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Friday, 19 March 2010

So, a long time again since the last post - not unusual in the world of blogging from busy mums I'm guessing!
There has been so much I've wanted to write about, but never really feel I have the time to do it - in fact, I never really feel I have the time to do anything at the moment, feel constantly pressured about everything there is to think about and do!!

Had another lovely weekend away, with old friends, and all went fairly well, apart from the occasion when Sasha decided she wanted to leave the park early, before everyone else was ready to. I can imagine other people thinking 'why don't you just make her wait', or 'try and distract her' but sadly it's just not that easy - once she's made her mind up about something, that's it and there's no amount of persuasion can work. In this case she had just walked off and kept going, barely looking round, and if I hadn't followed her she would have just kept on going anyhow. There would have been no point picking her up and coming back, as that would have led to a tantrum - not particularly what I wanted on Mother's Day! Restraining her is one thing guaranteed to distress her. It may be true that that is similar for a lot of toddlers, but the difference is that with most others you can talk them round, explain it and offer distractions etc, but with Sasha once the mood is upon her there is no way she would listen or be reasoned with, or learn from the experience.

Having said that, I have of course plenty of experience of Sasha's moods being 'up and down' - she can seem inconsolable one minute and then be her usual happy, funny self the next. The main problem with that is the inconsistency and the not knowing what exactly is going to upset her. I can see Tamsin struggling with that, although she is learning, as we are, some of the things that will set her off - being shouted at for example, or being told no!

I had a meeting with her nursery this week to update her IEP (think that stands for Individual Education Plan - something done for Special Needs children but maybe also other children with learning 'challenges') and it did dampen my mood (on a high from the lovely sunny, warm weather!) slightly. They are very good, and helpful, and pro-active, but they said her behaviour has become more 'noticeable' now she's in nursery for 2 whole days and following a more structured day, and they did kind of floor me by asking for my help/advice on how to deal with Sasha when it came to calming her down from the 'flashpoints' (as they called them, quite a good description I thought). It was then I realised just how much time I spend trying to avoid getting to those flashpoints in the first place. It can be a bit like walking on eggshells, but I think I'm so used to it now that it doesn't stress me out all the time, only on her particularly bad days where nothing is good enough for her and she doesn't really know what she wants herself, depsite me offering anything. I make sure, for example, that she is constantly topped up with food and water, as being hungry or thirsty is something I've noticed will definitely affect her mood. But it's so much more than that, and very difficult to explain. I don't spoil her as such (well no more than I do Tamsin!), and I don't let her get away with any deliberately naughty behaviour, but then she is rarely deliberately maughty, and doesn't do anything with malice. The 'Naughty Step' idea just wouldn't work for Sasha because at this stage however much I explained it, she just wouldn't 'get' the concept. But I can't help feeling that most other parents will just look at me and say I'm not being strict enough. I know I'm not a strict mum anyway, but I hope people see that Tamsin is growing up to be a polite, well-behaved little girl anyway; I think it's somehow ingrained and to do with genetics in a similar way to autism!

Spoke to another mum of a child with Aspergers recently, and she did say how you have to develop a thick skin - I really do have to accept that people will be disapproving and leave them to it. Of course we have lots of great support and good friends which is lovely. I read a great saying in one of the books I've been lent - 'those who mind don't matter and those who matter don't mind'. Think that will have to become my mantra!

So off now to make a million phone calls (so it seems) to chase - for the actual written confirmation of the diagnosis (not yet landed on our doorstep), speech therapy information (when and how much), information on various courses and groups and see what I really need to be doing to help Sasha - and us as a family.
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Monday, 8 March 2010

So, just a quick post tonight as I haven't been on in a while. Been very busy with preparations for my brother's wedding, which took place on Saturday and was a beautiful day. We were all very happy for him, and of course it was lovely to see other family members there too. Sasha wasn't exactly on top form, and due to a lack of decent sleep on the day itself she was quite demanding, but no serious mayhem!

Have felt rather up and down about things lately so have resolved to pull myself together and get back to thinking positively about the next steps. Will see the school head this week, Nursery next week and Tamsin's teacher the week after, so some talking to do but at least it should mean action. Still frustrated by the lack of speech therapy, and of course no contact from the Autism Advisory Service yet, but of course they're busy. In the meantime more reading to be done, and sleep to be had, so good night!
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