Monday, March 21, 2011

When Autism Kicks Your Butt

Most of the time I think I cope remarkably well with the day-to-day struggles autism brings to our lives. At this stage, nine years post-diagnosis, we're old hands at the routine. Unnatural (but sort of cute) obsession with game shows? Check. Reminding him to pull his shirt out of his shorts after going to the toilet so he doesn't look like that disabled kid? Check. Standing firm during tantrums and fussing and back-chatting and oh-my-gosh-kill-me-now puberty? Oh heck yeah - check, check, CHECK.

But every now and then, it stops being an ordinary part of our day. Every now and then, and over the smallest of things, I find myself tearing up.

This is not easy.
This is not standing proud in the midst of adversity like a blond-braided, horn-wearing Thor-dette.
This is quietly falling apart.

It might not be for long - maybe just a couple of hours - and it may not be very visible, but it happens. I try to keep moments like these largely hidden because honestly? Ninety-five percent of the time I'm fine, I don't take crap, I don't suffer ignorant idiots and I sure as heck won't hesitate to take an uninformed person down a peg or two if the occasion arises. I fight for my son, and I fight hard. I just need a break from fighting against him sometimes.

He can't help it, I know. This is just him, wrapped in confusion and hormones. I do not consider him to 'have' autism. Autism is just a part of him, of who he is - it colours every thought, every emotion, every relationship that he has - but you can't separate him from it in the way that you can with measles or a bad cold. I don't think he will be cured (for the record, I consider autism a neurological disorder, with a screwy-gene trigger, and not something he 'caught' from vaccinations - I respect your opinion, please let me keep mine). Though I hope and pray that autism gains more acceptance as time goes on - and not just the puzzle ribbon-wearing, benefit dinner-hosting, support-you-from-a-distance acceptance, but the real, solid, I'll-be-friends-with-your-son-in-the-school-playground-even-while-the-cool-kids-watch type - people need to know that it is not always like this. There's a whole group of us who wait for a quiet moment away from being 'Mum' and just cry. And then we strap on the armour, pick up our spears, and go out to fight another bear tomorrow. We aren't superwomen. We are not impenetrable. And most of the time the bad stuff hurts like a b*tch.

It was easier when he was younger, in a way. A fussy four year old isn't an anomaly - but a fussy 12 year old who is as tall as his mother behaving like a four year old certainly is. Though he has since outgrown the full-blown nuclear meltdown stage (an autism meltdown is a wonder to behold, truly), he still has odd behaviours. He still stims (though much reduced, his hand flapping will never fully leave him), he still speaks oddly and occasionally gets confused with the meanings of words and structure of sentences, he still gets in your face about whatever his current obsession is. When you talk to him for any length of time, as awesome as he is, it's very clear that he is affected. This is who he is.

But we are lucky. We are so very, very lucky. Some days I have to work hard at reminding myself of this, but we are. He had no functional speech until the age of four, but we got there. He wasn't toilet trained until his sixth birthday, but we got there. He does not have an intellectual disability. We are yet to see - and will hopefully never see - seizures. We have had great, selfless special education teachers along the way - true angels on earth.

But it doesn't stop the worry. Nor the ignorance seemingly built-in to a large percentage of the population. And though people will still continue to tell you you're doing fine, that you should be proud of such a well-adjusted kid, that you're a great mother - you'll still find it hard to believe. After all, you can't be there all the time to explain him, to protect him, to speak for him, to applaud him. There will be hurting, tears, bullying. And you'll tell yourself every day that you need to cut the rope, to let him go off and be hurt because while all that is happening he is growing and learning and accepting and maybe along the way (you desperately hope) others are growing and learning and accepting too. But this is the most painful thing in the world for you to imagine because all you can see ahead is an enormous blazing fire, and what you're expected to do amounts to dumping your child right in the middle of it and expecting him to fight his way out with no scars.

It's insanity. It's the opposite of what is implanted into every nerve-fibre the second you become a parent. It feels like you're feeding him to the wolves. Willingly.

I know - or rather, I hope - that he will be fine. I repeat this to myself every day like a mantra - he'll be fine, he'll be fine, he'll be fine. And though the support of friends and family will follow you, and though for every bad day there are ten good ones lined up to take its place, there's always doubt. Maybe he won't be fine, comes the eventual whisper.

And alongside it, the faint smell of smoke.

Friday, March 4, 2011


...just as soon as I can clear the cobwebs! Stay tuned!