Tuesday 20 April 2010

Ups and downs - not just on the trampoline!

Well hello again, ages since my last blog I know, but that's how it goes I'm afraid! Been a very up and down time for me, but that's starting to sound like my last post again....

Chris and I did go to a support group-type meeting last week, mainly to get an idea of what it was about. Lovely people there, although a lot of the content wasn't relevant to us (talking about specialist secondary schools education). We did get chance to meet the lady from the local Autism Advisory Service though, so hopefully someone from there should be in touch with us this week... although nothing yet of course. We're waiting to hear from them now before deciding what to do about speech therapy, as they may have some good advice. I believe we get a nursery nurse allocated to us who will come round and spend time with the family, getting to know Sasha. A lady from the Parent Partnership did call but missed me (typical) so I've called back and left a message (story of my life recently) but I'm not exactly sure what they do to be honest. The lady from the money advice unit called to arrange meeting to help me with filling in the DLA forms, but then promptly called back to re-arrange, so that's end of next week now. So at least at last something has been happening, even if it's not very much at all!

Visited old friends over the weekend as a family and another friend with Sasha this morning, and she enjoyed the trampolines there.... have a feeling we need to make a purchase! She was fairly happy today, until she woke from her nap, and then this afternoon/evening was one of those where nothing was pleasing her, she didn't really know what she wanted, except for a cuddle most of the time. It's difficult turning fishfingers with one hand, believe me! Then of course she cheered up and was full of beans just in time for bedtime - so much so she dropped and forgot about the ice cream I had given her (and so had I forgotten, my mistake, more clearing up) and then while I was getting things ready downstairs she had already disappeared upstairs to play in the toilet bowl. This usually (as in it's happened 6 or so times before) involves shredding lots of paper into it and sticking her hands in, but today I think I surprised her so much with my loud 'no' as I came around the corner that she dropped the whole toilet roll in. Fortunately there wasn't much on it but of course muggins here had to fish it out. Oh joy. She doesn't really understand that what she is doing is naughty - or actually it's more like she does understand, but won't remember and take it in and it won't stop her from doing it again. Still, maybe she did slightly appreciate I was upset, as bedtime was a bit quicker than usual - her routine now generally involves 3 or 4 books, with the main light off, and then maybe milk, followed by me lying on the bed and cuddling her, then trying to leave her several times before she'll let me go without a 'paddy'.

I have been watching the Channel 4 programme, Young, Autistic and Stagestruck, which is on Monday nights. The first one was very difficult for me to watch, and quite upsetting, as although it is a brilliant idea and well filmed, it did make me think about the future and what it might be like for Sasha and for us. Still so difficult to say as she's so young, but at the moment I'm going through a phase where I think I've been in denial previously and actually the truth is that she's not so 'mildly affected'. I can't imagine her going to school and sitting in a classroom, doing what she's told, which is really quite difficult to think about. It's still some time off but we will have to make sure support is in place - there are sadly no miracle cures for this condition and she won't grow out of it. So think as I've been told by others, there is no point thinking about the future too much, we will just have to wait and see, and do the best we can. She is of course still adorable, even when she's being 'challenging'! Meanwhile Tamsin is 'trying'.... ;) but we love them both so very much.

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