Tuesday, 29 May 2012

Saying Goodbye to the Tooth Fairy

Grace keeps asking me how old I am.

For the last two days, she has checked and rechecked: asking me in passing, in the gloomy shade of the hall; calling to me from the piano room, in between practising her scales; hovering by my arm as I prepare dinner in the kitchen. She asks me thoughtfully, with a frown, and vaguely -- focusing on a spot over my shoulder -- and directly, fixing me with those dappled hazel eyes of hers.

Each time I give her the same answer. "I'm 41, darling." Then I smile, and hope she can't hear that I am forcing my answers from between gritted teeth.

When I was growing up, the subject of my mother's age was verboten. This was partly because it was irrelevant anyway - my mum, an elegant Julie Christie lookalike who was frequently mistaken for my older sister, has always appeared at least ten years younger than her true age. Nonetheless, she viewed the passing of the years as something to be tolerated with melancholic stoicism, rather than celebrated. Birthdays were for expressing love and appreciation with gifts, not for mentioning -- or God forbid -- congratulating one on reaching a particular age. If that number had to be referred to at all it would be in passing, with a wince.

I never really understood, until last year, when I turned 40, and suddenly did. I could write another book on the way it felt to turn 40, but I think on reflection it's much better that I don't. Enough to say that it was a shock, and predictably brought about much contemplation on what time remains ahead, and how best to spend it. The next year passed, and things got done, and I thought I had stopped worrying and learned not to care.

But age is always a preoccupation in a house with children. The progression to a 'big girl' and nursery school for my baby and Grace's transition to double-digit birthdays -- oh, to have her early years again and do them better for her --  and secondary school mean that it's a struggle to remain detached given the constant markers of time passing.

So when my own birthday came around again last weekend I decided to meet it head on. I invited family and friends out for a celebratory dinner. I bought a new frock and indulged in mild hedonism, swapping household chores and sensible eating for socialising and fizzy wine and lazing in the sun listening to music. This is my birthday, I told myself, and it's lovely.

No-one told Grace. She came back from a weekend with her father (who had forgotten) and was mortified to find cards along the mantelpiece and the remains of chocolate cake in the fridge. She held her face in her hands and apologised abjectly. No need, I told her, just take to me to see that new Snow White film with all the lovely and dangerous-looking women in it. (Charlize Theron, four years younger than me, may be reduced to roles where she sucks the life-force from beautiful maidens, but my goodness she's looking great on it.) Grace cheered up.

But still, she keeps guiltily checking, as though because she missed the event she can't quite capture the moment at which my age flipped over by another year. And then she says, brightly: "Congratulations, Mummy!" It feels like being pebble-dashed in chocolate chips: sweet but painful.

Last night when Grace climbed into bed, she found that a tooth she'd placed under her pillow before departing for the weekend was still there. No tooth fairy had come, despite multiple conversations with me about when she/it might arrive in her absence. Grace came to find me with a doleful expression and a fragment of enamel in the palm of her hand. I felt awful. I had been so preoccupied with being not preoccupied about my age - while simultaneously celebrating it gaily and ever-so-nonchalantly - that I had forgotten my daughter's request.

Abruptly I exclaimed: "I'm so sorry!" Grace's eyes narrowed. "What do you mean, you're sorry?" she asked. There was a pause. I could see disappointment warring with curiosity in her face. We talked, and I explained, and she pondered for a while and then asked hopefully if I'd kept all of her teeth. I explained that regretfully, this was not the case. And I said sorry, again, for being too busy (and self-centred, though I added that bit in my head.) She hugged me.

Last night my daughter, again, grew up just a little bit more. And so - not before time - did I.

Tuesday, 15 May 2012

On empty budgets, and "looking disabled"

(I was lucky enough to have the opportunity to discuss the points below regarding the government's proposed changes to the special educational needs system yesterday: on BBC London Radio (I'm about an hour and five minutes in on that link), as well as on BBC TV News and Channel 4.)

So this morning we find that the government wants to make changes to the way we decide which children have special educational needs. And it wants to shift responsibility for providing the additional support these children require.

In a nutshell, the government believes that fewer children should be labelled as having special educational needs -- on the grounds that good teaching and pastoral care can provide what is required for many. The government also believes that parents whose children are actually classified as having special educational needs should be given a personal budget to go and get the support their child needs.

Frankly, anything that makes the system simpler is to be welcomed -- at present it's Kafkaesque.

But the proposed changes make me worry.

They make me worry that the plan to reduce the number of children categorised with special needs will make it even harder for those who do genuinely need help, to get that diagnosis or classification. We waited five years for a diagnosis of autism for my daughter, and now two years after that diagnosis we are still waiting to see whether, on our second attempt, we have successfully gained a statement of educational needs. My ten-year--old daughter is bright and articulate and funny. She also cannot tell the time, use money, or understand social cues. We are often told that our problem is that she doesn't "look disabled."

The proposed changes also make me worry that children who are not classified as having special needs under the new system will not get the support that the government claims they will get by way of better teaching and pastoral care. The provision of good teaching and pastoral care is entirely random in schools as it is, and in many places is getting worse as budget cuts are forced through. Who is going to pay for the good teaching and pastoral care that the government is now promising to children who are pushed out of the category of having special educational needs?

They also make me worry that being handed financial control of their child's SEN help will put an additional burden on parents who have got their hands full dealing with often distressed and difficult children, as well as trying to hold down jobs and meet the needs of the rest of their family, in an environment where disability living allowance is already being cut and employers' patience is worn thin by the demands of business in a difficult financial environment. I worry that in particular this will push even more mothers out of work -- if they haven't already had to do so -- in order to stay at home and organise care and balance the books.

And they make me worry that, when it comes down to it, the basic problem will remain the same. What's the point of handing over a budget to parents when there isn't enough money in it to actually pay for anything and when local resources are so stretched that even if you do have the money you'll have to wait eons until the one or two beleaguered support workers available can make time for your child among their towering caseloads?  So much of the difficulty we've had has come down to money. There isn't enough of it. There aren't enough people -- special advisors, support workers, teachers -- or training programmes -- because the resources have already been so badly cut. And these changes don't speak to any of that.

I talked a bit about this on BBC London Radio this morning. I was due to talk a bit about it on Sky News last night too but at the last minute they rang to say they wanted someone else instead, someone who "looks disabled."

Here we go again.

Sunday, 13 May 2012

You were there all along

All those years, and it turns out we weren't alone after all.

All those months of perplexed unhappiness and that strange, floating feeling of powerlessness. The weeks and days of crying, and holding my daughter when she cried. The hours of railing against the system.

But most of all the waiting. Oh, the waiting.

According to a survey to be published by the National Autistic Society (NAS) later this month, more than a third of families wait at least three years for their child to be diagnosed with autism. Two-thirds wait more than a year. One in 10 people end up paying for assessments privately.

It took five years to get a diagnosis of Asperger's Syndrome for my daughter. Five years from her nursery teacher's first raised eyebrow and questioning comment, to the final affirmation over the phone from an uncomfortable doctor. Five years of knowing that there was something different about her, something that was starting to make her alien and noticeable among her peers, while so-called experts umm-ed and aah-ed.

The NAS survey, cited by the Observer newspaper today, said 61 percent of those surveyed felt relieved to get a diagnosis, and 58 percent said that a diagnosis led to getting more support. 55 percent said the process was long and stressful.

The article also quoted Dr Judy Gould, whose research with Dr Lorna Wing established the concept of a spectrum of autistic conditions. Gould told the newspaper: "I'm not at all surprised by these findings. We're seeing an increasing number of people coming forward, especially women and young girls, who have gone through their lives without a diagnosis and suffered quite badly as a consequence, some developing mental health issues."

For my daughter and me, the length of the wait for a diagnosis was compounded by the eternity we subsequently waited for educational and emotional support. We both suffered mental health issues. My bold, beautiful Amazon  -- tawny eyes, flying hair, quick mind and nimble fingers, who was always writing and drawing and dancing and striking poses -- shrank and faded before me. Bullied at school, she cursed her uselessness, as she saw it. I watched and despaired and berated myself for failure. In what I have since discovered is not an uncommon reaction, I cut off all my hair: a gesture of mourning, and an attempt to assert control where I still could. My daughter kept returning to the fray each day. I took up long-distance running, and made myself strong, and I fought for her.

And I wrote about it. Over the last year this blog saved me, helped me to make sense of our experiences by framing them and sharing them with friends and new readers, many of whom subsequently also became friends -- companions in my grief and frustration and co-celebrants in success and happiness when they came again.

These days, my girl is restored to herself, mostly. She has the help she needs, mostly. Our bruises are fading. My hair is growing again.

I haven't written this blog for several weeks now, wondering what direction to take now the hardest battle (I hope) has been fought and the marathon I trained so long for is completed. I've watched Grace and delighted in her. I've relaxed and celebrated and enjoyed feeling lazy. But I've known throughout that Grace and I are both changed by our experiences and that there's no going back to 'before'.

Then I saw today's article. This month marks the 50th birthday of the National Autistic Society. It is 50 years since a group of parents sat down around a kitchen table and decided to set up a support network for their autistic children. Those parents, and the charity which they established, are also the reason I have never really been alone throughout the worst times. They are the reason I can't just stop agitating for change and greater awareness now. I can no more stop campaigning and fundraising and running than Grace can stop being Grace.

So -- onwards. There is work to do. But the celebrations should continue. My child -- our children -- bring delight and a different perspective that benefits us all. So let us cherish them and champion them and marvel in them.

Happy Birthday, NAS.

Who else wants to join the party?