Tuesday, 26 February 2013

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.

Monday, 4 February 2013

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