life on the "j" train

Taking a "busy working mom with 2 special needs kids" life one moment at a time

More Visible = Easier? July 30, 2013

When Jay was say, 2 or 3 years old, and he would act up, people were quick to excuse the tantrums away. He was “just a baby” and everyone knows about and has their own stories about the “terrible twos”. We see it all the time; Parents struggling with a crying baby and more often than not, no-one judges or assumes the worst about that parent. It’s expected that babies are going to cry. People may even offer to help the poor woman who is trying to quiet her hungry baby while also trying to get the bulky double stroller through a doorway that’s not built for such monstrosities.
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Last weekend we were, once again, at our neighbourhood pool. There was a boy there. Tony was his name. I’m not good at guessing ages, but I’ll put him in the 14 yr old age group. He was a big boy and his vocal stims, flapping hands and overly childlike behaviours clearly showed to anyone who looked at him for more than 5 seconds that he had some kind of developmental issue. He very obviously loved being at the pool and was having a great time, but he was not following the pools rules.

The life guards on duty were very good with him. Each time he climbed up on the wall to jump off, they would gently remind him that it wasn’t allowed. Each and every time, he would do it again. No-one lost their temper with him or threatened to throw him out. They were very understanding and calm and patient. I liked seeing the way they were with him.
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Then there was my Jay.
He’s 5 years old and he looks “normal”. His body movements look normal. He doesn’t have any physical stims and his facial expressions look like any other 5 year old. There is nothing about him that would clue someone in that he has any kind of issues.
When Jay doesn’t follow the pools rules, it looks like he’s just being bad. It looks like he has parents who are not in control of their child.
Jay kept running along the side of the pool and the guards were kept busy blowing their whistles and yelling at him to stop the running.
Ace, who was playing with a new friend, stopped playing and told one of the guards that Jay was his brother and didn’t understand the rules. He was quickly dismissed with a stern, “Tell your brother to stop the running.” There was no tolerance for Jay and his antics.

Also at the pool, was a little girl of around 6. She was getting yelled at a lot too and actually got threatened with expulsion from the pool for not following the rules. She had been playing with Ace and even though they found a way to have fun together I quickly realized that she didn’t speak any English. As far as I could tell, she was totally unaware that she was breaking rules. Because her handicap (not speaking English), wasn’t obvious to the life guards, she wasn’t given the same leeway that Tony was. All they saw was what looked like a typical little girl, running and jumping and not doing as she was told.
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There was a time when I fretted immensely about Jay getting older. I worried about the gap between him and other children his age widening. Back then, all I wanted was for time to move slowly so I could “fix” him. I wanted so badly for him to “catch up”.
Now, I’m in no rush for him to grow up. I’m at a new place in my acceptance of Jay’s differing neurology. I’m fully immersed in enjoying my children and where they are at now. I’m not trying to turn either of them into some cardboard cut-out of what society thinks is normal.

People describe autism as an invisible disability. I understand why, but it’s really not so invisible. Sure, there’s no wheel chair and sometimes no obvious physical characteristic but there’s a lot of visible behaviours.
When Jay yells or screams or ignores the rules or runs or tries to climb over the concession stand counter, it’s showing people that he’s not interpreting the world in the same way that most people do and it’s showing people that he communicates in a different way from them. But that’s not what they have been trained to see. All they see is a bad kid with bad parents. His brain mechanics is invisible.
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I do still worry about if he’ll be able to support himself as an adult.  And I worry about if he’ll be bullied in school.  And I worry about what will happen to him once CC and I are not around anymore. And I worry that Ace will feel obligated to care for his brother and be resentful of that responsibility. 

It’s also true though, that I’m starting to see that there may a benefit to him getting older and being more “obvious”.
As Jay gets bigger/older – there may actually be an up-side. I may have one less worry. If people can see there’s something amiss, they will be more accommodating.  Usually.
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At 5 years old he’s at that in between stage. He’s not a baby anymore so people no longer have that as an excuse for his badness. But he’s also not a big, 14 year old (almost man) child who’s squealing and flapping and jumping off the forbidden wall.
A typical 10 year old doesn’t speak in a way that is difficult to understand and get frustrated because the sun is coming through the car window and touching him. A typical 12 year old won’t scream and run away because you offered her a slice of pizza or a grape. A typical 15 yr old doesn’t walk up to strangers and hand them his toys to hold while he goes and does something else. (Jay has done all those things.)

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Yes, it’s true that I find myself caring less and less what strangers think about us when Jay gets mad or doesn’t listen but I’d be lying if I said it was a total non-issue. Maybe, just maybe, the reaction that he (we) get now when those things happen would be different had he been older or his disability less invisible.

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2 Responses to “More Visible = Easier?”

  1. I feel your pain. My Little Man isn’t on the spectrum, but especially when he was younger, his ability to transition between activities was poor, his emotions were extreme, and he wore me out every single day. (If he had been evaluated when he was 4 or 5, he probably would have been placed on the spectrum). And yet, in public, he “looked normal” to the untrained eye. He’s 10 now, and has come a long way. He’s still got plenty of issues (SPD, ADHD, dyslexia and anxiety), and I’m dreading school starting. Hang in there.

  2. Krystal Says:

    I couldn’t agree with you more!! While Silly is obviously autistic – the other 3 are not so much, so I get what you are going through. The worries never end and maybe it may be a bit easier when they are older because they will be noticeably “different” but we just want them to be accepted now – without being labeled the problem children with the irresponsible horrible parents.


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