"We only look forward. We don't look back."
The words, bright and slightly brittle, are those of someone who is determined to survive. They belong to a mother who is being interviewed for a BBC programme. She has just discovered that her younger son, as well as her firstborn, has been diagnosed with autism. I recorded this programme a couple of weeks ago and since then have been preparing myself to watch it. I try to absorb as much as I can on the subject since my daughter was diagnosed with Asperger Syndrome. But it often takes me a while to work myself up to it. I know the latest book or documentary or radio programme will advance my learning. But I also know they will hurt.
This one is no different. I have been watching for about twenty minutes, thinking that it is well put together and not telling me anything new, when just like that, the floor suddenly tilts away. On the screen, a little boy is spinning and peeking while his mother's voice explains that this one of several behaviours that made her think he may be autistic. Watching him makes me catch my breath. He looks exactly like my girl used to when she was little, when we didn't know, when we thought that that cheeky sideways tip of her eyes and the smiling, silent whirling was just one of her eccentricities. We used to laugh at her affectionately, and ask her what it was that she was trying to catch sight of.
The next scene is of the little boy's distress outside school as he tries to explain to his mother why he doesn't want to go. "I don't like the people," he says. "I don't like the noisy." In another scene he tells her: "No-one wants to be my friend." Coming home exhausted from another day of trying to process his surroundings, he kicks off a screaming tantrum and turns his frustration on his mum. I watch in horror at the familiarity of it. But I can't turn it off.
It is hard to explain why seeing something so familiar came as such a shock, or why it was so upsetting. The rush of feeling that hit me said mainly: how could I have forgotten this? How could I have forgotten that helpless feeling of hovering at the edges of the world my daughter inhabits?
Life has got easier recently. We've established routines. She is older, and learning, and so perceptive. When she goes back to school in a week she will finally have support from trained specialists. I have allowed myself to relax and stop wondering what I could have done earlier and what I need to worry about next. Watching this little boy, it all comes back and I wonder at my arrogance.
Grace's world frightens me and fascinates me. It looks so like the place in which I live and yet isn't. Her Elsewhere lies like a water mark over my world, blurring the surface, overlaying my normal with a different shimmer. I don't forget it's there, not really. But sometimes I let myself push it back to the furthest reaches. Like now, when Grace is on holiday with her dad and the house is quiet and seems somehow more solid.
After the programme ends I go to change Grace's bedlinen in preparation for her return, and put away some clothes I have washed for her. Hanging up one of her dresses, an image of her wearing it -- Bambi limbs and tangled hair -- hits me with force and I think suddenly that while I think I know her, what if I still don't? Then I wonder, how much don't I know her? To what extent will she always be Elsewhere? How far behind her do I trail, my voice muffled? When she was little I thought I knew what she was living and I was so, so wrong, so far off. The thought that I might still be so terrifies me. What might she need next that I don't know about and she can't tell me? It is like running an endurance race looking for markers that don't exist and without knowing where the finish line is, or indeed, if there is one.
I tidy her room, neatly arranging its mixture of artwork and books and bits of jewellery and the odd slightly grubby pot of sticky lip gloss alongside toys and dressing up. I make her bed, smoothing out the creases and tucking in the sheets tightly, and I shake out a couple of drops of lavender oil onto her pillow to help her sleep. I think of that woman's voice, brave and slightly askew, and I tell myself: look forward, not back. I have to face the fact that I will never get to the place where Grace is. But if I'm moving forwards, at least, I'm going in the right direction.
If you would like to help me raise funds and awareness of autism, click here:
To watch the BBC programme, "Growing Children" about autism, click here:
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Tuesday, 28 August 2012
Sunday, 12 August 2012
I am in France, on a motorway, under brilliant skies that stretch for miles. There are cornfields and cyprus trees. Everything is lit in summer yellow. Above, a tiny biplane turns exuberant loops and rolls, vanishes momentarily behind perfect cloud puffs, then pops out again with a cheery wing-wave. Peering up at it from the car window, I smile. The bit of me that is constantly fretful has gone quiet.
Sitting on the back seat is Grace. She is smiling and joking with the boys and pleading for her favourite music on the car CD player, then doing jiggy, giggling, shoulder-wiggling dance moves to make her little sister laugh. As the children play, our car arrows down through the countryside, through sunshine and beauty and space to breathe.
A week later I feel as though I'm on that plane, caught in a tailspin. What was supposed to be a warm and relaxed holiday to erase the memories of last year's washout has turned into a downward spiral of tension and argument. Grace protests daily whenever we do anything that deviates from her chosen pastime. In some respects, we are victims of our own success. We chose a popular, high-quality campsite with a swimming pool, in an area guaranteeing good weather. Now all my daughter wants to do is be in that swimming pool. Left to her own devices she would spend hours, all day and all night, dreaming and drifting and diving. It is lovely to watch her do this and to join her in the pool, to hug and splash. But there are six of us altogether, and other people to entertain, and besides, I want to get away from the rows of loungers to the beaches and the cliffs. It turns out, though, that Grace hates the sea this year. She hates the feeling of seaweed under her toes, she hates the suspicion that it might be down there even if she can't see it, and she shudders to think of the sea creatures that may also be lurking. No matter that the sea is the glorious sapphire of a dozen daydreams. She stamps and groans when a beach trip is mooted, cuts eyes at me with viciously irritated expressions that hurt. She throws back her head and wails whenever my husband and I call everyone together for a bike ride, then throughout the ride keeps up a constant stream of complaints and wails of effort as she pedals.
To begin with I keep my temper. I give her lots of notice of approaching activities. I negotiate, persuade and explain. I tell myself that she's doing brilliantly, and take comfort from the smiles and hugs that she dispenses liberally after a day at the pool. She is making friends among the other children at the campsite. This is all wonderful. I tell myself some of the other stuff must just be approaching teenage behaviour. I tell myself that it's all fine, really.
As the days pass, my explanations and negotiations give way to scolding and lectures about how she must improve her tone of voice and curb her rude glares. By this point, Grace is throwing complaints at me when I wake her, when I brush her hair, when I ask her to sit down for a meal, when I do anything at all that removes her from her own train of activities. I feel like the world's biggest spoilsport, bringer of boredom and crap. One day while I am in the middle of telling her off about failing to consider what other people might like to do, Grace puts her fingers in her ears and mouths "shut up shut up shut up shut up" while looking at a spot on the wall just over my shoulder. My scolding turns to shrieks and I send her to her room. She bursts into tears and runs away from me with an expression of heartbreak. Later that night, when I look in to check that she is sleeping, she is serene. There are more freckles on her nose. Her hair has got longer and lighter. I feel terrible.
The next day Grace is wary around me, keeping a wide physical distance with a look as though she expects me to pounce on her at any minute. That day French TV shows an interview with an Olympic athlete who has failed to win a medal. She is heartbroken, and apologises profusely to her country. I've done nothing but prepare for this for years, she says, and at the end it wasn't enough. I just wasn't good enough. This is exactly how I feel at the end of every family holiday. I missed the medals again, despite all my training and preparation. I still can't get it right, I still can't perform under pressure. I still seize up. I let my girl down.
The next day I go running. It is early, so early in the morning as I strike out along a coastal road. On my left the moon hangs lavender-grey. On my right the sun is sending early peachy light across the sea. To begin with I struggle -- it is so early, and there was that red wine last night -- but eventually my breath comes without effort and I am moving and floating a bit and finding a bit of space before I go back to the battle. The process seems so familiar, and yet it is not. I am still learning.
Shockingly soon afterwards I am sitting at the tube station at 5.50 in the morning. It's my first day back at work and I'm fighting off gloom with an edge of panic on finding my holiday is so quickly over and I am back in the role of fettered commuter.
Then Grace's voice floats into my head. She is singing Swimming by Florence and the Machine. We are walking down the sand toward the sea and the sun is blazing on my shoulder blades and I am holding Grace's hand and stroking the freckle on her thumb as we walk. She turns and squints up at me and smiles. I wrap the memory around me and step onto the train, smiling.
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