Back in the day, Jonah adored the movie Willie Wonka and the Chocolate Factory. That’s not exactly accurate, either, because what he really loved was one scene. You know the one, near the end where Grandpa Joe and Mr. Wonka are screaming at one another…
Mr. Wonka: You STOLE fizzy lifting drinks! You bumped into the ceiling, which now has to be washed, and sterilized, so you get NOTHING! You lose! Good day, sir!
Grandpa Joe: You’re a crook! You’re a cheat, and a swindler – that’s what you are! How could you do a thing like this? Build up a little boy’s hopes and then smash all his dreams to pieces?!! YOU’RE AN INHUMAN MONSTER!
Mr. Wonka: I SAID GOOD DAY!!
For whatever the reason this absolutely smashed Boo’s funny bone. He’d giggle and laugh and sometimes almost literally shriek with joy.
More this he would ask, and I’d have to rewind back to the beginning of that scene and play it again, usually 10 or 15 times in a row. We watched it together so often that I began to dream of sterilized ceilings, inhuman monsters, and dreams smashed to pieces.
I’m not sure when it happened (because of this blog I could look back and pinpoint it), but for a long time now his little joys and interests, like the Willie Wonka scene, have waned and all but disappeared – replaced by a devotion to car ride alone: mama in the front.
But two weeks ago when Andy and I drove to pick him up, he first (as always) greeted us with music on? and then, after just one car ride (an unvaried and specific loop), requested go back to ‘partment?
Surprised but happy, we drove him to Andy’s place, where grandma was waiting with Jonah’s favorite foods. Once inside, he almost immediately attacked Andy, ripping yet another shirt and biting him on the wrist, drawing blood. Andy got him down on the floor and tried to keep him still, while I held Boo’s legs so he couldn’t back-kick Andy in the kidneys. We are strangely quiet during all of this, even Jonah. The only sounds are Jonah kicking and hitting us or the floor. We’re grown used to it, and we’ve come to believe that if we can just get one attack out of the way, Boo will be okay. Sometimes even really sweet and especially happy.
Sure enough, Jonah calmed down and after that he was fine. Better than fine.
Train on computer? he said. I was floored. He hasn’t asked to watch trains in what feels like years. So, as small a thing as it sounds, I was thrilled to see a spark of interest in something besides car ride. So I set him up on YouTube, typed in railfanner, and Presto Change-o, my train-loving Boo is back, staring with rapt interest at the coming and going of the endless speeding cars.
And after a while, just as amazingly, he looked up at me and asked Oopma Oopma? – which is always how he requested the scene from Willie Wonka. And so once again I happily obliged, the scene eliciting the same smiles and giggles in which we all once rejoiced.
The next day at school, Jonah went after a staff member in the residence who did his best to restrain him safely, but Boo ended up hitting his face on his dresser and being brought to the hospital, coming back with a few stitches in his lip and a swollen black eye. We are grateful to the caregivers who stayed with him, keeping him calm, safe, and occupied, until he could go back to his residence.
By our next visit the swelling had gone down and Jonah was his usual happy self. He asked for train on computer again and even handed me his Jungle Book Disney movie to play. So I set it up for him and watched him wait patiently on the floor, where he threw down a little yoga move (they teach the kids simple poses in school but I’d never seen him do one spontaneously)
…and settled down to watch the movie – nearly 30 minutes of it! – before declaring all done Jungle Book.
No aggressions that day. None. Not sure when the last time that’s happened, either.
I type ad nauseam of hope, and despair, and the tiring, endless cycle of the two, but a constant thread through both is change, always change – and growth, and learning, and steps forward.
There is. Thank God there is. Always there is something sweet to savor, and I am evergrateful.
You have stayed on my heart since your email the other day. That email was so perfectly timed, you really have no idea. Continuing to pray for you, Andy, the staff at his residence, and most certainly, Jonah. I remind myself constantly, God loves these boys more than we do. I have no idea why life has to be this way, but I do know that God loves these boys and loves us. He is forever sending us messages of hope and promise, if even just in a day with no aggressions – something for which I am always grateful. Love you so, so much. 😘😘
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Amy, I’m glad to hear about Jonah having more interest in his favorite hobbies. This gives me some hope for Brian. He is strictly about car rides now when he’s home. Tomorrow I will literally have to drive from 11:00 until 5:00. Even sitting in the bed with the covers over his head is beyond him now 😦 I pray that Jonah continues showing interest in the train and Willy Wonka. I also pray that Brian will do something. He’s had some aggression at his residence and head butting episodes. Ugh!
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Love, love, love the pictures of Jonah enjoying trains and Willie Wonka and doing yoga. Thanks for sharing these images of your boy being happy. They are rays of sunshine for all who see them and those who don’t.
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The train talk brought to mind one of my all time favorite movies; “The Station Agent.” It is a nearly plotless movie about a dwarf living in an old station agent’s depot. It is one of those movies where I wish the people were real and that I could hang around with them. Mostly misfits and empathy, sans saccharine. (On a side note, how is my use of the semi-colon above? Additionally, what the hell are semi-colons for? Are they weakened colons or strengthened commas? I think they’re ineffectively lost in some netherworld of neither.) Oh, and I got the “sans” from you.
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Kind of strange that, my daughter with autism also is extremely sweet after an aggression episode. This morning, at the museum, after she hogged the piano for a long time, I made her share it with the waiting children. (I realize my situation is different in that my daughter’s reasons for aggression are clear.) When she started crying, screaming, yelling, and scaring all the children, I dragged her outside. She hit me several times. My falling glasses did not break this time, thank God, like they did other times. But once she was done raging, she was incredibly sweet, while I was still going, “Don’t you ever do that again.”
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