This week we have been Winchester way visiting sisters and cousins. Charlie being who he is suffers from never wanting to leave his neighbourhood so what was meant to be a holiday turned out to be hard work and for the most part not enjoyable. The older he gets the harder it becomes. I make allowances thinking it’s the cancer treatment he has been through, or the fact that once again after starting his latest batch of chemo tablets he is unable to walk. It must be the frustration I think. But honestly some days I don’t know where autism ends and the boy begins.
During our week away Charlie confined himself to the log cabin and simply couldn’t go out. When we did there was a look of real terror on his face and he went from eerily silent to emotionally bursting, shouting and crying. So we spent our time together, usually on the deck listening to some Charlie Parker, wrapped up in our blankets playing star wars lego in the moonlight looking out at the quiet Hampshire countryside listening for crickets and foxes. And then he was happy and relaxed and laughing and chatting again. And it’s not a million miles away from the hundreds of nights spent together in hospital. Looking out at the Manchester skyline, playing with lego, wrapped in blankets albeit listening to the synthetic cricket like call of the chemo as it sneaks down the line.
It struck me this week that autism is a bit like jazz. Both unpredictable, going places you wouldn’t expect them to go. The screeching discords and battering rhythms taking flight, startling you enough to widen the eyes just when you expect the melody to saunter on. Just like the outbursts and firestorms that are so out of kilter with the rest of your child and come as a shock. Or perhaps jazz is more like the tourette’s of the music world. I can’t decide but it’s definitely on the spectrum as they say.
As we sat side by side on the deck looking at the starscape above us I had another thought about autism. I have to say I spend much of my time mulling it over. As I do cancer but I can’t seem to give cancer a personality the same way as I can autism. I thought how alike they both are in some ways. Both kind of incurable sometimes, maybe able to live with them both, maybe uncomfortably. Both leaving you living your life on the edge. All that imperfection. All that damage wrapped up in the beautiful body and soul of my boy. And I thought that is exactly what the Japanese mean by wabi sabi. Wabi-sabi meaning the art of finding beauty in imperfection and profundity in nature, of accepting the natural cycle of birth, growth, decay, and death. It captures Charlie perfectly. All of our lives really. Wabi-sabi. I dig that about the Japanese.