Wednesday 8 September 2010

Sad and Happy

A quick update tonight... the wrinkly fingers did continue to bother Sasha at swimming but we've managed to turn it into a bit of a joke now, so that's all OK!
Sasha tucked up happily
The past couple of weeks have been quite up and down for Sasha - generally she's quite happy and bubbly but 'high maintenance' with it. The dummy rule has stuck and she has been amazingly good about that, so we're pleased that went well. The next big 'issue' to tackle is toilet training... I'm building up to that one! Think she is more aware of the issue herself now, but 90% of the time will still say 'no' to sitting on the toilet. So next step is to make the toilet more appealing, and then it'll be cross fingers and go for it!

I was quite sad yesterday as I collected Sasha from her afternoon 'fun focus' nursery session, which runs from 1-335. Her name was down to do one of these sessions every week last term, but I rarely managed to persuade her to go as she was generally so tired and still needing a nap at that time. So I was very pleased yesterday when she seemed fine with the idea of going on the first day back of term, especially after we'd had a slightly unusual morning (Daddy had gone to work late so he could stay home and watch her whilst I went to listen to a talk at Tamsin's school, then after taking Daddy to the train station we had discovered we were locked out.... only for a short time, fortunately Daddy came back!). 

I practically skipped home to get the washing up done, then went to collect Tamsin from school and back home to get Sasha from nursery. When I walked in, I found her fast asleep, face down on a cushion with her jacket on, looking very hot and bothered. I was informed that she had got upset when they were about to take the class out for a walk, because she wouldn't hold someone's hand (although I'm not sure if they were trying to get her to hold the hand of a staff member or of other children) and they couldn't take her once she'd got upset and wouldn't calm down. 

Cue one almighty meltdown; Sasha basically burned herself out. So much so that she didn't wake when I lifted her up, and she also had a scratch on her nose - presumably from her own fingernails if she was putting up a struggle, although I'm not sure. There were so many other parents filing in behind me to get their children that I didn't really think to ask too many questions. Hopefully I'll get chance when I next drop her off. It just made me feel sad as I don't think anyone likes to think of their child as being upset when they're not there to comfort them, and because I understand it's not her being naughty, she obviously has her own reasons and issues to not want to hold hands. There are things we should not let her get her own way with, but maybe she could have been persuaded to hold somebody else's hand....

Today was a different day; we took Tamsin to school together for the first time, and although it took Sasha a while to accept that Tamsin's classroom location has now changed (I explained this but Sasha said 'no, that way!' about 20 times before giving up when I ignored the repeats), she was generally very well behaved and in good spirits. When we got home after that, she actually asked for her EYAS by name, despite the fact she's not seen her for 7 or 8 weeks, so I was amazed (and a little sad that she's not coming again until the week after next!). 

Instead we had a visit from two very nice ladies who are running the Earlybird course for us. This is an NAS approved course for pre-school children with autism - well more precisely for the parents, to help us learn strategies for coping with behaviour etc. It starts next week and runs for about 12 weeks with 3 or 4 home visits where they will video us and Sasha to see if there has been any improvement in the way we handle situations. 

Well, Sasha was on top form, very chatty and bubbly with these two strangers, although I'm not sure they managed to video much of that. At the point they started videoing, she stopped still right in front of the TV for about five mins. As I decided that wouldn't be a fair representation of her, I tried to get her attention, suggesting she sing Twinkle Twinkle. She said no and suggested back Baa Baa Black Sheep! Strangely though, I ended up singing that on my own, brilliant party piece. Hmmm. Oh well, it was nice to see her so happy, and that is how she is 90% of the time.

More often now at bedtime Sasha will decide that she is going to read the books to me herself, and I think it's very cute when she says something (in her own way!) for every single page, followed by 'The End' for the last page. I love that. Now she generally lets me read most of the words to her in a book if I'm reading, and it helps remind me how far we've come with the book thing since the flipping through pages stage. Her speech has also improved a lot, and I think her understanding and use of language are now not far off where she should be. It's just the sounds which are still fairly unclear. It gives hope though that these will also improve over the next year in time for school, so hopefully school won't be so tough for her.

Tomorrow's another day, never a dull moment in our household! 

To find out more about our experiences, please check out our 'About Us' page. If you are looking for more information on Pathological Demand Avoidance, the posts below may help.

What is PDA (Pathological Demand Avoidance)?

Ten things you need to know about Pathological Demand Avoidance

Does my child have Pathological Demand Avoidance?

The difference between PDA and ODD

Strategies for PDA (Pathological Demand Avoidance)

Pathological Demand Avoidance: Strategies for Schools

Challenging Behaviour and PDA

Is Pathological Demand Avoidance real?

Autism with demand avoidance or Pathological Demand Avoidance?

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