Put This On Me

Me and Justin, we’re up to number three in the Harry Potter octology, and we’re screwed after this one, because B.C. (before children), I only made it up to Azkaban before the Netflix dubs ran out. When part three is over, it’s back to the video store, or even worse, the public library, where every DVD is scratched and unplayable, except the gross educational ones which are mostly unused and as clean as the day they were minted. I know this for a fact because we checked out All About Birds last weekend and we could still smell the fresh ink on the liner notes when we opened the box, copyright 2009.

Justin is on the floor right now, watching it, spellbound. (Harry Potter, not the birds). I wish you could see him. He’s just out of the hot tub and too warm for pajamas, so he’s laying on a blanket on the living room floor, legs in the air, Buzz Lightyear undies the only thing between him and his birthday suit, head on his arms, body propped up on his Go, Diego, Go pillow. He’s a sculpture to me.

He’s not at Friday night services tonight with Adam and Justuce. Last Friday he hit a kid hard enough to knock him over and make him bleed, so this week I’m keeping him home. Maybe all month. Maybe all year. I don’t know yet.

It’s hard to equate this perfectly quiet little boy watching TV on my floor with the one who hits and kicks and pushes and shoves. He’s so calm now. So utterly still. Why does it all go away as soon as he interacts with other people?

I took the Sensory Processing Disorder quiz in The Out of Sync Child and Justin lights it up like a neon sign.

Touch... Does your child become upset when his face is washed? Often. When his fingernails are cut? Often. Does he become irritated by tags on clothing? Often. Complain if socks are not on correctly? Often. Tend to bump or push others? Often. Show an unusual need to touch certain textures, surfaces or toys? Often. Mouth objects or clothing? Often. Have difficulty judging how much strength to use, or use too much force? Often.

Movement... Does your child love to be tipped upside down or lifted overhead? Often. Seek out all kinds of movement activities? Often. Like to spin himself? Often. Rock his body or head? Often. Bang his head on purpose? Often. Throw himself against the wall or other people for fun? Often. Take unusual risks during play? Often.

Activity Level... Does your child tend to be especially active and always on the go? Often. Tend to fidget excessively in a chair when eating or working? Often. Tend to lack carefulness and to be impulsive? Often. Seem aggressive in play? Often.

Out of the hundred-plus characteristics mentioned for SPD, Justin scores “often” or “sometimes” 71% of the time. In other words, very rarely does Justin rate “rarely.”

In many ways, reading about Justin’s condition makes me feel better about it. It makes sense to me now why we can be sitting and having dinner, and he’ll simply fall out of his chair. Or why he can’t sit still long enough to get his ass in the saddle in the first place. Mostly he stands with one leg on the floor and one knee on his chair. That's how he eats dinner, folks. Leaning on one knee and hopping. Occasionally he just tips over and hits the floor. That was weird at first. It was like having dinner with an old drunk uncle or an acrobat every night. But now I’m getting used to it. Now I understand it and I don't have to see it as wild, insane disobedience.

His teacher, God bless her for this, says we can send his sensory toys along in his backpack so he can have them at his desk at school. He has little multi-textured hand things he can squeeze and chew and rub on his skin. They settle him down. They provide some of the input he needs so he’s less likely to store up all those urges until he busts loose like the Fourth of July.

His teacher and his therapist talked to each other for a long time today.  I’d have loved to have been a fly on that wall. His school year’s off to a great start in a general sense - you should see him whiz through his homework - but he's also done some shoving, he’s fidgety and inattentive sometimes, and we’re concerned already, but his teacher is fantastic. She knows what this is, and she’s on the same page as the rest of us. She's smart, we trust her and we’re going to make it work. We're all on Team Justin now, and we’re going to take care of him. This is where his school year begins.

The sensory craver frequently gets in trouble for his insistent, persistent, tactile explorations. He repels the people around him. His motivation is not to infuriate the people around him, but to get the sensory input his nervous system needs. Of course, most people do not understand his behavior. And, of course, the child is incapable of explaining his cravings, so everyone around him gets upset and tells him he is being bad. (from The Out of Sync Child, Carol Stock Kranowitz, M.A. c.2005, Penguin/Peregrine).

It’s a fine line. Yes, there’s something wrong with him. No, it can’t be used as an excuse to let him hit, punch, kick or hurt other people. Yes, we have to understand him. No, we can’t give him a free ride. For those of you who see Justin at his wildest and you fear we’ll be too lenient because we've convinced ourselves he has “a condition,” move in with us for a week. You’ll see a little boy being disciplined more frequently than you’re comfortable with.

I don’t even write about him to say, waa, waa look at the lousy hand we were dealt. I write about him to say, thank you God, thank you dearly, for dealing this hand to us. To me and my endless hope. To Adam, who is a tireless prince. And to a community who will occasionally be appalled by him, more often simply excuse him, but always love and nurture him. I’m so utterly glad and incredibly enriched that you, God, me and Adam, we all get to take care of him now, because Clark County made a Grade-A clusterfuck out of it for the past three years and Justin deserves better.

I’m sorry. That’s not fair. They tried. They always try. There are just too many kids in the system, and not enough money to take care of them. Or people. Or homes. There will never be enough homes. And that’s nobody’s fault, unless you count moms and dads who shouldn’t make babies to begin with. But thank God they do, because that’s how I got mine. There’s nothing black and white anymore; it’s all shades of grey. Beautiful grey, frustrating gray, maddening grey, blessings of grey.

Tonight, he’s just my Harry Potter boy, munching Cheetos, perfectly calm, and all is well. I love him so much, everybody. So incredibly much, I don’t know how to tell you.

There’s a raw honesty in the love I feel for him that would instantly turn into silliness if I spoke it out loud. How do I say to you, “watching him watch Harry Potter is poetry?” Or, “Little boy with the orange powdered fingers and your feet in the air, watching you eating Cheetos on my living room floor is a song to my soul.” It would be too silly to say. But there it is anyway, and it’s true.

At five thirty this morning, Justin climbed into bed with us. Not unusual. He has bad dreams. He instantly goes back to sleep as soon as I cover him up. Sometimes he yells and cries out in his sleep. This morning he was silent. Just his deep, steady breathing in the early morning dawn. I watched him sleep, so perfect and so beautiful, and this is what I prayed.

Please God, put this on me. Whatever demons plague this little boy, give them to me instead. Whatever ails him, make it mine. Whatever he can’t control, make it my burden to bear, not his. Take everything that's wrong with him now, and give it to me instantly. Just give it to me. I’ll gratefully take it. Make him well and make him whole, but please God, it’s too much for him to handle, so make it mine instead. Be a good sport, God. Put this on me.

And I held my hand to Justin's face, as if by some magic transference, I could remove all that’s wrong with him and draw it into my body instead. As if through my fingertips, I could pull it out of him and give it to myself.

And I think that’s the essence of what parenting Justin will be. Trying to touch his burdens every day, and praying to make them mine. Giving my life for that. For endless hope. A victory here there. A whole lot of patience and whole lot of miracles. And a gracious God who was benevolent enough to give me this chance, and this beautiful, perfect, imperfect little boy to love with all my heart.

Please God, put this on me.

Amen.