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Sunday, 3 April 2016

AAA Day Three (April Autism Awareness)

One of the few photos of Sasha in the first half of 2010 (after diagnosis) where she is looking at the camera. I remember this day well; it was her older sister's birthday party and she coped so amazingly and unexpectedly well with it, joining in with the games and managing to stay cheerful despite all the loud noise and chaos. 
Day Three of my blog was a quick summary of our path to diagnosis; for many this can be a long and arduous process but ours was quite straightforward. I always count myself very lucky that we were referred to such a great NHS paediatrician right from the start. Of course that has led to questions that if it was so easy to diagnose her, it must have been very obvious - and yet to me, and most people around us, it didn't seem obvious at all, as I explained in this post:

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So. Day 3 and what a cracker. Other half left early (4am) for a 4 day ski trip and it's been a very long day already. Didn't help myself by taking girls to local indoor play centre, and thus spending 2 hours running around after them up and down steps, through tubes etc, but we did want to catch up with an old friend who we've not seen for ages. Now am feeling very run down and achey, can't wait to go to bed tonight! But head still buzzing of course.

Have started putting the feelers out and of course there are people around locally with children with ASD, you just don't notice it when it doesn't really concern you. Surprisingly 1 in 100 children supposedly have some form of this, and its occurrence has been increasing in recent years. Fascinating what may be causing that, if I only had the time to research it. No time now as there is so much to research already. From where I'm standing it seems like an Everest sized mountain of information! Been in touch with the lovely mums on mumsnet, where there is a special needs board (seems strange to think I need to look there now), and already some things are becoming clearer. Firstly, that Sasha may actually not really be borderline - she's still so young, and it may well be that the gap becomes wider. But hopefully if we can get her all the support she needs this won't be the case. However someone has pointed out that our area seems to be of the worst areas for getting help at all, so I'm guessing I'll learn to develop a hard skin and tough neck myself now! Funny how you will do anything for your kids....

There is a constant flitting back and forth in my mind that it isn't a big deal, she's not bad and at least she'll get some help going forward, but on the other hand it is a 'ginormous' deal, our lives have already changed in a way we didn't realise, and the future is definitely not the same colour we always thought it was. However I need to stay positive, don't think breaking down really helps anyone, so onwards we go.

Another good bit of advice I've had is to document everything, which is where I'm hoping this will come in handy - as I said at the start, I need to think back to questions asked by the paediatrician about not only her current behaviour but how the birth was, when she sat up, when she first said mama etc. But all of that seemed to be jigging along so normally at the time, it's difficult to find anything that stands out. So over the coming days I'll just be throwing in random memories for my own benefit.

Also need to document who we've seen and when. First I referred Sasha for speech in August last year, we had our first assessment (where Sasha played with toys but unlike her said nothing at all whilst in the room!) end of October, M the speech therapist did a nursery visit to check on Sasha there in November, and then referred us to paediatrician for a development check. In the meantime we also had a home visit from a health visitor to do Sasha's 2 and a half year check, but nothing was really said or concluded from this. Jan 14th was an hour and a half long session with the paediatrician, who said she would call nursery and speak to M the speech therapist again, and then meet with me/Mr C in a months time to discuss the next steps. So watch this space for mid Feb! Of course I'm already expecting lots of waiting and appointments, what joy.

Friends who already know have of course been very supportive, with lots of offers of help which is great. Somehow you still feel a bit isolated though as no-one else can really understand the little things. Am hoping this will change as I get to meet other local people in the same situation - but of course what I really want is to carry on my 'normal' life with my 'normal' friends the same way I always have done. Hopefully that won't get too difficult with more demands on my time.
Have only been able to update this as both girls exhausted and napping - yes at tea time! Which is what I should be doing, so I'll end here for now.

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The other main thrust of this post is how important it was to talk to people who understood what I was going through. That still stands true today; I'm so lucky to be part of a group of great mums locally who all have children with autism, and they just 'get it'. My lovely friends who have listened to me along the way also 'get it', even when it's not directly in their lives, and I'm so grateful to them for understanding too. It's so true that most people know nothing about autism unless they have some connection to it, and I'm hoping by the end of this month to have been able to explain just a little more about what it (autism) means for us.

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 2 of our story please read: AAA Day Two

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



Sons, Sand & Sauvignon





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