Friday, 19 August 2011

You've got a friend in me

Grace is having dinner with her friend M who has come for a sleepover. This is Grace's first sleepover and she is very excited. Together the girls have unpacked M's overnight bag and between them they've negotiated who gets which bed (with only a little input from me.) I've cooked lasagne after checking it's M's favourite too, and lined up chocolate mousse for pudding.

The two girls sit at the table. Grace eats with gusto, pausing now and again to look up and grin at her friend and remind her: "You're sleeping with me tonight!" M sits opposite, curled on her chair like a mermaid, knees underneath her. She picks daintily at the food and, smilingly polite, tells me how tasty it is. We are going on holiday in a few days and she's curious to find out more. Curling her hair neatly behind one ear she asks Grace: "When you go on holiday, where will you be staying? Is it an apartment? Will you be self-catering?" Grace looks at her blankly and shrugs. "It's a house. Come on, we're watching a film after."

My heart is in my mouth throughout this conversation. Observing Grace navigate the minefields of early friendship and social interaction has me on pins: it's like watching nuclear diplomacy. I have been told by various assessors over the past few years that she has poor communication and comprehension skills, an inability to empathise, delayed development.

But Grace is far, far more complex than the sum of her assessments. She fully understands how people feel -- she feels the same way herself. She worries about getting it wrong. She worries about people not liking her. She frets about being popular. She is desperate to have her own best friend the way most other girls in her class do. She just can't read people's moods or understand why they might behave in a certain way; she cannot comprehend the impact that her actions might have on the way outsiders relate to her. She is not an emotionless android. She is not Rain Man. I've lost count of the number of times she has thrown herself into my arms weeping and shouting "I feel horrible!" when she realises that yet again she has caused hurt or offence.

Now the girls are sitting on the sofa watching their film. We've created a home cinema environment: the curtains are closed, the lights are out, and Grace and M are munching brownies in the dark and watching the characters find themselves in a casino. M turns to Grace and says: "Which would you rather go to? Las Vegas or Los Angeles? Los Angeles has Hollywood but Las Vegas is so pretty with all those lights. Do you know about gambling?"

Grace barely glances at her and for a moment I wonder if she has tuned her out to watch the film. Then she gets up and drifts over to the other side of the room where she starts to dance and sing to herself. M watches for a moment, then turns back to the movie. It's impossible to tell what she's thinking. I want to say to her, Grace isn't being rude -- she just doesn't know the right answer.

Thinking about this, I'm suddenly twelve again and in the bedroom of my schoolfriend Tracy Fleming. I've got butterflies in my stomach and the sure knowledge that if I don't stay on my toes I'll be toast. Tracy is firing questions at me and watching me as closely as a cat. The trick is to get the answers right but not so right that Tracy is wrong, and not so wrong that I look like a loser. Most of the questions are about just how long I've liked Duran Duran, which songs I know the words to, and which member of the band I fancy. The answers (I think) are: not as long as she has, none of the ones she likes, except maybe one, and anyone as long as it's not John Taylor. I fail. (I cannot dissemble about John Taylor.) Tracy's flashing displeasure follows me up the hill as I trail home and I brace myself for her mocking laughter at school the next day.

I digress, but only a little. M is far kinder than Tracy ever was. But making and keeping friends requires a particular alchemy that we all -- bar a few very lucky ones -- struggle to perfect. Don't we?

The next morning M's mum arrives to collect her, bringing along her younger sister. S is a pert child who fizzes with curiosity. She skips into the room where Grace, Betty and M are playing. At that moment Betty squawks at Grace for handling a favourite toy and S laughs and exclaims: "She doesn't like you, does she?" and Grace bursts into tears. My reaction is pure instinct -- I am across the room in seconds, ferocious and firing at S that was a nasty thing to say while cupping Grace under the chin to bring her eyes to mine.  "She didn't mean it, it's not true," I tell her. Grace hiccups and looks uncertainly back at me. I can see her wondering. Meanwhile S is round-eyed, frightened and in tears. I apologise to her mum, who is very nice about it. There's some slightly awkward conversation. I'm mortified. How is Grace going to steer through social situations when I am still crashing around like this?

The next day I text M's mum to check in and test the water. She tells me to stop worrying and that M had a great time. Grace is invited to stay the night at their house in a few weeks.

I wonder whether my nerves can stand it. And what kind of music M's mum likes.

Tuesday, 16 August 2011

How broad is this spectrum, exactly?

The running has had to stop for a while. I have a virus that makes me feel off-balance, dizzy and out of kilter. It has lasted a week or so already. I forced myself through ten miles on Sunday, driven by guilt at not doing it on Saturday when I felt unwell, only to end up queasy and reeling back at my front door. (I completed the run though, and did it faster.) The doctor says my inner ear is at fault. I must be still for a while and take some pills.

This feeling is not new. Trying to get a fix on how Grace is feeling, or is liable to react, often feels like a balancing act: as though I'm tiptoeing along the beam of a ship braced for the next pitch and yaw, or clutching a spinning compass between two opposing forces.

I had thought Grace's diagnosis would bring certainty. At the end of last year when I received the phone call I found instead that it threw everything into question. The doctor on the other end of the line asked me if I could come in to discuss the test results. I said yes of course and then in a rush asked what it was, what conclusion had they reached? The doctor faltered. I rushed in again, the weight of five years' not knowing suddenly too much to bear for another few days. Sounding deeply uncomfortable the doctor then said: "Yes, it's an ASD diagnosis." There were a few more short exchanges, about which I remember nothing, and she rang off.

ASD. I had no idea what she meant. As far as I knew the tests had been to find out whether Grace had Asperger Syndrome. The affirmative in the doctor's response left me entirely at sea. So Grace did have Aspergers? Or something else? Was this a relief or a disaster? I stumbled through the rest of the afternoon with Grace and baby Betty, replaying the conversation in my head until I could get to my computer in privacy.

Eventually I got to Google and Wikipedia, which told me that ASD means autism spectrum disorder and that it is so termed to encompass the wide range of associated psychological conditions, characterised by abnormalities of social interactions and communication as well as restricted interests and repetitive behaviour.

The meeting with the doctor (chastened by her superior and embarrassed for having told me the result over the phone) and the team of assessors, psychiatrists and speech therapists, revealed that within the ASD diagnosis Grace had more specifically Asperger Syndrome, with a side order of ADHD -- Attention Deficit Hyperactivity Disorder -- for good measure.

Ten months have passed since that meeting and most of the time I'm still at sea. Afloat, yes, and paddling hard: making progress most certainly but never quite sure where the horizon is. And then there are the regular tidal waves, that turn me over and leave me disorientated -- like when people say to me they don't think there's much wrong with Grace. "She's eccentric, charming and interesting," they tell me. "Surely that's all it is?" Or they say: "Oh, my kid does that all the time!" Others declare: "It's just the age."

I don't know what to say when this happens. My first reaction is always the same, a lurch of distress in my stomach and taste of panic in my mouth. Am I wrong then? Are the doctors wrong? Have I condemned her by labelling her? Or is this where the spectrum comes in? Is everyone on this spectrum then? Are there days when Grace is closer to 'normal' on the spectrum? Just how broad is this bloody thing?

And I feel embarrassed, and I feel guilty as I try to explain that no, Grace has AS, and this is how it manifests itself. What, really, is the point of pigeonholing her if observers see nothing wrong? Do I need this more than Grace? Because, by God, if she's not autistic then she's often a brat and I, by extension, a bad mother.

To the parents who say their kids enjoy inventing stories too, should I just smile and nod in future? Or should I tell them that when Grace tells stories all the rest must stop, and for hours. Should I tell them how last weekend, as her stepbrothers played with their robots on the sitting room carpet, she knelt on all fours across their toys so that she could continue to recite into their faces the ongoing chapter when they got bored?

To the relatives who say, she's just a kid, it's normal when she argues, it's the age, should I just smile and nod? Or should I recount the number of aggressive 'No!'s I get every 24 hours, from asking her to get up, to asking her to get washed, to get dressed, to leave the house, to go home again, to switch the TV off, to eat her tea, to clean her teeth.. on and on and on?

To the friends who say, oh their son is totally obsessive too, and won't stop thinking or talking about dinosaurs, or trucks, or planets or whatever, should I just smile and nod? Or should I mention that Grace's mermaid obsession has so far lasted six years? Or that her Monster High obsession means that she draws monsters on every scrap of paper from morning til night? Or that she plays alone every day because she will only play her own Phantom Manor game and no other?

Maybe I need her to be autistic because it's the only answer I've got. The rest is dizzying, and there are no pills for it.

Thursday, 11 August 2011

A night at the movies

So we are in August, deep summer. Even though I rise early every day to dress in formal attire and climb aboard the train to go to a glass office, where I sit at a desk and work, my head and heart tell me its holiday time, and my thoughts are those of a nine-year-old.

Summer holidays are light nights; sitting into the garden until late, inhaling the smell of grass and petrol fumes as the sky turns peach at twilight; a quart of sweets in a crumpled paper bag while devouring a pile of library books; counting out spending money from Nana; and a family outing to see the big summer film.

I am a child of the eighties so the films we saw were big, colourful blockbusters with special effects that we discussed later in hushed tones. They were punctuated by music that dominated the radio channels for weeks and featured soft-faced boy actors on whom to practise early crushes. ET, Star Trek, Gremlins - these were summer to me. Ghostbusters, and that electro-pop theme tune. Superman, after which my mum whooshed up and down the hall with a red towel tucked in the neck of her jumper to make me and my sister giggle.

So tonight I took Grace to see Super 8, a film about kids in summertime, billed as a cross between ET and The Goonies, made by a skilled new director and blessed by King Spielberg. My mum came too, minus the red towel. We bought pick and mix sweeties -- ribbons of fluorescent plastic and sour, sugar-encrusted orbs that seemed unchanged since 1981. We sat back into seats that were fake leather. We watched with excited anticipation as the adverts and the trailers rolled past and the film began.

The opening scene featured grave-faced adults in black suits standing in a kitchen, murmuring in concerned tones about how the father would cope. In the next room a group of kids wearing dental braces and shaggy hairdos made bad taste jokes about the state of the buffet and the state of the body. Outside a boy dressed in an uncomfortable suit sat lonely on a swing in the snow, tracing the outline of a woman's pendant with his fingers.

At this point, Grace leaned over and asked at a normal volume: "Why is he sad?"

I shushed her gently and explained.

A couple of minutes later she asked another question, and again I reminded her to whisper, and explained what was happening.

Not long afterwards the special effects kicked in, with eye-watering pyrotechnics and crashes and bangs that rolled around the room from multiple speakers. Grace put her fingers in her ears, where they remained for the rest of the film. From then on I watched the film in between watching her observing what was playing out in front of her. From time to time, she would ask me why I was laughing and then file away my answer. Regularly, she asked me "why did he do that?" and "what is happening?" Each time I told her and she said "oh", and put her fingers back into her ears.

I so wanted to share this experience with her. It felt like we were communicating through glass.

At the end of the film the music swelled, the characters embraced, the special effects provided a final shiver of excitement and the audience exhaled as one. It was stirring stuff, the moment to laugh and ruffle your kid's hair, or lean in for a kiss and surreptitiously blink away a tear. I found I was very close to crying.

On the way home I asked Grace what her favourite part of the film was. "The end," she answered simply. "I liked what they did when the words went up."

Saturday, 6 August 2011

A lesson in toughening up

Endurance is in the mind, I'm learning.

Get me. After a rough morning's run I'm Papillon.

Seven miles through the nature reserve and gated communities of footballing millionaires in tidy Barnet is not sufferance, and now that I'm sitting on my sofa with a cup of tea and only moderately aching legs I can see that.

But at nine o'clock this morning, mud-splattered and winded, I was locked in a form of solitary confinement that was as close to despair as anything I have so far experienced. (At this point I am resisting the temptation to draw parallels between the life of a working mum and that of a hard-core felon sentenced to hard labour and only limited contact with other adults.)

Today's run was a shortie: a bit of down time between the 10 and 11 miles of recent weeks and the 12 and 13 mile tests that loom next. In between my long runs I've been trying to improve my strength and speed: doing lunges and sit-ups that leave me purple-faced, alternated with 3-mile dashes that induce such nausea I have to resist the impulse to stop and vomit into the bushes.

A lot of training doesn't feel nice. But then some of it suddenly does and I'm spilling over with purpose and happy chemicals and the certainty that I can be everything Grace needs and that we can together emerge victorious from this marathon.

But, oh God, this morning's run.

It was supposed to be easy. It was supposed to be confirmation of how far I had progressed, how tough my legs and body and core were becoming. Instead it was an awful, shambling progression during which a voice in my head crowed in triumphant dismay that I'd made absolutely no progress at all, that I'd been kidding myself if I thought I could do this. By the time my watch beeped the signal that ended my torment I was nearly in tears. How could I have gone from 11 miles last Saturday via two mid-week runs totalling 8 miles (and yielding two personal bests) to this?

I still don't know the answer and I'm still as bewildered. At times this morning I've veered into panic about how I'm going to get to the end of those 13 miles on October 9.

But I'm not going to let the voice talk me into defeat and depression any longer because my phone has just beeped to say that Grace is in a taxi home.

Grace has been on holiday for two weeks and is now coming back to me. My stomach flips as I write that sentence. I can't wait to hold her to me, to fit her head under my chin and wrap my arms around her. I can't wait to brush her hair away from her forehead and kiss it, to bury my nose in her neck and inhale the smell of her. I can't wait to watch her face while she talks for hours about her accomplishments and adventures while she's been away.

I wanted to greet her fit and energetic, and strong for both of us. As long as I ignore that voice and tell myself I'll keep running, I think I can.