Friday, 16 March 2012

Limbo

Grace and I are waiting to hear our fate.

For her, the outcome of today's panel meeting at our local authority could mean the difference between two lives. A group of people who we don't know and have never met made a decision today on whether to grant an assessment of Grace's case. If they said yes then we have made vital progress towards a formal agreement to provide extra learning resources, her own learning assistant, and a place at the best secondary school in our area for her. Her world will open up again, her fear of new subjects and social situations diminish.

Or they might have said no, there's no case here.

It puts me in mind of the film Sliding Doors. In one scenario the train doors open and Grace is allowed to walk out into a happy ending. In the other, she is confined to an endless, dreary round of stops and starts and airless confinement, boiling with frustration and sadness at the limitations of her surroundings.

Yesterday I telephoned her case worker to ask how soon today we would have a decision and how soon I could contact him to find it out. Another member of the team picked up and told me that the man I sought was on holiday, and not back until next week. She told me I could look for him again on Monday. I have begun to see this man, another key player in this farce -- who again I have never met -- as the Scarlet Pimpernel, at each call or visit from me flinging himself out of a window or shimmying down a tree, to escape in a coach and four.

So I must wait. I wait for Grace and I wait for myself. Running would allow me to feel some kind of progress: with four weeks until the London Marathon this is peak training time and my fundraising pot for the National Autistic Society brims with generous donations. But I cannot run. The twang of early tendonitis has been supplanted by excruciating back pain that came on during last week's long run. I completed 17 of the 18 miles demanded by my schedule, the last two of which I ran bent and crablike, tears of frustration and fright on my face as every step with my right leg sent knives of agony through me. My trainer banned me from all further exercise until I had a formal diagnosis.

Two days ago I went to see osteopath Gavin Burt. I had not slept for almost a week, kept awake by the knives and the fear of finding out that I could no longer run. (There is one thing worse than running the London Marathon, I have discovered, and it is not running the London Marathon.) Gavin, an erect, compact man with a firm handshake, greeted me, assessed me, then lay me down and mapped me with his practitioner's fingers. He diagnosed sacroiliac joint dysfunction - the bit of my tail bone that connects to my pelvis was askew and jammed tight on the right hand side. The good news: he could fix it, in around four weeks. The bad news: I must not run until he had fixed it. I lay on the treatment table leaking more tears into my hair as I looked at the ceiling and took in the weight of his diagnosis. The next time I can attempt double-digit mileage will be on April 22.

I want to fret and fidget and panic. I want to talk, endlessly, about how frightened I am and what will we do if they won't assess Grace and how will I look after her and how can I find a good school for her and how will I do the marathon and what if I have to walk it and what if I have to crawl?

Instead I breathe steadily. In through the nose, out through the mouth. Running has taught me this. If you panic on tough terrain you are done for. Instead I put my shoulders back and I tense down to the core of me, feeling the strength I have built up these past weeks, and I keep waiting, gradually, minute by minute, until I find I can endure.

Grace Under Pressure: going the distance as an Asperger's mum, will be published by Piatkus in October 2012

3 comments:

  1. Ah, Sophie, a horrid double whammy for you. Remember, there is no shame in walking some/all of the 26.2 miles. Your courage and determination will get you round and everyone is cheering you on. Love to you and Gracie xx

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  2. Hi Sophie,
    Watched you this morning on GMTV...and I really enjoyed reading your blog! We share the same story! I always knew that my little boy was different but never been able to find out what it was ! Knocked at so many doors but as he was doing well at school ( has always been part of Gifted & Talented) nobody cared. A year ago, as we changed area and school, his teacher offered me to see the SENCO and speak about the Aspereger's assessment. Many ups and downs but eventually, he has been diagnosed with Aspergers a couple of months ago. He is 11 and goes to secondary school since September. Do you think that if he had been diagnosed earlier I could have had my first choice school?I don't like the school he goes to and neither does he ( we had a few incidents that involved not only students but also teachers such as a teacher telling him to shut up or to stop being a snitch when he was being wacked from behind) so do you really think that the diagnostic would help us get him to a better school?

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  3. Hello -- thanks for your nice comment! I'm no expert but might it be worth talking to his teacher about whether he would benefit from having a statement of educational needs? A diagnosis alone won't get you a different school place but if you can demonstrate that his needs are not being met you may be able to find a better placement. It's a long haul to get a statement though. Is there specific help that your son needs in the classroom that he's not receiving? It sounds as though his teachers have little understanding of autism and aspergers. Have you talked to the headteacher about getting some training and information for the teachers who spoke to him in this way? The NAS website is excellent too for educational advice. Good luck.

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