On trying to tame a cyclone

I can see the imprints of my nails in the palms of my hands.

Scores of small, angry red crescents from where I clenched my fists so hard this evening that I thought I might be sick with the effort of not shouting. (Really, properly, sick, onto the carpet. Just like that: bleugh, here it comes, stand back, whoosh, mind the splatter.)

Ha, if only. 

I can't be sick.

I can't shout. 

Grace is the only one who gets to shout. If I shout, all is lost and the situation tips away from us both and we are shipwrecked.

So Grace shouts and I listen and I clench my fists and I speak quietly through gritted teeth and I feel sick and my heart clatters in my chest so hard that I think sometimes I'm going to have a stroke. 

Grace shouts a lot, these days. She shouts about a lot of things. The things vary from day to day, but the shouting is constant. Mainly, she's shouting about her total inability to process her frustration at things she can't do, or things she doesn't want to do which she finds she must.

Grace doing things she likes and can do is a summer's day. 

Grace confronted by the rest is a cyclone.

I am trying very hard to limit the things she has to do which she doesn't like to do.

I am trying very hard to limit the things she can't do at all.

But I can't get rid of them all.

And, I confess, there are some things I don't want to get rid of because I want her to learn to cope with them. 

If I get rid of everything that annoys or distresses her what chance does she have of living some kind of normal life? 

I have to find a way to help her find a way, I think. I have to help her to see that she cannot blow her top every time she becomes frustrated. I think. I know that she finds this very very hard. But, I think, I have to help her see that there are ways to control her anger and her fear and her sickness at being unable to control every situation in which she finds herself. I fear that otherwise, her autism will define her more and more and drive her further into isolation.

I think.

Won't it?

I look at the red weals on my hands and I wonder what the hell I'm doing and whether I'm still doing it right.

The last two weeks have been very very bad. I am very tired. Grace is very tired. 

Tonight she screamed so hard as she threw herself on the floor that I was frightened our neighbours might think I was hurting her. The effort of not running to her and grabbing her arms and hauling her up and shouting at her to stop made running that bloody marathon last year feel like running for the bus. But I didn't shout. (Go, me. I didn't shout.) I stood in the doorway of another room and I told my daughter what I thought she should do to resolve the situation and then I shut the door and left her to shout it out until she had to think it through for herself.

In a minute I'll go back up to her room and tuck her into bed again and brush her hair off her face, like always, and tell her, like always, when she asks anxiously in the aftermath, like always, that I do still love her and always will and that I'm fine, really.

It's just - my hands hurt.

Here am I floating in my tin can..

Tonight I feel more like an astronaut than a parent.

I feel as though I am floating a million million miles above the scene around me.

There is a white room, and small plastic tables dully reflecting the strip lighting above.

There are coat hooks and gym bags and the artwork of near-adolescents lining the walls.

There are groups of parents - mostly women, with one or two men dotted about - sitting in groups around the tables. They greet one another and nod, and smile. Occasionally they whisper to one another, or laugh gently.

From up here I can see what looks like me down there, sitting to one side at a table that seems slightly set apart. (Or maybe that's just the way it looks from up here in zero-gravity. Excuse me while I adjust my visor. This protective suit can skew my perspective.)

At the front of the room the headteacher - yes, we're back in school, again - talks. She is talking about forthcoming exams. She is calm, assertive and knowledgeable. She is friendly and reassuring. She has done this many times before - both the tests and preparing the parents to prepare their children for the tests - and, frankly, she thinks it's a bit of a waste of time. But it's got to be done, so she's telling us how we'll all do it.

I am wondering how we'll do it, Grace and I.

But more, I am wondering how it must feel to be one of those other parents. What are they thinking, I think, as I float. What is it like in their world, where they arrive, and sit with friends, the parents of their children's friends, and exchange small stresses and questions about this process, while knowing that, basically, their children will be fine.

I pause and adjust my zero-gravity boots, and examine that last thought, while someone asks a question about grammar. No, I think, I'm not exaggerating. Their children will be fine. They won't start screaming when the extra homework starts after half-term. They won't prowl the house for hours at night when they can't get to sleep for worrying about it. They won't wake screaming and cursing on the mornings of the exams. They won't get grades suggesting they are well below the national average. They won't be the ones embarrassed and hurt when the class exchange results (even though this is banned, it will happen, and my daughter will suffer.)

Well, one or two of them might.

When I look closely there are a couple of other parents who smile and say hello to the figure that looks like me. One of them even asks how Grace and I are doing.

When I look closely, I can see that the headteacher is looking at me with a smile and raised eyebrows and a thumbs-up, to gauge how I'm feeling and check that I (and by extension Grace) are feeling ok about this. And now I remember the reassuring email she sent before the meeting to say that my girl would have all the help she needs to help her perform at her best and show what she can do, when she's not worrying.

It's weird up here in this suit. It's sort of nice and sort of not. It leads to far-away thoughts. It makes me think there is more distance than perhaps there might be.

My daughter often feels like she's from another planet and as though she needs help interpreting this one. She does a great job most of the time. She needs me to be in the control room, not bobbing around up here like a space tourist.

I think maybe I need to talk to Ground Control about coming down soon. 

We've got another project to start work on.

Image by NASA, not me

The longest-lasting winter

Call me slow, but it has occurred to me that this blog is an exercise in saying the same thing in a lot of different ways. (If there are readers among you who have already rumbled this, I can only apologise.) But then it has to be, because this is my life with Grace now.

This morning it is homework time. Cue the same weekly argument in different words. Like Groundhog Day, with knobs on. My daughter is already yelling at me and rolling her eyes at my stupidity in Not Getting that she shouldn't have to do it. (Imperial Free Pass? Divine Right?) As her aggression and agitation grows, I feel like doing a Captain Oates - walking out into the snow and never coming back. Or at least not until I can find Punxsutawney Phil to release us from this unrelieved cycle of torment and signal a change in the season.

Parents of other autistic children have told me to give up on Grace's homework on the grounds that it's not worth the stress and distress. On Sunday mornings my daughter now wakes growling and fully-charged, prepared for the weekly torment. There are no preliminary skirmishes any more: she flies at me a shrieking, railing Fury.

I wonder whether her increasing, dismaying, mind-blowingly frustrating recalcitrance is because my clever girl is onto me, and the system. She knows that there is an 'out' under the arrangement that now provides a statement of educational needs for her. She knows that there is an acknowledgement of her areas of difficulty. I wonder whether she is seeking to redraw the terms of our deal - in which I bow out, and shut it all down when it gets too much - in her constant quest for control. I am so frightened that as she grows up, butting more and more against an educational system and social environment that accentuate her differences as the years pass, she is seeking to escape rather than engage.

More and more of my requests these days, whether they relate to homework or not, seem intolerable to her. Increasingly, she finds it hard just to say 'Yes.' Increasingly, she rejects expectations and demands. "I find it really hard to say 'yes' to things I don't want to do, Mummy," she tells me. "It makes me feel all fizzy and sick inside."

So today I ask myself again: why am I still doing this? Why don't I just stop? Grace doesn't understand homework because she doesn't understand working at something to get a better understanding. In her world, you either get something or you don't. She sees her step-brothers bend to their schoolwork and believes they have an innate ability to answer questions on maths and science that she lacks. She thinks I can speak French because I was born to be able to do it. She thinks her father is good at maths for the same reason.

I want her to learn. But more importantly, I want her to learn how to learn. I do not think, yet, that this is beyond her. I'm not ready to give up on my daughter yet. She is capable of doing most of the homework she is set. Even the bits she finds hard, even the bits she boggles over, we can usually address to some extent. I don't want to send her the message that she's incapable, or so different that it's not worth trying any more.

Outside, it's still snowing. It makes me think of the permanent winter of Narnia imposed on the inhabitants of that land by the evil White Witch. It makes me think of the Hans Christian Andersen fairytale of The Snow Queen - which terrified me when I was little - about the boy with the splinter in his eye who is stolen away into a never-changing land of frost and ice from which he can never return.

In the end, I have to give up on the homework for today. The shouting and the distress made it simply ridiculous to continue. Now Grace is in my arms crying. This noise too is immense. As I hold her and kiss her and shush her I wonder how long Grace and I are to spend in this endless pattern. I look outside at winter. I want to walk out into it until it muffles the shrieking. I want to walk out into it until it blocks my ears and eyes, and all I can hear is silence.

Most of all, though, I don't want it to be winter any more. I just want it to be spring.

Starting term, without a paddle

Grace is talking at me, louder and louder and faster and faster.

She forces me to shut my mouth and hold in my head the conversation I want to have with her. She forces me to listen while she changes the topic of talk. She makes me bite my lip and tap my toe and squash down my own need to get her to listen to me, to me, for just a minute.

She is taking control.

She does this now because tomorrow is the start of a new term. She does this now because she needs to assert her own interests at a time when she feels an alternative agenda is looming large: one which she does not like and in which she does not want to participate. All day today and all day yesterday the stream of consciousness of Grace's thoughts - the manner of communicating which she so prefers to the tedium and confusion of conversation or small talk - has flowed faster and faster and more turbulently, like river water swollen by storm rain.

All I can do is bob helplessly along in the current. Each time I attempt to stick my oar in and control the direction, I am tossed aside.

Right now, at this precise moment, Grace is talking because she knows I have come to switch off her reading light and tuck her into bed and kiss her goodnight and tell her that I will see her in the morning when I come to try to get her to wake and get dressed and ready for school. She is dreading this prospect as much as I am.

So she talks.

She talks about the chapter of the book she has just read, and the thoughts she has had about it. She talks about her own book, the story of a misfit girl with magical powers, that she is writing inside her head and drawing in page after page of her art books. She turns away from my gaze, hunching her shoulders under her duvet, so that she cannot see me trying to butt in, so that she doesn't have to try to read what she suspects is my expression of impatience. She has turned so far away from me that she now has her back to me entirely. I am left on the outside, foiled and frustrated.

Still she talks.

Irritation is rising in me fast. I too have to get back on the treadmill of work and routine tomorrow. I have cooked dinner and bathed children, laid out clothes and checked for shoes and schoolbags and hats and scarves cast aside with glee nearly three weeks ago. I have combed nooks and crannies all over the house to assemble kit and outfits. Then I have combed hair and read stories and promised just another half an hour, another ten minutes, ok then five more, before the lights go out.

And still it's not enough.

The bubble of temper inside me is building. My heart is beating faster as I stand like a chump, ignored by my daughter at her bedside. (She is very good at ignoring me while simultaneously talking to me.) I can feel my patience fray as her ceaseless words saw away at it.

I tell her that her story is interesting but that she has to stop now. I tell her that it's better to keep stories short because then they're more interesting. I tell her that she can tell me more tomorrow. I tell her that I'm going to count to three and then she has to put her book down. As I talk she continues to talk over me, turning the pages of her book faster to look for more things to tell me about, rifling faster and faster until -

"Grace!"

I have shouted. And she has subsided, and turned such a look of disappointment and dislike on me that I feel it pierce like real pain.

She pulls her eye mask down and arranges herself flat and stiff beneath the covers. Into the silence I tell her goodnight and switch off her light. I kiss her unresponsive mouth and leave the room.

As I walk downstairs I remember how, in the car, when we turned the corner into our street yesterday on the return from a long stay with beloved grandparents in the north of the country, she said from the back seat in a small voice: "I am feeling very nervous about going back to school Mummy."

So I pause and go back upstairs. I kiss her again and say sorry for shouting. She mumbles that it's ok. I tell her tomorrow will be fine. She mumbles: yeah.

I go back downstairs and try not think about how tired I feel already, even before school has started.

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.

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.

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.