Another 'up' was the visit from the EYAS, who repeated that she thinks Sasha is very intelligent, picks things up very quickly and can quickly run through all the puzzles and games she brings each week and more. This should mean mainstream school will not be a problem for her as far as the learning goes, if we could just find a way to get around her perfectionism and not wanting to take direction or ask for help. Hmmm.
The trouble is she can be so good, and therefore probably doesn't need 1-1 care all the time, but there are the times when if one thing is slightly wrong then everything else will be wrong and the whole day goes downhill. Will this have improved in a years time? We have to hope so, but maybe our school decisions will need to be taken or changed very late in the day according to what has changed with Sasha.
The EYAS also agreed with me, rather than the speech therapist, that Sasha's understanding is generally very good for her age - she will understand (and follow, if it suits her) an instruction such as needing to turn the bottom half of a puzzle in a certain colour upside down in order for it to fit, or that a piece is missing behind her. But as the EYAS left, and told Sasha that she would see her tomorrow at nursery, it was obvious from the blank face that that particular bit of news hadn't gone in or been understood at all. I think it's the time concept where she is still most behind with understanding - everything has to be now or in the immediate future, anything 'later' doesn't make sense.
Downs of the day I won't dwell on, but included the usual not walking to and from the car (i.e. and wanting to be carried, which is getting to be very hard work), the newly found reluctance to have a bath or go to bed ('not bath! not bedtime!') and of course the time I returned to the lounge after only a moment away to find the sofa cushion and carpet had been scribbled over with felt tip pen. Unpredictable is the word I would use most at the moment!
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.
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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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Sounds like our lives are the same in so many ways , and you know what the good thing about mainstream is that Sasha will have good role models and she will copy which is what James does all the time but thats good . The EYAS job seems to be a very easy one and for me to state that is because our children are probably always going to struugle with turn taking , James has no imaginary play and you can't make them gain that , as for the nappies it may come it may take a little time and for the dummy , I actually spoke to a mum today in james class whose daughter still has one and her comment was they will give it up when there ready I think that is so true . One bit of advice I can give to you is that IT DOES GET EASIER , truly as they grow up it does you will have developed an understanding of what works and what doesn't , I know I had a crap weekend looking back because I hadn't prepared James , we did too much and the places we went were so so busy so what do I expect thats when I look at myself and realise that yes I have a child with special needs and no the world can't and won't always be perfect but we as parents can help them be happy and calm within it be taking little steps xxxxx
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