The consultant’s office was filled with hand-held spinning lights, noise makers, squeezable balls and lots of books. Clay particularly enjoyed a vibrating “snake” he could hold in his hand or loop around his neck. But nothing was enticing him to sit at the table in front of the electronic keyboard we wanted him to learn how to use. He chose instead to spin in an office chair, explore a desk and computer setup on the other side of the room and make frequent dashes for the steps that led to freedom.
I moved my chair in front of his escape route. My wife sat a few feet away. The consultant and a guy named Mike who was watching Clay a few afternoons each week, sat at the table. We had a couple hours ahead and no plans to leave until Clay engaged in some manner with that keyboard. Clay hadn’t used speech to communicate with us directly in five years. Our hope was that he could learn to type instead. We knew his visual processing issues and poor fine motor skills would make it a challenge. The consultant we found was practiced at helping people overcome those barriers.
In the early going of this first session, it looked like her biggest challenge would be luring Clay to the table. We still had no idea what to expect.
Clay spoke in what we thought was a relatively normal manner until he reached second grade. Although when we look back, we know now he was mostly using “scripted phrases” – phrases memorized from books, videos and other conversations. When the instructor pushed him beyond his comfort zone in gymnastics class he would say, “I do not wish to fall.” It is admittedly not typical language for a kid, but we took it as his way of saying that he was afraid at that height. It takes a practiced reader of Dr. Seuss to recognize, as we eventually did, an exact quote from The Cat in the Hat. “I do not wish to fall.” is what the goldfish says when the cat is juggling him and other items while standing on a ball. Unable to produce his own words, Clay had pulled a phrase out of a book that fit the circumstance exactly and conveyed his message. It takes a smart kid to make that kind of connection. Still, we couldn’t deny that his language processing was a major concern, and was only getting worse.
Clay’s language became more and more sparse as second grade continued, and over the next few years he stopped using speech to communicate. For awhile, we kept pushing him to speak, insisting, for example, that he couldn’t have juice until he said the word. Then one night we found him lying in his bed upside down, his feet up by the pillow. He was crying. Something was wrong. We couldn’t figure out what. We calmed him down, and stayed with him until he began to fall asleep. A few minutes later, something in the way he was lying there struck me. I went back in to check on him and sure enough his right foot was stuck between the bed and the wall. He couldn’t pull it out, and he couldn’t tell us. That was when we stopped trying to push him to speak.
Even though he couldn’t use speech to communicate, we never stopped believing that Clay had a lot to say. My wife—Clay’s most tenacious advocate—researched the idea of teaching him to communicate with a keyboard.
About an hour into our first session, we had managed to get Clay sitting in front of the keyboard two or three times, lured by a stack of his favorite books. With the consultant providing light support under his wrist, Clay typed “y” for yes when asked if he would like us to read a book to him. Another “y” when we held up the book he wanted read. We pushed him to spell out all three letters in “yes.” The consultant was pleased at this beginning. Then the big challenge. No more simple yes and no responses. The consultant typed an open-ended question on the keyboard, which repeated the question in its robotic tones. “What do you want to do now?” We were hungry, tired. Didn’t expect much of an answer. The question hung in the air. Clay typed a word. He got up and walked away. The consultant asked him to return to finish his answer. He came back and typed a second word. He wondered away again. She lured him back again. It took about 10 minutes, but ultimately that sentence was finished. “Have Mike read.”
As Mike reached for one of the books, I looked over to see my wife quietly crying. A lump rose in my throat.
After five years, Clay had presented us with his first sentence. Now we were speechless.
Photo credit: geishaboy500. Attribution.
Life With Clay 
#1 by Suzanne on July 29, 2012 - 9:11 am
This made me cry, like Clay’s mother. My daughter is almost 8 and autistic. She speaks mostly like you said Clay used to speak, in phrases she has heard, and oddly, one of the very same phrases—she often says “I do not wish to fall” from the same source. Hearing about Clay gives me a lot of hope. Thank you.