Sunday, April 17, 2011

Moving against the tide...

There was a time in this autism life, where I would read everything I could get my eyes near, trying to see whether I recognised Billy in the words.

I played an odd game of roulette, ruling autism in or out (well, he doesn't line things up... or man, he does do that weird thing with his eyes when he's walking beside a fence...) as I read. I'd sigh with relief when I saw that other families were under more stress than we were, or I'd jealously read stories of kids who flew under the radar and didn't need to disclose anything resembling their diagnosis. My reading habits are, in all honesty, where the rollercoaster metaphor came from. In a flutter of the fingers, I'd go from 'Wheeeee' to 'Whooooaaaaa'.

With the passage of time, and the colourful experiences that it has brought, I've learned that autism isn't an either/or. It's unique. It's not so much unpredictable as a-predictable.

So, I thought it was worth a post about how Billy surprises us with his very unautistic resilience and flexibility.

We've just moved house. Moving house is hateful, confronting, disgusting, exhausting and unpleasant. And that's on the good days. There will, for sure, be some cathartic purposeful re-birth sometime soon. In the meantime, food tastes bad, my clothes either smell or are AWOL, and the dog can get under the fence.

We have opted for location (suburb we like, good schools with track record of ASD-friendliness, close to friends from previous school, awesome dog parks for hairy son who is covered in mud after discovering a feisty rainy day friend). Location also includes walking distance to some of Billy's favourite shops, which has already become a fab motivator (eat this salad and you can get a new gazelle at the toy shop style).

What has amazed us about the change of location is that it clarifies, challenges and isolates the specifics of Billy's style of autism.

The challenges: he takes change like a pro. No problem in the world. As long as Mummy and Daddy are here, all is good. He was a bit worried that his toys had to stay at the old house, but once they came, he was good. He has a playroom/sunroom here, and a big backyard and a secret bathroom in a cupboard (strange, idiosyncratic rental property... more of that later). After all that 2am reading, I am constantly amazed at Billy's ability to weather change. He travels well, he tries new things, he is brave and curious.

The isolation: we are no longer at the top of a cul-de-sac here. I totally get how, in real-estate terms, the top of a cul-de-sac is good. But in autism terms, the cul-de-sac concentrates kid noise, traffic turning noise and an unfortunate unsocialised dog directly opposite who barked consistently when anyone (yes, anyone) came close to his house. Billy's life has been ruled by that dog, and it's only now we understand how. In this new house, Billy is comfortable alone at the other end of the house. In the old house, we used to hear regular calls, 'Where are you, Daddy?' and 'Mummy, I need you!' Billy was, more often than not, in a state of noise-induced panic. Now, he is comfortably engaged with his toys, and we can sit (like grown ups, with a glass of something grown up) in another room and... chat. It's taken a day or so to realise that Billy is relaxing without the constant threat of barking erupting uncontrollably from somewhere in his eyeline.

The clarification related to this move is much more sobering.

Today we met the new neighbours - a beautiful family with a girl slightly older than Billy and twin boys slightly younger than Billy. The boys were very keen, in their enthusiastic little boy way, to meet Billy. We convinced him to say hello. He came outside slowly, stood as far away as he could from the boys, twisted his lovely body into a pretzel shape, said, 'I'm here!' and disappeared inside. The twins, understandably, were a little disconcerted. It reminds us that our little man is an unusual member of the league of children. It's a confronting reminder given that this is the neighbourhood where Billy must make a re-entry into formal schooling. These are his peers. Their questioning stares help us prepare for our re-entry into the 'real world' - the place where, no matter how atypical it is, autism will define Billy.

In this month of autism awareness, I am aware how lucky we are. I see how many gifts our boy has been given. I see how much he trusts and loves us. I see how he is able to articulate his feelings and thoughts. I know he is happy.

As we step from our autism cave (old house), where we found therapy and diet and supplements and visuals, it feels a little like a new day.

The autism didn't go away. He didn't grow out of it. He hasn't been healed or recovered. And it's OK. It's really OK.

We have a charming boy. We have a loving boy. We have a funny boy. We have a deeply intelligent boy. We have a life, together, that's pointed (vaguely) towards the future.

And we have a serious damp problem in our temporary rental home. For a woman with deep control issues, and a learned fear of chemicals of any kind... it's not good.

But for a boy with less stress in his life, everything's gold. Wrapped in cardboard and packing tape until we unpack it again, but gold nonetheless.


Lizbeth said...

I'm glad you're settling in and getting comfortable and not living next to a dog that barks all the time---that is gold indeed.

Di said...

Oh, I really like your Billy :) So love that he is fine with change - lucky lucky you. That boy of yours is going to go far!

PS: Hope you find your whatsits!! ;)