7 Ways in which Charlie Speaks Up for Himself (#502)

1) “No,” said Charlie this morning when asked to pick up a foam hockey stick. It was the last day of Ant Hockey and, while Charlie had charged all smiles into the gym behind one of his classmates from school, he frowned in the face of the equipment to handle and the loose gaggle of kids in navy and forest green t-shirts. It occurred to me that Charlie seems not to have a competitive bone in his body as, stick in hand he walked the perimeter of the gym floor, following the black line, quite unconcerned about what the other kids were making the ruckus about.
“Hey Charlie, here Charlie, over here, see the ball, stand in line, like this!” I heard my own voice issuing one request after another to get Charlie to participate: My own voice—all those verbal requests—grated in my ears (who would want to listen to so many commands?) and I quickly devised a way to enable Charlie to sort of be in the game, without too much fuss. I called him to “stand on the black circle” near the other players in their loose array and to follow the path of the ball for a few seconds. And that was enough.

2) “Payahno. Pay pay-ahnoh!” It was time for a piano lesson less than a half-hour after Ant Hockey finished and every time Charlie could take a break, he kept reaching for his music book and requesting to play more—this, despite (or perhaps because?) his teacher keeps making it harder. Initially the teacher had only put two or three notes on each page; now, each page contains twice as many notes, plus the other distracting elements of a treble clef, a time signature, and lines to mark off the measures. Unfazed by the changes, Charlie read off the notes and played.

3) “Next year we’ll learn to use the gears,” said Jim after he and Charlie had biked and walked their bikes on surfaces flat and hilly. “Yes, g’uvs,” Charlie had said, mindful of it being a cold day. “Hellmett on!”

4) “Kick ball.” Charlie was standing at the top of a small slope, a friend and her two daughters (we saw Open Season with them) and us at the bottom. We had come to watch the third daughter (she is Charlie’s age) play soccer. Charlie glanced at the game (they won against a previously undefeated team) and after standing and looking and roaming, kicked the ball down towards the girls. “For Charlie,” said the youngest, who is four year old as she handed over a crayon drawing, which Charlie held onto till we got back in the car.

5) “Swim pool!” One minute of hesitation at the edge and then in Charlie jumped, soon to speed his way across the pool to the deep end. It was a special Saturday afternoon program at the YMCA, just for autistic children; a number of high school student volunteers were present and the shallow end was packed. It has been weeks since Charlie was in the water and he cavorted, backfloated, glided his way in the deeper water.

6) “Baja! Bah-ah, bah bah……” Jim chose a corner table at a brightly lit Mexican fast-food restaurant and brought over a plastic tray with chips (Charlie arrayed the three little paper bins and the two cups of salsa in a careful formation in front of himself) and then rice and beans and guacamole. Charlie put his hand on my left wrist and set it near his dish, which I held onto lightly: He is no longer throwing his food, but sometimes seems to want my hand holding the plate, just in case.

7) “Daddy white car all gone, Mommy black car!” Charlie said these words 110% loud and clear as he was standing in the cyber cafe of a university student center. We were talking to Ari Ne’emen, President of ASAN (Autistic Self Advocacy Network) and if Jim and I were musing about where do we go from here after the October 27th autism conference, talking to Ari gave us plenty of direction. How to help autistic students transition to college from high school, and to high school from middle school? How to affect policy with respect to the needs of autistic students? How to make neurodiversity more widely known and understood? How to make colleges “spectrum-friendly”?

Charlie at first clomped and paced amid students busy at their laptops, textbooks open and iPods on, then sat down as directed in a chair between Jim and me and looked at Ari out of the corners of his eyes.

There’s a lot of to listen and learn about these days in Autismland.

5 Responses to “7 Ways in which Charlie Speaks Up for Himself (#502)”
  1. Kassiane says:

    WOW. Go Charlie!

    He’s learning to express himself in ways that aren’t easy for him…that’s the hard part. I know he works for those words. I feel for autistics like Charlie who work for words, be they typed or spoken, and I feel more for people who’s current way of advocating is through action. The sender isn’t always the one doing a bad job, yanno?

    But it sounds like the sender/reciever/feedback loop was working quite well today. And Charlie is just such a fabulous kid. I’m glad I got to meet him, “share space” with him. Sometimes that says as much or more than words.

  2. Nicole says:

    I have been a lurker on your blog for awhile and love to read about your son.

    After about a dozen misdiagnoses, I was diagnosed with PDD-NOS the summer before my third year of college. I was really miserable my first two years (i.e., pre-diagnosis). Besides just needing more time for adjustment than a typical student, there were three major factors that helped me transition: 1) accepting that it’s okay to use accommodations (relieves so much unnecessary academic pressure), 2) getting to closely work with professors who do research on my stim topics (it’s finally good for me to have odd, restricted interests), and 3) having support from two faculty who understand the needs of autistic students (I’ve had plenty of insensitive professors).

    Despite much doubt from me and other people, I somehow worked through it and am currently applying to PhD programs.

  3. Kassiane, very glad Charlie could “share space” with you too—He does work for every word (and sound, too).

    Nicole, great to “meet” you. The three factors you mention are incredibly helpful to me—-if I may ask, what kind of PhD Programs are you applying for?

  4. Nicole says:

    Well, I rarely tell people my diagnosis. Because of the field I want to go into, insensitive people, (and the popularity of your site!), I can’t risk posting personal, possibly identifying info. I don’t think having an ASD is a negative thing, but other people would disagree …

    If you want, I may be okay with emailing you directly. Let me know.

  5. Nicole, Thanks so much—I did not mean to pry! I also advise students about applying to graduate school and can’t help asking those questions.

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