I Wish. I Want. (#297)
Autism and The Sublime (#299)

Overload (#298)

Autism Information Overload is something I, like many parents, suffer from. Do a search for "autism" on Amazon.com and over a thousand items appear. Go onto the internet, put autism into Google, and you'll be inundated (hence portals like Autism For Parents and Autism Support Community are useful indeed). I know a lot about autism, or rather, a lot of information about autism--a different kind of "autism knowledge" than if I had autism.
This afternoon I did an interview for a DVD that COSAC is making. On hearing questions like "what was your initial response to Charlie's diagnosis" and "what I thought about autism awareness and the community," a million things were on the tip of my tongue. I needed to say sound bytes but kept spouting mini-epic answers: "Charlie was diagnosed on July 22, 1999, at the Minneapolis Children's Hospital but we really knew something was going on in December 1998 when he was 18 months old, Charlie walked late, Charlie acquired all of his gross-motor milestones late...."

I had to start over. I focused on the question I was asked and engaged in some echolalia, repeating the first part of the question in my answer: "Autism awareness is important for the community because......"

After my portion of the interview, the crew went up to Charlie's room where he was working with his ABA therapist. Whenever anyone but the therapist is in the room with him, Charlie has been getting agitated and anxious, so we predicted that the presence of two strange men (one with a camera, one with a microphone) would have a big effect on him.

The ABA therapist, who had only learned about the DVD that morning, taught Charlie with unflappable ease--while noting that Charlie wasn't Charlie, and not because of the two new strangers.

It was because Charlie did not ask for a single piggy-back ride.

Charlie had slept fitfully and woke up at 5.15am with Jim, who left a half-hour later for a long day of teaching and grading. Charlie slept until 8am and woke frowning. He asked for "white rice," sat with the pot and his favorite "barn p'ate," suddenly threw plate and pot and then had to drag up the vacuum cleaner and clean the floor. Charlie had a fine time at a local zoo with my parents and went to look at a wolf my dad pointed out. He ate a lunch of sushi without the usual gusto and refused the ginger, and, on finishing eating, immediately went to wrap himself in Daddy's blue blanket and curl up on the couch. He perked up, smiling, when his ABA therapist appeared, but soon was slumping on his blue pillow, completely wrapped in the blanket, between sessions of word/word and word/picture matching (and getting all the answers right), with the camera rolling and new faces watching.

"He's hot," I said, feeling his forehead. Charlie fell asleep on the couch until 6.00pm, smiled when told "Dad's coming home," and coughed a throaty cough. He hurried to put on his favorite blue fleece coat and his hat (the weather had cooled down from yesterday's 82 degrees to the 60s) to accompany my parents to pick up "bwown noodohs" for dinner.

On the way back, Charlie's stomach heaved, my dad called on his cell, Jim met the car with a roll of paper towels and I hustled Charlie into the shower where he further lost the little food he had eaten today and sent four adults scrambling to clean the car, rinse out clothes, stay with Charlie. Then, swathed in his blanket like Ben Obi-Wan Kenobi (Alex Guinness version) in his brown robe, Charlie slowly came to sit at the kitchen table.

"I wahn earn p'ay," he said, eyes very big.

"What did he say?" asked my dad.

"He wants to go play, he's asking for you to say he can," I said. "You can go play, sweetie, you'd better go lie down on the couch."

"Downonna cowsssch," said Charlie, who did just that, requested "wah'err," and fell asleep. (And was definitely a lighter load when I carried him up to his bed.)

My dad speculated about food poisoning and Jim and I suggested allergies and psychosomatic anxiety. My mom shrugged. "You know sometimes when there's a dramatic change in the weather, kids get sick. Just like them."

The end of spring break. My parents taking the airplane home tomorrow. That 20-degree change in the temperature. A visit from a great-uncle. Other grandparents still in the rehab, and one not doing so very well. The last stretch at his school before it closes in June. Being filmed for a DVD.

Being Charlie.

That's not simply information overload. That's enough to make a person duck, cover, and seek out essential creature comforts, and still not be able to keep them down.

We had planned a full Saturday--taking my parents to the airport in the morning, a verbal behavior session, a Philadelphia Phillies baseball game --but it's looking like it'll be an at home kind of Saturday, perhaps a quiet and peaceful one; and then it will be time to take up our sweet load again.


Bronwyn G

So sorry Charlie seems to be sick or nervous.

I hope he gets better soon.

Kristina I think life with Charlie - being Charlie - is an epic.

You can't reduce it to soundbites, any more than you can reduce a great work of literature to Cliff's Notes. Well, you can, but you wouldn't feel the sense of achievement, pride and privilege.


Poor Charlie :( I hope he is feeling better soon!

I had Andrew to se the allergist/immunologist this week. She prescribed Singular for allergies. She said right now is a bad time here. Most kids are suffering from sinus pain. I know I have been this week. Maybe Charlie does have allergies.

Cool to have the interview with COSAC. Your little family of three are becoming quite the advocates. Keep up the great work!

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