Monday, 1 June 2009

So We'll Get On With It...

I've not said a lot about Sarah, her condition, her behaviour, her just being Sarah for a couple of weeks. The reason is that she has been exceptionally awkward, no, I should have said difficult, that would be more honest. We have had some days that have left us reeling, knowing that whatever is done is going to be wrong.

This is nothing new, it happens every now and again with no warning and can last a couple of months sometimes. She appears to be working something through in her mind, and because she cannot express it beyond herself... probably because the autism would incline her to believe that we know what she is going through and what she is trying to work out... she is is beside herself with rage.

She gets so frustrated with whatever it is that is bothering her at the moment you can see her almost graphically reaching boiling point. She shudders and shakes, gets redder and redder, becomes less and less coherent and then it all culminates in some very loud screaming and a little bout of hitting her head or biting her arm, although I have to say, there is some remarkable control involved with the self harm bit of this display, which leaves me wondering sometimes how real the rest of the display is. It could just be the best way she knows of expressing her frustration with us for not knowing what she is so concerned about, brought about because of the absence of sufficient language or rather, the inability to use the language in a neurotypical way.

In between all this there are moments of sheer joy. We spent a day in Cardiff last week, went to the cinema and saw Star Trek, had fish and chips in Caroline Street, got back to Aberdare to late for a bus home so had to get a taxi and the whole day was brilliant, nothing appeared to bother her at all. The next day was the absolute opposite as she took her frustration out on me. I've got a couple of little bruises as reminders!! She is always mortified when she gets it so wrong she hits me and I always feel so sorry for her when it happens, thankfully it is a very rare event.

This sounds awful doesn't it? But it's not all that bad, and we are used to it. It is important to say that it is not continuous, and of course it is manageable. It wears you out, that's for sure, and there are the odd moments when I consider throwing the towel in and calling social services and visiting the doctor on my own account instead of the fruitless visits on Sarah's behalf, only to be redirected back to the community nurse, who then sends us back to speech therapy. Sarah is 23 and has not seen a doctor, that is GP or specialist, concerning her autism, since she was 10 years old. We were seen to be coping and that seems to be the criteria used when assessing need.

So we get on with it. We know it will stop soon, and when she left for the Day Centre this morning you would not have thought the last few days would have been possible, perhaps we have turned the corner on this one, we shall see...

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