When you work as a direct care worker, you often don’t know the right thing to do. People’s needs are complex and few of us have advanced knowledge of applied behavior analysis. And even if we did, it would still be hard.
At the day program where I work I support an autistic man. By trying different things, we’ve worked out a schedule together. We bring bottles to the redemption center, listen to music on the headphones at the Bates College library, go mall walking, go bowling, bring the trash bags to the bin and do puzzles in the quiet room.
I try to make the expectations clear. “We stay with our team mates.” “We clean up after ourselves.” “We use an indoor voice.” “After we’ve helped John Russell for an hour at the Food Bank we can go get a soda.”
Most of the time things go pretty well – but not always.
We go to the library once a week and Toby asks Donnie, “You wanna come?” Once there, Toby always takes the same NASCAR books off the shelf and looks for the same pictures of crashes – Ricky Craven flying into the catch fence at Talladega or Dale Earnhardt hitting the wall at Daytona.
“He died,” Toby always stabs the picture of Earnhardt with his finger.
So one day I grab the Illustrated History of the Bible off the oversized shelf and turn to page 262 for Titian’s “David and Goliath.” Toby loves the David and Goliath story. He brings children’s books to program and I read about David trusting God and Toby flips through the pages for the fight scenes.
But in this book we see a magnificent man lying across the ground, his muscles so real you feel the weight of them through the page. Beside him is a beautiful boy-turning-into-man with muscles of his own and baby fat. Then, because the picture is so large and fabulous it takes a while for your eyes to take it all in, you realize that David is holding a sword in one hand and the enormous severed head of Goliath in the other, and there’s a hole oozing blood and entrails between the fallen man’s shoulders.
And suddenly I know this is how the story truly was, not cute but terrible.
Toby is hunched over, mesmerized, a string of drool dripping onto David’s sandals. I close the book and tell him, “Hey let’s look at Dale Junior Takes Charge,” and that’s when he gets mad.
“I WANT THE BOOK!” he bellows like Goliath challenging the Israelites. Everyone stares while Donnie, trailing behind, trips and moans, then reaches for a hug from a stranger.
“I WANT THE BOOK” Toby bellows again, while I ask myself, “What did I get into?”
“The book stays at the library. We can look at it next time we come. Let’s go do puzzles in the quiet room….” I use too many words and I know it.
“I WANT THE BOOK.” His eyes are dark and his fists are clenched.
Now I ask you – what do you do?
I have co-workers who would tell me I’m crazy for taking him to the library to begin with. It’s safer to stay at day program. And it’s safer to stay with children’s books.
It was Tuesday and we go to Subway for lunch on Tuesday, so I could have said, “Hey let’s go to Subway!” which might have turned things around. We often distract and bribe.
I have co-workers who would ask, “What difference does it make – getting him to leave with or without a bribe? You’re not going to change who Toby is, or the fact that he will always need someone to look out for him.”
But it seems important to me so, I smile and say, “The book stays here,” and wait.
It takes a very long minute, in the quiet of a room with everyone tense and watching. I don’t know what will happen. He could grab something and throw it. I’ve seen him throw his lunch box across the room before.
But today, in that long minute, no speaking, Toby calms down enough to follow down the stairs, Donnie tripping behind us, me reminding them, “we’re a team,” and Toby even repeating, “we’re a team,” though he does slam the van door and refuses to say “hi” to Melissa when we get back to the Learning Center.
And I don’t know who to talk to about it. But that’s what it’s like to be a direct care worker.