Monday, 15 April 2013

On running, and remembering, and rebooting

It's Monday morning, and I am running.

I'm not at all sure how this happened.

To my left is the brook, swollen by recent rain. To my right, dense undergrowth thick with green spring shoots. I look down - those appear to be my feet, in my beloved Mizunos, going at a decent pace along the gritty pathway. I look up, and the spring breeze is fresh on my face.

Conclusion: I am definitely running. And more - I have made it outside.

This is a big deal. I am upright and striding, after spending much of the last five weeks with my head down and my arms wrapped around my knees, enduring another bad dip into depression. I have slept little, cried more, bored those around me even more still. (Not that they ever let on.) I have been under the weather with a dozen niggling ailments: unwell, tired and thoroughly fed up. I have not been good company, though I have switched on smiles as often as I could manage. I have made it to the gym a few times, telling myself - look, I am still running - as I padded listlessly along on the steady soft turn of the treadmill, barely breaking a sweat, and barely making it to three miles.

Now, however, I am turning out past the golf course and running up towards the meadows. This is an old favourite route that I have not run for more than a year. Up ahead is a nasty hill, swiftly followed by a gleeful skip down the other side for half a mile, past grazing cattle and ancient hawthorns. The sun disappears behind a cloud, briefly, then glides out again. A gust of wind pushes me along encouragingly. Alongside me, my shadow keeps time, arms and ponytail swinging.

I try to breathe evenly and brace for the incline which is coming, while my mind rewinds this morning's events.

It's the start of term, of course, so there have been tears, of course, and shouting, of course, as Grace transitions into a different routine. Just thinking of it makes my chest constrict. I feel again that downward lurch of sadness in my stomach that now marks the start of every day for me, now as natural and expected as the blink and the yawn and the switching off of my alarm. But I have no time to wallow - here comes the hill, and it hurts. I am gasping, running on my tip-toes in an effort to keep moving, expecting to be overtaken by snails and pensioners at any moment. Finally, I drag myself to the top and make my way through the gate and there is the lovely path back down.

I've covered three miles and my heart is pounding. I am so unfit. My running kit is a lot tighter than I'd like it to be. I suspect my face is a lot redder than I'd like it to be. But I am still moving and as I progress my mind turns over what happened this morning and I realise that the shouting came from me, and the pain of the morning came from me. Grace did not want to wake, or get out of bed, or get dressed. But - hopping through mud now, skipping side to side past the deepest puddles and splashing through the shallowest - I can see more clearly what happened. The physical exertion is freeing me from my anxiety and doomy interpretation, and a light goes on in my head. Grace's distress came from simply having to get up, I realise, not from the prospect of going to school. If I had been more patient and perceptive, I would have seen this, and recognised the victory. Instead, my resources at zero, I lost my temper when I discovered her still under her duvet on the sixth attempt of rousing her, and as she wailed, so did I.

I am approaching four miles now, and I am shattered. This is not a gentle run, it's a cross-country hike. I am now splashing through a stream, ankles scratched by brambles. My face feels like a beacon that could light up all the surrounding countryside in the dark. There has been no respite from the run downhill given the mud, and now here comes the next uphill: a real stinker that goes on for ages and provides no cover, so my stumbling progress is on display for all local dog walkers to see while the sparseness of trees and bushes lets the wind get at me, and attempt to buffet me back down the way I came.

And yet, I am smiling. I feel absolutely fantastic, while simultaneously done for. I can feel my energy bank filling up again even as the muscles in my backside groan and burn. (Welcome to the contradiction that is running folks: the more you do, the more tired you get, the fitter you become, the higher your energy levels.) I feel full of purpose and clarity. How could I have left it this long to get back out here? I have no idea, other than that I could simply no longer ignore the constant pulse of the message: just do it.

I make it back home after five miles. It was a very slow five miles. It was a very painful five miles. I think of the twenty-one extra miles that I ran almost exactly a year ago and I wonder who on earth that was. It was a wonderful five miles. It was the start of very many more. I'm already planning tomorrow's route. I won't let this lapse happen again.

And now, I can't wait to go and get Grace from school and hear about her day. For some reason, I think she will have had a good one. Onwards.

Tuesday, 2 April 2013

It's World Autism Awareness Day. So what are we supposed to be doing?

Today you will hear a lot about autism. The word will be underlined, emphasised, hashtagged. People will talk about what it means and how it presents. The blogging community will be busy. Stories will be exchanged. Calls for action will echo around the world and the web.

But as I sit here at the start of this day to think about how I can contribute, I find myself rather trying to define awareness and wondering what is expected of me in that regard. I am wondering how aware I really am of something that I first learned about only three years ago when my daughter was diagnosed.

What is awareness? Is it to know that something exists? Or is it to understand what that something is? Clearly, there's a big difference. I'm aware of particle physics but if you asked me to explain its application in every day life, or to build the next Large Hadron Collider, I'd have to admit to significant gaps in my understanding that prevent me from doing either of those things.

The definition of autism according to the UK's National Autistic Society is a lifelong developmental disability that affects how a person communicates with, and relates to, other people. It also affects how they make sense of the world around them. It is a spectrum condition, which means that it affects people in difference ways.

I am still learning how autism affects my daughter. Today, this year, I think I am better aware than I was on this day last year. On this day last year, I knew a bit more than I did the previous year. I hope that on this day next year I'll have a better understanding still.

My daughter knows what autism is because she lives with it every day. Every day she teaches me a bit more about it. As a result I can now anticipate some of her needs and support her. Other things still catch me by surprise. My ability to be aware fluctuates with my energy levels. Being aware of autism also means being aware of my own resources to deal with it. There are days when I struggle. There are days when guilt and worry dominate. There are also days when pride and delight in my wonderful, differently-wired child persuade me that life is good after all.

To be honest, I'm not sure whether I'll ever really be completely aware of what autism means. I can't get inside my daughter's life, no matter how hard I try. I can only be aware of what the outside looks like.

But here's the thing: it's not just about awareness. Awareness is just something we say to get you started. It's also about understanding and sometimes that means using your imagination. So I keep trying to imagine what the inside experience of autism is. Even though it's the hardest thing I'll ever have to do, and a lot more daunting than particle physics. Building a Large Hadron Collider from scratch would be easier.

And along the way I find that there's a third phase after awareness and understanding. There's acceptance. I have accepted autism. I have accepted my daughter's differences. It's a process I have to work on every day. Today is just another day, but no less important for that.

So here's to awareness and understanding and acceptance. And to love, which makes it all possible. Happy day, Gracie darling. Thank you for your patience and your understanding of my lack of understanding. I love you.

Piatkus are giving away five copies of my book, Grace Under Pressure: Going the distance as an Asperger's Mum, to celebrate World Autism Awareness Day. To enter the competition, click here