kevin loves to watch the kids play in the playground area, and he can eat McDonald's burgers (he can't chew most foods) so it's his favorite place. He had a good time tonight, laughing at the kids as they jumped and twirled and slid down the slide. And after a couple of hours of hanging out, I took him back home.
That's the part I don't like. He maybe hangs his head a little as I get ready to leave. Or does he? Am I just so afraid that he might be sad that I imagine it? Am I just so afraid that he might be sad that I gloss over a truly hanging head, imagining that I am just imagining it?
There is no end to guilt when you have an autistic child. Kevin is 22. He's never spoken a word. He's still in diapers. He laughs when nothing is funny and cries when nothing is hurting. He giggles when you cry. He finds other people's sneezes knee-slappingly funny. He watches Barney & Seseme Street....he's been watching the same videos for 17 years. He bites his fingers - they are scarred with swollen callouses. He wouldn't see anything wrong with walking around naked, but if you happen to run out of diapers and you just have to put his pants back on without a diaper, he'll fight you tooth and nail. If there is no diaper, there will be no pants.
You're liable to find him in the morning with a different pair of pajamas on then when he went to bed - and usually inside out. I even went in one morning to wake him for school years ago, only to find him fast asleep with his tennis shoes on. At 3, he was a pro at assembling his toys into groups - trucks in one pile, cars in another, Seseme Street figurines in a third. At 22, he is a pro at stacking piles of videos, then re-stacking them (loudly) and re-stacking them, and re-stacking them, and re-stacking them. Hours on end of rearranging stacks of videos.
There is no end to guilt when you have an autistic child. No end. He shouldn't just be watching Barney videos. But he loves Barney videos. I should have done more. I couldn't do more. I should have given him every minute. I couldn't give him every minute. I should talk to him more. It's too hard to talk more to someone who doesn't seem to hear you and who never, ever answers. He should be at home with me. He can't be at home with me. But he should. But he can't.
Is he cold? Should I put a sweatshirt on him? Is he hot? Should I take off his sweatshirt? Should I give him the blueberry yogurt or the lemon yogurt? Would he like a chocolate milkshake more than a strawberry one? Are two burgers enough? I wonder if I should get him a cookie? How can I ever know? What's the right answer? How is it that it always comes down to me feeling like somehow I should know?
Maybe if I were just a little bit better at all of this, I'd know whether he prefers chunky peanut butter over creamy....
He's in a fantastic group home. It's a 3-bedroom apt, and he shares it with two other non-verbal residents. The caregivers are kind, and the supervisor is amazing. There is an aquarium in the living room, a Christmas tree during the holidays, home-cooked meals and outings 3 or 4 times a week. He should be home with me. He can't be home with me. I don't want to leave him there. I have to leave him there.
I wonder if he knows how much I love him. I wonder if he cares that I do.
I'll never know.
