Tuesday, October 18, 2011

I write scripts for a living...

The irony of my career trajectory is not lost on me, now that we live in autism world.

Today Billy and I had a discussion about scripting. I say 'discussion' like it was a calm, rational, civilised moment. Actually, we were driving and I threatened to pull over and not move the car ever again if he did 'Super Why - the Swiss Family Robinson' one. more. time.

When Billy scripts, it's not just repeating. It's not just regurgitating. It's more like joyfully painstaking practice. It's seriously like rehearsal. He starts and stops, and re-starts again. He stutters, holds himself back, trying to integrate the sound effect and the spoken word in perfect timing. His face is in this beautiful, West-Side-Story-Somewhere kind of place, as he masters something that most of us don't even remember happening in the first place. Again, and again, and again.

We have limits on scripting, though they feel kind of arbitrary. They're mainly based around two things - the need to get something done (that scripting is stopping us from completing) or my fragile mental state (see the afore-mentioned pull over in the car moment). Sometimes they are based on the strange looks from Grandma, but I try to wash over those moments with facile statements like 'Ah, life with a photographic memory, eh?' because I do not want Billy to get the message that a strange look from someone is a reason to alter his nature.

I say 'nature' as opposed to behaviour for a good reason.

I seriously know less, in a concrete manner, about autism every day. It's like the more I read, the less I know. I'm a reverse wise old owl. I often feel like we are living in a world of 'outside-in' interpretations of autism (ie. the behaviour maketh the man). There's a plethora of mainstream research seemingly determined to reinforce the idea that if you can change the autistic behaviour you have succeeded, somehow, in changing the child. While I would do anything to make Billy's life easier, I really struggle with the idea that making him behave like the other kids is the aim.

I'd love him to be not sick a lot. I'd love him to have the ability to eat anything he wants and still have his body function. I'd love a couple of hours of non-YouTube related stillness or the ability to hold a pencil without shaking with exhaustion. I would give up everything I value for a calm, functioning gastrointestinal tract and a lack of auto-immune dysfunction.

Do I care about the lack of desire for sleep-overs or team sport... nope. Not a bit. Couldn't give a crap. Why? Because the 'just like the other kids' idea seems as trivial to me in relation to Billy as it did in relation to me when I was a kid.

Billy's scripting drives me bananas some days. It never drives him bananas. It soothes him, and entertains him and engages him like YouTube can.

I wonder a lot about what he can control and what he cannot. I try and think what boundaries I would set if he was NT and whether I should apply those same boundaries given that he is not. Some days I write him a pretty blank cheque for his behaviour, and on other days, I want to write a ransom note.

My frustration, though, is just that. MY frustration. It cannot be my child's fault that I am irritated by some of the behavioural manifestations of his disability. Never. Ever. Nor can anyone else in his life claim that right. Not his family, not his team, not some random grumpy old lady at the shops who thinks he should be seen and not heard.

We are grateful that Billy has the emergent ability to reflect on his own behaviour. We have some breathing room in terms of the sort of behaviour management most kids have to handle. He is generally polite, generally keeps his underpants in the right place, generally gets that Grandma doesn't want to hear those special four letter words you learn from video game play-throughs on YouTube.

We can see that random tears over things he cannot control, frustration that his pleasant walk down the street has been interrupted by a barking dog, deep fear that the baby at the next table might cry... these reactions and their associated behaviours are beyond his control. These are things we need to avoid, manage or suck up and live through.

Maybe that should have been the title for this post - avoid it, manage it or suck it up.

Today as I gripped the steering wheel in that nasty white-knuckle way that the child me observed in grown-ups many moons ago, I wonder was I avoiding, managing or sucking up the real issue.

Super Why is not so bad. Self-calming is a legitimate and valuable tool in the life of a boy on the autism spectrum. The fact that it drives me nuts is a timely reminder of the lot of an autism parent.

Quick trip back in time, to illustrate my point.

I have the great privilege of knowing some beautiful writers, especially songwriters. A lovely old friend wrote a song once, quoting a couple of bits of my drunken conversation. You can find the relevant pearl of twenty-something wisdom at the 1:48ish mark in this video, and it goes like this (for those with time, bandwidth or don't care that much issues): Accept all the things I don't want to accept, and believe in the things that are true.

Some days, in this autism game, it helps to lean on the clarity our twenty-something drunk selves had...

I accept that my son is different, unique, strange (depending on the day) and I believe he has every right to be just that - everyday. I will smile proudly, no matter what. I will speak calmly no matter what (OK, not if he is heading towards a four lane highway or a growly dog, I'll revise this one). I will allow him to be himself, no matter how that looks to the uninitiated.

And I will let him repeat Super Why. Sometimes. Quietly.

I may even keep on driving the car while he does it.


Simon said...

Wonder Billy. Wonder Mum. Thanks Val.

Anonymous said...

I have been a long time lurker, always intending to comment and then never getting around to it. I have a fifteen year old son who could be Billy's autistic twin (without the sickness bit). Every stage that you have documented here, I can recall my Alexander going through it, it's astounding. They even seem to get stuck into the same things (oh the Numberjack scripts I've endured). When he was about 10 years old and another Thomas script was going to send me over the edge, my younger son hit upon a tactic that is still in use today. Figuring that Alexander was running a video in his head, he was asked to "pause" it, and sure enough, he tapped his chest and came to a standstill! He then tapped "play" and went right back to it, but a precedent was set. Now when we head into a shop or need some focus, we ask him to pause until said task is done, and he complies. You might want to give it a try :)
Nancy Hutchings

Wendy said...

Hmmm... I like that "pause" idea. I may see if that will work at our house. Scripting can get a bit nerve wracking, that's for certain!

Fleeby said...

Yes, I'd heard that, too, Val (about the "pause button" effect). I heard it as a light, full hand pressure on the tummy - but little difference. Also heard that it was effective (good tip, Nancy). You generally know,when you hear advice like this from more than one source, that it actually works.

Anonymous said...

My kids are happy to "pause" each other at a moments notice. My youngest doesn't always take too much notice.

FWIW, I seemed to surround myself with the friends who would sit around on Friday nights driving each other into hysterics scripting between Monty Python, tengenting to Star Trek, off to some other universe. It seems about to come around again in a way I will have far less control over.

Still waiting for the scripting our side, to trigger the flash of insight that "oh, what Bob the Builder says when people say Hello to him - I can use that in real life situations".

Patty O. said...

This is just beautiful. Thank you for reminding me of what I already knew but sometimes overlook. The frustration is mine, not my son's. I'm the one who has problems with his otherness, his quirks. I worry about him not fitting in. Danny couldn't care less. And I don't want him to change just to fit in. I have done that my whole life and it has not made me happy. Thank you for reminding me of the wonder of my child.