Anybody got a decoder ring?

Autistic people and those who care for them frequently suffer from a lack of communication.

The autistic person knows what s/he wants to say, and feels that it is being expressed; when the care giver doesn’t get it, the autistic person can become frustrated to the point of violence.

But when the code is broken, and understanding is established, some really sweet moments are to be had.

When he was little, Joey would come up to me in an agitated state saying, “T-shirt. T-shirt.” After going through his drawers, offering him shirt after shirt and getting him quite riled up, I broke the code. He was expressing his perception that when I took off my work clothes – got down to my t-shirt – I would be staying home. He was saying, “Daddy, I’m glad you’re home. Don’t go back out.”

Today we cut one of Joey’s medication doses by half. We anticipated some behavioral hiccups, and it seemed like a big one was on the way in the early evening.

I picked up Joey on my way home from work. We had a dinner for him in the ‘fridge, and I was going to a meeting later where food would be served. But we hadn’t planned a meal for Melissa – after a quick phone chat I picked up a sandwich to go for her.

Pulling away from the drive thru, Joey was getting edgy. “You need to have a dollar. You need to have a dollar,” he hissed over and over through a tightening jaw.

I couldn’t figure out why the cash I’d just handled in front of him was such a big deal. He kept the anxious comments up over his dinner at home. Melissa heard his tone and we worried about a big melt down or seizure coming.

Then we broke the code. At his day program, Joey has outings where he can buy snacks with his spending money. “You need to have a dollar” is a phrase from making food counter purchases. He was telling us, “Hey, if you guys are getting stuff at the drive thru, I want in on the party.” He was aware that I hadn’t ordered anything for him at the drive thru. His perception was that I bought food for Melissa and me to have without him.

So we asked him if he would like us to buy him food next time we went to that restaurant. The agitation and tight jaw went away, replaced by smiles and chuckles.

He is delighted when we finally break his code. The message is always good.

Unlike for this poor kid from the movies…

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3 thoughts on “Anybody got a decoder ring?

  1. I’ll take a decoder ring. Two if you’ve got them. 🙂
    We go through that with Sarah as well–figuring out what she is saying I mean.
    When we had the house built 11 years ago, we had the kitchen enclosed with a door that locks(safety reasons). But there is a very large pass through so that whoever is cooking can feel like they are working at a diner. No seriously, so that whoever needs to be in the kitchen can still see what is happening in the rest of the house, but gogogadget hands don’t get burned. Sarah tells her dad, “Close door.” Translation, “Leave the kitchen.” But then her Dad pops around and talks to her through the pass through. This gets her a bit agitated because she told him, “Close door,” which meant, “leave the kitchen and don’t let me see or hear you.” Her dad knows this and then teases her with popping his head in and out of the pass through in a rather elaborate game of peakaboo with Sarah saying, “Close door,” in an emphatic voice trying to get her meaning across. Weird games we play.

  2. Pingback: “NUMber TEN!!!!!” | Sometimes Care Giving Stinks

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