You Keep Doing Your Thing, We'll Keep Doing Ours

Question: what's the worst part about going for a run in the pouring rain?

Answer: the first five minutes. Then the next five, then the next ...

The streets are deserted, the sky prematurely black. The water slashes through the air and arrows into the ground at my feet. Orange pools of precipitation are illuminated at regular intervals by the streetlamps that line the avenue down which I am running. It feels more like November than May. 

I am moving fast, pumping my arms and driving my toes down, sprinting. My heart is thumping. My breath sounds in hard, deliberate pants as I work to keep everything in rhythm and maintain this speed. I have turned my music up so loud that I can practically hear it in the fillings of my back teeth.

I am here again, running on rage and desperation and because at times like this it's the thing that I do.

This time, this run, the picture in my head is again Grace's face.

This time it's her big eyes seeking mine in my bedroom mirror as I stand behind her and brush out her beautiful hair after her bath. The air is warm from the hairdryer and scented with her shampoo.

"Mummy," she says. "Some people in my class used my name like a dirty word today."

Goddamn it, I think. Are we still not past this? Does it still, always and despite the rest, have to come back to this?

Grace is having a great week. This is a surprise, frankly, because she is sitting her SATS tests this week. Every day she goes in and sits with her teaching assistant in a quiet room and works her way through the examination papers. Some are straightforward for her, and it's simply a question of keeping her attention focused. Some, like the maths papers she is sitting today, might as well be in Japanese. But she is going in every day smiling and holding herself together and ready to do her best.

Evenings too, when I had been expecting her to burst out of her tight wrapping, have been lovely. Last night Grace and her sister giggled their way through a Wallace and Gromit film - Grace reading every plasticine expression accurately and turning laughing eyes to me to share the moment while Betty guffawed into a biscuit at the other end of the sofa. 

Grace is doing so well. I had been thinking about a happy blog!

Instead I am running and the details of the latest niggling nastiness go around my head as I run. I hear again the snide tones she mimicked in recounting what was said. It is so little and yet so much to hear your own name turned into a thing of contempt. I fume to think of the small-hearted people using so ill the beautiful name that I gave my daughter.

I turn off the avenue and turn down a hill, through a park and onto a footpath into the woods. The trees curl over me, the mulchy turf springs underfoot. Everything is everywhere shades of green. This is how I imagine it must be to surf right through the barrel of a wave, with the outside light turning everything to shades of jade and emerald. I am soaking wet and yet entirely calm: I feel as though I am encased in a glass bottle. The music in my ears has receded to background noise.

The peace washes over me and I think: it's ok, we know what to do and we'll just keep on doing it. Grace has talked things through with me and tomorrow she will go forward again with courage and calm determination. Tomorrow I will keep running and I will raise money and raise awareness and write and talk and shout when I must.

So we'll all go on. Grace and I and our family are pretty happy, actually. As for those people who still seem incapable of summoning any sensitivity or acceptance, we will accept them instead.

As I run around the final corner and arrive once again at the gate of my house, looking forward to going inside and drying off and seeing Grace, I speak to those people in my head.

You go on doing what you do, I tell them. We'll keep on doing what we do. The thing that we do makes life better for everyone. What about yours?


I will be running the Royal Parks half-marathon again in October to raise money for the National Autistic Society. If you would like to know more, please click here

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.

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

And finally, back to the running

Oh, the relief of giving up.

The relief of backing out, hands in the air, and saying: "Nope, not me. Can't do it."

Don't frown. It's seriously underrated.

I am an enthusiastic proponent of the 'try, try again' method. But you have to be strong to keep trying.

This week I am not feeling very strong. In fact I am feeling rather Victorian: a bit swoony and teary and outfaced by modern life. (Oh for a lace handkerchief to flutter and a chaise longue upon which to collapse.)

Yesterday it took me two hours to leave the house for a twenty-minute round trip to the post office. Later, it took me three attempts at parking my car in three different parking spaces before I felt confident enough to actually remove the key from the ignition and get out.

Repeatedly admitting that you're not dealing very well with the stuff that other people do without thinking is embarrassing. The whole try, try again thing actually means: so you failed again. Tough. Keep going.

But you can only keep going so long. And then, I think, you have to stop for a bit.

So here's my new mantra: Try, try again. And then give yourself a break and give up for a while.

So I am giving up for a while. I'm not going to try to do everything. I'm not going to try to be everything to everyone who needs me and berate myself for not being brilliant at it all.

I'm going to narrow everything right down to two daily targets: to get out of bed. And to run.

On Monday for the first time in months, I put on my trainers, laced them up with shaky hands, and ran four miles. Actually, it was more of a jog. And I did it on a treadmill in a gym because I felt a bit scared to go running outdoors. But I ran, and within five minutes of starting I was smiling.

On Tuesday I woke up with a welcome, familiar ache in my legs that made me smile again and offset my fear upon waking. I went to the gym again and ran another two miles.

Today I plan to run again. It won't be very far or very fast, but it will be enough.

I will take it one step at a time, until I feel like trying again.

Who wants to run with me?

On trying to tame a cyclone

I can see the imprints of my nails in the palms of my hands.

Scores of small, angry red crescents from where I clenched my fists so hard this evening that I thought I might be sick with the effort of not shouting. (Really, properly, sick, onto the carpet. Just like that: bleugh, here it comes, stand back, whoosh, mind the splatter.)

Ha, if only. 

I can't be sick.

I can't shout. 

Grace is the only one who gets to shout. If I shout, all is lost and the situation tips away from us both and we are shipwrecked.

So Grace shouts and I listen and I clench my fists and I speak quietly through gritted teeth and I feel sick and my heart clatters in my chest so hard that I think sometimes I'm going to have a stroke. 

Grace shouts a lot, these days. She shouts about a lot of things. The things vary from day to day, but the shouting is constant. Mainly, she's shouting about her total inability to process her frustration at things she can't do, or things she doesn't want to do which she finds she must.

Grace doing things she likes and can do is a summer's day. 

Grace confronted by the rest is a cyclone.

I am trying very hard to limit the things she has to do which she doesn't like to do.

I am trying very hard to limit the things she can't do at all.

But I can't get rid of them all.

And, I confess, there are some things I don't want to get rid of because I want her to learn to cope with them. 

If I get rid of everything that annoys or distresses her what chance does she have of living some kind of normal life? 

I have to find a way to help her find a way, I think. I have to help her to see that she cannot blow her top every time she becomes frustrated. I think. I know that she finds this very very hard. But, I think, I have to help her see that there are ways to control her anger and her fear and her sickness at being unable to control every situation in which she finds herself. I fear that otherwise, her autism will define her more and more and drive her further into isolation.

I think.

Won't it?

I look at the red weals on my hands and I wonder what the hell I'm doing and whether I'm still doing it right.

The last two weeks have been very very bad. I am very tired. Grace is very tired. 

Tonight she screamed so hard as she threw herself on the floor that I was frightened our neighbours might think I was hurting her. The effort of not running to her and grabbing her arms and hauling her up and shouting at her to stop made running that bloody marathon last year feel like running for the bus. But I didn't shout. (Go, me. I didn't shout.) I stood in the doorway of another room and I told my daughter what I thought she should do to resolve the situation and then I shut the door and left her to shout it out until she had to think it through for herself.

In a minute I'll go back up to her room and tuck her into bed again and brush her hair off her face, like always, and tell her, like always, when she asks anxiously in the aftermath, like always, that I do still love her and always will and that I'm fine, really.

It's just - my hands hurt.

Here am I floating in my tin can..

Tonight I feel more like an astronaut than a parent.

I feel as though I am floating a million million miles above the scene around me.

There is a white room, and small plastic tables dully reflecting the strip lighting above.

There are coat hooks and gym bags and the artwork of near-adolescents lining the walls.

There are groups of parents - mostly women, with one or two men dotted about - sitting in groups around the tables. They greet one another and nod, and smile. Occasionally they whisper to one another, or laugh gently.

From up here I can see what looks like me down there, sitting to one side at a table that seems slightly set apart. (Or maybe that's just the way it looks from up here in zero-gravity. Excuse me while I adjust my visor. This protective suit can skew my perspective.)

At the front of the room the headteacher - yes, we're back in school, again - talks. She is talking about forthcoming exams. She is calm, assertive and knowledgeable. She is friendly and reassuring. She has done this many times before - both the tests and preparing the parents to prepare their children for the tests - and, frankly, she thinks it's a bit of a waste of time. But it's got to be done, so she's telling us how we'll all do it.

I am wondering how we'll do it, Grace and I.

But more, I am wondering how it must feel to be one of those other parents. What are they thinking, I think, as I float. What is it like in their world, where they arrive, and sit with friends, the parents of their children's friends, and exchange small stresses and questions about this process, while knowing that, basically, their children will be fine.

I pause and adjust my zero-gravity boots, and examine that last thought, while someone asks a question about grammar. No, I think, I'm not exaggerating. Their children will be fine. They won't start screaming when the extra homework starts after half-term. They won't prowl the house for hours at night when they can't get to sleep for worrying about it. They won't wake screaming and cursing on the mornings of the exams. They won't get grades suggesting they are well below the national average. They won't be the ones embarrassed and hurt when the class exchange results (even though this is banned, it will happen, and my daughter will suffer.)

Well, one or two of them might.

When I look closely there are a couple of other parents who smile and say hello to the figure that looks like me. One of them even asks how Grace and I are doing.

When I look closely, I can see that the headteacher is looking at me with a smile and raised eyebrows and a thumbs-up, to gauge how I'm feeling and check that I (and by extension Grace) are feeling ok about this. And now I remember the reassuring email she sent before the meeting to say that my girl would have all the help she needs to help her perform at her best and show what she can do, when she's not worrying.

It's weird up here in this suit. It's sort of nice and sort of not. It leads to far-away thoughts. It makes me think there is more distance than perhaps there might be.

My daughter often feels like she's from another planet and as though she needs help interpreting this one. She does a great job most of the time. She needs me to be in the control room, not bobbing around up here like a space tourist.

I think maybe I need to talk to Ground Control about coming down soon. 

We've got another project to start work on.

Image by NASA, not me

The longest-lasting winter

Call me slow, but it has occurred to me that this blog is an exercise in saying the same thing in a lot of different ways. (If there are readers among you who have already rumbled this, I can only apologise.) But then it has to be, because this is my life with Grace now.

This morning it is homework time. Cue the same weekly argument in different words. Like Groundhog Day, with knobs on. My daughter is already yelling at me and rolling her eyes at my stupidity in Not Getting that she shouldn't have to do it. (Imperial Free Pass? Divine Right?) As her aggression and agitation grows, I feel like doing a Captain Oates - walking out into the snow and never coming back. Or at least not until I can find Punxsutawney Phil to release us from this unrelieved cycle of torment and signal a change in the season.

Parents of other autistic children have told me to give up on Grace's homework on the grounds that it's not worth the stress and distress. On Sunday mornings my daughter now wakes growling and fully-charged, prepared for the weekly torment. There are no preliminary skirmishes any more: she flies at me a shrieking, railing Fury.

I wonder whether her increasing, dismaying, mind-blowingly frustrating recalcitrance is because my clever girl is onto me, and the system. She knows that there is an 'out' under the arrangement that now provides a statement of educational needs for her. She knows that there is an acknowledgement of her areas of difficulty. I wonder whether she is seeking to redraw the terms of our deal - in which I bow out, and shut it all down when it gets too much - in her constant quest for control. I am so frightened that as she grows up, butting more and more against an educational system and social environment that accentuate her differences as the years pass, she is seeking to escape rather than engage.

More and more of my requests these days, whether they relate to homework or not, seem intolerable to her. Increasingly, she finds it hard just to say 'Yes.' Increasingly, she rejects expectations and demands. "I find it really hard to say 'yes' to things I don't want to do, Mummy," she tells me. "It makes me feel all fizzy and sick inside."

So today I ask myself again: why am I still doing this? Why don't I just stop? Grace doesn't understand homework because she doesn't understand working at something to get a better understanding. In her world, you either get something or you don't. She sees her step-brothers bend to their schoolwork and believes they have an innate ability to answer questions on maths and science that she lacks. She thinks I can speak French because I was born to be able to do it. She thinks her father is good at maths for the same reason.

I want her to learn. But more importantly, I want her to learn how to learn. I do not think, yet, that this is beyond her. I'm not ready to give up on my daughter yet. She is capable of doing most of the homework she is set. Even the bits she finds hard, even the bits she boggles over, we can usually address to some extent. I don't want to send her the message that she's incapable, or so different that it's not worth trying any more.

Outside, it's still snowing. It makes me think of the permanent winter of Narnia imposed on the inhabitants of that land by the evil White Witch. It makes me think of the Hans Christian Andersen fairytale of The Snow Queen - which terrified me when I was little - about the boy with the splinter in his eye who is stolen away into a never-changing land of frost and ice from which he can never return.

In the end, I have to give up on the homework for today. The shouting and the distress made it simply ridiculous to continue. Now Grace is in my arms crying. This noise too is immense. As I hold her and kiss her and shush her I wonder how long Grace and I are to spend in this endless pattern. I look outside at winter. I want to walk out into it until it muffles the shrieking. I want to walk out into it until it blocks my ears and eyes, and all I can hear is silence.

Most of all, though, I don't want it to be winter any more. I just want it to be spring.