Sunday, 31 July 2011

Welcome to the world baby girl

Running through the woods on Saturday morning, I kept returning to the day Grace was born.

At around 5 miles I reached a state of calm, my legs moving easily to the rhythm of my breathing. It was early and quiet except for occasional dog walkers and the birds whirring out of bushes away from me as I passed. Overhead the trees reached high and laced together against the sun so that the path led ahead of me in cool, dappled shadow. My stride carried me forward; my thoughts carried me back.

Grace was taken out of me two weeks ahead of her due date: a consultant-decreed caesarian to ensure the safe delivery of an upside-down baby. Instead of being allowed to find her own way into the world -- predicted some time around New Years Day 2002 -- Grace found herself suddenly, shockingly airborne, briskly rubbed over, then handed to her similarly bewildered mother two weeks before we had planned to meet.

The first night in hospital she lay beside me in a perspex fishtank, choking in outrage and spluttering viscous bubbles as she sought to expel the amniotic fluid that had not been squeezed out of her by a normal delivery. I was still paralysed from the waist down and couldn't reach over to her from my bed. Terrified and impotent I squeezed a buzzer over and over to summon a nurse for help as Grace gasped for breath. A nurse arrived and again Grace was abruptly hoisted, rubbed and inspected. I held her to me for the rest of the night and finally she closed her eyes to her surroundings and drifted away, fists clenched. I watched her eyes move beneath fragile lids and held my breath.

Now I wonder if this is where her disinterest in the world began. In the days and weeks that followed Grace slept on, stubbornly detached from us all. I would hold her in my arms for hours, or peer into her cot after another feed time had passed, or watch her dream surrounded by cushions on the sofa, one tiny pink sock occasionally twitching. Health visitors scurried in and out, telling me off for not nourishing her properly. I would cry with frustration in my attempts to wake her and try to explain to them how hard it was. I would have to tickle her tummy, strip her naked and blow on her, wipe her face with cool flannels and stroke her cheek over and over to try to tempt her to turn and feed. She lost weight and I gained hollows under my eyes. There were dire warnings of drips and hospital visits.

I kept running, and remembering. I could hear my breath loud in my ears and the faint crunch of dry leaves under foot.

Eventually, Grace came round. There was jubilation after she finished 4 ounces of milk -- in an hour. The rest of her early baby days soon blurred into a recognisable jumble of nappies, routine, broken nights, teething and I responded to her summonses with weary obedience.

Last year, scientists in Scotland published a study which showed that babies born just one or two weeks early were more likely to develop learning difficulties such as autism. A friend and colleague at Reuters wrote about it here. When I was told nearly ten years ago that Grace would have to be delivered by early elective caesarian I was secretly relieved. She was my first child and I had lain awake in bed at nights looking at my huge bump and fluttering with panic at the prospect of pushing something so big out of me.

I ran eleven miles on Saturday morning. At the end I wondered how many of them would have been necessary if I had just asked what might happen instead of signing that consent form.

Monday, 25 July 2011

Revive, Restore, Repair

Grace is on holiday with her dad for two weeks.

The house is very quiet.

I think of her running along beaches with salt in her hair and sand in her fingernails, singing to mermaids and seagulls, and I smile.

The last two days we spent together she was shipwrecked and dripping after a stormy year at school, and in need of resuscitation. On the last morning of term I sent her upstairs to get her blazer from her wardrobe and put it on. Ten minutes later she trailed dreamily back like Ophelia, murmuring tall tales and music to herself with all thoughts of her original task forgotten. That same evening I found her cleaning her teeth in the shower, chewing her brush and rearranging shampoo bottles with an unfocussed gaze. I helped her out of the stall and wrung out her socks.

I miss her. But I know the damp air and misty fairytales of her fatherland will bring her home to me renewed: a mischievous sprite with dancing eyes and roses in her cheeks.

In preparation for her return I must reinvigorate myself. It's only now, sitting at my desk with baby Betty playing by my feet that I realise how tired I am too. I am shattered, exhausted, knackered. Wrung-out, done for, banjaxed. Fatigued. Frayed. I could sleep for a fortnight and still not wake.

This is not an option, however. I must run instead, and be bright and strong when Grace returns.

In preparation for my half-marathon I have been steadily building up my mileage week by week. I have discovered with amazed joy the exceptional things my body can do when I ask.

I ran 8 miles, with knees that felt like glass.

 I ran 9 miles, several of them in torrential rain.

I ran 10 miles, selecting a route that took me straight up a soul-destroying hill.

I had not anticipated the massive highs of such accomplishment. Nor had I anticipated how floored I would be by this level of physical activity on top of my daily routine.

So I asked advice of Amelia Watts, endurance runner and marathon trainer extraordinaire. Amelia can run 7 marathons in 7 days in 7 countries. Next year she will run the Marathon des Sables, across the Sahara desert in Morocco. Amelia could have my half-marathon for breakfast. Actually, she could have it for pre-breakfast, and be picking it out of her teeth before sunrise.

Amelia came to visit me and assess my body's fitness for endurance. She is a long blonde sinew. I am a tired 40-year old. After a battery of tests Amelia concluded that I have good balance and blood pressure and breathing. But my core strength is sadly lacking. The muscles that hold me together deep inside need some serious work. At times this last year I felt like I was falling apart. Now I know why.

But I also know I can mend myself while I work to make things better for Grace. Time for some sit-ups.

Tuesday, 19 July 2011

Do Put Your Daughter on the Stage ..

I am sitting on a tiny orange chair. It has a tiny bucket seat and four tiny black legs. This chair would be tiny for an oompa loompa. I am not an oompa loompa and I am exceptionally uncomfortable. I have twisted my legs up and around and hunched my back to try to fit my 6ft frame into this tiny space.

Beside me a newly-fitted air conditioning unit blows Siberian gusts into my ear.

I cannot move or complain. The curtain is about to go up.

The pianist begins -- a few jolly notes -- and two young girls begin to sing earnestly to each other, only the faintest tremble indicating their nervousness. The tremble is amplified and broadcast around the big room, where rows of adults sit, tense and obedient as leg muscles start to cramp.

Guitars and drums now join the song, swelling the melody and only just failing to drown out the sounds made by excited ranks of small people being assembled backstage. The curtain bulges alarmingly then suddenly eases, disgorging a pod of children who take their place at the side of the stage.

And there is Grace, right at the front, singing like every line is a hallelujah, her face lit up with happiness. Her kohl-rimmed eyes are huge and as she turns to address the main players my breath catches at the beauty of her profile.

As she turns back to face the audience she sees me and without faltering flashes me a brilliant smile. Her make-up shimmers and sparks. She is the most joyful I have seen her for months.

Later on, Grace sings four lines alone, proud and sweet. She has practised them for days. It is her big moment but the microphone has not been set up and no-one can hear her. At the back of the room the music teacher flaps her arms in panic and the assembled parents, with the timing of old pros, obligingly join in the chorus. Grace is oblivious, her joy undimmed.

Later that evening I line up children in our bathroom and set about removing their stage paint. J, my elder step-son, is a cheeky tiger in elaborate orange, yellow and black stripes. D, my younger step-son is a mutely mortified wildebeest, daubed entirely brown so that the whites of his discomfited eyes gleam in stark relief. It takes several baby wipes and a douse under the tap but eventually I reclaim their sweet little boy faces.

With Grace I wipe and wipe and wipe. Carefully, over and over.

But nothing removes her sparkle.

Monday, 11 July 2011

The horror, the horror

Imagine that you have a child whom you love very much. Now imagine that you go to collect this child after work every day. Now imagine that every day when you pick your child up its first words to you are: "Do I have to clean my teeth tonight?" Regardless of what you say to your child -- yes, yes of course, yes just like last night, yes because otherwise you'll get sore teeth,  yes you know you do, yes, everyone else does, yes, we've been through this, yes, come on now don't be silly -- your affirmative response will prompt anything from 20 minutes to two hours of negotiating, arguing, shouting, tears, temper tantrums or hysterical meltdown. By the time your child has brushed its teeth, you are both exhausted and swear to each other that it won't be like this anymore. The teeth will get brushed, you won't shout, you'll both be friends. You hug and kiss, exhausted.

The next day you go to pick up your child and the first thing it asks you is: "Do I have to clean my teeth tonight?"

This is what evenings with Grace are like, except that her question is: "Do I have to do my homework tonight?" 

To be clear: Grace's teacher does not give her masses of homework. What she does give her amounts to about half an hour on four nights a week. Or an hour on Sundays and maybe ten minutes for four nights a week. Subjects she must do can include spelling, story-writing, reading comprehension, maths, reading, occasional history or special subject assignments. Then there's piano and guitar practice. Some of these things take her five minutes. Some of them mean both of us sitting down together for an hour and a half. 

There are many and varied reasons for Grace to detest some of the homework she sometimes has to do, many of which are related to her having AS and have been touched on already in previous entries here. I am glad the school gives her homework. I think it's necessary for her to learn, it's a good discipline and much of it is enjoyable. She loves singing and playing music and doesn't want to give up learning her instruments. 

But the daily task of getting her to accept that she's got to do it is driving me mad. That sentence doesn't do justice to how it feels. It's not just mad like: arg this again. It's mad like proper, ancient, deep-in-the-brain lunacy. It's mad like the dark places poets and criminals and people in scary films go. It's mad like Sylvia Plath's wild, bald moon and the Joker's rictus grin. 

Sometimes I feel like running out of the house even as I'm thinking how much I missed her while I was at work.

Today to calm myself as Grace raged I counted up the number of days left in which I have to do this. It's two weeks til the end of term. There won't be any homework next week and most of this week's is done. So really I've probably only got one more night of this. I calculated that so far this school year we have had homework negotiations on 196 nights. No -- take off Fridays -- that's 156 nights, or 156 hours if I average out the length of time we reason or row.  6.5 days. So, nearly a week of madness. 

Put in that context, I've had another 51 weeks which are better, fine or even great.

So what am I complaining about?

Year Five starts in September. We can do it.

Tuesday, 5 July 2011

The meeting with the man in the suit

On days like this fury sparks from my fingertips and turns my stomach to ground glass and lacerates my tongue. On days like this fury makes me clench my teeth until my head hurts. On days like this I want to grab Grace by the hand and run until everything is far and we are somewhere else.

Today I sat in a room with a man in a suit, a teacher and a father and tried to accomplish the impossible task of rendering Grace in simple words, of reaching through the subjective and objective to present her flawed perfection so that they would see her and understand her and help her.

But it doesn't work like that.

First of all, the man in the suit had already decided, in the face of incontrovertible evidence to the contrary, that Grace is fine as she is and advancing well in her school work and social setting. This is so that he doesn't have to summon extra money for teaching that is tailored to her needs and for playground support to help her interact. In his picture the sun always shines, the classroom is a warm friendly place and all are working together to make progress. Thus he has turned down our request for a 'statement of educational needs'. He tilts his head earnestly as he speaks and distributes a 17-point criteria list, all while assuring us that he abhors 'box-ticking mentality'.

Also in the room is the teacher, who in order to change his mind and secure necessary extra help (and funds), has compiled a picture of Grace and her needs that is heart-breaking and hair-raising. In this picture Grace is a growling, pacing misanthrope. Violence is never far from the surface, schoolwork is all but irrelevant and tears and chaos reign. The teacher smiles sympathetically and twists her hands.

Watching and occasionally asking questions is the father. His account is different again. His Grace is intense but loving, bright and talented, prone to occasional eccentricities but largely misunderstood and mostly normal. He sees a lot of himself in her and it is this image as much as the rest that he protects. His eyes flash with impatient scorn as he follows the proceedings.

And me? I dance among them, hopping and cajoling and mediating. I wonder who is right. I wonder why my version of her tallies with none of the above. I wonder how much of it is my fault and whether I am doing enough to fix it. I wonder what to do for the best. I wonder if I'm doing things wrong.

And I wonder why no-one is really talking about Grace and what on earth I can do about it.

So I nurse my rage and I think. And I run.