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Monday, 11 April 2016

Autism, The A Word and the future.

More recaps today, looking back at the surge of emotions after the autism diagnosis of our youngest girl at the age of two and a half. 

Those emotions meant I was desperate to DO something - anything I could, to help her. It's in this way that I've related to the Mum in the BBC programme The A Word - I didn't go quite as far as stalking a therapist, and I didn't pull Sasha out of school to home educate her, but maybe I'm just not quite as dramatic as the TV character...!

Carrying on from that were plenty of thoughts about the future and what would happen. Most parents worry about their children in some way or another, and nobody knows what the future holds, but there seem to be so many more 'what ifs' involved when you have an autistic child. We still don't have all the answers of course, particularly regarding our next big transition to secondary school, but I try not to get too stressed about it these days. I've realised that all I can do is my best and take it as it comes.
www.stephstwogirls.co.uk
This photo was around 10 months after diagnosis. Sasha has always loved snow, and has been very disappointed the last few years with the distinct lack of it! She is often this happy when doing what she loves...
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So I'm still gripped by the need to get on and DO something now - it's just knowing what to do that is the difficult bit! Managed to get hold of someone in SALT (speech and language therapy) who informed me that the usual wait from initial assessment report to actually getting speech therapy started is 6 months! So that would mean nothing happening until June, seems unbelievable. So now do we have to search for a private therapist? I certainly want to get on and try and give her the best chance to communicate - today she repeated a word about 6 times for me but I still sadly had no idea what it was she wanted, although she obviously did, and understandably it upset her that I didn't.

More luck on the hearing test; managed to get another appointment for the end of this month, which is fortunate seeing as their written report came through today, and it was fairly technical - i.e. I couldn't really make head nor tail of it! So will be going back to ask some more questions there.


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What the future holds is a big question, and one which I've been trying not to think about. I've just finished Lorna Wing's very good book, but it did make me sad towards the end as it talks about how life may turn out. There's a chance that Sasha may be dependent on us for a long time to come, which is of course not what anyone really thinks about or hopes for when having children., much as you love them! This made me a little sad when thinking about the future and effect on Tamsin also - instead of the close/best friend sibling that we thought we were in a way 'giving' her, it could be that she's in a very different situation and will always have to be the caring one. It may also mean that she has to be more mature for her age than her peers in the coming years, and I really don't want her magical childhood to slip away from her. However, it is of course true that not all siblings are best friends anyhow, and we never did really know what the future would hold, so there's no point dwelling on it.

Probably feeling slightly down today also because we received a copy of the report written by nursery in order for them to put in a claim for funding for extra help for Sasha. The nursery has been very good with Sasha, and I know she's very happy there. Although they may not have had a lot of experience with autism as it is a relatively new nursery, I feel confident that the owners are happy to be involved and even pro-active (something I've already been warned is less likely to happen at school). The report was one which I also completed as Sasha's mother, and it's a tick box checklist of various things that the child can or can't do at certain ages, split down into categories such as fine and gross motor skills, self-help and independence etc. I guess the most disheartening thing was that Sasha seems to come up with a learning age of just 6-12 months when it comes to expressive speech and language skills, and only 12-18 for receptive language, play and early learning and social and emotional development.

I'm already dreading Tamsin's next parents eve, as I feel we will have to talk about Sasha as well as Tamsin. The teachers should be aware of it for Tamsin's sake so they can understand if she makes reference to her sister, but also for Sasha's sake if she is to go to the same school as Tamsin. Forewarned is forearmed as they say, and as I already mentioned, I've heard from various sources that it seems to be a real struggle to get the statement.you need to get extra help in school, so maybe other things will need to be put in place. I'll need to start making enquiries about how they would deal with Sasha starting, as well as looking into specialist schools to understand our options. Seems like school is a long way away but I'm sure it will come around quickly.

Sasha has started creeping into my bed extra early in the morning now, so I must go to bed early!

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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 5 of our story please read: AAA Day Five

For Day 4 readAAA Day Four

For Day 3 readAAA Day Three

For Day 2 read: AAA Day Two

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





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