|Sunglasses and woolly hats are the perfect partners :)|
-------------------------------------------------------------------Today I woke up feeling much more positive (despite Tamsin stumbling in to sleep on her ski-ing Dad's side of the bed at 3am and rustling for half an hour!). So glad, think positive is the best way to be. That means I realise I can slow down the rush to want to find out all I can and do everything now - take a step back and re-appraise. So much to learn and so many people to talk to, but there's time, we're doing the best we can for now and of course that is good enough. Another friend has also had some difficult news this week; I think that always makes you stop and think about what you do have and to be thankful of that, as well as wonder how best to phrase things to make them feel OK.
Sasha seems very happy to be going to her nursery more often (was one day a week, has increased to 2 full days and 2 extra 2 hour sessions), and of course this is less stressful and calming for me, knowing she is being well looked after and getting a greater variety of influences there. Took her swimming this morning, which she has always loved as she is a natural water babe - however back last September when we started these classes she would shout 'bye' every 2 minutes and try to get out of the pool - definitely wasn't keen on the idea of being told what to do. Like most toddlers surely? Except with Sasha I feel it was more about the unknown, the change from routine. Now she knows the teacher and the songs and actions, it's definitely not a struggle anymore, we always enjoy being in the water and I'll stay in with her as long as I can each time as I know she's happy there (especially when she's pouring the watering can over my head :) ). I did tell the teacher about our recent 'nearly' diagnosis (after all, it's not definite yet), but felt strangely odd telling her, a bit embarrassed maybe? Not embarrassed of Sasha at all, but maybe embarrassed that she may think I was using the news as an excuse for bad behaviour. It's not at all an excuse, but is a reason for it, and I think it's fair to let other people know - they're hardly going to guess. The news has certainly given me more patience, although of course it is still very frustrating when I can't understand her sentences or mollify her behaviour.
Haven't really explained yet how this has all come about. We had noticed that Sasha's speech hadn't developed well compared to others her age, and also compared to her elder sister, who was chattering away from 18 months! Sasha was very verbal, and seemed to have developed her own language, but only had about 10 words which we could recognise:
bubble (which was strangely very clear!), mama, dada, 'wa' for water, 'a' and a pat on the head for hat are those I can remember.
So after she turned 2 I enquired with the health visitors what we should do, and they said that nothing would be done by them until after the age of 2 and a half. However we were given the advice that we could refer directly ourselves, so I did. That was back at the start of August, and by the time of our speech assessment in October Sasha had made some progress, with more words, Teletubbies names and even the odd sentence/phrase like 'there it is'. But I'd say none of it was very clear to an outsider. The speech therapist ran through what sounds were common for a 2 and a half year old to make, and from what she was saying, it seemed almost as if Sasha wasn't really that far behind, just more likely that the others were far ahead! So we weren't concerned - until a couple of weeks later, when we got the report the SALT (Speech and Language Therapist - there's a lot of new acronyms and abbreviations to learn now!) did from the nursery visit, which stated Sasha didn't interact well with the other children or use many words there, and that she was going to be referred for a development check.
I think in the run up to Christmas this also didn't cause us a great amount of worry, as Sasha seemed so happy as always and was developing still further - new phrases such as 'where mama gone', and the fact she could now count to 10 and backwards, although again to an outsider the numbers may not be instantly recognisable, and certainly not if they were out of context. However we knew she could do it, and I think even someone at nursery said that there were plenty of older children who can't count, so the thought was there - 'well that must mean she's clever, right?'.
So Christmas took over and that's how it was up until the 14th Jan (which already seems like a long time ago). I think during the assessment, as I watched her get irritated with the paediatrician and ignore her basic questions ('can you pass me the big triangle Sasha?' 'Sasha, which one is the red block?'), it dawned on me slowly how her behaviour couldn't really be excused by tiredness (it was 930am) and that although she was doing the shape puzzles in double quick time whichever way they were presented to her, she wouldn't play with anything at all if she didn't want to and nothing held her attention for very long. Oh except that is, for the first toy, which was a small box with 3 boxes in it, red, blue and yellow. Each box had 2 wooden blocks in it, one large, one small. I watched fascinated as Sasha would empty them all out, then quickly line them up according to the colour and size, then tidy them away again - in exactly the same order/place they had come out. She never seemed to tire of this. But when the paediatrician asked her to build a tower with the blocks, again the ignoring/not interested. I almost laughed that night when I read one of my first mumsnet posts on the special needs board, where a mum explained her child doing a very similar thing at an assessment! Sasha cried when these blocks were put out of her reach to try and get her to move onto something else, and she didn't last much longer before she was trying to get her boots and socks and coat on ready to go out of the door, saying 'bye-bye' as loudly as she could.
Oh yes, socks, did I say Sasha really doesn't like wearing socks?! Or in fact, trousers, or her top or vest - in fact we're lucky she hasn't figured how to take her nappy off yet (well she did it once but I think we're lucky and have got away with it as she may have forgotten :) ), as she generally prefers to walk around naked at home and will get very upset if you won't help her undress!
It's really hard for me to explain how she's different, lots of the actions could of course just be excused as 'normal' toddler behaviour. I'll try and give one example, which occurred yesterday. As I was ill, Sasha had gone into nursery for an extra day (I was worried she'd be upset but thankfully she went in happily) and Tamsin went to a friend's after school for her tea. So when I picked Sasha up at 5 and we walked home from nursery (some days we walk, sometimes I collect her in car on way back from collecting Tamsin), I had to get her straight into the car to go and collect her sister. Although I obviously explained what was going to happen to Sasha, I'm not sure if she was understanding or just resistant, but she started (as I expected) to kick off, arch her back, nearly bang herself on the car door and not get into the car seat etc. Not down to tiredness, as at nursery she is still getting a 2 hour sleep during the day - something she sadly now doesn't do at home (although it has helped with bedtime!). At her age most children would, I think, be at least a little excited or curious about doing something or going somewhere unusual. However for Sasha it is all about the routine, and the fact she wasn't coming home to go inside home (iyswim) meant she was way out of her comfort zone. Although I know others probably don't see it or get it, I do understand this now and so, as the paediatrician suggested, my life has already changed, as I do try to accommodate Sasha by generally not doing things which I know will unsettle/distress her. But I wouldn't have it any other way, it's not difficult for me to make those changes and I try not to let any affect Tamsin.
Another example is when we dropped Tamsin off at her friend's house in the morning so she could walk to school with them, which meant me getting out of the car for 1 minute to take Tamsin to their door, but not getting Sasha out to walk to school like we normally do - as I jumped back in the car Sasha was red faced and had tears streaming down her cheeks, and it had literally been 1 minute! Sometimes though, Sasha does surprise me and is perfectly happy in unusual situations, so I do also try to do new things when I know there's a get-out clause!
Enough for tonight, hubby due back from skiing soon thankfully - he'd better not tell me he's tired though ;) !
Reading and republishing all these old blogs actually stirs up a lot of emotions. I think human nature dictates that we often try to forget difficult times, and there were definitely some of those. At the same time it's nice to remember the fun times we had too - Sasha still has a huge love of swimming and has pretty much managed to teach herself, which is a huge success story.
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 4 of our story please read: AAA Day Four
For Day 3 read: AAA Day Three
For Day 2 read: AAA Day Two
For Day 1 read: A is for April and Autism Awareness