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Wednesday, 15 July 2015

Is there a school for high functioning autism? This is our PDA story (week 15)

At the beginning of the year, I decided to open my blog up to other families living with Pathological Demand Avoidance (PDA) because I felt there were so many truths to tell about how this condition is affecting so many. Fourteen brave people managed to find the time to put some part of their lives into words for me, and I'm very grateful to them.

It occurred to me that now might be a good time to do a little update about our own PDA story.

Fairly regularly I get stopped and asked  'how is Sasha doing?' by parents, either at school or when I'm out and about.

The temptation to reply 'oh, fine, and Tamsin's not doing too badly either' springs to the surface occasionally, but for the most part I am pleased that people care so much. I don't want them to stop asking, support comes in many different ways and I am always grateful for it.

Sometimes I think I'm way too honest though, as I do find it difficult to give the 'fine' answer, which I know is what most people would like to hear. For the most part, my answer of late has been 'up and down', which does actually describe the life of a PDA family pretty well.

Life is unpredictable; we lurch from a weekend where Sasha refuses to leave the house (no, we can't make her) to one where we manage to achieve an almost 'normal' happy family outing - albeit punctuated with regular stage whispers of 'I want to go home now'. I look back on the family photo albums and appreciate that we have been able to achieve so much more with Sasha than I sometimes thought possible - but none of it has been easy. None of it is easy in the same way that it is easy for us to take our eldest daughter wherever we want to go, whenever we choose to go. There's always more thought, more planning, alternative choices (Plans B, C and even X) and the knowledge that it just might not happen.



It sounds crazy. I know. It feels crazy. As was once pointed out to me 'but you are the adults, you should be in control'. Some days it feels like we are not; Sasha holds all the cards. We retain the control by forward planning and managing life as much as we are able. We do this at the same time as trying to bring our eldest girl up in a way that we'd always envisaged for both our girls - boundaries, rules, routine, rewards. Standard stuff. There's nothing much standard about PDA.

Sasha is about to move into Year 4 at a mainstream Junior school. Year 3 has gone 'OK', and I measure that by the fact that she does still attend school every day without me having to drag her there. She attends, but she only occasionally takes part. She joins in with some sessions, on a good day, if the topic has caught her attention, but the rest of the time she spends sitting at her desk, on her own, in the corner of the classroom. Or she works outside the class with an assistant. She often chooses to read quietly to herself. She rarely records any work. As I walk up to the classroom every morning, I see beautiful wall murals with pictures and writing from all the other children, but hardly ever any done by Sasha. It's not that the school haven't tried; they have, and I applaud them for their effort.

I've always said that we are lucky that Sasha is consistent, and she acts the same way at school as she does at home. On the other hand it is a real shame; from time to time I wish she could conform just enough to get through school tests and assessments so we can really understand what level she is at. Her consistency has helped us immensely though, as I feel others have quickly understood when I've explained that you can't make her do anything she doesn't want to do. They may not believe me initially, but the PDA strategies are all that works with Sasha. I've had over six years of trying to perfect them; I'm not there yet. I know though, that I will continue to meet people in life who believe that Sasha should just do it, that we give her too much choice, and that being 'stricter' would work. I have to sigh inwardly, give them as much information as I can, and let them make their own mistakes.

Sasha needs motivating in a different way from all the other children. She is never going to be one of the pack, and this of course makes life in a mainstream school very difficult. Both school and Sasha have coped admirably up until now, but at any point, if the right support is not in place, there could be a breakdown. It has been proven already though, that with the right motivation, from the right people, in the right environment, Sasha can thrive.

Then we come to my biggest fear. The age of 11. Secondary education. It is plain for everyone to see that Sasha will not cope in a school where there are thousands of children and sensory issues galore; the idea that she would walk from one classroom to another to do any subject that she didn't care about is quite honestly laughable. Mainstream secondary schooling is unlikely to work and yet we have no suitable alternative provision for Sasha in this county.

In Surrey they do. Limpsfield Grange is a state run, small secondary school specifically for girls on the autistic spectrum. For girls who need a bit more care and support. ITV1 will be showing a documentary about this school tonight at 1040pm, and I am so looking forward to watching. I've met and talked to both teachers and girls from this school and they are all amazing. 

I wish we lived in Surrey. I'm not sure why our county cannot provide any establishment like this; it's not as if they can claim there is no need. Today I've heard of a child locally who is currently on a part-time timetable at Junior School, due to start secondary next year, and yet has been turned down for a place at a SEN (Special Educational Needs) school. Does the LA really think that if he is part-time now at Junior School then everything will magically be alright at secondary?! No, I don't believe they do. I believe that they don't have enough spaces at 'special schools', and that they are not taking into account the needs of all children in their county. Of course it all comes down to money; as a parent of a child with additional needs I am reminded of that frequently, which as you can imagine really helps in an already stressful life.

'Can't help won't' is the phrase I'd like to leave you with today. It embodies PDA in a way that nothing else can. This is not willful naughtiness, and 'just not wanting to do something'. It's the fact that PDA children can't help the fact that they won't do it. They don't choose to be naughty; it's the demands which cause them great anxiety and often lead to them looking for a way out. A brilliant article has been published on the Huffington Post today; click on Can't Help Won't to read it. It's not short but it explains everything about PDA so well. Please do read to the bottom - you may even see yours truly mentioned!



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For more information about PDA, please visit the PDA Society website at www.pdasociety.org.uk, or The PDA Resource

If you click on the links below they will take you back to previous weeks of 'This is Our PDA story' where you can get a flavour for what PDA life is like.















Week 1  


Linking up with the lovely Jenny from Let's Talk Mommy for #ShareWithMe.



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