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.



8 comments:

  1. ah.... big love to you. Bron is very angry at the moment as well. Don't know why. Just know she's angry. I have shouted back - and as you say, it really doesn't help. Just makes us both sad. And I do as you do, go in and smooth the hair & give her a kiss and say sorry. Again. As she does. And we reassure each other that we do love each other. And I know that we do. We just get lost sometimes.

    Love from our house to your house.

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  2. Hi Sophie,

    Gosh, that does sound really difficult, I'm sorry for you both. Have you tried getting Grace to do another anger management technique that doesn't involve shouting?

    E.g. bounce on a trampoline, hit cushions, punching the air like pretend boxing/karate, pretending you're hitting anyone who is the problem, or imaginary fighting whoever is the problem using whatever way and however much imaginary violence is required?

    The good news is that Grace does actually know she is angry. I'm so used to supressing my anger that I often don't even know that I am angry and it all converts into anxiety and into IBS and lots of pain. So, that is actually very positive although hard on your hurting hands....

    love Debi

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  3. Your insight is so powerful and beautifully written. I can't begin to express my respect for the parents of the children I work with. Best of luck for better days.

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  4. hi,
    reading about grace has been realy intressting for me especialy hearing abut how she deals with the things she dosent understand. im an 18 year old (girl) with aspergers and only found out about it a year ago. like grace i oftwn got angry at the things i couldent contol but i delt witht he anger mainly by crying and hitting myslef as i could not amnge to make any from of sounds. what you said about helping her contol the fear/ager of anything she dosent understand makes sence but i think (for me anyway) the best thing to do was let it come with time. over the past few years i have tought myslef how to deal with those things i feel compleatly out of my depth with (partys,loud music,drunk people as well as school, people and what to say to people and how to act around them) all of witch have brought me to tears on many an occation. im not sure im making much sence (sorry) but what im trying to say is that growing up can help bring about these changes and help grace not be defined by the aspergers but rather who she is. when i was about graces ages (10 or 11?) i would hind under tables/ cry/ hit myslef/ run away from everything i couldent undrstand. i know it will seem like a long way for you and her but these things do come. most of the time now i am good and hideing my feeling of discofrt and dealing with the situation faceing me. these things are never easy but from what i have read i feel sure grace will get though all this and come out the other side as her. wicth is the msot importnat thing. (im part way though reading your book btw and for an aspie it makes good if at some points defficult reading) much respect for both you and grace
    ailsa

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  5. oh also. i found that sport was a great way for me to work off much of my fustraitons and make friends (all my good friends). i climb and have found that the climbing world is not only very accpeting my full of people with ecentictys that ment i fitted in to a level with out much though. just a sugestion but maybe see if grace wants to give it ago?

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  6. Great thoughts you got there, believe I may possibly try just some of it throughout my daily life.

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  7. Thank you all for your feedback. Ailsa in particular - your insight is so valuable and much appreciated. Thank you.

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