99 Percent of the Time
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On being that 'different' family

When Charlie was about 11 or 12, I'd feel sad every time he got on a carnival ride. He was always the biggest kid even then -- he only likes a very few rides, none of the, 'big kid grown up' ones, like mega-twisty-fast-high roller coasters - and it seemed terrible that here was something he got such joy out of, going round and round on Ferris wheels and swings or down the giant slide or bouncing and jerking on the 'frog hopper,' and it singled him out as the 'different kid.'

At the local festa we went to on Saturday night with my parents, all the kids Charlie's age were in high passeggiata mode, the girls in cut-off jean shorts, tank tops, long hair all over the place and the boys in a version of what Charlie wears but rumpled in a more stylin' kind of way. They went for the more intense rides or didn't even bother.

Charlie got a long Ferris wheel ride and a solo swing ride (this festa had no slide or frog hopper) and then wanted the car. Jim got a really good gyro and we ended up at the ultra-clean McDonalds down the road and I practically gagged after trying a really salty fry.

Then Charlie was up till 5am on Sunday. He had been up till 4am the night before and taken an hour nap in the afternoon.

I've grown accustomed to his teenage hours and sleep pattern. It would be nice, it is true, to have an honestly restful night of sleep, but (while he's not sleeping) Charlie has been in a quite cheery mood in the past several (i.e., rather frequent) insomnia episodes. He paces, he listens to the Beatles and Teletubbies, he watches videos, he sits in his brown chair, he tries to lie down. But he is not frenetic and in unease as he routinely used to be on such nights; perhaps Jim's and my shrug and not telling him to go to bed are helping.

It's been a sleepy, sticky hot summer, and there have been those moments, the one percent of the time when Charlie's anxieties have burst forth and reinforced (to some on this street) that we are 'the family with the child with needs/special child/[insert less euphemistic adjective] kid' -- something else, after more than ten years in our beloved house, we've also a grown accustomed to. If there is one thing an autismland life can teach you, it is not to heed external standards of success, achievement or such -- 'status anxiety' is a foreign term to us -- and to rely on internal measures to determine accomplishment and when you and your child are doing good.

By any standards, we are having a great summer.




So glad you are having a good summer! We had one of those size/age moments at Ikea, where they have those fun pits of balls. When our girl was young enough to go it, she was too terrified. And then when she was eager to go in, she was not allowed -- too old. I remember how sad this made me -- trying to explain that she was too old, not allowed. I so seriously wish that chronological age was not used to segregate people. Our girls is just about ready to form friends as a typically developing 8-year-old might, but since she's 15, that's just not gonna work.


I love this post! It's encouraging to read about a loving family that doesn't let the ignorant of the world get to them! I've shared this on all of my social outlets!

Kristina Chew

@NSVAR, great to hear for you! Some neighbors were a little more easy-going when our son was younger -- they're not quite sure what to make of him as a teenager. Other neighbors have been quietly, incredibly supportive (in some cases, because they're 'different' too). Thank you for the shares!

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