Tuesday, 28 August 2012

Finding Elsewhere

"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:

If you would like to read more about our story, click here: 

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