Life With Clay

Clay is usually a happy-go-lucky kind of guy, so it got our attention when he was visibly upset one day last week with the aide that works with him at home.

The county provides us with a TSS (therapeutic staff support), who works with Clay four or five days each week. One TSS left about a month ago, and our new guy is still getting his feet wet. He is doing a great job, but transitions are tough. He and Clay are still figuring each other out, circling one another like heavyweight boxers in the first round of a championship bout.

The biggest issue came when the TSS showed up 30-minutes earlier than usual. Not a big deal, except I forgot to warn Clay, so he was already caught off guard on a day when he wasn’t feeling 100 percent. Bad start. Then Clay became upset when the TSS wanted him to go upstairs to the room we set up for them to work together. We want Clay focused and productive when the TSS is here, working on typing, math, reading and whatever else Clay wants to do. That means staying in one work area for an extended period of time. (Admittedly, I’ve probably been forcing that more quickly than Clay was ready for.) Clay was having none of it this afternoon, so my wife grabbed the keyboard Clay uses to communicate and followed him as he paced around the kitchen.

“What’s wrong?”

“Scared of him.”

“Why?”

“He yells.”

“I have never heard him yell. Are you sure that is the problem?”

Clay thought for a minute.

“Don’t like that room.”

“Why?”

“Too confining.”

Oh. We had rearranged a table and computer stand so that Clay’s back would be to the wall, which meant he was pinned in between the computer stand and the TSS. We thought that would keep him focused on his work, and give the TSS a chance to control his movements a little better. He had other ideas.

“Do you want us to turn the table around?”

“Yes.”

So, all four of us trudged up to the room. We put the table back against the wall. We moved the computer stand. We asked Clay’s thoughts all along the way, something we are learning to do now that he is communicating so well using the keyboard. The little guy is 15. He wants to be part of the conversation. Wants to have input into his day. Into his life. Who doesn’t?

Last week, we met with the facilitated communication consultants who have been helping Clay learn to type, and it was a lesson in how to treat a child with autism. Clay was included in all discussions. They asked his permission to share facts about how he is doing with others. They explained things to him at an adult level. His input was requested repeatedly. (“What did you do at school last year?”  “Not much.” “What do you want to study in school this year?” “Math, history, music.” “What kind of history?” “World history.” “Do you want to study music in general or a specific instrument?” “Drums.”) They even asked him to be part of a panel for a meeting they are conducting in the fall and are paying him for his time. (More on that later.)

It was eye opening to see how Clay responded to being treated with the basic respect most of us expect every day. His thoughts and opinion were clearly valued, as they should be. It is something we are determined to make sure carries over into his life at school and at home.

“Is this better?” my wife asked when we were done rearranging his work room.

“Much better.”

Sometimes, you just have to ask.

Later, when they were wrapping up after doing math flash cards in the kitchen, the TSS asked if Clay had anything else to say before he had to leave for the night.

“So sorry,” Clay typed. An apology for being difficult earlier. Such a sweet kid.