Tuesday, 18 October 2011
Statement review and school update
Wow. Time is flying by and I've still not managed to get into blogging as regularly as I'd hoped. Starting the manic run up to Christmas now too, so sure there'll not be much time going forward for anything except shopping..... So I promise I'll get better at it in the New Year - same time as I finally get to the gym again....
Anyhow a very quick update for now. Sasha is doing amazingly well at school, which is lovely but also slightly unsettling, bizarrely. I think it's partly that once I find I don't have to worry about one thing, I feel a bit lost without the next issue to concentrate on! This week we had her statement review (every 6 months until the term after her 5th birthday, then just once a year thankfully). I was anxious before the meeting - I remember only too well how everyone told me I'd never get a statement for Sasha, and seeing as she has been getting on so well at school, I thought they (the council) may just take it away again.
It turns out I needn't have worried, as everyone is still in agreement that she still needs the help specified in the statement. Not that there's a lot specified, to be honest, it's not like she has a dedicated assistant or anything! It mostly just suggests tactics for the teacher, like small group work and visual timetables. The key direct help in the statement is speech and therapy, which I had to battle for after feeling let down by that service early on, and so now Sasha will get a visit at least twice a term from a speech therapist (SALT). I'm told this is a very good level of support, although personally I can't help feeling more intense weekly therapy would have been better - but then again I'm no expert!
Although she is doing so well, and I'm generally getting positive feedback, it is of course impossible to forget how different she is. Whilst she may catch up intellectually with her peers at some point in the future, it's likely that she will always remain behind with the social understanding. She may well get to learn her own 'triggers' for meltdowns and manage her unacceptable behaviour, but that's probably some time off, and even then that may cause extra stress and create more difficulty in her life.
Our book, PDA in the Family, is out now! We wrote it to help other people understand more about Pathological Demand Avoidance. It's an account of how family life has been for us since an autism diagnosis for our youngest daughter, and the subsequent lightbulb moment when we heard about PDA: PDA in the Family: Life After the Lightbulb Moment Book Launch
For more books about PDA, click on the image above. To hear more about our story see our 'About Us' page or the summary of our experience in Our PDA Story Week 35. If you are looking for more online reading about 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?
- Books about the Pathological Demand Avoidance (PDA) profile of autism
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Isn't a big sigh of relief when you meet with the school people and they tell you services are OK'ed for the next year. Whew! I'm glad the girls are doing so well and are thriving. Yay you!
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