Tuesday 1 November 2011

Feeling the fear, and doing it anyway

I am walking through central London, along a busy road that in some respects has remained unchanged for hundreds of years. This long, straight thoroughfare has brought millions of people in and out of the capital, to the Inns of Court, to the hospital for the poor, to the City -- or to the gallows at Tyburn. (Now Tyburn marks the start of the A5 which leads among other places to St Albans and another kind of suburban death.)

I digress. I'm in the mood to wander and fret and pick at random thoughts, because the alternative in front of me is too intimidating to confront just yet.

Back to Holborn. The road is an assault on my senses in every way. In my ears, the ringing and drilling of workmen across the way; in my eyes an explosion of blooms in a flower stall in front of me -- crushed purple velvet of langorously regal iris beside perky peach-fringed dahlias; in my nose the acrid exhalation of cigarette smoke from the besuited, marching man in front of me.

I am numb to it all, moving like an automaton on heavy legs, thick with a fear that will overwhelm me if I acknowledge it. I turn my face up to the sky, hoping for a breeze that will bring me round. The street of tall red-brick buildings blurs and shifts, as though invisible stagehands are spinning levers to bring the set behind me whirling past while I stand, frozen, centre stage.

I am rooted to the spot by fright. I have suddenly realised the scale of the tasks I have set myself and I am terrified.

I think of the latest report on my desk at home, by the latest educational psychologist to assess my daughter. Its list of conclusions are wearily familiar -- such experts, these, who queue up to tell me about the child I know inside and out -- but its list of recommendations are new. They spell the next Sisyphean task for me: getting the school to understand them and put them into action and getting the local education authority to understand them and give us help to put them into action. The thought of it makes me gulp with dismay and weariness.

I have to change the system, then, if this one is not working. I look down at the books I am carrying: pages of advice on campaigning and advocating and pressuring. I have spent the day learning how to be an ambassador for my daughter and for others with autism and Asperger's Syndrome. I have watched and listened to a presentation about the government's proposals to overhaul the arrangement that provides special educational support to children who need it. The proposals are in many ways as deeply flawed as the current framework but some suggestions, if thoughtfully transacted, may mean real improvements. The thought of reading through the consultation paper, as I must do if I am to get this right, and of squinting and re-reading and making notes until I understand it; of finding ways to poke and prod and cajole a whole new set of people with the power to change my daughter's life makes my brain feel even thicker and more useless, my legs even more leaden. I am not good enough or sharp enough to do this.

But I must summon energy from somewhere, if only because I have to run 26 miles and raise two thousand pounds, in order to help to fund the organisation that is advising me and others like me on how to get educational support, on how to mobilise my local community, on how to woo my local MP, counsellors, decision-makers and media. I have to alert a wider audience to what life is like when you have autism or Asperger's and the system lets you down and the wider public is indifferent or intolerant. And I am doing this in an economic climate in which I would normally hesitate to ask anyone for two pounds, let alone attempt to amass two thousand.

In sum, I have set myself the following tasks: to rid my daughter's life of pain and uncertainty, to change the law, to run a marathon.

Now the muttering, fluttering agitation within rushes close up and shrieks in my ears and eyes and nose and mouth: "Are you entirely mad? Do you realise what you're attempting to do?"

I reach the mouth of the tube station and stumble down the steps, tired and overwhelmed and frightened by the responsibility and the scale of the undertaking ahead of me. At the entrance to the ticket barriers a man is playing the flute. He has a puff of fair hair, a jaunty tee-shirt and patched, flared jeans. He looks like a children's television presenter from the 1970s but for his melancholic expression. He is playing the Beatles' "Yesterday" and the tune winds down the tunnel after me, clinging to me in woebegone wisps.

Then something happens. I am humming the tune in my head, guiltily enjoying the self-pitying refrain, when another voice inside my head steps forward. It is assertive, primary-coloured, loud in my ears with a nine-year-old girl's bluntness and a forty-year-old's vocabulary. It says: "Bugger that. Yesterday was shit. Let's sort out tomorrow."

So I get on the tube and it whisks me along and along and up and north to my home and my girl and my wonderful, scary, promising, rewarding next challenge.

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