Monday, 24 September 2012

Sometimes you don't need words

I've used thousands of words in this blog.

Some days they have rushed out of me in a storm of rage. Other days they have swirled and bobbed like boats on the current of my thoughts. Some days they trickled as I cried. At other times they fell haphazardly as I struggled to make sense of the latest event to occur. There have been long gaps when no words would come to me at all.

Today I am full of words - fizzing and buzzing and quivering with them. But none of them could possibly do justice to how I feel. So I think actually this time I'm not going to use very many.

Today is the start of Grace's third week of the new school term: her first term since we got her statement of educational needs. In the two and a bit weeks since the new academic year started she has had her own learning assistant by her side in class and in the playground. When I pick her up these days she smiles at me and says: "Mummy, I had a great day."

My daughter has Asperger's Syndrome, with a side-order of ADHD and dyscalculia. My daughter also has a gift for drawing, for words and for music. For a long time these aspects of her life sat in parallel. We struggled to see a way ahead in which she could learn the things she did not know, and hone the skills that make her unique. School was a battleground and a misery.

But today, Grace brought a trophy home. She was awarded it in recognition of her achievements in maths in particular. Those who know the agonising murk of dyscalculia will realise how much this means. For everyone else: I could use hundreds of words to tell you how much this means. But for today, I'll just show you.

I always knew my daughter was a star. Today, she knows it too.

To help me raise awareness of autism and support the work of the National Autistic Society, click here

To read more about our story, click here

Tuesday, 18 September 2012

Gove's school reforms are a disaster for my girl

I am reading in the newspaper about the government's plans to scrap GCSE exams and an appalled sick feeling is rising within me.

It's a very familiar feeling. It's one I have lived with for the last few years as my daughter navigated the school system. It's a feeling I hoped had been vanquished by our success in finally getting her the extra help she needed. But by the time I get to the end of the article I am shaking with dismay and anger. A huge injustice has just been done to my daughter. The sickness is well and truly back.

The government has decided that coursework is out and cramming is in. Instead of GCSEs we are to have an English baccalaureate, with the emphasis on end-of-term exams, to end "dumbing down", says the education secretary Michael Gove. The new system, he says, will prepare young people for a world of university or work and give employers confidence in students' abilities.

I have spent every waking hour for the last two years fighting for my daughter to have the support she needs in order to be able to learn, so that aged 18 she can go out into the world and make her own way as a productive member of society with the best qualifications she can acquire. After two years of meetings and letters and late nights and stress and tears and panel hearings and paperwork, the local council granted us a statement of educational needs that gave us the resources to allow my daughter to learn in a mainstream school, alongside the rest of her class, a teaching assistant by her side.

Now, just like that, after that endless, endless effort, the government has disenfranchised her again.

She is clever, my girl. She loves words and art and history and is curious about the world. She also has Asperger's Syndrome, which means that she struggles with abstract concepts. She also struggles to concentrate on anything that doesn't fit with her colourful but narrow circle of interests. Timed tests are a torture for her: she panics and flaps and tells herself she is stupid and works herself into such a state that her mind goes blank. By contrast, the long-term projects she produces are things of beauty and learning. She enjoys them and immerses herself calmly in the subject. She learns, and remembers.

When I think of her having to prepare for the kind of mammoth, end-of-term exams that I did, my blood runs cold.

My abiding memory of preparing for exams at school is pacing. Back and forth, in my bedroom, chanting facts and quotes, checking and re-checking my revision notes, stuffing myself to bursting point with scholarly nutrition in order to regurgitate it all on paper in the pursuit of straight 'A's.

I was lucky: most of it I understood. A lot of it I really loved. Some of it I barely comprehended but knew which bits I needed to look like I knew.

I was also lucky because I was not fazed by the knowledge that I had precisely three hours to demonstrate my brilliance: three hours of fast, neatly clever calm condensing.

I was not a child with special educational needs.

Gove's new system puts me in mind of Mr Feeder's school in Charles Dicken's Dombey and Son, where pupils are ground down by a primitive system of education that simply forces facts into them. In one classroom scene, "two, who grasped their foreheads convulsively, were engaged in solving mathematical problems; one with his face like a dirty window from much crying, was endeavouring to flounder through a hopeless number of lines before dinner; and one sat looking at his task in stony stupefaction and despair - which it seemed had been his condition ever since breakfast time." Hour after hour, Dickens writes, "the studies went round like a mighty wheel, and the young gentlemen were always stretched upon it."

Gove would doubtless tut at my comparison. He has already chastised me and parents like me for our negative response to his plan. "Some will argue that more rigorous qualifications...will inevitably lead to more students failing. But we believe that fatalism is indicative of a dated mind-set; one that believes in a distribution of abilities so fixed that great teaching can do little to change them," he said. Where schools believe that children will struggle with the test, they can defer them until they are 17 or 18, presumably to stuff more of that great teaching inside them.

There's just one problem with this, Mr Gove. I'm sure great teaching can help my daughter to learn huge amounts, Mr Gove. But we're not talking about the teaching, are we? We're talking about the examination process. And regardless of how great the teaching, my daughter will fail if she has to undergo this process. And we can't defer until she's ready to take your test. My daughter will still have Aspergers when she's 17. She'll still be autistic when she's 18. And if this plan goes ahead, she will have been roundly failed by you when she's 19.

Tuesday, 11 September 2012

On falling down a hole, and having a World Wide Weep

I've not been running for ages.

I was running, and then I fell down a hole. It's hard to run when you're down a hole. It's hard to do anything when you're down a hole. Generally speaking, no-one likes to be down a hole. (My baby girl, recently told the nursery rhyme of the old man who fell off his horse into a ditch, looked at me with alarm and said: "I don't like ditches. He should have gone on his scooter instead. On the pavement.")

Would that I was in a ditch, shallow enough to clamber out. The hole I'm in has high walls and no hand-holds. Sometimes I look up and see stars glimmer late at night. Much of the time it's just black.

My comfort, threadbare and patched thing that it is, is that other people know this hole too. To some of them it's not a hole, but a black dog that follows them around and haunts their footsteps. Others just call it more bluntly: depression.

Here are some of the things you pick up fast when you're depressed, or prone to regular bouts of depression: don't drink or smoke (it makes the hole deeper and darker), do long, tiring physical exercise  (pushing your body makes your mind go quiet - just so long as you can get out of the front door), do learn how to smile when you don't feel like it (but be aware that often when you think you're smiling you're just looking grim and weird and making people worried.) Send texts to friends and family instead of phoning or taking phone calls so you don't have to fake a smiley voice too. Know that getting out of bed some days is a victory; that on other days staying there is the only course of action.

Oh, listen to me go on. Oversharing for the common good, or just having a World Wide Weep? A nagging doubt while I'm down in this hole is that I'm just being a bit pathetic. As Leonard Cohen said (you get to know the big names down here: the godfathers and godmothers of gloom who felt it all before you) "The term clinical depression finds its way into too many conversations these days. One has a sense that a catastrophe has occurred in the psychic landscape." So is this just a modern-day malaise? As I sit here, in my family home, amid my family comforts, with the late Indian summer sun shining and the photographs of those I love and who love me looking down on me, as I sit here thinking "poor, poor me" - should I just tell myself how lucky I am to have the time to think and worry?

I don't feel lucky. I feel like I've had flu for weeks: an illness that initially generated concern and legitimate reason to take it easy but that now is just getting really boring. I'm bored of crying randomly at weird triggers (folding my children's clothes, unable to find something I need on a supermarket shelf. Anyone?) I'm bored of feeling utterly outfaced by the smallest tasks: reduced to frozen confusion by the decision whether to do the washing-up or the ironing first. I'm bored of the constant, sick fear that something is badly wrong. I'm bored of being so boring and self-obsessed: I agonise and I fear I antagonise, even as my ever-patient family nod kindly and hug me.

I need to get out of this hole. I need to get out of the house. I need to get out of the house and run. I need to run with no music and listen to my body instead of the mutterings of my mind. But I'm apprehensive about leaving the house. These days every sortie is accompanied by twisting nausea in my stomach. Even on the school run, a drive of ten minutes in total, I have to grip the steering wheel tightly to suppress the tremble in my hands. (Having the shakes is a new phenomenon this time around. I'm hoping it doesn't stick.)

But this is not a sob story. (Oh - funny! Hoho. I mean: it's just how it is, this story about sobbing.)

So I need to go and find my running shoes.

I might even put them on.

If you would like to help me raise funds and awareness of autism, click here

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