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Monday, 4 April 2016

AAA Day Four (April Autism Awareness)

Today I'm carrying on with retelling our story, for Autism Awareness month; the previous three days I've gone over the very first posts on my blog and explained the reasons for starting it.

Posts four and five, from January 2010, were written days after the suggestion of a diagnosis. You can see they are where the real questions started to fill my mind, every waking minute. From what I know now, I'd say these are fairly standard thoughts for many parents given a diagnosis for their child like we were, but of course back then I'd not had chance to talk to many other (if any) parents in a similar situation.

Sasha looking deep in thought. This was her way of saying 'enough' though. When it all got too much for her, she would lie down (or crouch, if on a gravelly floor!) and become like a sack of spuds. For her, meltdowns have mostly been about refusing and avoiding rather than become outwardly/visibly agitated or aggressive.
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Post Four: They say Mums always know best, and I'd have to say I agree. As the days go on I'm trying to take things in slowly, but I think it's already dawning on me that my first assumption that Sasha must be borderline is not necessarily the case. Several friends and family are almost disbelieving - 'no, how can that be?' 'but she's such a happy contented little girl' - so either they're good fibbers or it's really not obvious to others. However, as I spend so much of my time with her, all the little things do add up - yes, I know that lots of toddlers like to eat from certain plates or drink out of certain cups, and don't like to wear their clothes sometimes... my elder daughter's insistence on only purple juice or pink plates for over a year may have been a 'sign'.... but with Sasha it's different. It's more than that. Many little things from each of the three 'impairments' as they're known - social interaction, social communication and rigidity of thinking. And then again, so many things she does seem to understand and do - she knows the difference between right and wrong, she can tell facial expressions and tone of voice, she will pass Tamsin's toys back to her and share well - when it suits her! But if the signs have already been spotted by a professional who only spent an hour and a half with her, then possibly they're not as borderline as I thought - when you know what you're looking for. At this stage my biggest fear is that the gap will get bigger and the struggles more profound as she grows older - the best reason there is for fighting for as much help as we can get as soon as we can get it. Will mainstream school be an option? Only time will tell I guess.

Post Five: OK so am feeling a little tearful today, but not sure if that is due to little sleep thanks to a bout of sickness and d last night - always helpful when hubby is still away skiing! Still feeling rough so not sure how much I'll be up to today....

This 'borderline' issue is what is still at the front of my mind today - I know everyone means well, but I'd rather people faced up to the situation than try to brush it off. Of course there's no point worrying endlessly about the future, but forewarned is forearmed and the more we can read to understand, and the quicker we can get things moving with the professionals will all be the best we can do for Sasha. It's not going to just go away, with help it may improve, but we do need to be realistic and face the fact that it could get worse. Of course I'm sure any parent of a child with severe autism would rather swap and be in my shoes right now, but that doesn't really help.

So I titled this blog 'stephstwogirls' because I am very conscious of not wanting to turn everything to be all about Sasha. I hope up til now we've had an even balance in our family and the last thing I want to see is for this to be tipped in any way. Tamsin is wonderful, enjoying school and learning so much - we're so proud of her. I'm wondering now when and what to tell her about Sasha - she's already so understanding about lots of things, but is this too much to put on her so young? Or will she end up wondering what all the doctors appointments are about and feeling left out if we don't explain? Although we will carry on teaching right from wrong and not letting Sasha get away with unacceptable behaviour, there are times when it is easier to bend the rules - such as not quite so strict mealtimes, letting her watch the DVD she wants to avoid a meltdown etc. I don't want this to start affecting Tamsin's behaviour, so feel that we will need to 'have a chat' - but how to explain? How much to say? Don't really want to turn it into a huge issue for her either, think we need to keep it lighthearted if that's possible!

Right back off to bed for me (well after some hoovering!) and maybe try to think a bit less for now.
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For more information on autism please do visit www.autism.org.uk and for more information on the specific type of autism Sasha has (Pathological Demand Avoidance, or PDA), please visit www.pdasociety.org.uk.


For Day 3 of our story please read: AAA Day Three

For Day 2 read: AAA Day Two

For Day 1 read: A is for April and Autism Awareness





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