Monday, 28 November 2011

The note

It's a small piece of paper. A bit crumpled around the edges. Beige. The handwriting is careful: sloping letters linked by curls at the bottom of each one, done with the care of a child just learning to join them up. Looking at them, you can imagine the tip of a tongue protruding as the author presses down with the brown felt tip pen, leaning a little to the right. It would be perfect, but that the exclamation mark has been smudged.

Grace brings it to me in the kitchen of our home. She is white-faced. She holds it out to me and tells me that she has just found it in her schoolbag. I watch a torrent of emotions chase across her features. She laughs, then frowns. As she turns to me she is angry, uncertain, disbelieving. I read the note and look up at her and open my mouth to speak.

Then: fury. Flinging herself at me with a howl of pain she snatches the note from me and tries to pull it to shreds while rushing back across to the bin on the other side of the room. I run after her and turn her to me, grabbing for the note, hating it but wanting it and needing to preserve it, thinking fast: I have to show this to the school tomorrow, she mustn't destroy it. My daughter's face is a mask of anguish. I hold her to me. She is hot, raging, sobbing. She smells of fresh laundry and school and hormones and pain. She recounts another huge row at school, the one with the horrible child, the one that got worse and worse until she lashed out. Her voice is muffled: she speaks into my chest, hiding her face in hurt and anger while she tells me how she stamped on his foot and pushed him.

Then we have the conversation. The one we both hate, and know by heart.

I tell her that I love her, and will do everything I can to help her, and that I know how hard this is. Then I tell her that as soon as she touches or hurts someone then no matter what they have done, no matter how they hurt her feelings, no matter that they laughed, or poked, or whispered with others and narrowed their eyes -- no matter any of this, it's game over when she hits them.

She breaks away from me and screams and stamps her feet and shouts at me. They're stupid, they're horrible, they've all got it in for me.

Listen, I tell her. We all have jobs to do. Mine is to look after you and to sort this out, to talk to the school and make sure they fix this. Their job is to stop the bullies and to protect you in class. You have a job too, I tell her. Your job is to count to ten and walk away. You have to try, I tell her.

I can't help it, she throws back at me. She is calmer now, but still red in the face. Her hair stands out from her face in teary furious knots. I've got A- A- Aspergers -- and she is sobbing again.

For a moment neither of us say anything.

My daughter looks at me. What is the point of me, she says flatly.

I force a smile and tickle her cheek and pull her to me. I tell her all the wonderful, marvellous things that are the point of her. I fold her in a warm hug, but inside I shiver.

Later that evening she comes down from her bedroom. I have just finished writing a long letter to her headmistress and I am sitting on the sofa listlessly watching a mediocre film.

Grace appears in the doorway in pink rumpled pyjamas, the eyemask she needs to wear pushed up onto her forehead. She looks soft and pink and very very young. She says to me: I've been thinking and they're right. I am mean. I shout at people. I wish I wasn't here.

I think of the run I failed to get up and do this morning, the strength training session I failed to do a few days ago and I remember what the point of it all is and I am heartbroken to have been given this kind of reminder. I am frightened for her, and I am frightened that I can't fix this for her.

We curl up on the sofa and eat sweets and eventually start to giggle occasionally at  the silly film. For a blissful while we are just us two, mum and daughter and she is just a nine-year-old who can't quite mask a fleeting smirk when I say that yes ok she can stay up a bit later. I would give anything for it to be just this, and only this.

Tuesday, 22 November 2011


A little while ago my husband looked closely at my face and said: “Let’s go away for a few days.”

Now I am walking along a coastal path with him, holding Betty, who is pressing her face to mine, imparting sticky, snotty kisses while with both hands clutching at the wind in her hair. A seagull flies low overhead and we look up and she laughs to see its downy belly and yellow feet. I feel her arms around my neck and her feet in little boots kicking my hips while I fold my arms under her bottom. Her tiny white sharp teeth and rosy tongue are those of a little animal. I realise how much I adore her and I feel a sudden terrible pang for Grace.

We have left our older children – Grace and her step-brothers J and D -- with their other parents, our former partners – such a modern family, we – and have run away, mid-week, mid-November, mid-term. We are staying on an island on the Atlantic coast in a tiny, exquisite jewel of a house which belongs to a friend of my husband. It is decorated in shades of mushroom and oyster and duck-egg blue. The brass-framed beds are heaped with ivory quilts and white lace cushions. A row of dearly dented copper pans twinkle in the postage-stamp sized kitchen. On one wall is a limited edition black and white photograph of a very young Brigitte Bardot, all hair and mouth. Betty stands in front of it and points and says: “Grace.”

That night, in the bedroom we are all sharing I listen to Betty chatter in her sleep: alternately sunny and stern and anxious. I get up four times to stroke her cheek and smooth her hair when her murmurings take on a more plaintive tone. When I get up the next morning I drink two mugs of hot bitter coffee so strong that it leaves a dry residue on my teeth. Then I go for a run. I have to do seven miles: marathon training starts for real in two weeks and I have to keep up a basic level of fitness. My eyes look like poached eggs and my gait is shambolic after five minutes. My husband pedals alongside me on a rented bicycle with Betty grinning from the back seat beneath a helmet that makes her look like a mushroom.

It is a glorious morning. The sun is bright and the dark blue sea flutters and glitters to my right as I crunch along the white gravel path. The air is sharp with the tang of seaweed and oyster beds. We pass bushes of grey-green foliage. It is almost not credible that we are six weeks from Christmas. I am sweating in my running top and struggling for air. I force myself to run straighter, more upright. I clench my stomach muscles and move my arms like pistons. At elbow height Betty continues to smile cheerily at me. I push away thoughts of how on earth I will keep this up for 26 miles and try to live in the present.

London – dark, cold, rainy, with the hole in our bedroom window and our condemned boiler and my file spilling out reports on Grace -- seems a lifetime away. We are flat broke, but we broke into our savings and bought budget airline tickets to get here. I feel worried and guilty thinking about the money we have spent, that we can scarce afford, to get away from the lifestyle that we can scarce keep up. I think of the cost of Grace’s birthday party in three weeks’ time. I think of Grace. I have left the coast road and am running past white walled streets and out across long flat vineyards where orange leaves tremble on the breeze. My husband calls out exclamations of enjoyment at the day, at the scenery, at the buildings and landscape. We pass a cluster of old men pointing giant, ancient shotguns into a copse where unfortunate fowl are hiding. A little later, we pass a church where Mass is just ending and the last strains of plainsong enchant us.

There is no television in the house and no phone or internet reception. That evening we listen to music and drink wine and watch candles flicker on the exposed sandstone bricks of the sitting room. I am very happy and very in love and I cannot shake the guilt of being here without Grace instead of being there to pick her up from school and ask questions about her day with a casualness that belies an intense anxiety and a mental check-list of how she did in lessons, in the playground, at lunchtime, now. My husband listens patiently while I stutter to him how I am feeling. Gently he tries to tell me in a nice way that it’s not all about me, actually. That I am doing what I can and that I can only do that and that she is getting on fine and that she’s with her dad and things are progressing and that I should give myself a break.

But still, the guilt insinuates itself into my enjoyment of this enchanting place.

The next day Betty is in a grotty mood when she wakes from her afternoon nap. She plays with her dollies on the sofa, trying to cover them up and tuck them in with a blanket that is far too big. Her movements are jerky with impatience and she is muttering under her breath. I listen in and realise she is saying: “fucksake” in exactly my tones. I am mortified and guilty all over again. Is this what I am? A muttering, cursing grouch? I am red with shame while my husband stifles laughter. Ridiculously, the guilt has become yet another thing to feel worried and resentful  -- and guilty -- about. I must find a way to break free of it.

We go for a drive as the sun is setting, our little rental Renault belting along narrow roads the length of the island. Suddenly we leave a cluster of buildings and shoot out into miles and miles of salt flats silently reflecting the damson twilight. The land seems vast and endless; the skies stretch above and around and they are all there is. I feel tiny and insignificant. Finally, I can breathe.

Monday, 14 November 2011

Is There Anybody There?

This is how I spend my time.

Today, at work, I sat in a shuttered meeting room in front of a neat line of empty chairs and a tripod-shaped phone that squatted on a polished table like a robotic claw. I took off my watch and regarded it, aware of my empty desk elsewhere in the building, an abandoned chair and an impatient flashing cursor at the top of a blank screen. I decided I had ten minutes to complete the task I had set myself before what could pass for a wee-and-a-cup-of-tea break started to look like a more suspicious dereliction of duties.

On the table in front of me there was another report bearing my daughter's name and the stamp of the local borough and a long list of names of those who had been sent copies. The report was seven pages long and it said that on top of the recommendations of the last two reports (to whit: assess my daughter for dyscalculia; call in the local authority's anti-bullying sub group; provide a safe room to which she can go when she needs to; give her extra time for tasks but keep subjects to a 15-minute limit; review class social dynamics and underscore positive peer reactions to her) we should also now refer her to occupational therapy to look at sensory issues and how they might be affecting her work and behaviour. The woman who wrote the report suggested that certain hypersensitivity to touch and noise was at play in Grace's underperformance and disruptive behaviour, and also some hyposensitivity. I didn't know what that meant.

On another page, the assessor had written: "There may also be issues with her vestibular and prioprioceptive senses."

I didn't know what that meant, either.

I scanned the front page of the report again. The author's name was written there, and her title. There was no contact number, no address. I rifled quickly through the pages again. There was no contact number anywhere.

So I started by telephoning the council switchboard (using my personal mobile phone, not the claw) and asked to speak to the author of the report.

"We haven't got anyone of that name listed."

"She's written a report about my daughter -- "

" -- Putting you through to Childrens' Services."

A pause.

"Hello, Childrens' Services."

"Hello, I'd like to speak to (name)."

"I don't know her. Hold on, I'll look her up."

"I think she's on the advisory team."


"I've found a number for her -- here it is --"

"Could you put me through please?"

"Could I? Oh. (Doubtful) Er. Hang on."

Pause. Click.

New voice: "Hello?"

"Hello, are you (name)? I've got your report about my daughter."

"No, I'm sorry, I'm not her."

"Ah. I was put through to you by Childrens' Services."

"Sorry. What's the name of the person you want? I'll look her up."


"Here she is. Ah, no, that's my number. They've put my number here. That's why you can't find her."

"Right. She works for the advisory team. Do you know that number?"

"I can look up someone else on that team. Perhaps they can help. Maybe she's left or something."

"Ah. Ok. Thanks."

Pause. Click.

New voice: "Hello?"

"Hello, I'm looking for (name)."

"Hang on."

Muffled discussion in the background. I heard the name of the woman I was seeking being said by several voices in varying questioning tones. Then one exclaimed: "Oh!" and pronounced the name in recognition. My shoulders sagged with relief.

The voice came back to the phone: "She's not based here. I'll have a look on the system."

I waited in silence, the minutes passing.

"Are you there? She's at (this) school. Call this number."

I hung up. Eight minutes had passed. I redialled.

New voice: "Hello?"

"Hello? I'm looking for (name). She's written a report about my daughter but I can't seem to find her."

"Can't you? Awww. She's here. Hang on."

I waited in silence and as I waited I thought of Grace's face looking out of the car window in profile against the peachy dusk as we drove home last night. I thought of her saying blankly, still gazing out, apropros of nothing: "I don't deserve my friends Mummy. Because I get all cross and I lose my temper at them and shout. And they're just nice."

When the new voice came on and said: "Hello?" I breathed in and forced a friendly, all-the-time-in-the-world, polite tone into my voice and said:

"Hello? (name)? I've got your report about my daughter and I wondered whether you might have a few minutes for a chat. I've got some questions, you see."

The next report is due in my email inbox tomorrow.

Monday, 7 November 2011

Oh, belt up

Betty is hiding under the covers.

Beneath the purple velvet throw, a shape on my bed squirms and stifles giggles. Grace and I, advancing on tiptoe on either side, glance at each other and nod conspiratorially, smiling. With a whoop, we dash to reveal her but at just that moment my two year-old daughter flings back the covers and sits bolt upright, hair a perfect dandelion of static, shouting and pointing at us: "Found oo!"

We collapse on our knees, protesting that that's not how the game goes. Beaming and magnanimous, Betty beckons us in. "C'mon: hiding," she says to Grace and me. We get into bed on either side of her and she flings the coverlet over our heads.

In the dark, everyone's giggles subside. In the silence I can hear the slow breathing of my big girl and the rhythmic wet tug of Betty sucking her fingers. I can smell the top of Betty's head and the sweetness of her breath. Grace's hand curls around to find mine and I kiss her slender fingers, stroking a rough patch over one knuckle.

Cocooned and peaceful I reflect on my day, which has been thoroughly rotten but also revelatory.

It started this morning as I travelled to work pre-dawn, surrounded by grey commuters, watching warped reflections in the curved train window and fretting about the state of my bank account. As I sat, stiffly working through the same sums in my head and failing repeatedly to find a bigger total, my co-travellers shook out newspapers and gravely consumed articles about economic crisis, spiralling debt, political unrest. I thought about my below-inflation pay rise (make that sub-zero, below-inflation pay rise) and the contrasting mountainous peaks of our household outgoings. Beside me a young man read a book called "Think and Grow Rich", underlining in blue pen passages about using the subconscious to bring lucrative ideas to fruition. His fingernails were bitten to the quick. The time was six thirty in the morning. The carriage smelled of recession.

Work was better, enlivened by lovely colleagues and appreciation of what I do and the kind of black-humoured desk banter that supports and salves and acknowledges the really gloomy stuff only by poking fun at it.

But then there were the phone calls, the same tedious, depressing phone calls. The latest meeting, the latest conversation about the latest report, the latest tiny, tiny, suggestion of a baby-step towards progress. Redoing the numbers in my head again and wondering about paying for extra help if it might help Grace faster. Redoing my work shifts in my head again and wondering how to ask for the next bit of time off for the next appointment, or presentation for parents, or training that I dare not miss as I attempt to garner information and points. Debating carrying my tombstone-heavy laptop all the way home again in case Grace has had another bad day at school and I have to work at the kitchen table tomorrow in between visits to the school office.

And then someone told me to belt up.

Have you ever asked for help, wailed about being stressed, gone on and on and on about the injustice and the fatigue of it, got angrier and angrier and then been told: "Oh, belt up"?

Neither had I.

Boy, was it liberating.

Because actually, it's what everyone else has been saying all along. Translated, the government has long been telling me to belt up, to tighten my belt, to cut back, to manage. The local authority has long been telling me to belt up, to go away, to take my complaints and my needy daughter and just put a sock in it. The school has said to me belt up, we know, we're working on it, we can't perform miracles. In the business world in which I work the current mantra is: look, it's rough out there, we like you, it's time for everyone to make sacrifices: now take this and belt up.

It's just that so far everyone has been a bit more polite about it than that and I, sap that I am, have responded to their bland words by wrinkling my nose and making vague noises of displeasure and shuffling away to groan quietly to myself. Faced now with a direct insult I pass quickly through shock, then outrage, then anger so pure I think I might have a heart attack.

But now I can see the world for what it really is and the true nature of the abuse that's been coming my way for a while now. It's not personal. It just is. I can laugh and shake my head and counter with the knowledge that I have a secret weapon that will see me through. Later this evening, when the girls are asleep and my husband is back from work, I will go running. Quickly, before I can change my mind, I will change into my thermal long-sleeved top, my running tights, my shorts; I will don jumper and hat and socks. Outside it will be black and cold and squally with rain. I will wince and angle my head to avoid the worst of it and I will run and run and run and sometimes when the traffic is loud I will shout rude words and roar like a madwoman and no-one will hear me.

But I will not be silenced and I will finish this marathon.

Tuesday, 1 November 2011

Feeling the fear, and doing it anyway

I am walking through central London, along a busy road that in some respects has remained unchanged for hundreds of years. This long, straight thoroughfare has brought millions of people in and out of the capital, to the Inns of Court, to the hospital for the poor, to the City -- or to the gallows at Tyburn. (Now Tyburn marks the start of the A5 which leads among other places to St Albans and another kind of suburban death.)

I digress. I'm in the mood to wander and fret and pick at random thoughts, because the alternative in front of me is too intimidating to confront just yet.

Back to Holborn. The road is an assault on my senses in every way. In my ears, the ringing and drilling of workmen across the way; in my eyes an explosion of blooms in a flower stall in front of me -- crushed purple velvet of langorously regal iris beside perky peach-fringed dahlias; in my nose the acrid exhalation of cigarette smoke from the besuited, marching man in front of me.

I am numb to it all, moving like an automaton on heavy legs, thick with a fear that will overwhelm me if I acknowledge it. I turn my face up to the sky, hoping for a breeze that will bring me round. The street of tall red-brick buildings blurs and shifts, as though invisible stagehands are spinning levers to bring the set behind me whirling past while I stand, frozen, centre stage.

I am rooted to the spot by fright. I have suddenly realised the scale of the tasks I have set myself and I am terrified.

I think of the latest report on my desk at home, by the latest educational psychologist to assess my daughter. Its list of conclusions are wearily familiar -- such experts, these, who queue up to tell me about the child I know inside and out -- but its list of recommendations are new. They spell the next Sisyphean task for me: getting the school to understand them and put them into action and getting the local education authority to understand them and give us help to put them into action. The thought of it makes me gulp with dismay and weariness.

I have to change the system, then, if this one is not working. I look down at the books I am carrying: pages of advice on campaigning and advocating and pressuring. I have spent the day learning how to be an ambassador for my daughter and for others with autism and Asperger's Syndrome. I have watched and listened to a presentation about the government's proposals to overhaul the arrangement that provides special educational support to children who need it. The proposals are in many ways as deeply flawed as the current framework but some suggestions, if thoughtfully transacted, may mean real improvements. The thought of reading through the consultation paper, as I must do if I am to get this right, and of squinting and re-reading and making notes until I understand it; of finding ways to poke and prod and cajole a whole new set of people with the power to change my daughter's life makes my brain feel even thicker and more useless, my legs even more leaden. I am not good enough or sharp enough to do this.

But I must summon energy from somewhere, if only because I have to run 26 miles and raise two thousand pounds, in order to help to fund the organisation that is advising me and others like me on how to get educational support, on how to mobilise my local community, on how to woo my local MP, counsellors, decision-makers and media. I have to alert a wider audience to what life is like when you have autism or Asperger's and the system lets you down and the wider public is indifferent or intolerant. And I am doing this in an economic climate in which I would normally hesitate to ask anyone for two pounds, let alone attempt to amass two thousand.

In sum, I have set myself the following tasks: to rid my daughter's life of pain and uncertainty, to change the law, to run a marathon.

Now the muttering, fluttering agitation within rushes close up and shrieks in my ears and eyes and nose and mouth: "Are you entirely mad? Do you realise what you're attempting to do?"

I reach the mouth of the tube station and stumble down the steps, tired and overwhelmed and frightened by the responsibility and the scale of the undertaking ahead of me. At the entrance to the ticket barriers a man is playing the flute. He has a puff of fair hair, a jaunty tee-shirt and patched, flared jeans. He looks like a children's television presenter from the 1970s but for his melancholic expression. He is playing the Beatles' "Yesterday" and the tune winds down the tunnel after me, clinging to me in woebegone wisps.

Then something happens. I am humming the tune in my head, guiltily enjoying the self-pitying refrain, when another voice inside my head steps forward. It is assertive, primary-coloured, loud in my ears with a nine-year-old girl's bluntness and a forty-year-old's vocabulary. It says: "Bugger that. Yesterday was shit. Let's sort out tomorrow."

So I get on the tube and it whisks me along and along and up and north to my home and my girl and my wonderful, scary, promising, rewarding next challenge.