Friday, January 13, 2012

Catching flies...

The other day, we went to a theme park. It was of those loud, rollercoaster-y, crowded corners of hell that most adults avoid like the plague, and most autistic folk abhor. And yet, we went there.

We went because in the centre of the theme park, there is (inexplicably, really) a pack (a pride? a clutch?) of tigers, and Billy, being Billy, was very keen to see them. Two hundred and ten dollars, a few unremarkable tourist-appeasing marsupials and a couple of dopey big cats later, we were done and we made our way onwards to Nana's house.

The point of today's reflections, though, happened alongside us.

For the first time in Billy's life, I was aware of people gawking at him. No matter the age of the gawker, the look was the same... A slack-jawed, smirky, fly-catching gape.

Billy was wearing ear protection. He was jerking his arms and torso, as he does when presented with overwhelming sensory stimulus. He was grimacing occasionally, and quietly scripting to himself. Really, though, it shouldn't have mattered what he was doing. He was being himself, not disturbing anyone. Actually, compared to some of the choice people gathered around the base of the rolercoasters, Billy's behaviour was actually fairly moderate.

A day or so later, we were at another zoo. It was a zoo staffed by a large number of local volunteers who were visible and vocal and proud of their establishment. Seemed like a great idea, until one of them commented on us calling out to ear protection-wearing Billy. She laughed openly and said, 'can he actually hear anything wearing those?' I started to explain how the ear protection cut the top end of offensive sound out for Billy, when the woman interrupted me saying,'That's hilarious!' I stopped in front of her, smiled broadly and said, 'He has a disability. It's not meant to be funny, but hey, if you find it amusing, good luck to you...'

I was briefly angry. Actually, flames may have curled out of my nostrils. And then it got me thinking about what's going on with us right now.

We are walking through a developmental doorway with Billy. He has developed enough language and understanding to begin to have a handle on what autism means to him. He is building a kind of meta-awareness of the effect autism has on his body and mind. He is starting to compare himself to others, and his behaviour to the things he sees other people do.

It's a condensed version of the rollercoaster every day.

We have been talking a lot about the body jerks and grimaces over the last few days. Apart from the theme park/animal adventures, our hotel is by the ocean (sun, crashing waves, screaming kids) and has an old fashioned holiday fun fair parked out the front of it (more screaming kids, gigantic inflatable fun, blinking lights and popping balloons galore).

Suffice to say, there has been a lot of jerking and grimacing.

We have been talking with Billy about whether he can control any of these movements. We have been trying to talk about about how other people view those body movements, and whether or not it is a good idea to suppress them at any time. For what it is worth, the jury is out, conclusion-wise. He does not fully understand the conversation.

But, these are not conversations one wants to be having with one's child, at any time.

'So, sweetie... Do you know how odd you look?', and 'My lovely boy, see those looks on those people's faces? They are looking like that because you look different to other people. Understand?' or even 'Do you think it's important to be the same as everyone around you, my love?'

Like any parent, I am proud of every single thing about my child. I think he is wonderful, and beautiful and inspiring. More than that, I am unashamedly on his team, no matter what. I want to be, and I have to be, no matter how odd he might look.

This isn't just about accepting Billy, it's about accepting autism. It is about understanding that a disorder like autism comes with added extras, that make our beautiful boy a potential object of derision, amusement or judgement. It's about accepting that while some challenges may be overcome, some will be around for life and all are as natural to him as his hair colour and preference for tan coloured foods.

As tempting as it is some days, I cannot spend my time wishing for him to blend in. I don't want him to live in a world where that's an aim. While I am one who would happily hand over my kidneys if it meant the challenges of autism could be taken away from Billy, I should probably preparing some other vital organ as an exchange for the promise of a world free of ugly, ignorant stares.

For us, so far, despite a lot of therapy and research and a lot of attention to health, autism isn't disappearing. It is morphing. We are very lucky that Billy has developed a lot of useful skills, and that he is a little boy with a calm temperament and a lot of love in his heart.

This holiday, as lovely as it is, is also a reminder that not everyone shares Billy's positives. We need to play to his strengths and help him develop skills to help him navigate through a world that needs to judge or laugh at people they don't understand. We must not give him the idea that he should hide, and yet we must try to give him strategies to understand (accommodate/avoid) the pitfalls of being different.

A couple of years ago, I thought this game was all about getting him 'school-ready'. I thought if we could crack that old chestnut, we were somehow home free. If I could turn back time, I would go back and slap myself a little.

After the slapping, I would remind myself that I've never been fond of jumping through hoops. I would gently remove the hoops that the parenting books and classes placed in my hands, and burn them along with the triangle pillows and the ugly floral smocks.

I would tell myself there is no blueprint. There is no roadmap. There is, maybe, a messy looking brainstorm... A doodle that looks like it was done during an inconsequential phone call many years ago. Among the crude flowers, houses drawn without lifting the pen off the page and mustaches drawn on celebrities, there are some useful keywords...

I would point out the words - love, acceptance and courage. And maybe wine or chocolate. Also some semi-harmless weapon for the idiots who laugh and stare.


Lisa said...

If it makes you feel any better...
Have you met the doodlers, the pen-clickers, the foot-tappers, the hummers. In meetings? In restaurants? Oh, especially in meetings, where people are 'supposed' to be sitting quietly and listening.

I reckon that these are the flappers, scripters and jerkers of their childhoods.

Over the years, they have matured. They've moderated their responses into forms that elicit less gapes. The responses have not gone away, they're just less noticeable.

Look around, and you'll start noticing them. They're everywhere. And you can smile. Knowingly.

Di said...

Hi Valerie, I feel sad for you all, having to endure the stares.... and I thought the South Africans were rude!!
As for the 'getting him school ready'. I presume that we all go through that! We are conditioned to think that if our kids can cope academically, then they will be fine.... ha, bloody ha! :)
I just know that you DID NOT wear ugly floral smocks!
Thank you for this post ~ I went from feeling sad, to indignant, then sympathy and finally ended with a smile.

Lizbeth said...

Oh gawd, I'm actually going to post about the same thing but I'll fast-track it here. We were out and someone was laughing and commented on my sons grimacing and body movements and I went from absolute rage to sadness in 0 to 60. And the worst part? My son heard all of it. He understood the general gist that he was different.

As calmly as I could I told her my son has Autism and gave her a bit of an education...and I told her she aught to be ashamed to be laughing. I then looked at my son and told him how great he was doing. But the damage was done and I have no words to describe the mark that left on him/us.

If you ever find out a semi-harmless weapon let me know. I could put it to good use. :)

DQ said...

I propose a nerf gun for the fly-catchers.