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Saturday, 19 March 2011

Special Needs - ASD

This week I took Sasha for her 6 monthly check with the paediatrician who first diagnosed her back in January last year. She admitted that she does believe Sasha will need a Statement of Educational Needs (SEN) and that Sasha is one of the more 'challenging' autism cases on her case load. Although it's difficult to hear, I do like her honesty and I feel that because of her experience she has really 'got' Sasha despite only seeing her in short bursts. Some people who spend more time with Sasha than that will probably never really understand.

It was a bit like being hit over the head all over again, and I think it really is only just now that it has finally dawned on me that we do indeed have a 'Special' Needs child. Of course both are children are very special in their own funny ways but Sasha will not grow up in the same way that Tamsin does. Sasha's autism is challenging in the way that she needs to be in control of everything (and what toddler wouldn't like that?!). She doesn't have the particularly bad behavioural problems which can often come with this diagnosis - she's not aggressive, she can take turns and share, she's incredibly polite, she's affectionate, her motor skills seem generally OK and she's 'bright' in some ways (especially with numbers!). I think it's probably this last bit that creates the most difficulty for her - because she can learn some things exceptionally well, and at times appears to understand some advanced concepts, people don't really understand why she can't grasp the middle bits - particularly the social etiquette and 'unspoken' rules kind of things.

Sasha has been observed to go and take toys away from other children at nursery - she'd never grab them out of their hands, but she doesn't 'get' when a child puts something down for a second or two that they may be in the middle of playing with it still. She's just not aware of it. It is difficult to justify that, because on the other hand she is very aware that if she is playing with something, it's not 'free' for someone else to use until she says so! So it sounds very one-sided, but probably to Sasha, that's what all her life is like.

I now take her to a pre-school specifically for children with autism, and despite it being new and not routine, she loves it there. After just 3 sessions they describe her as 'always happy, and it's as if she's been here for months already'. They do make her do things to a timetable, and things she doesn't want to do (like having her nappy changed!). So I think with the right people - staff experienced in (and patient with!) autism - and if the scales are rarely tipped - expectations and activities managed - then wonderful things can be done and achieved.

I've said to many people over the past year that the brain is an amazing thing, and if I ever get more than a second to myself again I'd love to go and study it. Through quick flicking I think I've picked up that it is the left side of Sasha's brain which doesn't function in the same way as the masses... or is it the right?! Anyhow it does make me stop and wonder at how easily Tamsin has learnt so many unspoken things. The worry for Sasha, alongside not automatically grasping those types of things, is that she's not 'open' to being taught by others - i.e. she is definitely 'non-compliant'!! So I can see her struggling with the basics, such as reading and writing, and it's only now that I'm realising how difficult mainstream school will be. I'm still not at all keen on the other option though, which is Special School, as I'm not sure how much this helps integrate into 'normal' society at the end. I have recently heard about a private speech and language school, and although it feels too far away to send her daily, I intend to go and have a look round to see what advice they can give. My ideal would be a mainstream school with some sort of autism or speech unit/experienced staff, but of course they don't exist - well not here anyway.

I felt the need this week to finally write and complain about the lack of NHS Speech and Language service we have received since Sasha was first referred over 20 months ago. Whilst I know Sasha is a challenging case, it somehow feels more as if we've been ignored completely for that reason, and therefore she is getting no help at all. Reports have been written, but no direct therapy received. More irritating is the fact we know of others in the same county who have already had more input than Sasha. So frustrating, and to be honest not fair, that not all the systems and processes are equal.

We are about 5 weeks into the 10 week period the council have to draft a proposed SEN. We have been warned they are trying to avoid issuing Statements and they are giving out more of the 'Note In Lieu' instead. This means nothing legally though, so if one does arrive on the doorstep it means preparing a case for appeal - more battling, as if we don't have enough of that on a daily basis already!

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