Life Version 2.0

A well-written and insightful article in the Guardian yesterday, by Dea Birkett, got me to thinking. You can read it here.

Officially, Twig’s condition remains undiagnosed. Maybe because he has a mixture of traits and we’re dealing with a broad and vague scope, in Autism Spectrum Disorder. Or maybe because the professionals who have dealt with him are just unwilling to label his condition – a rarity in today’s society, I’m sure you agree.

Though I never have, as yet, had to deal with the cataclysmic ‘your child has…’ moment in the doctor’s office, having instead dealt with a very long-drawn out and inconclusive version over the past 4 years or so, I still find that my world view has shifted when it comes to thinking of the future.

There are moments we all absently consider or daydream about, with regards to our little ones. First day at school. First date. First job. First home (and our chance at around the eighteen year mark to take a holiday where we only pack for ourselves, rather than stuff a suitcase with toys, jigsaws and other distractions, while our own wardrobe is downsized into a tote).

When you come to the realisation, no matter the time-scale, that your child is ‘different’, I think it’s these sort of things that immediately leap to mind. Some skew. Some wither. Some, frankly, just have to be let go. It’s most certainly a grieving process, for many of the hopes and dreams you had… and they weren’t even for yourself.

And what of yourself? More than likely we all already had an idyllic view of how life was going to be as a parent; joining in on all these important landmarks, taking photos, recording videos, scrapbooking every fragment of the life you’ve helped to build. What are you supposed to do now? Not only is your child’s life suddenly looking very different, but your own role is now far from defined.

Will you become a full-time carer? What will happen if, by the time they reach their late-teens or adulthood, they’re not capable of looking after themselves? And, as usual I’m going to come out and say one of the things I hope many think and I have to be brave enough to verbalise… will they ever find love?

I’m fortunate with Twig, in many ways. Whatever it is that makes him different, I don’t consider it a flaw. Who’s to say his way is wrong? He doesn’t remember yesterday, he doesn’t worry about tomorrow. Every day is an adventure and a happier, more delightful child I have yet to meet. Yes, I’m biased. But strangers have commented on his beautiful smile and that belly laugh. He’s photogenic beyond belief. He likes nothing better than to make me smile and he does so regularly.

I know he’s amazing. But the rest of the world? Suddenly their point of view becomes, whether we like it or not, far more important than it might have been otherwise.

A meltdown in the middle of the supermarket, for example. Now, we’ve all seen it. The harassed mother, trying and failing to pacify a tantrum-thrower in the middle of aisle three, by the crisps. The standard conclusion? ‘Spoiled brat wants crisps.’ With a child like Twig? It might, in fact, be a simple case of the crisps having been laid out differently than the last time we visited.

Joe Public, of course, doesn’t bother to wonder. Most – and I can say it because I used to be one of them – will continue on their way, perhaps with a tut or a roll of eyes, certainly with that infamous smug glow that comes with the thought ‘I’ll be a better parent than that.’

I’ve seriously considered printing Twig a t-shirt that says ‘I’m not badly behaved; I have an ASD.’ Then again, I’ve also considered bashing people with a convenient baguette, just for daring to look at him strangely.

We do the best we can. We adjust our lives to make theirs better. If society wants to continue judging ‘different’ people negatively, let them. I’ll continue bracketing them as short-sighted and stereotyped.


Posted on July 13, 2011, in Life as we know it. Bookmark the permalink. Leave a comment.

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