Different & Able (#199)

Disorder, disability; has autism, is autistic; on the spectrum; biological, biomedical; neurological, developmental; high or low or classic. (Yes, we were once told that Charlie has “classic autism.”) Semantics can mean a little and a lot to parents trying to find their way in Autismland.
Charlie pauses by the cosmetics display
Autism Spectrum Disorders are “officially” classified as “Pervasive Developmental Disorders.” I have been saying “disability” as I have learned about the Americans With Disabilities Act (ADA), the Individuals With Disabilities Education Act (IDEA),and the growing field of Disability Studies, which seeks to tell the unknown history of persons with disabilities, to consider literary portrayals of the disabled, and much more.

Most of all, I am always thinking, how does Charlie fit into all of this?

I prefer to say “he’s disabled” to “he has special needs”; I also tend to add “Charlie has autism, it’s a neurobiological disability.” (And feel I should be passing out a card reading, go to Autismland.com.)

Charlie is differently abled with so many strengths and talents. The swimmer, the bike rider I never was. The boy who sings in tune (as I have never, ever, been able to).
Carryingbasket
The strong boy who carried the shopping basket as he followed me in the grocery store this evening.


It was evening and, after a good day, we had stopped at a drug store to pick up refills of Charlie’s medications, after which he looked at me and asked for “shopping cart.” Though so groggy he was still asleep when the bus came (a bit early), Charlie mastered several of his programs (action identification) at school and did his share of manding and sorting and imitating and playing at his afternoon verbal behavior session. “Turn on,” came his voice from the back seat when I turned off the CD player, not sure if he was in the mood to hear so many guitars and drums.

(Yes, we just went to the grocery store on Tuesday. We like to practise doing well in public places frequently, for longer and shorter periods.)

“How ’bout you carry the shopping basket?” I pulled the plastic and metal basket from a stack and handed it to Charlie, who had stopped short on one side of the automatic door.

Charlie held on tightly to the basket as we filled it. He poked his nose close to the offerings in the salad bar but did not (as he once has) grab a bite. He looked fleetingly down the frozen food aisle where–just this past summer–he had been adamant that we get bags of frozen fries, or frozen peas, or the wheat-free waffles that became such a routine obsession we have stopped buying them. (Charlie would say “I want waffo!”, tear up the waffle after it was microwaved, look at it, cry out, swipe away the plate, waffle bits in free fall all over the kitchen.)
Littleshopper
“Let’s get in the checkout line,” I said. “Put the basket on the conveyor belt. Basket on the conveyor belt.” Pause. Pause. Pause. “Charlie, let’s put the basket ON the conveyor belt.” The woman behind us quietly moved back so I could stow the empty basket beneath the counter. I handed Charlie one of the bags of groceries and he walked beside me, across the parking lot to the black car, bag in his hands.

It was two or three years ago that I started to say “my son has autism” when I was out with Charlie in public and he would issue his blood-curdling scream or stick a finger into a carton of soy ice cream. Often, when we were in a gymnastics class and I was taking a turn in the obstacle course so Charlie could imitate me, a five-year-old would say to me, “What are you doing here?” Since I could not explain “autism” in five seconds, I would shrug and say “Charlie just needs some extra help” or “he’s disabled.”

“Disabled,” it is true, is a word with different, broader, associations and I suspect I will be trying out many different words to explain Charlie for some time.

Just before bedtime, Charlie was lounging on our bed with his squishy pillow and blue blanket and his green rabbit as he listened to music. I heard him singing, then his feet thumping down the stairs.

“Aw Krissmath two teet. Aw Krissmath two teet! I want. Mommy I wahn.”

“All I want for Christmas is my two front teeth?” I asked, slowly and precisely.

“Aw want Krissmath two f’uhnt teettth!” Charlie laughed and ran upstairs.

What an annoying song, I thought.

Charlie sang out those first bars of the song and–cast in the different tones of Charlie’s voice–it might have been opera.

“Turn on!” he laughed, and I did.

That’s what I’m doing here, doing what I’m able to do for Charlie, a different sort of boy–and how I do love the difference Charlie makes.

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Comments
5 Responses to “Different & Able (#199)”
  1. Joel says:

    Wow, in that pic of Charlie walking down the dairy aisle he looks so grown up.

    Your discussion of semantics reminds me of Christmas when one half of my family got into a big debate over wether or not my brother has a learning dissability. They’re convinced that since he says he doesn’t, he must not. (Despite being diagnosed.) Truthfully he does, but the social stigma is such that he’d rather people think he’s just lazy rather than dissabled. Strange how titles work, sometimes so useful and often just as useless.

  2. Eileen says:

    I love the pictures! That basket carrying is so good for strengthening that muscle tone for his writing. You “teacher Mom” you! Always thinking.

    I am sure soon we will not have to explain what Autism means so much and will be able to use it to describe our boys, as opposed to disabled. Who knows maybe I am a little optimistic. It is funny when I hear Brian telling people that “My brother has Autsim”, I think of how he, at 4 years old, knows more about disability than the average adult.

  3. KC's Mommy says:

    Super super photos of Charlie! He does look so grown up! There are so many wonderful photos of Charlie. I have to say the photos at the top of your page and the new ones of him shopping are my favorites!
    He is doing such a beautiful job shopping with his Mom.

    Good on you Charlie and Mom!

  4. Wade Rankin says:

    The problem with the word “autism” is it can mean so many things. There are as many definitions as there are autistic individuals. I have no trouble saying my son is “autistic,” “delayed,” or even “disabled.” I always tend to add — using my best Monty Python voice — “But he’s getting better.”

  5. “… I should be passing out a card reading, go to Autismland.com”

    This reader thinks THAT’S a really good idea.

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