Thursday, March 31, 2011

What could the future hold...

It's the question that lurks around in the back of my brain like dog poo in park grass (you know, jumps out and grabs your attention at the most inconvenient moments, and takes a while to get rid of...)

I wonder where adult Billy will find himself? What will he be able to do? What will be out of his reach?

I wonder if he will be able to drive, or go to university, or have a girlfriend/boyfriend. I wonder if he'll be able to have a job. I wonder if he'll be able to go shopping. I wonder if people will mock him when they think he can't see.

I wonder how to prepare him for a future that I can't picture. I don't have the skills or the experience to predict where he'll be. I often say, 'Oh I have no doubt Billy will change the world, we just have to stop the world from changing him first.' But really, I'm just spouting platitudes.

I do know that he has a gigantic pile of ability and enthusiasm and humour and love inside him. I do know he is motivated by nothing but good. I also know that he talks funny and walks funny and thinks funny. Well, it's not technically funny to me, anymore, but it's definitely funny to his peers, to teenagers and to the odd other parent (FWIW, if you are an adult and you choose to look at my child with a gaping mouth and a expression that says, 'Gosh, I'm glad that's not my kid', I will follow you and slap with a maggoty fish. I have some for just this purpose.)

Back to the future (now there's a title for a movie or two...), I think there are some positives for Billy and his ASDian peers.

There are a lot of kids on the spectrum, and many many more with ADHD and other behavioural/learning/developmental disorders. The future will be full of out-there adults. This has gotta count for something beyond uber efficient help desks in technology companies and a roaring market in chicken nuggets.

It will surely mean a lot more thinking outside of the box. Need a creative solution for global warming? Ask an Aspie with sensory issues. The drive to get the sun out of your face is strong in those ones. If anyone can see through the extraneous fluff, and pinpoint the real need, it's someone with autism. Dispense with the fear that someone might not agree with you, and the world's your oyster. The rest of us just need to get much better at listening and understanding what autistic people are trying to tell us.

One of my favourite things about living with an autistic person is the respect he has for 'the moment'. There are times when a moment is so excellent, it is repeated over, and over, and over and over. Makes him quite the cheap date. Alternatively,  there are times when a moment is so nasty, that the rest of eternity will be spent avoiding a repetition. We will never waste time on a spinning piece of playground equipment again. Why? Because today, one made Billy hurl. Such equipment is heretofore relegated to the pits of hell. Making trips to the park just that bit less fraught with choice.

I think this will add two wonderful things to our lives in the future - a sense of unadulterated joy de vivre, and an adamant sense of efficiency. What an interesting work flow there might be in 20 or so years...

That is, of course, if the non-autistic folk can accept the autistic folk for who they are. If they can see past the odd speech, the funny walks and the desire to eat the same lunch every single day. If they can accept that someone who communicates with a device, not a voice could be their equal. If they can understand that a bunch of unusual social choices do not dissolve a person's worth.

With that, I descend into shameless self-promotion. Kind of. Through My Eyes, the song, is about to have a whole new incarnation.

The video below features someone I am proud to know. It showcases his talents and it gives him a chance to communicate with people who exist outside his own experience. But that's where the content of the video ends, and the bigger meaning begins.

Scott James has Aspergers. He can sing like very few people in the world can, but his journey with autism has not been a particularly easy one. His adolescence was filled with bullies (peers and adults) and his potential was not recognised by many. He didn't always make choices that made universal sense outside his own mind. Luckily, he lives in an amazing family that couldn't be stronger and in a community that is learning to understand him.

Scott put himself on the line and auditioned for X-Factor UK a couple of years ago. He made it to the end of bootcamp. For those of you that know autism, and watch those shows... just think of the pressure that one of those shows puts on a person. And then think of how your child/sibling/partner would cope with all that pressure - the timetables, the social demands, the lack of reality in a reality show.

Thanh Bui did such an amazing job of the Australian release of Through My Eyes. He gave the song life, he gave the song heart and soul and he supported it as it developed it's own momentum in autism world.

Given the trajectory that Thanh launched, we were really concerned to make a good choice about finding the next artist to record the song. And along came the news that a young man in the UK had done an extraordinary audition for X-Factor. A bit of YouTube/MySpace/Facebook-ing and a flood of tears after watching a beautiful mother/son relationship, and we'd made contact with Scott James.

It's been a long road to get to the release of Scott's version of Through My Eyes, but it's been a road that has taught me more than I ever thought possible.

It's shown me that people should be accepted for who they are, not what they can offer you. It's shown me that a pure heart is worth more than anything and that there's always a logic to someone's actions, even if it's not obvious. It's shown me that the faith that parents have in their children is not misguided, no matter what anyone else thinks.

It's also shown me that Billy's future is in his own hands. He doesn't have to do any of the things I have dreamed for him (Booker Prize, UN posting, atom splitting). He has to do what he wants to do, how he wants to do it, when he wants to do it. And he will probably choose do it with a Thompson's Gazelle involved somehow.

And I will be waiting for anyone who doubts him, with a squirmy wet fish in thwacking position.

In the meantime, have a watch of Scott's video. It will be released on 2 April (World Autism Day) and all proceeds go to an autism charity in Scott's home town, if you want to drop a small amount of money on iTunes.

Two videos in two days... can you tell I just discovered the video linking gizmo...?


Di said...

Let me just tell you... I been hunting all over bloody Durbs for that gazelle/springbok (mind you I have had a really nice time shopping and also enjoyed my daily cappuccino!:D)
Will keep looking, although have discovered that the shops here are more interested in dinosaurs! Weird!
I have visions of you chasing all the toy shop owners with a maggoty fish lol!

Lisa said...

Oh oh. I can feel a blog post fermenting. Dear son is about to turn 18. Adulthood has snuck up on us.

Two said...

This is the big question isn't it that you so often want to avoid. One of my students who has been a teacher aide for ASD kids in high schools said today... 'if we don't focus on what these kids can do, a lot of them becomes victims of crime or even criminals.' (she mentioned a boy she had taught who was brill with numbers and eventually fraud!!) My heart started beating so fast when she said that NOOOOOO!!! I prefer your future vision more!