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Saturday, 2 April 2016

AAA Day Two (April Autism Awareness)

Yesterday, I took you right back to my very first blog post and how I felt after our youngest girl was given a diagnosis of autism.


As I look through old photos to find some of Sasha from that time, it is very obvious that there are many more photos of Tamsin than of Sasha. Tamsin was generally happy to pose for the camera; Sasha would rarely stop and look at it even when asked.
My second post, entitled 'Day 2 - denial?', is quite revealing. I didn't hold back on how I was feeling, and I think the word that sums it up best is 'confused'. We were sent away from the paediatrician with one little booklet, and a flyer or two about local support groups, but it wasn't a lot to go on. That's fairly standard. There had been a great Government initiative previously, called Early Support, which was intended to help parents of children with additional needs at that first stage after diagnosis. As with many great ideas, the execution wasn't followed through all that well and when the money petered out (as it always does), the scheme pretty much became like a needle in a haystack - i.e. very hard to find. I happened to stumble upon an Early Support course a year or so later, and went on to train other parents because I believed in it so strongly - and still do. It was a lifeline to me at a time when I needed it.


This was one of the images given to us on an Early Support course which has always stuck in my mind. It helped to be given that extra boost of confidence; to be told that we weren't failing at parenting. I knew that of course, as I had an older girl, but so many families need this kind of reassurance.
Anyhow, I digress. Here is the second post I ever wrote on this blog; I hope it gives you an idea of some of the thoughts which swirl around a parent's mind after their child is diagnosed with autism.

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So. Where to start today? After an OK-ish nights sleep (considering I have tonsillitis and was awake lots to drink!!) I've awoken with lots of questions still. My head is buzzing. First, to tell people or not? Of course it's nobody else's business, and they don't need to know, but in a selfish way I'd like to say, as maybe people then get to understand a little bit. It's not just her with bad behaviour, or me being a terrible mum. It might explain why I haven't gone out as much with my second child - I rarely do supermarket trips with the girls, have stopped toddler groups with them as youngest wouldn't join in and am careful about where I go and at what times. It is a big thing to me, and of course we know lots of people. I want to just put it on my Facebook status, but am sure that's possibly not the best way to spread this kind of news. A few close friends already know but I feel tired at the thought of telling all the others.

At the same time I'm still really in denial about it. Our little girl is gorgeous and just herself, if she does have this (see, 'if' - not yet fully agreeing) then it's definitely not severe at all... but is that what all parents say?! I was given a great booklet by the paediatrician explaining the basics and what support there is, and one of the first things it says is 'it's not your fault, it's just how they are'. And yet I'm still questioning things I've done, trying to remember back and wondering if it was my fault. I have to admit I almost cried this morning when my eldest told me she loved me, and my first thought was how sad it is that youngest might not actually say those words to me. But then again of course she might - she says lots of things now in her own little language, and several that are recognisable, and that has improved over the past 6 months so why might it not develop more? I guess the uncertainty of what is ahead is something I am now going to have to get used to.

Someone's first reaction when told was a short silence and then 'well that was a quick decision wasn't it?' - i.e. too quick, how would they know when they don't even really know her? I can understand that, not really wanting to believe it, that she's just a normal child that we love very much. And it was a quick assessment, and isn't even definite yet. But I did spend an hour and a half with the doctor, who asked me lots of questions, let our youngest girl play and do her thing, and then tried to interact with her. It dawned on me even more as I was in that room that she doesn't do things 'right' for her age, and having read the booklet since, there's lots in it I can identify with about her behaviour that makes me think it wasn't a wrong, snap decision. But she is maybe on the fringe, her behaviour isn't terrible and doesn't make people stop and stare. She has recently started doing some role playing, like pouring cups of pretend tea etc - so maybe she's still just learning and growing, is just behind with development? See, there it is again, the disbelief.

So on the one hand I'm happy to have a quick decision and hopefully some answers/support/advice at such a young age and without fighting for it, but on the other I'm thinking 'well they can 'label' her as that now, but maybe she will grow out of it and we can forget it later'. Not sure it really works like that.....
So I'm off now to tell a few more people, and I thought I'd start with my local NCT group fellow emailers to see if anybody knows of someone locally in the same situation - as they say, it's good to talk (just not with tonsillitis ;) )

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Back when I started this blog, it was more of an online diary for us, to keep notes of what happened to our family more than anything else. I didn't expect it to grow and be shared with quite as many people as it is today, but I can say that I'm quietly pleased that I've been able to help others along the way. If I've been able to let just one other mum know that she's not alone in feeling the way she does, or if I've passed on relevant information which will ultimately help a child, then it was all worth it.

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 1 of our story please read: A is for April and Autism Awareness



This post is also a blog hop! If you have posted about autism then please drop your link in the linky below. To put the blog hop on your post please get the InLinkz code



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