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Monday, March 26, 2007

Early Days 6 - It’s all relative

[From way back when]
Junior son and I have arrived early at school to pick up his brother from his Special Education Day Class, now that he is in First Grade. We're early because it allows him to adjust to the 'new surroundings,' even though it's been a few weeks now. It helps to be first because then additional people arrive gradually. We need to avoid the deluge of a crowd. Another mother and her child are also waiting outside the same door. We join her on the bench and I smile. It’s reciprocated.

I make sure that junior is on the far side of the bench, as far away from her and her son as is physically possible. My son doesn’t look at the other mother, nor her child. He might notice if it was a baby, but toddlers are in the same category as dogs and cats, small creatures that are unpredictable and need to be avoided. He starts to count the holes in the bench; it is a matrix of blue circles. His nose is two inches away from the bench, the holes and his fingers. He can touch it because it is smooth, not hot nor cold, because of the shade on a sunny day. Our awareness of tactile defensiveness and sensory integration grows. I've learned to appreciate these things as we cope with complicated matters like temperature. He counts in a whisper but explodes with “Barnacles!’ when he realizes that he’ll need to start at the beginning again, because he’s not following a mapped path of holes.

The other mother’s son beams hugely at me with large smiling eyes, heavily lashed. He’s still in nappies [translation = diapers.] We mothers start to chat, as we have a good 15 minutes to wait. She tells me about her family, husband and two boys. She’s very open. I know now that her child is not in the class room behind us but in a different, mainstream class. She tells me what a trial the little one is, so energetic “you wouldn’t believe!” she sighs. I would.

Junior’s body starts to push against mine. I know that my bottom is covering the holes that he wants to count. He’s not going to ask me to move, he’s just going to shove my weight out of his path; his 45 lbs is going to move my adult bulk by will power alone. I tap him on the shoulder to get his attention. He keeps pushing, oblivious and absorbed. When I don’t budge, he eventually snaps "wot?” with a "tone of irritation." Many autistic children respond, if at all, inappropriately, or out of proportion. Eventually he glances up at my huge immovable form with annoyance, his face scowls. I catch his eyes but before I can speak he realizes that he’s lost count again “Fish paste!” he bellows hurling himself on the ground, beating it with his fists, kicking up the dust [ translation = dirt.] He wears long sleeves and long trousers in the baking 80 degree heat. He realizes that the bare flesh of his exposed hands, has come in contact with something that he would rather not have contact with. Immediately he is on his tippy toe feet, flapping his arms and rain dancing to shake off the debris. I make brushing gestures over him, being careful to avoid the head area. His head and shoulders are especially sensitive and strictly off limits. He slumps, crestfallen and chin fallen. His eyes fall on the bench and he flops on it to start counting again. This kind of persistence and determination, often form a mesmerizing form of "perseveration," which is calming.

The woman next to me smiles, kindly “he’s a funny little guy!” I pause and glance at her, trying to gauge if it’s worth it. It would seem that I will see her often.
“Actually he’s autistic.”
“Autistic, he’s in a special education class, Pre-K. So is his brother, that’s who we’re waiting for, he’s in Mrs. K’s class.”
“He doesn’t look autistic?”
I don’t say anything. We both watch him counting holes; 203, 204,205. He will be five years old in a few months. Her son keeps interrupting, wanting her attention; Watch me! Watch me! Play with me! Play with me!

The loud haler starts crackling, warming up ready for the siren. I move swiftly to the other side of him ready to pounce. The end of the school day is announced. It is very loud, with lots of static. I check whether he is about to meltdown and cover his ears or whether he’s disengaged from the whole world, solely intent on his task. It could go either way, but I’m ready to grab him if he goes hurtling off ears covered, to run blindly towards the traffic; 237, 238, 239. What is the American sporting game where you have to catch the ball just in time? Ah yes! Cricket.

“You’d never know, would you?”

I would now.


Jerry Grasso said...

He actually is a funny little guy. But I speak from months of reading this blog.

This goes to a posting Lora on Domestic Disaster has on her blog about labels. Downs kids, those in wheel chairs or real physical disabilities, they are easy to spot and people size them up....possibly appropriately or inappropriately, depending how you look at it, right? Well now, we don't have that with our kids...we get 'funny little guy', like 'funny little guy' in a weirdo kind of way or 'funny little guy' like a strange uncle. This makes it hard for us....especially when you say 'autistic' to give the regular folk a roadmap to what you are talking about....and you still get a blank stare. Sigh.

Anonymous said...

I had the little one in the bottom of the grocery store buggy earlier this winter - 2 tier buggy. And was in line and this woman said to me... "where do I find me one of those". He was quiet, just watching. And of course she attempted to talk to him and the little one barely talks. I said "he has autism, he probably won't talk to you".

Her son has autism too. He is about 8 or so, deaf, severely delayed and mentally handicapped... as she says "atleast the school system does respite"...

It's all relative. I'll take my boys any day over what our issues could be.

And neither "looks" like there is something wrong.

Joeymom said...

I get the "he doesn't look autistic" a lot. I think that may be why we have so much trouble with school- people forget he has a disability, because he doesn't LOOK disabled. Usually when I get that in public, its followed by unuseful parenting advice, or a school person telling me he doesn't really *need* services, he's so high-functioning!

Club 166 said...

Not wanting to sound so down on this nice Spring day, but when you "don't look abnormal" and are at least somewhat verbal on top of that, you are assumed to be trying to get something you don't deserve when you ask for services.

People also make other assumptions, speaking to your parenting skills, or that your child is emotionally disturbed, willful, or just plain bad.

I often make a point of verbalizing at IEP meetings that "You know, he doesn't purposefully disobey you/throw a tantrum/run away (or whatever it is they're perseverating on at the time)." Sometimes the look on their faces when I say this says it all.

Mom to Mr. Handsome said...

I always wonder what people think Autistic children look like? Head tilted to the side, spouting numbers, pants at Pee Wee Herman level like Rain Man? It's going to take awhile to break that stereotype, isn't it?


kristina said...

What does autism look like?

We used to get "he sure looks intelligent" [ = how can he be autistic?]

I've had many a pre-pick-up conversation---during one of which, I mentioned that Chralie was going from Miss A's room [special ed preschool] to Miss B's [self-contained autism]: Other mother's jaw dropped a bit [her son had been in Miss A's, now headed for Kindergarten, younger than Charlie] and she smiled and we didn't talk again.

Heidi said...

I think that's why it's so hard for most people to understand - because on the outside, our children are just like any other child. My son is high functioning autistic and when I point this out (as in 'no, he does not want to play pass the parcel!) I am seen as a paranoid, slightly delusional parent who should chill out a bit! Yes, I get that 'funny little guy' as well. Come and watch me deal with a 3-year old having a meltdown and see how funny it is then!! : )

Anonymous said...

It is strange what makes one sad. Sometimes our children do seem so "normal," then they stand next to a "normal" child for 15 minutes and all I can see is the differences.

I get "he doesn't look autistic" all the time. People think he is willful, people think he is bad, people label me a terrible parent. What I like to see is their faces when they meet my neurotypical daughter and try to reason how such a horrible mother can have one "problem" child and one "perfect" one. Emma has enough social skills for the whole family.

What hurts worst are the assessments of my family. My father continually says there is nothing wrong with my kid that a whole lot of discipline wouldn't cure. My mother says that she is convinced he is like he is because I ignored him as an infant - she isn't blaming me, she insists, I had twins who were "so demanding, William just got left out." She thinks that the special school we sent him to for a year (to pull his language up to appropriate level) helped so much because they finally played with him enough.

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