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Wednesday, 14 July 2010

Ups and Downs

Generally feeling a bit deflated at the moment - Sasha's behaviour went from being absolutely brilliant in May to very unpredictable and not so great the last month or so. Sure, there are days she is fantastic, but most days seem to end up with a very difficult and tiring bedtime now, and seem to be more up and down during the day. The 2 big 'obstacles' of dummy and nappy also lie ahead and I can't really see forward to the time at which they will be manageable. As the EYAS said though, not really any point tackling them until we are strong, so I guess that's just not quite yet then. Need to get her to stop scribbling on our walls first - quite difficult when she doesn't really get the naughty step concept, and she wouldn't understand us taking away something she likes (Terry or chocolate) as a consequence because the two actions aren't directly linked. Taking away pens or pencils might do the trick but that'd be a bit unfair on Tamsin, and also maybe stint Sasha's creativity a bit - I've been told she draws and paints some great things at nursery. Sadly I rarely get to see them as for some reason when she's finished her pictures, her natural instinct is to paint or scribble all over them!

Met our allocated NHS speech therapist for the first time today (a year after referring Sasha, pretty good going, eh?). She visited Sasha in nursery a couple of weeks ago and then came to talk through her observations and action plan with me today. As she only works Wednesdays (!), I changed Sasha's nursery day so I could be home with her to have the speech therapy on a Wednesday, but then she decided it would be better to see Sasha in the nursery setting and so Sasha's caseload will now be handed over to someone else (if she doesn't slip through the very holey net) for a next visit in September - again, good job there's no urgency, eh?! Her observations were pretty comparable with what I see from Sasha at home, so at least that's a small relief, and the way forward is more around play therapy (such as encouraging role play, and turn-taking in games with other children) than trying to get Sasha to make or copy any actual speech sounds. When I questioned her on her thoughts how Sasha would be by school time, she did say she thought it would be a much longer process than that to get her talking at the level her peers do, which was a bit of a blow to be honest. Guess I've been hoping that Sasha will wake up one morning and make perfect sense, in fact maybe progress into a 'normal' toddler would be nice. The fact this is unlikely to happen just leaves me with a sinking feeling as I know it will be a constant fight to get everyone to understand that, and stop being so bloomin optimistic that she is doing well and making great leaps forward! Of course I have plenty of optimistic times myself, and I know being down won't actually help Sasha, so all is fine - thankfully I'm not prone to depression, just tiredness!! She's still gorgeous and adorable, whatever level she manages to reach, and all her achievements will mean so much to me. Sometimes I catch sight of the disabled card I now carry for her in my purse, and whilst I know she doesn't generally obviously need it, I do think we need to come to terms with having a 'special needs' child, and it's quite difficult to find the time to do that when every day is a challenge.

Went to see Tamsin's summer concert today, which she really enjoyed singing and dancing in, and I found very uplifting - usually I get quite emotional at the school assemblies for no particular reason but this was just plain old fun. Still at the back of my mind it's tinged with a little sadness as I can't imagine Sasha taking part in group things like this without causing chaos but guess we'll see!

Ah well, off to get some much needed sleep now, hopefully both my girls are having sweet dreams!

4 comments:

  1. Hang in there , I have been the same with James it seems to be going so well then bang it all goes wrong .The worse and most hardest thing is coming to terms with the fact that your child has special needs , I'm still working on that one .
    On what you wrote about drawing on the walls its very similar to James as he actually drew his first picture on the wall , and after seeing a doc on rooms for kids with autisim they said how they draw better on wall so i gave James a wall in our downstairs toilet and he loved drawing with a variety of pens , might be worth exploring that , or even painting an area for her with blackboard paint

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    1. we have got a blackboard. sadly doesn't stop her from using otehr surfaces!! She's not so bad now though :)

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  2. I have an outside the box suggestion for you. If you have erasable markers, perhaps try to cover up the walls with whiteboard wall paper. I have heard that at least one pediatrics clinic in the US that does this and kids love it!

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    1. sounds interesting Bill, I may well give this a go! Thanks

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