So, there's a million other things I need to be doing right now (like laundry, speaking to and emailing people re various matters etc) and some things I'd like to be doing (like watching Loose Women, reading Heat etc), but wanted to post as there is so much buzzing round my head at the mo and sometimes it just helps to get it out! It was Sasha's 3rd birthday last week and we have had quite a patch of good behaviour now - of course that always makes you question whether the diagnosis is right, but it does go up and down in cycles...
Today was the 4th visit from our Early Years Autism Specialist (who for privacy I won't name but will call the EYAS!). We now have a regular weekly slot where this lady comes to our house for an hour and 'plays' with Sasha, working on her behaviour and assessing her generally. She is lovely, and Sasha already looks forwards to her visit - although that is partly of course because she brings a big bag of toys with her each time! I don't sit in with them, but hang around within earshot so that I can tell what is going on. Sasha is given some choices and is sometimes directed what to do - and that is the bit where it falls down slightly. Today however it came crashing down in a big way after about 20 minutes, when Sasha was told she could only play with the cake game after doing the teddy bear puzzle. Now, Sasha likes the bear puzzle and has done this easily before, but today she decided she really didn't want to. So that's when the tantrum and tears started, she came to find me, and couldn't be persuaded to do it no matter what. It was hard for me not to console her, but eventually after realising I wasn't going to give in and neither was the EYAS, she stomped off, took herself upstairs, lay down on the bed and covered herself with the duvet and then went to sleep (which is how I now have time to type!). I then had a good chat with the EYAS who explained why she was being tough with her, but I understand totally how it needs to be, to try and teach Sasha some authority and prepare her for the school days ahead, and so I don't have a problem with someone else being tough with her. As long as they understand her, and don't punish her for that kind of behaviour, but work with it - which is where my big concerns about school and how she will manage start to creep in. I also understand that a teacher with a class of 30 children can't spend individual time with one child - but that may be what Sasha needs to flourish. She is certainly intelligent, as the EYAS has also commented on - she is quick to pick up and understand the puzzles and games. She just has to be in the right mood, or you have to know how to coax her into that mood - a very difficult feat which even I can't manage once she has started the downward spiral! I think we realised after talking it through that apart from the heat, and the fact Sasha may be coming down with the cold which Tamsin has had, her routine was changed this morning by us going to assembly (which she's not had to do before) and so her mood was probably not great even before the EYAS arrived today.
I am so grateful that Sasha was diagnosed early and that we are now getting this EYAS regular help, especially as she is so lovely. I can see Sasha building up a great relationship with this lady however, and doing what she is requested to by her, but I'm not so sure it will translate/cross over into the classroom environment. Sure the initial help and meetings will help the start of school, but Sasha can't switch her autism on and off during the day or on specific days, so what happens the rest of the time? I had a good chat with a lovely mum of a boy with autism who is already at Tamsin's school, and hearing her experience is good on the one hand as it means we can be more prepared, but on the other it makes my heart sink as I know it is all going to be a fight to help Sasha, and that is quite tiring (especially in this heat!). The trouble is, as she put it, when you've met one child with autism, you've met one child with autism. It's not really a condition anyone can understand fully, and different aspects apply to different children. Since the new ruling that any adults or parents can set up 'free' schools, I wonder if Aspergers or High Functioning Autism schools will develop, as these children need to be treated as individuals, but a specialist learning school isn't necessarily the best environment for them. They probably all need 1-1 care in a different kind of way though, so maybe home schooling or private tuition is best - but then of course that doesn't help them to learn from their peers about what the social norms are, the bit that they don't get. What really needs to happen is that the teachers, assistants, in fact anyone in contact with Sasha, all really need to be able to listen carefully to a detailed description of her character and remember what upsets her, and understand that her brain is wired differently. She is not intentionally naughty (most of the time!), she just likes routine but at the same time to be very independent and lead her own life. Flexibility is the key word - obviously she can't be allowed to do naughty things without being disciplined, but the type of discipline may need to be different to have the right effect, and just maybe the boundaries need to be a bit more flexible in the first place - does it really matter, for example, if she wants to play with dice for 10 minutes when everyone else is listening to a story, if she is after all doing what they want for the rest of the day? Of course even I don't know it all, or what the right answers are all of the time, despite spending all my time with her.
Guilt is something I think most mothers feel, whether it's not spending enough time with their children, not giving them the right food or not matching up to others. I feel guilty that Sasha will not have the 'normal' life other children get, and guilty that 'm not doing enough to help her, particularly with her speech. I'm guilty that Tamsin has to put up with Sasha's behaviour sometimes too, and that she doesn't get as much of my attention as she might have otherwise had. I felt guilty in assembly this morning, as Sasha did not of course want to sit still and watch/listen to what was going on, so I had to let her wander into the nearby classroom (where she found funnily enough a pair of giant dice that amused her!!). When another mum with a younger child is sitting nearby and doesn't allow her younger child to do that, it makes me feel bad that I do 'give in' to Sasha and let her do it. But the consequence of not letting her wander would literally be an assembly which no-one could hear or enjoy. Of course I would never have let Tamsin wander off (although she wasn't generally that way inclined anyhow!) but the difference is that there may have been a few tears from Tamsin, but she would have understood that I meant she needed to sit still and be quiet. Sasha would not want to understand that, and would therefore need restraining physically - and a gag in her mouth might do the trick but would be of course totally unacceptable! However despite the guilt my heart did jump and I couldn't help laughing, almost crying, at the point in assembly when the birthday cake candles were lit for the children whose birthdays it was, and everyone sung happy birthday to them..... Sasha loves this - she came running back in from the other classroom, and was the first to shout a big yay and clap very loudly at the end of the candle blowing, prompting everyone to look round and smile at her. Priceless! Thank goodness she is so good, cheeky and lovable most of the time, it more than makes up for the difficult times!
Right off to do that laundry now... and more on the speech therapy or lack of next time.