Monday, 17 December 2012

La vie en rose

Grace is leaning out of the window, her dark hair tumbled down her back. Outside, under blue skies, a small street sweeper trundles past along the gutters, casting rainbows in droplets of water and causing the streets to glitter in the morning sun. One of the net curtains catches and billows in a slight breeze.

I gaze past my daughter at a view I have loved for years: the glorious lofty towers and buttresses of Notre Dame. Our room, in this lopsided, timbered hotel on the street where I used to live, pushes up against a jumble of buildings on the quayside in front of the cathedral, allowing us to look directly out at the lolling gargoyles and stained glass above. It feels as though we are pressing our noses against God's windows.

"Another day in Paradise," Grace sighs, and turns to me. "When can we go in?"

"As soon as you're ready," I tell her, and she huffs, and closes the window with regret, and prepares herself for the boringly stressful process of dressing and brushing her hair. To divert her as I coax her into jeans and shirt, I put on MTV, where a bunch of Europoppers are leaping around singing an instantly catchy tune. The chorus goes: "I wanna travel the world, I wanna travel the world, I wanna travel the world with you." Grace grins at me and we start singing along.

My daughter is about to turn eleven and I have brought her to my favourite place in the world to celebrate and to show her all the things I love about this city, which I left the year before I fell pregnant with her. I am so full of emotions - love, pride, happiness, nostalgia, regret - that I fear I am in danger of spontaneous combustion, so I hustle us both along and out of the room as fast as I can. We clatter down the winding staircase - down and round and down and round (not for nothing do we get that view: later we will have to push each other up these same stairs to get to our fourth floor chamber) - giggling at the ancient paintings on show. There are lots of boobs and bums. "Welcome to Paris," I tell her.

It's still so early that we are able to walk straight into the cathedral. We light candles in one of the alcoves and whisper together, then I walk her down the right-hand transept and turn her by her shoulders and lift her chin to see the light falling through the rose window. She gasps and her beautiful face is bathed in pink and blue dapples.

Later, we walk to the Louvre. Grace, asked what she wants to do most of all, wants to see the Mona Lisa. As we walk I point out the Hotel Dieu and tell her about the history of the hospital known as 'God's Hotel', translate street signs and plaques to the intellectual dead that are as common in this city as litter bins. I draw her attention to the art nouveau metro entrance in winding iron and beautiful green enamel. We cross the bridge and there is the Hotel de Ville. Grace asks where the Eiffel Tower is, and I point it out on our left, peeping over the top of the fairytale turrets of the Palais de Justice. She claps her hands and jumps, and I wince. I know that secretly she really wants to climb the Eiffel Tower and that she's not asking me because she knows I don't (can't) do heights. I can't do heights and I can't (don't) ice skate. Outside the Hotel de Ville is a pretty, Christmassy ice rink. She looks and sighs. We walk on.

Arriving at the Louvre, we pass under the glass pyramid - Grace goggling at the panache of a people that would put this edifice of glass and steel in the middle of a 16th century courtyard and make it look like the icing on the cake - and pay for a guided tour. We are asked to wait briefly in an ante room for our guide to join us, and so meet the rest of our group: two young Australian students and three chatty Americans, one of whom went up the Eiffel Tower the night before and tells us with shiny-cheeked enthusiasm every detail, including how, actually, she's scared of heights and wasn't worried by the experience at all and how in fact it was the most beyond marvellous thing. Ever. Grace turns mute puppy-dog eyes at me. I switch on a big fake smile. At that point - thank God, I knew lighting that candle would come in handy - the tour guide arrives. She is a smartly-dressed woman of a certain age, with excellent bearing and immaculate make-up and sensible shoes. She tells us all to switch on our headsets so that we will be able to hear her over the hubbub of the rest of the museum crowds. One of the jolly Americans says that his headset is broken. Of course it's not, the guide tells him crisply. And indeed, it's not.

We start with the foundations of the ancient fortress that the Louvre was. The guide talks of stonecutters and moats. The jolly American asks: Didn't people just swim? The guide looks at him and says: No. The rest of us quail, but he continues: How deep was it? Couldn't they just have swum it? The guide looks at him again and says: Boiling oil. Soldiers. He falls silent. Grace is drifting, bored, dreaming no doubt of the Eiffel Tower.

But the next room is Greek and Roman antiquity and there is the Venus de Milo and Grace comes alive. Then there is Winged Victory and the Apollo Gallery and the Raft of the Medusa and The Odalisque and she is listening hard and sketching madly and pink-cheeked with happiness and excitement. As we walk into the next room the guide announces that we will next see the Mona Lisa and Grace is sweaty-palmed with anticipation. We see a huge crowd bulging and bobbing impatiently around a barrier three feet from a glass case behind which in a gilded frame a brown-haired woman smiles faintly at us all. Beside me a girl snaps her gum in disappointment and says, "Is that it?" When I look around for Grace she is already gone, has wriggled through and under and got to the very front of the crowd, where she is gazing in wonder at the painting. Her hair is all mussed up and her coat is askew. I look at her adoring this piece of art the way other eleven year olds adore One Direction and I love her so much, so hotly and suddenly and fiercely that I have to blink away tears and tune in to the tour guide telling the cheerful Americans about the radical use of triangulation by da Vinci and eventually I compose myself.

That afternoon we walk up the Champs Elysees to see the lights and the shops and the Arc de Triomphe. We pass endless stalls of Christmas tat, a winter 'fayre' which makes me laugh to see it here in this beautiful place, like Simone Signoret wearing Primark, and I have to tug Grace past because she's complaining now that her legs hurt and that she's tired. But then we come to Sephora and to my amazement, my Aspergers girl, who hates noise and bright lights and smelly smells, dives in and loves it. Her artist's eye loves the shelves of colours and textiles. She coos over vintage perfume bottles. She squirts and sniffs endless perfumes and makes rolling-eyed gag-faces to make me laugh at the more outlandish ones. Before we leave, I buy her her very own: Anais Anais. She holds it reverently and tells me she loves me.

There is more and more and more. It is a wonderful weekend. We go to the Musee D'Orsay on Sunday and Grace twirls with abandon through the gilded ballroom. We have lunch in a cafe, where the woman beside us leans over to tell me, "Your daughter is so beautiful I can't stop looking at her." We hold hands all day, every day. Grace walks on my left. It has been so long since I just held her hand all day. I have forgotten how she leans and pulls down slightly on my hand, how she has done this since a little girl. By the time we go home she has left me with an ache down my left shoulder and arm, across the top of my chest. She has, literally, tugged on my heartstrings for the last two days.

When she goes to bed, I miss her.

Saturday, 24 November 2012

Hello, I'm Sophie, and I'm a bad parent

I used to think that being a parent was about knowing what was best. I'm your Mum, I know what's good for you, do as you're told. Eat your greens, brush your teeth, go to bed early. Say please and thank you.

In practice, knowing what is best actually means issuing lots of commands, albeit commands sweetened with love and good intent.

I used to think that being a parent was about being the one who was in charge. I'm always right, don't think you can get one over on me. Who do you think you are?

In practice, being the one in charge actually means being the only one allowed to make decisions.

My daughter will soon turn 11 - a decade, and a bit more - and now only now am I learning that I have to let her make some decisions. I have to meet her half-way. Or more often, three-quarters of the way.

This isn't the soft gush of a well-intentioned pre-teen's mum. I'm not talking about letting her make her own mistakes. I don't mean that I need to treat her like the adult she will far too terrifyingly quickly become.

I'm talking about the humbling experience of learning very late on that my child needs as much control as she can possibly have, and that my job is simply to temper that, rather than wrestle it away from her for as long as I can in order to Teach Her What's Right.

Earlier this week I sat through a day's training for autism professionals and parents and was told very simply that because of the way my child's brain had developed she would always take authority and that the best I could do would be to find the mildest way of imposing it.

This is so far away from how I've always seen being a good mum. I've always prided myself on dishing out the same kind of tough love and setting the same lofty goals as my mum did for me.

However I realised a while ago that entrance exams and grammar schools and swotting and straight As are all out, where my daughter is concerned. Now I realise too that laying down the law in the way that my parents did (and which I have always believed was a sensible model which instilled humility and respect - go on, call me old school) is also out.

So this week I took a deep breath and agreed some very basic stuff with my daughter. I had a conversation with her in which rather than insisting on having my way because that was just the way it went I listened properly to her explain why the flush of the toilet is too loud and the rush of water alarms her and why, after 8 years of fighting me about it, she simply cannot bring herself to do it. So we've agreed that for now, she doesn't have to. After that we did a deal about how many times a week she has to have a shower. And after that, after of five years of negotiating and yelling and ordering her to bend to my will, I accepted that my daughter simply won't use the hot tap. She's too frightened of the sudden change in temperature. So we bought medicated wipes and antibacterial gel instead.

I'm sure that some of you reading this will have got there way ahead of me and may well be shaking your heads in disbelief at my ignorance and idiocy in trying to impose 'normal' parenting strategies. Others of you probably think I'm a sap and may already be predicting that within weeks I will find myself trying to master the three-ring circus that my child insists I provide before she will contemplate getting out of bed. (Though frankly given the battle that is getting her up in the mornings, I would gladly provide clowns and elephants if I thought it would solve the problem.)

This feels a bit like standing up among a circle of strangers in a slightly draughty church hall and announcing: "I'm Sophie. I've been parenting my kid wrong for years."

But at least now I can start trying to do something about it.

Tuesday, 13 November 2012

In which I have an inappropriate strop

God, I'm so sick of looking after other people's hurts.

I'm sick of being the one to smile, and count to ten, and say let's sort this out.

I'm sick of being the one to listen while I'm shouted at, or keep a calmly blank face while others' expressions shrivel with anger or temper. I'm so sick of being the one to patiently maintain eye contact and coax the conversation along while others look away, or avert their gaze to signal displeasure.

I'm sick of doing the conversational equivalent of tugging my forelock, of hovering at my master's elbow, of smiling and bobbing and hoping to please.

I'd like for once, just once, to bellow and stamp and roar, to shout. To clench my fists or narrow my eyes or flounce and storm and say: "Fuck this. What about ME?"

I shouldn't be thinking this. Today, I have to remind myself, is a good day. Today - though you won't believe it after that intro - brought good news. I received the email that told us Grace has a place at the secondary school we have been desperate to get her into. It's the school that has hovered like a vision of Xanadu at the edge of my thoughts for the last two years, throughout the time I've learned how to make nice and fill in forms and attend meetings and cudgel my brain to learn more, to absorb and understand and file away personal hurt that I don't have the time to indulge because I have to stay on track. Today, a nice man who works as Grace's case officer at our local authority - a man to whom, to my shame, I have previously referred on this blog as the Scarlet Pimpernel because he so often seemed to be just out of my reach when I had questions - well, then, this man wrote me an email to say, we've had a letter saying she's got a place so I'm emailing so that you don't have to wait for me to send you a letter.

It was good news. I shouldn't be in such a bad mood. But I am. God, I really am.

I picked Grace up from school today weary after work - though I sprint out at 4pm like a faker I do manage an 8-hour day and a 3-hour round trip commute, smiling and nodding as I squeeze into the carriage alongside sour-faced commuters. My reflection in the tube windows today looked about 74. I blame that loud Sunday night party that our neighbours held til 3am Monday morning, when even the polite couple across the way were throwing up the windows and yelling at them to shut up. I'm 41, it'll take me til Friday to get over the din and the excitement. But as I walked down to the school this evening the thought of telling Grace the news made me smile. I collected her from afterschool club, holding my message inside until we were on our own, as we said goodbye to friends and teachers and collected bag, coat, and the countless daily bits of paper that Grace covers with drawings and doodles and cartoons during her day. We walked to the exit doors, and then suddenly Grace was gone. She was gone because she'd seen a parent and a child that she wanted to avoid. I can't say much more than that because I've been asked not to. Suffice it to know there had been an incident recently in which Grace caused hurt. So once again I went and made nice, which was quite hard because the other party didn't want to make nice. But I persevered. (My shit-eating smile is coming along nicely.) Then I went and coaxed Grace out of the corner in which she was hiding and took her back to the car, where I explained to her again why I'd had to do what I did. Then she shouted and raged and said it wasnt fair. I coaxed and soothed until it passed and ignored the scowls and the cutting eyes.

Then I said to her: Guess what.
She turned to me blankly and said, what.
I said, no you have to guess.
She said, impatiently, I don't know. Am I going to be on TV?
I said, no. Try again.
She pulled her hat over her face in frustration and said, I don't KNOW.
I said: You've got a place.
She paused, then whipped her hat off and turned to me and named the school and said: there?
I said: yes.
And she whooped. A shriek of pure joy. And turned to me with dancing eyes and said, really?
I said: yes.
We laughed.
She said: I love you Mummy. Thank you.
I said: I love you too.

Then we rushed home, ate food, and rushed back to the school for parents' evening, where I made nice some more with another party I can't name for more reasons I can't go into. But then, o joy, Grace's teachers welcomed us with smiles and jokes and sat Grace down beside me and told her what a good term she'd had and how well she done and how pleased they were. They said, you're doing really well. Grace smiled some more. And so did I. And this time it was real.

And here, normally, I'd have the homily. The neat conclusion about what I've learned. But I don't have one of those tonight. Good things happened today, but still, mostly I felt cross and shitty. Grace teaches me vast reserves of patience. It's just that sometimes, I wish other people had more.

Thursday, 25 October 2012

Starting over. (Again.)

It's a weekday morning, still black outside. The radiators are just starting to send a shimmer through the cool air that has gathered in my bedroom overnight. The door creaks open and my daughter tiptoes in.

This is Grace, who never gets out of bed before me, who has to be three times awoken every morning, who snarls and groans when the curtains are opened. This is Grace, who pads around to my side and slips into bed beside me and says, I don't want to go to school today Mummy.

We slip together like spoons, huddled under the duvet in the grainy dark, and I put my arm around her and  ask what's wrong. She says she has a sore throat, and fakes a cough. I tell her I think she'll be ok. She says she thinks not, that she really doesn't want to go to school. We talk a bit more. I listen and negotiate. I manage to get her out of bed and back into her room to put on her uniform.

Then I go to dress Betty, who pulls her pyjama top off her head with a soft plop and emerges laughing and looking windblown. Standing with her legs planted wide apart she presents me with her velvety round Cupid's belly, and commands me, twinkling, to kiss it. I oblige, inhaling her smell of camomile and milk and peaches. Then I button her into her jeans and pull soft blue socks over her perfect feet, the tiny pearly crescents of her toenails, which she wiggles in pleasure at the cottony yarn.

Then I go into Grace's room. My big girl is standing, undressed and frozen, in the middle of her room. Her eyes are huge and I notice the dark circles underneath them. Slowly, I approach her and dress her with the same tender care as my toddler. I button her shirt, knot her tie, help her with the uncomfortable business of school tights. I comb her hair back and secure it in a neat ponytail. I wipe her face with a flannel. Then, just under her cuffs, I spray a secret squirt of my perfume, a hidden comfort and physical reminder to her that I love her and will see her at the end of her day.

It's not enough, this time. She grabs my waist and starts to cry. Mummy, she sobs, I feel sick, I can't bear the thought of it, I don't want to go. Don't make me go. I make soothing shushing sounds and guide her downstairs, along the hall, to the kitchen table, from where Betty waves merrily at us. I get Grace a bowl and a cup and I pour her breakfast out. She needs to leave for school in ten minutes, if I am to have time to get ready and get to work myself. I keep my voice soft, and tell her she will be ok. Surreptitiously I check my blackberry and watch the clock. I tell her, just go for the morning and if it's still not ok, tell the teacher and I'll come and get you. I think about the work I have to do that day.

Grace eats a little and then stops. It's time to go. She puts on her coat and shoes while I fasten Betty's trainers and zip up her anorak. My husband opens the door and takes my little girl out to the car. In front of the open door Grace turns back to me in panic. She starts to shout and cry, louder and louder. Then she is shrieking and pulling at me. My husband, from the car, raises an eyebrow. I shake my head, and close the door, and hold Grace to me.

Then we go and sit down. Grace has got so big that she barely fits on my knee. She's all elbows and legs. I fold her up and tuck her into me and stroke her back. Then she starts to talk and I listen as she purges herself.

I'm really worried that I've got no friends, Grace says. I don't want to be the bad guy any more, but it's been so long and people are so nasty. The words they use, they make me feel spiky and slimy and I can't help myself and I can't stop the things that come out of my throat. I was so afraid to tell you. Her voice cracks with shame.

She talks on, about the boastful girl she put down, about the friend she doesn't want to have to play with because her games are so boring, about the classmate who whispered something to someone else that might have been about her and made her shout in her face in return, about the boy who she kicked when he baited her. She is mortified. They all hate me, she says. I was too ashamed to go in today.

A little while later I call work and explain that my daughter is ill and that I won't be in today. Then I call the school and make an appointment to take Grace in. We meet, her teacher, the special educational needs co-ordinator and Grace and me, in a little office overlooking the playground. Grace tells us that she thinks everyone hates her. She talks a lot about the last three years of school. Gently, we point out that it's a new year, that she's had seven weeks of term of which at least five have been good. We tell her that one or two bad weeks doesn't mean that everyone hates her. We use words like 'disagreement' and 'argument' instead of 'bullying' and 'teasing.' We suggest that if someone feels differently about things it doesn't mean that they're doing it to express a personal dislike of her. We suggest that Grace try to let go of previous hurts and allow herself to be optimistic. The SENCo is excellent: calm, affectionate and sensible. The headteacher stops by to give Grace a hug and tell her that everything will be ok. By the end of the session Grace ventures a cautious smile.

We drive home, and a song comes on the radio. It's cheesy R&B, the kind of thing I'd normally snap off immediately. But Grace turns it up and starts singing it to me. I listen to the words and smile and I sing it back to her. The words say: "Girl let me love you/And I will love you/Until you learn to love yourself." The windscreen blurs, and I switch on the wipers absently as I sing, until I realise it's my eyes that are blurring.

Grace says she's ready to go to school tomorrow. Tomorrow, we'll all try again.

Grace Under Pressure is published by Piatkus and is available here:

Wednesday, 17 October 2012

It's not an alien life-form, it's Asperger's Syndrome

So once again, Asperger's Syndrome is in the news and the day after the day before, the world's media* seem to be putting all their least-qualified people out there to discuss it.

I can just imagine the phone calls between news editors when the story broke yesterday that Home Secretary Theresa May had blocked the extradition to the United States of Gary McKinnon, a British man with Asperger's Syndrome who hacked into Pentagon computers seeking to prove the existence of aliens, then spent ten years fighting not to be sent to an American prison for life.

The call will have gone up across newsrooms and television studios in the land:
Editor 1:"Quick, we need something on Asperger's Syndrome."
Editor 2: "Let's get X to do it."
Editor 3: "Does he know anything about Asperger's Syndrome?"
Editor 4: "Does it matter?"
Editor 5: "I'll give him a call..."

Maybe I'm being harsh. But how else to explain the absolute blinders we've had today, from Matthew Wright on Channel 5 blithely proclaiming half-way through a phone-in: "I am horribly ignorant about Aspergers" (you didn't think, after yesterday's news, to do a spot of reading last night, Matthew?) to Jeremy Vine gravely intoning in tragic voice at the end of a Radio 2 discussion on Aspergers about "sufferers" of this "cruel syndrome." Eh? My daughter doesn't suffer from a cruel syndrome. She suffers from the lack of understanding and compassion of others. Even the sensible Independent newspaper ran a description of Aspergers which said it "disrupts something that is core to our being human." Pardon me? I don't think my daughter is less than human. But I suppose a discussion of cognitive versus emotional empathy in people with Aspergers would be too much to ask for..

Come on, I hear you say, you didn't really expect the media not to sensationalise this, did you? Especially when McKinnon's Aspergers was clearly presented as the reason not to extradite him. Well, maybe. But I don't believe (and maybe I'm reading this wrongly) that McKinnon's Aspergers was the reason he won his case. I believe he won his case because he was diagnosed with depression and that his diagnosis of Aspergers contributed to this, to his extreme anxiety that being sent to the United States would mean the death sentence for him, which in turn contributed to his depression, which fed the vicious circle in which the poor man has been bound for the last decade, resulting in him becoming extremely vulnerable. Thus the argument that being sent to the United States would contravene his human rights.  Incidentally, I think there's also an argument that McKinnon's Aspergers diagnosis backs up his claim to have been looking for extraterrestrials during his hacking adventure, rather than seeking to expose U.S. military secrets. People with Aspergers have obsessive interests which they will follow to the nth degree, often unaware of how it may look to outsiders, and it is easy to understand that McKinnon, intrigued by what he thought was a lead on aliens, would have followed it wherever it went, regardless of big red signs about national security. Though that would have been one for a trial defence, which clearly he doesn't need now. Though interestingly, another British man who has Aspergers, who goes by the name of Syed Talha Ahsan, does need a defence case after he was extradited earlier this month to America on terrorism charges, regardless of a similar psychiatrist report that he was also a suicide risk. Which throws up a whole other series of questions.

But in McKinnon's case there have been two very disappointing conclusions drawn by the media. One is that he "got off" because he is disabled - to whit, he has Aspergers, and is clearly not in his right mind. (There were worrying ripples of this when it was mooted that Norwegian mass killer Anders Breivik might have Aspergers: the overwhelming response seemed to be "oh well that explains it.") The other is that Aspergers defines the individual to the extent that there is no room for anything else. We have seen this happen increasingly as the discussion about autism and Aspergers widens. I am glad the conversation is taking off and relieved to have seen this happen in recent months, but it is tooth-grindingly frustrating in the plod towards greater awareness to have to go through this dense dramatising first, these black and white, unsophisticated pronouncements. "Oyez, Oyez, Asperger people have a VERY SERIOUS ILLNESS and are VERY WEIRD AND DIFFERENT. And, by the way, THEY ARE ALL THE SAME.

No, no, a thousand times no. We are glad, o Gods of the telly and newspapers, that finally you're talking about a condition which is exploding among the global population and which, frankly, you're already way behind on. Rain Man was made in 1988, don't you know. But come on, folks, you've been given a fantastic opportunity here to explore what autism and Aspergers means and judging by today's coverage, you've fluffed it.

People with Aspergers are different, yes. Weird? Well, how do you want to qualify that? They're no more or less weird than the rest of us -- you, who loves Zumba so much you go to classes five times a week, or you, who loves those Star Trek films so much you watch them back to back, or you, who love gardening so much you've filled your entire garden with that particular plant, or you, who have that favourite chair to watch TV in and feel a bit out of sorts when the wife gets it ...

The truth is, autism is a spectrum condition. I think we are all on that spectrum. In the UK it is estimated that 1 in 100 people have autism, so most of us either know or love or look after someone with autism. (If you don't know anyone then maybe, just maybe, it could be you.) People with Aspergers are on that spectrum. Some characteristics of Aspergers are the same. Many, many are very different. Ask a group of parents of children with Aspergers about their experiences and they will all tell you different stories. And different permutations of the diagnosis are coming through. Just as we start to talk more widely about autism, so we have more related behaviours to discuss. PDA: Pathological Demand Avoidance Syndrome, anybody? How about PDD-NOS: Pervasive Developmental Disorder Not Otherwise Specified?

I'd love to come to a neat conclusion for you all here. God dammit, I'd love to come to a neat conclusion for myself here. (It is after all, what I'm trained to do, and the last few years floundering about hasn't been much fun.) But the truth is, there isn't one. I'm no expert in this. I've lived three years with my daughter's diagnosis and in that time I've learned a lot. I've also learned how little I still know. It's an attitude I'd recommend to anyone planning to write or talk about this subject any time soon.

*disclaimer: I work as a journalist. but sadly no-one asked me to write about Asperger's today.

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Monday, 1 October 2012

Well, we're out there ..

"So when exactly was it, when you felt like killing yourself?" said the journalist at the other end of the phone last week. "And that episode when you're crying in the shower, when was that?"


A confession: I was never much one for confessions. A lot of confessional journalism is fabulous, searing, inspirational. Some of it opens eyes and breaks down prejudice. Some of it is self-indulgent.

I never said I wouldn't do it: I just didn't think I'd ever have anything that important to speak up about.

But then my daughter - my precious darling big girl, the grace of my heart and so-named - was diagnosed with Asperger's Syndrome, and our world changed.

I felt lonely and confused. Grace felt lonely and confused. I was angry a lot of the time. So was she. She would come home alight with tension after a day of trying to process a world that couldn't make room for her and I would watch helpless from the sidelines as she went off into another meltdown, fizzing and jittering and shrieking like a Catherine wheel. I felt burdened by a huge responsibility and clueless about how to help.

One thing Grace would say again and again was: "Why doesn't anyone understand?" Then she started to say: "I'm so stupid and useless."

So I thought I would see if I could find a way to help other people understand and in the process make my daughter feel better about herself. By then I was noting down my thoughts daily, in a scrappy journal, in a barely-readable scrawl, as I travelled to work by tube. I thought if I could scribble down all my jumbled, jangled responses to the situation in which Grace and I found ourselves, then somehow a way ahead would reveal itself. Then I thought: why don't I just write it all out and ask other people to read it, and see what they think.

I said to Grace: "I'm thinking of starting a blog, to tell people what it's like to have Asperger's."

She brightened immediately. "Yes!" she said. "I want people to know what it's like. Please will you tell them?"

So I started. Grace read every entry. She talked openly about how she felt and was honest when things were bad, when school went wrong again and friendships failed. Sometimes she would read an entry and ask why I was feeling the way I was. We talked a lot about emotions and she learned along the way. (Contrary to popular opinion, my Aspergers daughter is highly sensitive about how other people are feeling and is agonisingly empathetic. She just struggles to interpret emotions in the moment.) Sometimes I would ask her whether it was ok to write about something particularly painful. There was a lot of stuff I didn't write down.

There were some very tough times. When they came around, I thought I should be honest about them. In so doing I've been told by many other parents of autistic children that it's a relief to see someone telling the brutal truth about the downs. There is so much pressure to be relentlessly optimistic that when the outlook seems bleak it can seem a betrayal to be honest about it.

But this was never meant to be a sob story. My daughter's life is not a tragedy. When I read the doleful medical reports, the diagnosis, the regular assessments, I would think: whose child is this? My Grace sparkles and entrances, and holds any room in the palm of her hand. I wanted to show people that she is not defined by her Aspergers. It is who she is in the same way that she has brown eyes and long, long legs and a delicious expression of mischief that always betrays her ahead of a prank. (I hope she never loses it.)

We've both grown in confidence since I started blogging. Grace has full time help in school now, after our a long battle with the authorities to get a statement of educational needs. These days she comes through the school gates beaming and telling me she's had a great day. She's winning gold stars and trophies. And she's looking forward to going to secondary school. Meanwhile I ran the London Marathon this year, wearing the National Autistic Society's vest and on Sunday I'll run the Royal Parks half-marathon for the second time as part of the NAS team. In the last year I've raised just over £6,000. And I've built up my mental strength as well as my muscles.

I wouldn't quite call it a happy ending - we both know the road ahead is likely to have many more bumps - but life today feels good.

Grace is excited and proud to be in the Guardian and the Times newspapers. When we received the first deliveries of our book, which is published this week, she picked it up and turned it over and over with an expression of wonder. I said to her: "Shall I stop writing the blog now? I think maybe it's time that you had some adventures in private." She turned to me in alarm and said: "No! Please don't. It helps me tell people what it's like."

So for now I'll keep blogging. There is still plenty to say. I think and hope the next year will be more positive. I still have worries about my daughter. I fret about the challenges of adolescence and the next stage of her education. I fret about the lack of official support, from the government's plans for SEN reform, to Michael Gove's plans to change the examination system.

But now I know I have a voice and I hope that I can make a difference. And now I know I can run, and get through the difficulties. And I know that now and always I can take my lead from my daughter, whose courage and dignity and warmth is inspirational.

Gracie, my darling pet, thank you. I love you.

If you would like to support me on Sunday's run, and help me raise awareness of autism, please click here

If you would like to read our book, please click here

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: 

Tuesday, 28 August 2012

Finding Elsewhere

"We only look forward. We don't look back."

The words, bright and slightly brittle, are those of someone who is determined to survive. They belong to a mother who is being interviewed for a BBC programme. She has just discovered that her younger son, as well as her firstborn, has been diagnosed with autism. I recorded this programme a couple of weeks ago and since then have been preparing myself to watch it. I try to absorb as much as I can on the subject since my daughter was diagnosed with Asperger Syndrome. But it often takes me a while to work myself up to it. I know the latest book or documentary or radio programme will advance my learning. But I also know they will hurt.

This one is no different. I have been watching for about twenty minutes, thinking that it is well put together and not telling me anything new, when just like that, the floor suddenly tilts away. On the screen, a little boy is spinning and peeking while his mother's voice explains that this one of several behaviours that made her think he may be autistic. Watching him makes me catch my breath. He looks exactly like my girl used to when she was little, when we didn't know, when we thought that that cheeky sideways tip of her eyes and the smiling, silent whirling was just one of her eccentricities. We used to laugh at her affectionately, and ask her what it was that she was trying to catch sight of.

The next scene is of the little boy's distress outside school as he tries to explain to his mother why he doesn't want to go. "I don't like the people," he says. "I don't like the noisy." In another scene he tells her: "No-one wants to be my friend." Coming home exhausted from another day of trying to process his surroundings, he kicks off a screaming tantrum and turns his frustration on his mum. I watch in horror at the familiarity of it. But I can't turn it off.

It is hard to explain why seeing something so familiar came as such a shock, or why it was so upsetting. The rush of feeling that hit me said mainly: how could I have forgotten this? How could I have forgotten that helpless feeling of hovering at the edges of the world my daughter inhabits?

Life has got easier recently. We've established routines. She is older, and learning, and so perceptive. When she goes back to school in a week she will finally have support from trained specialists. I have allowed myself to relax and stop wondering what I could have done earlier and what I need to worry about next. Watching this little boy, it all comes back and I wonder at my arrogance.

Grace's world frightens me and fascinates me. It looks so like the place in which I live and yet isn't. Her Elsewhere lies like a water mark over my world, blurring the surface, overlaying my normal with a different shimmer. I don't forget it's there, not really. But sometimes I let myself push it back to the furthest reaches. Like now, when Grace is on holiday with her dad and the house is quiet and seems somehow more solid.

After the programme ends I go to change Grace's bedlinen in preparation for her return, and put away some clothes I have washed for her. Hanging up one of her dresses, an image of her wearing it -- Bambi limbs and tangled hair -- hits me with force and I think suddenly that while I think I know her, what if I still don't? Then I wonder, how much don't I know her? To what extent will she always be Elsewhere? How far behind her do I trail, my voice muffled? When she was little I thought I knew what she was living and I was so, so wrong, so far off. The thought that I might still be so terrifies me. What might she need next that I don't know about and she can't tell me? It is like running an endurance race looking for markers that don't exist and without knowing where the finish line is, or indeed, if there is one.

I tidy her room, neatly arranging its mixture of artwork and books and bits of jewellery and the odd slightly grubby pot of sticky lip gloss alongside toys and dressing up. I make her bed, smoothing out the creases and tucking in the sheets tightly, and I shake out a couple of drops of lavender oil onto her pillow to help her sleep. I think of that woman's voice, brave and slightly askew, and I tell myself: look forward, not back. I have to face the fact that I will never get to the place where Grace is. But if I'm moving forwards, at least, I'm going in the right direction.

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

To watch the BBC programme, "Growing Children" about autism, click here:

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

Sunday, 12 August 2012


I am in France, on a motorway, under brilliant skies that stretch for miles. There are cornfields and cyprus trees. Everything is lit in summer yellow. Above, a tiny biplane turns exuberant loops and rolls, vanishes momentarily behind perfect cloud puffs, then pops out again with a cheery wing-wave. Peering up at it from the car window, I smile. The bit of me that is constantly fretful has gone quiet.

Sitting on the back seat is Grace. She is smiling and joking with the boys and pleading for her favourite music on the car CD player, then doing jiggy, giggling, shoulder-wiggling dance moves to make her little sister laugh. As the children play, our car arrows down through the countryside, through sunshine and beauty and space to breathe.

A week later I feel as though I'm on that plane, caught in a tailspin. What was supposed to be a warm and relaxed holiday to erase the memories of last year's washout has turned into a downward spiral of tension and argument. Grace protests daily whenever we do anything that deviates from her chosen pastime. In some respects, we are victims of our own success. We chose a popular, high-quality campsite with a swimming pool, in an area guaranteeing good weather. Now all my daughter wants to do is be in that swimming pool. Left to her own devices she would spend hours, all day and all night, dreaming and drifting and diving. It is lovely to watch her do this and to join her in the pool, to hug and splash. But there are six of us altogether, and other people to entertain, and besides, I want to get away from the rows of loungers to the beaches and the cliffs. It turns out, though, that Grace hates the sea this year. She hates the feeling of seaweed under her toes, she hates the suspicion that it might be down there even if she can't see it, and she shudders to think of the sea creatures that may also be lurking. No matter that the sea is the glorious sapphire of a dozen daydreams. She stamps and groans when a beach trip is mooted, cuts eyes at me with viciously irritated expressions that hurt. She throws back her head and wails whenever my husband and I call everyone together for a bike ride, then throughout the ride keeps up a constant stream of complaints and wails of effort as she pedals.

To begin with I keep my temper. I give her lots of notice of approaching activities. I negotiate, persuade and explain. I tell myself that she's doing brilliantly, and take comfort from the smiles and hugs that she dispenses liberally after a day at the pool. She is making friends among the other children at the campsite. This is all wonderful. I tell myself some of the other stuff must just be approaching teenage behaviour. I tell myself that it's all fine, really.

As the days pass, my explanations and negotiations give way to scolding and lectures about how she must improve her tone of voice and curb her rude glares. By this point, Grace is throwing complaints at me when I wake her, when I brush her hair, when I ask her to sit down for a meal, when I do anything at all that removes her from her own train of activities. I feel like the world's biggest spoilsport, bringer of boredom and crap. One day while I am in the middle of telling her off about failing to consider what other people might like to do, Grace puts her fingers in her ears and mouths "shut up shut up shut up shut up" while looking at a spot on the wall just over my shoulder. My scolding turns to shrieks and I send her to her room. She bursts into tears and runs away from me with an expression of heartbreak. Later that night, when I look in to check that she is sleeping, she is serene. There are more freckles on her nose. Her hair has got longer and lighter. I feel terrible.

The next day Grace is wary around me, keeping a wide physical distance with a look as though she expects me to pounce on her at any minute. That day French TV shows an interview with an Olympic athlete who has failed to win a medal. She is heartbroken, and apologises profusely to her country. I've done nothing but prepare for this for years, she says, and at the end it wasn't enough. I just wasn't good enough. This is exactly how I feel at the end of every family holiday. I missed the medals again, despite all my training and preparation. I still can't get it right, I still can't perform under pressure. I still seize up. I let my girl down.

The next day I go running. It is early, so early in the morning as I strike out along a coastal road. On my left the moon hangs lavender-grey. On my right the sun is sending early peachy light across the sea.  To begin with I struggle -- it is so early, and there was that red wine last night -- but eventually my breath comes without effort and I am moving and floating a bit and finding a bit of space before I go back to the battle. The process seems so familiar, and yet it is not. I am still learning.

Shockingly soon afterwards I am sitting at the tube station at 5.50 in the morning. It's my first day back at work and I'm fighting off gloom with an edge of panic on finding my holiday is so quickly over and I am back in the role of fettered commuter.

Then Grace's voice floats into my head. She is singing Swimming by Florence and the Machine. We are walking down the sand toward the sea and the sun is blazing on my shoulder blades and I am holding Grace's hand and stroking the freckle on her thumb as we walk. She turns and squints up at me and smiles. I wrap the memory around me and step onto the train, smiling.

Monday, 9 July 2012

The trick is to keep breathing

The woods are soaking wet.

Above, tattered trees look exhausted by the relentless rain. Below, broken branches litter the way ahead. A sea of slugs and slimy vegetation make the going more treacherous still. I've been running for ten minutes and I'm already shattered. I wanted this run to take me away, far away. But it's forcing me to concentrate on every little detail around me.

The details, the bloody details. There is no escape from them, no matter how hard and how far I run.

Two weeks ago I finally received the piece of paper for which I have agitated and waited so long. The green logo of our local council has appeared on so many disappointing letters and bleak reports over the last few years that when I opened the latest envelope and saw it within, my heart sank on reflex -- before bounding when I realised that actually this was the letter that brought good news rather than bad.

The council has agreed -- finally, after years of pleading and negotiation -- that Grace needs more help. It says so in black and white in the statement on my desk. I have checked and re-checked this piece of paper every day since I received it. I still worry that it might disappear in a puff of smoke. It says that Grace requires very specific teaching provision, which it details clearly, and adds that she must also have one to one teaching support, 7 hours a day, 5 days a week. It also says that she must go to a specific school, the one we want, the one that can properly care for her and help her bloom.

The piece of paper means Grace now has a whole new life in front of her. Just like that, her future is brighter.

But the details are breaking my heart. Despite its ultimate message, the letter is not a happy read. It includes a long, long list of my lovely girl's inabilities. It sets her apart again. This sounds so obvious as to be ridiculous, but nevertheless it comes as a shock. In the day to day, my daughter is just my daughter. She is brilliant at some things, hopeless at others. The council's letter, a wonderful gift of education, also formally acknowledges a gulf between my daughter and other children. It makes me cry.

I spend far too much time crying (as patient regular readers of this blog will attest.) So I decide to throw myself at the next tasks in an attempt to halt the blubbing. I have to find a secondary school for my girl, and I have to start another running regime ahead of the next half-marathon in aid of autism awareness. (I am running the Royal Parks half-marathon again in October to raise funds for the National Autistic Society.)

The first bit of this is easy. I know precisely which school I want for my daughter. It's out of our catchment area and so only accessible for us because we now have this statement. It's one of many reasons I battled so hard for the statement. The prospect of my daughter being forced to go to one of our local schools -- and get eaten alive there -- kept me awake at nights and fuelled my fight.

I know that the school I want specialises in supporting children with autism and Asperger's alongside the mainstream; I've seen its airy art studios, drama studios, music rooms and recording studios, and its theatre, its photography department and library. I've seen its position in the results tables.

Last week I took Grace along to see it. She started smiling very soon after we arrived and didn't stop after we left. Walking back to the car she clutched my arm and said: "Mummy, I can't wait to go to that school! I wish I could go there right now." She hasn't been so hopeful about school for years.

Then she went back to her primary school, where in a bubble of excitement she relayed her find. One of her classmates, a regular tormentor, started laughing at her and said that she thought she'd be going there too. In dismay, my daughter said that she had hoped this time to go to a school where she'd be looked after. Her tormentor told a teacher, who then shouted at Grace for saying that her current school wasn't looking after her.

I found all this out later that afternoon, at the end of a day in which I had felt more positive about Grace's prospects than I had done for years. I did what I always do: I comforted Grace and told her I would fix it. I phoned the school and talked the incident through with an apologetic-sounding teacher. Then I laced up my trainers and went running. There were slugs underfoot. There was driving rain in my face. After a while I allowed myself a small, hysterical giggle about a teacher who could think that the correct response to a child who felt unprotected would be to shout at her.

I kept running and after a while the details faded a bit.

The trick is to forget about the details.

The trick is to keep breathing.

Friday, 22 June 2012

On spoiling other people's fun

I keep spoiling other people's fun.

I have become a po-faced party-crasher: a poo-poo-ing puncturer of other people's pleasure.

I'm not sure how it happened. But I think the answer might have the words 'special needs parent' in it.

I've written before on here about enduring spiky interactions with professional comedians who take offence when their jokes about autism cause offence.

This week I tangled with an amateur humourist, but the symptoms were the same: rising nausea, rage and panic. Familiar despair.

This time the arena was a well-known department store. The children's department of a well-known department store. To be puritannically precise: the toy department of the children's department of a well-known department store. The place, of all places, to which children gravitate for fun.

I was looking for birthday presents for my baby girl, now no longer a baby quite so much but three years old, lively and smart as a whip. I was browsing in the Playmobil section, looking for cars and trucks -- anything with wheels, really, so that it might stand a chance of keeping up with her -- and reflecting on the difference between my baby and Grace, who at three was already drifting, dreaming, obsessing over the fantastical and far-away.

Then the jester spoke.

To my right a cluster of shop-floor staff were gathered around an art table, trying out a new creative device that was on sale, and comparing their efforts amid giggles and murmurs. One of them -- the only man, young and blonde and confident -- surveyed a colleague's efforts and pronounced: "I'm the artistic one. You're just autistic."

His workmates giggled, and elbowed each other. One said softly, "ooh no" and lowered her eyes and smiled. The jester puffed out his chest a bit and beamed.

I kept walking, round and around the displays, but no longer seeing them. First I felt white shock: spots danced in front of my eyes and my head buzzed as though I might faint. Then my senses rushed back in, led by overwhelming relief that Grace was not with me. Then: outrage. I stopped and looked back. The young man was walking smartly away from me and over to the book section, file under his arm, walkie-talkie in hand, passing out brisk, professional courtesies to shoppers along the way.

And I thought: should I say something? And then quickly afterwards I thought: I have to say something. And then just as quickly after that I thought: here we go again.

I'd love to have been able to just laugh it off. I'd love to have been able to roll my eyes and say "oooh, naughty" and dismiss it. I'd also love to stay out dancing and drinking until it's 4.30am and the birds are cooing in response to early dawn -- but those days are over too.

So I took deep breaths and lingered, and when the joker passed back my way again I stepped in front of him and said: "Excuse me, don't take this the wrong way but --"

What a ridiculous thing to say. How mimsy, mumsy, middle-aged mousy of me. But I didn't want to go straight into "How dare you" and I didn't want to say "Look here." I wanted to talk to him as me, just me, not one of the Professionally Outraged. I wanted him to listen. In the event though, I don't think he noticed how I prefaced my complaint. As soon as I got to the bit where I explained that I was the parent of a child with autism and that I'd overheard his joke, and that really, it would be sensible to reconsider such statements because they were liable to cause offence -- his eyes got very wide and fixed on a spot over my left shoulder, and his complexion took on a greenish hue. I left him, then, muttering "sorry madam, so sorry madam" over and over, in tones of mortification, to a spot on the wall in between the wooden building blocks and teething-ring stackers.

As jousts go it was terribly unsatisfactory. But then, there is rarely pleasure in this combat. No-one ever says "You know what? You're absolutely right and I'm an idiot and I can see that you're a very nice, normal person and you probably laugh at other jokes and even play the fool occasionally and I'm so sorry." They just look angry, or shout, or look like they want the floor to swallow them up, or like they might cry. And then I'm back to being the po-faced puncturer again.

In the event the store did issue me with a better, fuller apology. The jester's manager telephoned me and talked for a while, using words like "dignity" and "understanding" and "rebuke" and "regret". He said he would send me vouchers, which I said I would spend on Grace.

I'm still waiting for the vouchers. And for the day when it happens again.

Postscript: I received a letter of apology and £50 worth of vouchers from department store, along with a letter of apology from the manager of the toy department, who hoped the voucers would provide some recompense to me and my 'son'. 

Sunday, 10 June 2012

A Real Princess

When I was a little girl, a princess was defined by her fragility.

Within the treasured, tattered collection of yellow-spined Ladybird fairytale books that lined the shelves in my bedroom, the princesses were all delicate-limbed, blushing, fine-browed beauties. In every tale their lineage was clearly established at the start: beloved child of the king and queen, possessing unparallelled beauty and all-round loveliness and tenderness. Doe eyes mandatory. Tiny waists, too. These were not girls who ran and jumped or asked questions or bickered. Time and again they waited patiently and in mortal peril to be rescued by a strong, brave challenger, who was coming to rescue them primarily because they were a. a princess and b. beautiful.

In case there was any risk of small girls missing the point, one of the stories -- The Princess and the Pea -- clarified that a true princess was so tender that she would feel a pea beneath twenty mattresses and be able to display her pedigree in the purple bruising brought by morning time. (Much to the prince's satisfaction.)

I loved those books. I pored over them for hours and traced the silken dresses and flowing locks with a finger, imagining how I would look in similar apparel. I didn't really clock the significance of the princesses' inaction. Eventually reading led me to more sophisticated tales, through Enid Blyton and C.S. Lewis to Jane Austen and the Bronte sisters and A.S. Byatt and Margarets Drabble and Atwood, and a world of heroines and women writers that took me far, far away from Snow White and Rose Red and Rapunzel.

Unless I went to the cinema, where the myth of the real princess still reigned. As an eleven-year-old I shifted with boredom through some of the male-populated blockbusters -- yawning and scratching at the endless men of the Star Wars franchises and pausing during the frantic plots of Back to the Future and Indiana Jones to wonder where the girls like me were. Women in those films were still there just to be kissed and rescued. They might get to throw the odd punch to make the chase more exciting, but eventually according to the rules they'd be caught -- twice, once by the man and then by his enemy, thus setting up a daring rescue mission for the film's hero. They might get the odd sassy line -- but too many wisecracks and their character would be downgraded to the frumpy tom-boy. After these films the playgrounds at school would be full of boys shouting and pretending to shoot and stab and brawl, while the girls stood around in gangs. (I went to the library.) These days the game seems largely unchanged except that the boys now come home and live out their version of the action on computer games, shooting and stabbing online (male) opponents. (Grace makes for her books and drawing paper.)

In between time, 'princess' has become a derogatory word. Alongside the fluttering eyelashes and belling skirts of story heroines -- and their modern-day spin-off, those cringe-inducing Disney characters and costumes for little girls -- it now means a woman who is hard work. A woman who is spoiled, vain and self-centred.

Who would want to be a princess? I find myself wondering, and I keep them well away from my tiny girl, my flaxen-haired three-year-old baby Betty, whose sneakers are perpetually filthy and who can load her big brothers' Nerf guns (tongue sticking out, one eye shut as she sights the barrel) in seconds. (There is another post here on girls and guns, but that's one for next time.)

Then last week Grace and I went to see Snow White and the Huntsman. Grace started the film curled sideways in the seat beside me, head under my arm, her fingers laced in mine, as she anticipated alongside the excitement of seeing the film, some anxiety about loud noises and bloody fight scenes. As the film unravelled, so she also unfurled, gradually straightening, unlinking from me and sitting ramrod upright, her face lit by the glow from the screen, eyes and mouth open wide as though she would drink it in if she could. The princess in this film is indeed beautiful and good (tick, and tick) but she is also strong and bold and ferocious in armour, beneath fluttering pennant. In one scene, she gallops along in slow-motion, at the head of an army, her sword at the ready, determination for vengeance in her eyes.

At this point Grace turned to me and said breathlessly: "That's a real princess, Mummy! Not like those rubbish stories!"

And suddenly the penny dropped. All those boys fighting and playing and shouting and dreaming of battles and winning. What fun! Where were those films for us women when we were growing up? Where were the films where the heroine was a depiction of the character you'd like to be? Where were the films that held possibilities, dreams and ambitions for you? As I watched Grace and watched the film I felt goosebumps. To see her connect with a woman who inspired her in this way was electric. I never thought I'd say it but: thank God for this Snow White. (And, frankly, also for the film's Wicked Queen, whose assault on the Kingdom is the vengeance of a woman who has been told that beauty alone is what gives her her worth and thus plots revenge on the world that created her.)

I watched the credits roll and thought that perhaps it was ok to let my daughter play at being a princess again.

Be good, and be brave, and let it be your armour, I told her silently.

We emerged from the cinema to find that a storm had broken. Outside, the skies swirled with black clouds and rain teemed down. Grace and I looked at the huge, heavy drops and then at each other. We grinned. Then we opened the doors, and ran out, whooping.

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?

Monday, 23 April 2012

26.2 miles

When I think about Sunday, April 22, the first thing I think of is the noise: the boom and clamour of the crowd all around, as if I were caught in the centre of a rolling wave that hurled me along and along; the whoosh and thump of my heart behind my eyes and in my ears; the steady one-two-three-four of my breaths, matching my stride; and behind it all a whisper, an insistent murmur behind the din and the hot roaring pain that came later, a voice that said: Grace, my Grace, my girl.

The night before the race I travelled to my sister-in-law's flat, a tiny fairytale garret at the top of an old Victorian house, that looked out over south London and the start line, fifteen minutes' journey away. All that day I had been distracted and quick-tempered, pretending to be a participant in Saturday family time while ticking off the hours in my head before it was time to leave. When I could finally go and pack it was a relief, even though, checking and folding my clothes, I felt more as though I was preparing for the executioner's block than the winner's podium. It took an age to pin my running number onto my vest -- my hands were shaking so badly that I fumbled the safety pins and pricked my fingers repeatedly. When I came downstairs to say goodbye to everyone the children stood awkwardly in the doorway, half-turned to run away and play again, half-aware that something was expected from them in this moment. A good luck card was produced. I hugged and kissed them all and bent to pick up my kit bag and then Grace was in my arms again. Voice muffled in my chest, she said: "Do this for me, mummy." I held her out from me to look at her face, ready to say something light-hearted and reassuring when, solemnly, she raised three fingers to her lips and held her hand out in salute to me, mimicking the gesture of love and respect used by her new heroine from the Hunger Games. It was so Grace: dramatic and funny and sweet, and heart-breaking.

That night I slept badly, tossing and turning for hours on the edge of nervous dreams that threatened to throw me into wakefulness. I rose at six, ate porridge and brushed my hair looking in the mirror at my terrified face and listening to the radio, which seemed to be playing in another country -- who were these people who could laugh and joke and comment on the lovely weather, preparing for a relaxed day of newspapers and walks and roast dinner? Outside the sky was clear and I walked down the hill towards the train station alone and in silence, avoiding Saturday-night piles of sick and litter. At a bus stop a woman lit up a cigarette. Then I turned the corner and there were loose knots of people with red race-day kit bags, waiting for the next train. Among them was a friend and fellow runner for the National Autistic Society. The tightness in my stomach loosened.

I don't remember very much about the start, except the mass of people around me and in front of me and behind me and the calming voice of my friend, who had done it before, and kept me distracted with stories. Helicopters buzzed overhead and cameras turned on us and a voice on a tannoy urged us to repeated cheers and whoops as we waited awkwardly, nervously, for the countdown to the start. Then there was a walk, a shuffle, people bouncing on their toes, discarding jumpers and waving goodbye to friends and somehow I'd got to the start line, a huge arch bright red against the blue sky and the pliant mesh of the timing board spongy beneath my shoes, activating the chip tied into my laces, and I was running.

Almost immediately the crowd was there, still modest at this point, strung out like beads along the barrier, sending us good luck and smiles as we set off. We passed an elegant Georgian home in the garden of which two young people on brass instruments puffed out a slightly melancholy version of the Rocky theme tune. I found myself pacing behind a purple Teletubby and in the time it took to puzzle his name -- what was it again, was he Po or Tinkywinky? -- I realised the first mile was done and I was running the marathon and bobbing along in the centre of a crowd all streaming forward in glorious colour and purpose. For the next few miles we passed several churches which had opened their doors to bless us and cheer us. In front of one, a vicar swung holy water, sending droplets arcing out over the shifting mass, and we raised our hands back, a communal thank you of hundreds. Then there was a choir and a band, and then another band, and then a string of pubs all open, with people dancing on wooden tables outside and waving at us.

So the miles passed. We came to our first incline and as one we all bent, and suffered just a very little bit, and turned to smile with relief at each other as we came over the brow. I found my pace with ease, checking my watch now and again to make sure I wasn't going too fast, or too slow, and finding every time I checked that my body was now automatically doing what I had trained it to do all those months and was carrying me forward with ease. A bit of me floated away and just watched the carnival around me as I progressed. Then the route turned right, and we all turned right and suddenly in front of us was Tower Bridge and I'd run twelve and a half miles and was passing under the grey turrets and the crowd was going crazy. Down along the highway the crowds were deeper and deeper -- three or four back from the barriers and screaming and shouting. It was a huge effort not to speed up, for I was loving every moment, grinning like a loony, knowing that my family were going to appear at any moment at mile fourteen, where the National Autistic Society had organised a cheering point. I ran with my neck craned, seeking out the purple and white and red balloons and banners and feeling goose bumps running up along the back of my neck in anticipation. And then there they were -- only on the other side of the barrier where I couldn't touch them -- so I yelled and jumped up and down, pumping my arms in victory and blowing kisses and the roar that went up was for me, for me and for Grace and for us all and as I ran away from them all I was overcome and saw the route ahead of me blurred for a while.

When I came to again it was mile fifteen and something wasn't right. Before I had time to realise what was bothering me I felt a hand on my shoulder, the runner behind me directing me to a voice in the crowd to my left. It was my friend and former running partner Karen, who had started with me nearly a year ago, puffing and blowing and swapping stupid jokes with me on those first training runs as we contemplated our first half-marathon. I shrieked with joy and ran to her and she grabbed me. Both of us wild-eyed and teary, we exchanged kisses and loving words -- none of which I can remember now -- and then I was running again, careering forward in a state of such massive emotion that I'm amazed, thinking of it now, that I didn't spontaneously combust on the spot.

By sixteen and a half miles I'd figured out what wasn't right. The pain in my back had bloomed again, despite those weeks of enforced rest and expert osteopath attention, and the first corresponding shivers of pain were sending feelers down my right leg. A swooping downward lurch of panic hit me. I tried to shake it off and keep going but the pain was building very quickly and with it, my distress.

So I did what you do when the going gets tough and the tough need to get going: I went for a wee and a think, veering off the course to where a line of portaloos stood and barricading myself inside one to shut in my panic. There, in the dim blue light and the animal smell of other people's fear, I chewed painkillers and took shaky breaths and thought: how do I do this, how do I get going again. The murmur told me: Grace.

So I came out and I started running again, only I couldn't. I told myself I would walk half a mile and then try again. I counted down to seventeen and a half miles and started running again. But the pain built up again, so I walked and hobbled, pushing out thoughts of failure and ashamedly hoping that no-one would see me walking, and then I forced myself to run again. By now I'd passed the eighteen-mile mark and there again was Karen, yelling at me from the barricades. Sagging with relief and self-pity I went to her and fastened myself around her neck and told her, choked, how much it hurt. She hugged me back tightly and told me how well I was doing. Around us the crowd looked at our embrace and looked at my face. Arms came out and patted me and told me I could do it. A blur of faces pushed into mine and said, come on, come on. Karen released me back into the flow of runners and I found my pace and ran again.

The next three miles were misery. At this point the route had taken us into the heart of Canary Wharf, all hard-faced glittering windows and no progress: we wound around and around, marking time and miles until we could be released back towards the centre of town and the final stretch. But not yet, and not yet, and not yet. We passed restaurants and wine bars and offices -- including my own place of work, an incentive to run straighter and a bit faster, no matter how much it hurt -- and here the crowds shouted for Toby and Robert, and yelled "Come on old man!" and rugby shouts of "Whoooooarrrrrgh!" for confident young specimens who strode out and overtook all around me.

Then, thank God, we were released, leaving the glistening maze behind us and heading back out towards my family and friends and the NAS crowd of supporters who I knew were all waiting at mile 21, scanning the crowd anxiously, their gazes turned so far out into the mass as they searched for me that they jumped when I came up the inside lane and whooped in their faces. Ecstatic, I did a little dance and they laughed, and grabbed me. My parents and sisters, tears in their eyes, clutched me. My husband leaned forward for a kiss and Betty and the boys -- hot and sticky -- smiled and put their hands out to me. And there was Grace, smiling and kissing me and asking me: "Why are you crying?"

At that point I thought I'd done it. Leaving everyone I loved behind me with a wave and a promise to see them at the finish, I thought I'd cracked it. I ran on, back along the highway -- the roar building to an astonishing pitch -- and into Blackfriars tunnel and an incline to the Victoria Embankment. As I bent into it the pain in my back came over me in a huge wave. For a panic-stricken moment I thought that I was going to be sick or black out. Breathing, concentrating, I emerged from the tunnel sandwiched in the middle of the staggering pack, to an immense crowd screaming encouragement. A sign told me I had only two and a half miles to go. Around me I could see runners smiling through their exhaustion and managing a final spurt. But all I could manage was a hobble, a limping half-walk, and then a walk -- biting my lips not to cry in front of all these people. My watch showed that I still had twenty minutes before five hours had passed. I walked as quickly as I could bear to, hoping to ease out the pain enough to pick up a run again, and started a distracted, frayed conversation with a similarly wrung-out runner alongside me.

At the corner of Big Ben I turned and saw, if it were possible, an even bigger crowd. I started running again, unable to bear the humiliation of walking in front of so many, despite being almost cross-eyed in pain. The route turned into St James Park and along Birdcage Walk, and while my mind was yelling at me to stop, it was also registering dimly that this was nearly the end. A sign said 800 metres and I nearly threw myself down on the floor at the thought of how far I still had to go. But then I turned and there was Buckingham Palace and the Mall and people were ten deep at the barricades, hanging off lampposts and thronged, waving, in the fountains and there was no way I could stop in front of them all, so I plodded on, weaving and bent, and there in front of me was another red arch like the one I had gone through nearly five hours ago. The clock on top of it said four hours and fifty-four minutes. I headed for it and was aware that I was smiling, that we were all smiling, and that it was nearly the end.

I crossed the finish line and raised my arms intending to make a victory gesture but found instead as I slowed to a final stop that I was clutching my head and weeping. Wiping my face with sticky hands, I followed lines of shattered runners submitting to the attentions and directions of race officials. A young man removed my time chip from my shoes while a woman strung a medal around my neck. In a daze, I collected my kit bag, slung it over my shoulder and started out into the crowds again to find my daughter.

Grace Under Pressure: Going The Distance as an Asperger's Mum is published by Piatkus in October 2012