Wednesday 4 January 2012

Running up that hill

Dealing with the bureaucracy and paperwork associated with my daughter's diagnosis feels like running uphill.

The last two weeks have been a welcome break but the start of term in four days marks the next laborious leg of the journey.

I have meetings with the staff at Grace's school, with her special advisory teachers and with her counsellor, to continue the process of checking, assessing and cajoling as I try to secure the educational and emotional support that my daughter needs.

The short-term goal is simply to ease her days, make her feel better about herself and equip her with the skills to socialise, make friends, and understand those elements of the national curriculum -- maths, reading comprehension -- that elude her. Longer-term the aim is to obtain a so-called 'statement of educational needs': a nod from the local council that will free up extra funding and assign her one-to-one help and a place at the best secondary school in the area. We have to apply for a secondary school place in October. The process of getting a statement takes approximately 6 months in total. Time is ticking and I cannot afford to ease up.

I feel entirely alone in this endeavour. The local authority does not want to 'statement' my daughter -- it costs money. The staff at her school would like to get help, but their priority is the overall performance of the school. The various health specialists are sympathetic and want to assist, but my child is just one of many demands on their too-scarce time. I must scurry around and around them collating information while politely prodding and nodding.

Often the hill feels very steep. Factor in the constant knock-backs, random screw-ups and semi-malevolent obfuscation by local authority officials and it can feel like running up a very steep hill in lashing rain and gale-force winds.

For the last few days of my holiday the thought of what awaits me has been preying on my mind, making me anxious and irritable. Finally, this morning, I decided to do some preparation.

So I went running. Up a very steep hill. In the wind and rain and isolation of a dark grey morning under lowering skies. I am staying at my parents' house just outside Sheffield, on the edges of the Peak District and I selected the worst part of an occasional circuit I run when I'm here: a winding climb that has defeated me on many occasions in the past.

Twenty times I ran up that hill. To begin with I ran fast, full of tension and anger. Then I ran more steadily, grimly repetitive. Then I began to weave and stagger a little bit, and shout aloud my frustration. A few sheep looked up. The wind continued to blow hard against me. Several petrified trees dotted along the brow of the ascent struck attitudes of cowed wintry defeat. I huffed and puffed downhill between each attempt, counting in my head the remaining efforts as I reached the bottom, braced and once again flung myself back up the way I'd come. By the end I was almost hysterical, giggling inside my laced-tight hood at the sight I must have presented and listening to the rasp of my sleeves against my sides as I tried to power myself along using my arms as pistons.

After forty-five minutes I had achieved my goal and taken the first steps towards being mentally and physically stronger for the task that awaits me when I take Grace back to school on Monday morning. I had also officially started my training for the London Marathon on April 22, which I am running on behalf of my daughter and the National Autistic Society.

And I also remembered that this road is a long one and there will always be new hills in front of me. The trick is to use them to make me stronger. And not to think about them too much. Sometimes you just have to keep putting one foot in front of the other.

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