Reading Charlie 101 (#208)
21 January 2006
Charlie talks all day long, mostly requests for things that we have taught him ("I want eat white rice," "shwimp!", "piggy back Daddy," "b'ack car") and a lot of discernible syllables, vowels and consonants that might be words, but I've yet to figure them out. So I have to translate or "read" these.
There is a second type of "reading" that we have to do constantly in understanding Charlie. It is not only that we have to "read" what Charlie says. Since his language is so limited (and ever-growing), we also have to be able to figure out why he does something by noting and analyzing his actions. This kind of "reading Charlie" via his actions and behaviors is not as easy, but necessary when you're trying to figure out what is going on in Autismland.
Today I had to do both kinds of reading. I heard Charlie say new and original phrases, in which he asked for or talked about things of his own devising.
"I want b'ue eat!" Charlie was sitting at the kitchen table watching a pot of rice cook. I often put the pot on top of a blue silicon mat, a square with soft bumps, and--while probably not realizing that the mat protects the table from the hot pot--it is a routine that is good for Charlie to learn.
"Mommy gink s'irt! Char-ee b'ack s'irt. Shirt on!" Charlie was lying under the covers in our bed when he asked for these. He used to want me to wear that pink shirt as part of some ritual-in-his-head and cried and snarled and screamed if I did not---so I stopped awhile ago, saying "Nah, Mom's wearing a different shirt right now." His request for his black shirt had never been made before.
The shirt says "got rice?" on the front and has a picture of a rice cooker on the back; it's an Asian-American parody of the got milk? advertising campaign of a few years ago. My dad--a champion rice-eater himself--gave it to Charlie. I'm not sure if the Gong-Gong or the rice association, or the black color, appeals to Charlie, but tonight he pulled off his pajama top and put on the shirt, and smiled.
These original phrasings give me the tiniest slivers into what and how Charlie thinks: What does he care about enough to try to pull it all together for, to put desire and thought into words?
Charlie's request for the "b'ack s'irt" came after an hour of unsettled humming amid barely discernible words, a crying run up the stairs to lie in our bed, throwing his music player down the stairs, a request for an apple that was then thrown, a pause and big-eyed cry of "busss"---and a keening wail, sad and pain-filled.
I sat down on the blue plastic table Charlie had dragged into our room a few days ago. "Yes, you'll take the bus to school on Monday. And tomorrow is Sunday and there's no sessions and you can hang with Dad and Mom."
"Busss," said Charlie.
"Yes, the bus will come." I said as Charlie nuzzled his face into the sheets. "Hey Charlie. Nothing to worry about."
"Red school-bussss," said Charlie.
Charlie had awoken at 6am and alternated hopping into our bed and running downstairs to look into the refrigerator. He and Jim went on one of their Five All Time Greatest bike rides into a few neighboring towns; Jim reported that Charlie really wanted to go farther, but it was time to come home for an ABA session at 12 noon. Charlie grabbed his blanket and ran up the stairs and worked away until about 1.20pm, when I heard a yelp and then a crash and found his music player thrown on the stairs. I carried it up and entered his therapy room, just as he started a wailing cry.
Here is where we had to do the second kind of "reading," of Charlie's behaviors, of what he does. The therapist and I talked quickly about how Charlie had been working on a new program ("put with same") and how he was doing fine and then threw himself on the floor. The therapist has fast responses and kept Charlie safe. I thought about previous conversations with our ABA consultant and suggested that, even though Charlie was having a great time and was motivated, he knew that he did not yet understand this new program yet and--in anticipation of responding incorrectly--got overly anxious. The therapist nodded and soon Charlie was getting a spinning piggyback (said therapist is both tall and strong) and did fantastic for the rest of the session, and at his verbal behavior session with Miss Cindy (mastering sorting five categories, imitating a sequence of actions with a delay).
We were more thrilled than thrilled can be to hear Charlie say "Luvoo Budd" while he was hanging out by Jim's desk with its laptop and papers. It is one of those phrases that Jim has said on and off often, along with singing "We love you Charlie/oh yes we do/we love you Charlie/we know it's true." Charlie's fragments may never fill the covers of a book but they have given me a triple lifetime of words, phrases, sounds, poetry to reflect upon and read.
And to preserve for future generations to read and even learn from.
I noticed that "got rice" shirt in your post a couple days ago and got a big kick out of it. How funny that it's a new favorite for Charlie. What a great kid.
Posted by: gretchen | 22 January 2006 at 04:22