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Thursday, 30 September 2010

Today's Top Tip - No Moon Sand!

OK so I tried to post a photo but it didn't seem to want to work. Top Tip is not to leave a 3 year old with autism alone in a room with Moon Sand, even if you have previously told her she and it are to remain on the messy mat. Of course I gave this instruction, wandered off to get a cup of tea and then returned to find a whole room covered in sand - it was everywhere. And I mean everywhere - down sofas, in curtain linings, by (but thankfully not in!) DVD player etc. Over the last couple of days Sasha seems to have returned to one of her 'destructive' phases. That's not really the right word for it, as she is really just making a mess and enjoying it, not intentionally destroying things with force. The day after the sand I had a 4 hour spell of literally just cleaning up after her - full bottle of water emptied onto the floor, all the DVDs out of baskets and out of cases and strewn around, felt tip pen all over the TV, crisps emptied onto floor rather than being eaten.... and the list went on. Followed by another complete bottle of water all over carpet that evening whilst being babysat by her Uncle O.  Somehow she still manages to be cute with it, but it is very tiring (and in some cases expensive!).

We've also had to shell out for new clothes for her lately, and clothes shopping for her is not something I enjoy, as lately she has become very specific about what she will and won't wear. Trousers have not been acceptable for quite some time, but we did manage to persuade her to wear leggings. Since summer though, she refuses those too, and would still be running round in her summer dresses if she could. So I've had to search for long sleeved jersey or jumper dresses that will keep her a bit warmer now, seeing as she also prefers to take a coat off the second she is outside, and is still refusing to wear socks or tights. The worst side effects of no socks is the fact that shoes rub her poor little feet until she has terrible red raw blisters or skin missing, and it looks so painful yet she barely seems to notice them at all. So far she is refusing to wear soft furry boots like she did last year - at least with no socks these were just acceptable. So she looks a little odd at the mo running about in new winter dresses and her old summer 'pirate shoes' (red stripey pumps) but most people probably don't realise what an effort it is to get her out of the door in the first place without a tantrum... so of course I care what she looks like but I do have to leave the house at some point!!

Chris and I have been attending a special course to help with parenting a child with autism, and it is good to meet other parents with children with similar attitudes to life. I think it is also making me realise that I do need to face a few more of the battles and sit through more tantrums in order to make her do what we want her to do. It's just so difficult though as the tantrums can last so long and spoil the rest of the day, and of course I'm not sure the mums at school are really ready to see a full blown tantrum just yet :) I guess I'm just secretly hoping that as she gets older they would naturally occur less often anyhow, but of course we don't really know if this will be the case.

Schooling and the thought of it is taking up a large part of my time just now - am trying to arrange to see a few schools in this area just in case she won't go to the same one as Tamsin for any reason. I'm hoping that won't be the case, but I think nursery saying they aren't coping very well with her has made me more aware that a 'back-up' plan might be necessary, and we need to research everything as best we can for Sasha's sake.

Toilet training is still not happening... not pushing too hard just yet, saving my efforts for weekends and hoping she'll just decide to do it by herself one day!
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Friday, 24 September 2010

Girl with a curl.....

There once was a girl, who had a little curl, right in the middle of her forehead. When she was good she was very very good but when she was bad she was horrid!  :)

Well of course I would never say Sasha is horrid, she is the most lovable 3 year old I know, but she can be difficult! My worry is that others think she is just being difficult just like any other toddler, and that it's my fault for giving in to her... but I think my old school friend and new school mum who visited this week may disagree with that, having seen her in full flow! I've thought several times that it is like having a big baby still at some points. And yet she is so clever, maybe she is just playing us all?! Ah, if only that were true.

It's been a tough week all round, having to write all about Sasha's bad points as support for our Special Needs statement application, and then finishing off today with a meeting at her nursery where they are expressing concern about her being ready to start pre-school 5 mornings a week in January, which has been the plan up until now. If they do take her for the mornings, they have admitted they may not be able to carry on with her afternoon care, down to lack of funding for extra staff, which does kind of imply that they can't cope with her without extra help - surely further evidence that a statement is necessary? The trouble is, as they put it, it really is all down to her moods - on a good day she is mroe than capable, despite being behind with her speech, of learning at the same pace as the other children. In the wrong mood though, she just shuts down completely and cannot be cajoled out of it. This week's afternoon session went OK, but only because she requested to sleep rather than go out for a walk, and fortunately they were flexible enough to be able to allow that. I know sleep won't be a factor at primary school level, but it could easily be her refusing to go on a coach for a school trip, and then what?!

We have at least our first date - 19 Oct is when the 'panel' hear our reuqest for assessment and decide whether to spend the next 6 months gathering evidence to see if Sasha needs a statement. Let's hope it doesn't stumble at the first stage! I'm trying not to be optmistic about anything, but I'm not usually a pessimistic person.....

I think I have really only just begun to realise that it is not the diagnosis that was the hard part, it really is now and what follows - the fight to give her the best future possible, fighting against the general lack of funding and understanding. It's really not very pleasant, I need to grow an extra skin or two overnight, anyone got any ideas?!!

Toilet training is NOT going well so far - Sunday and Monday she was lured in with new 'toilet toys' and persuaded to sit nappyless on the toilet, but since then she has resolutely refused to go into the toilet room. No fear of it, it really is just a desire to be in control. Could be a long battle this one!!
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Tuesday, 21 September 2010

The ball has started rolling....

So, lovely sunny day today, helps to make me feel better after a poor nights sleep - had so much going round my head about Sasha that I was awake for ages last night. I actually applied online for a Special Needs statement on Friday and so spent most of yesterday typing up the supporting document to go with it - i.e. what Sasha is really like and what our concerns are. It's quite involved and it is actually quite difficult to only mention the negatives, but very necessary. We know of course that Sasha is a gorgeous little girl who is very bright and loving, but she is different and does have a hidden disability. We need to be prepared and let everyone know as much detail as we can about how she is and how she sees life, in order to give her the best start at school possible. We've already been told more than once that she's not bad enough to get a statement, but not being bad enough won't change the way she is or help anyone to understand her. Next thing on the agenda is to think about what school will be right for her and to plan ahead to ease that transition. Meetings and more meetings will be my life for the forseeable future! Good job I'm not out at work ;)

The EYAS came back to visit Sasha today after the summer holiday break, and Sasha was very excited to see her. She ran through all the toys and puzzles easily and mostly with good humour, even asking for help at one point (but not unprompted!). The EYAS did mention how the speech doesn't seem to have become clearer at all, and how she was finding she needed to 'tune back in' to what Sasha was saying. Sounds strange I know, but in a way it's good to have the difficulties highlighted, and not just everyone saying how well she is doing all the time.

She has gone off to the afternoon nursery session today, but was starting to get upset and asking for bed because she didn't want to go when it was time to leave home. I had to whisk her out without any shoes and carry her (and the shoes!) there, and try and persuade her it was a good idea to go as we walked there. Fortunately she perked up when she heard the children playing out in the garden and waved bye to me happily, thereby giving me chance to do this quick update! Off to do some more school research now though....
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Thursday, 9 September 2010

Up and Down

Just a quick post tonight to update on how it can all be up and down, even in the same day. Today started off OK, Sasha was happy, but when it was time to take big sister to school Sasha went off to try and put her own shoes on. She picked her 'pirate shoes' (pumps named that because they are red and go with her pirate outfit!!), which have been worn many times before, and which have a velcro strap across the top to hold them on. Sasha tried to put these on without undoing the straps, and managed to do so for one foot, but when it came to the other she realised she just couldn't do it. Of course at the first signs of distress I offered to help, but no, she wanted to do it herself. And so she carried on battling, and got more and more upset when she couldn't and each time I offered to help the screams got worse (no mummy help!) and poor Tamsin was sitting waiting on the stairs with her hands over her ears. There was not much I could do, until it got to the point where Sasha was so upset that she threw the shoes off and eventually let me hold her and cuddle to calm down - but then she refused any other shoes or help. So I had to carry her to the car without her shoes on, and quietly throw her sandals in without her seeing. By the time we got to school she was fine again, and I managed to slide her sandals on without protest. In fact after school drop off she suggested going to the shops in town, not usually her favourite past-time, and we had a lovely hour just wandering round with no pressure and brilliant behaviour - she even asked to go to a food shop, specifically for bananas, and then promptly ate 2! It's unheard of for my children to request good food as a rule :)

We then went on to a new music session which I'd said I would give a trial. I'm a bit nervous about organised sessions as Sasha doesn't enjoy being told what to do, but she does love music so I thought we should be brave and give it a whirl. The session went OK, Sasha's behaviour was fine, but she didn't really join in with the teacher that much - largely due to the big mirrors in the ballet studio which she thoroughly enjoyed watching herself dance in!

After lunch I developed a migraine and Sasha continued to be brilliant - I had to lie down and she didn't complain at all, just took herself off to her own bed and had a sleep, which was perfect for me. After school pick up both girls were very good, playing together nicely and eating tea, and despite no hubby to help, bedtime went remarkably well with stories together. Sasha really didn't want me to leave her tonight though - usually after lying down with her for a couple of minutes she will let me say good night and go, although I'm sure she doesn't sleep til quite late, but tonight she didn't want me to go, kept requesting me to lie down again and cried if I tried to leave. But all in all a good day despite the not-so-happy start.

Back to nursery for her tomorrow, first time since her huge outburst on Tuesday, so I'm a bit nervous about how she will go in. Fingers crossed there's no crying....
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Wednesday, 8 September 2010

Sad and Happy

So a quick update tonight... the wrinkly fingers did continue to bother Sasha at swimming but we've managed to turn it into a bit of a joke now, so that's all OK!

The past couple of weeks have been quite up and down for Sasha - generally she's quite happy and bubbly but 'high maintenance' with it. The dummy rule has stuck and she has been amazingly good about that, so we're pleased that went well. The next big 'issue' to tackle is toilet training... I'm building up to that one! Think she is more aware of the issue herself now, but 90% of the time will still say 'no' to sitting on the toilet. So next step is to make the toilet more appealing, and then it'll be cross fingers and go for it!

I was quite sad yesterday as I collected Sasha from her afternoon 'fun focus' nursery session, which runs from 1-335. She was down to do one of these sessions every week last term, but I rarely managed to persuade her to go as she was generally so tired and still needing a nap at that time. So I was very pleased yesterday when she seemed fine with the idea of going on the first day back of term, especially after we'd had a slightly unusual morning (Daddy had gone to work late so he could stay home and watch her whilst I went to listen to a talk at Tamsin's school, then after taking Daddy to the train station we had discovered we were locked out.... only for a short time, fortunately Daddy came back!). I practically skipped home to get the washing up done, then went to collect Tamsin from school and back home to get Sasha from nursery. Well as we walked in, we found her fast asleep face down on a cushion with her jacket on, looking very hot and bothered. I was informed that she had got upset when they were about to take the class out for a walk, because she wouldn't hold someone's hand (although I'm not sure if they were trying staff or other children) and of course they couldn't take her like that. So cue one almighty tantrum and she basically burned herself out. So much so that she didn't wake when I lifted her up, and she also had a scratch on her nose - presumably from her own fingernails if she was putting up a struggle, although I'm not sure. There were so many other parents filing in behind me to get their children that I didn't really think to ask too many questions. Hopefully I'll get chance when I next drop her off. It just made me feel sad as I don't think anyone likes to think of their child as being upset when they're not there to comfort them, and because I understand it's not her being naughty, she obviously has her own reasons and issues to not want to hold hands. There are things we should not let her get her own way with, but maybe she could have been persuaded to hold someone else's hand....

So today was a different day; we took Tamsin to school together for the first time, and although it took Sasha a while to accept that Tamsin's classroom location has now changed (I explained but 'no, that way!' she said about 20 times before giving up when I ignored the repeats!!), she was generally very well behaved and in good spirits. When we got home after that, she actually asked for her EYAS by name, despite the fact she's not seen her for 7 or 8 weeks, so I was amazed (and a little sad that she's not coming again until the week after next!). Instead we had a visit from 2 very nice ladies who are running the Earlybird course for us. This is an NAS approved course for pre-school children with autism - well more precisely for the parents, to help us learn strategies for coping with behaviour etc. It starts next week and runs for about 12 weeks with 3 or 4 home visits where they will video us and Sasha to see if there has been any improvement in the way we handle situations. Well, Sasha was on top form, very chatty and bubbly with these 2 strangers, although I'm not sure they managed to video much of that. At the point they started videoing, she stopped still right in front of the TV for about 5 mins. As I decided that wouldn't be a fair representation of her, I tried to get her attention, suggesting she sing Twinkle Twinkle. She said no and suggested back Baa Baa Black Sheep! Strangely though, I ended up singing that on my own, brilliant party piece. Hmmm. Oh well, it was nice to see her so happy, and that is her 90% of the time.

More often now at bedtime Sasha will decide that she is going to read the books to me herself, and I think it's very cute when she says something (in her own way!) for every single page, followed by 'The End' for the last page. I love that. Now she generally lets me read most of the words to her in a book if I'm reading, and it helps remind me how far we've come with the book thing since the flipping through pages stage. Her speech has also improved a lot, and I think her understanding and use of language are now not far off where she should be, it's just the sounds which are still fairly unclear. It gives hope though that these will also improve over the next year in time for school, so hopefully that won't be so tough for her.

So tomorrow's another day, never a dull moment in the Curtis household! Night x
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