Thursday, 29 July 2010

Doctor visit but nothing urgent

Just had to blog about my doctors trip today - Tamsin has some spots around her legs and body, not many, but I thought I'd better get her checked out - and actually Sasha has the odd one too. So off we went to the doctors at 430, pretty sure he would say it was a non-specific viral rash (and he did), and a bit nervous as Sasha hadn't slept all day (of course Tamsin had!!). Well thanks to arriving early and so a quick trip to the shop for some large chocolate buttons, Sasha was on top form, apart from wanting the appointment to be all about her and for the doctor to check her too, with otoscope and stethoscope. So at the end of him checking Tamsin, I took a deep breath and asked if he wouldn't mind just checking Sasha's chest too with the stethoscope, as she had autism and if he didn't she'd be upset all the way home and for the rest of the evening! He gave me a funny look (but thankfully obliged) and said 'oh I didn't realise she had autism'. 'No, I mean, how would you, it's not like it's written on her forehead and we didn't come here to talk about her' I felt like saying!! Bless him, he was only young, but I did think it was a funny thing to say....
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Wednesday, 28 July 2010

Year on from referral... about to see an NHS speech therapist!!!

So hello, mood is up again you'll be glad to hear :) Main reason? Spoken to an NHS speech therapist who will hopefully provide some therapy at long last (a year after referral!). I'm not holding my breath though of course. First she will come and meet Sasha here next week, then hopefully see her at nursery following that and give us some idea of how we can best help. I'm at a bit of a loss as I'm fairly sure we do the right things, such as speaking clearly and simply, and repeating words for her to mimic - but some she will and some she won't! We have caught her actually saying 'Tamsin' to talk to her sister a couple of times, although she obviously much prefers the pet name Ga-woo that she's used for so long.... she's not at all keen when Tamsin calls her by a 'pet' name in return though!

Sasha has seemed more positive of late though, and we were well chuffed when she stood up at the weekend to give a rendition of twinkle twinkle at top volume in the garden in front of our visiting friends! She also tried to copy the words of a song one of their girls sang - that she (or we) had never heard before, so quite impressive really. I also heard her singing baa baa black sheep to herself on the trampoline after; she's not really branched out into other rhymes much yet so every little helps as they say!

When I called my parents today, Sasha took the phone off me, held it confidently to her ear and proceeded to tell my mum at great length about everything that was happening. Very little of it was clear (in fact probably none to my mum at the other end of the phone line!) but I could pick out odd words. Videoed it as it happened as I think it's a good example of how Sasha is (at times). She has intonation and lots of vocabulary, but once she gets going it's as if she slips back into her own language - often with a raised 'ok?' at the end of the chat to see if we've understood. I've been more aware lately that I probably do understand a lot more of what she says than other people, and I do now automatically translate/repeat clearly what she has said to help everyone. That's obviously a worry for when I'm not around though! Although we've never tried sign language, Sasha can mostly explain in some way what she wants, by either going to it or trying to repeat more clearly - but again a lot of the time I pick it up from the context I think. And sometimes even I don't get it - at a friends house the other day she was quite clearly saying 'gummy bears' or teddy bears but we had no idea if it was food, a DVD or toy she was referring to, even though she was definite herself and got upset that we couldn't find whatever it was. Poor thing.

Went to a 'paint a pot' type place today, and both girls really enjoyed it although it nearly all went pear shaped when Sasha desperately wanted a red colour that we didn't have. Pulled it back by distraction and letting her paint a mermaid figure instead, so all happy at going home time. Tamsin has been so good with Sasha lately, she's really very understanding. But of course still young herself, so no surprise when she does get to breaking point quickly and wants to cover her ears when Sasha starts crying - I know the feeling!
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Thursday, 22 July 2010

Spectrum Girls are fab!

Today was a lovely day as I had some friends round who are also mums of girls with autism/aspergers. We've met through a great group called Spectrum Girls, which was set up by one lady as a great support function, and it works so well! It's very nice to talk over the 'stranger' happenings with mums who you know will understand exactly what you mean and feel without having to explain too much or sound strange yourself! Of course this doesn't replace the fantastic friends I already have, who I know I can tell anything about Sasha and they won't judge or think I'm strange (hopefully), but it's always nice to meet new people with whom you have something in common.

Amazingly Sasha was also on fine form and took to having some strangers in the house very well (some of them she'd met a couple of times before) - on days like this it's almost as if she accepts that if they're my friends then they must be nice people, which is good. She also managed to say hello and use the name of the one little girl who came round (who was same age as Sasha) even though she'd not met her before, and all 3 young girls played happily together (or mostly separately but at least not fighting!) so I really enjoyed chatting and catching up with the adults for once. Just 10 minutes before they arrived she had threatened to go into meltdown however - over what exactly I'm not so sure.... she has lately decided that Same Smile is her favourite Beebies programme (she briefly toyed with Everything's Rosie, Bits and Bobs and Pocoyo) and so we have several saved on the hard drive to replay at her request (always seems like a good idea at the time, then you wonder why you started it!). She kept asking for Same Smile, but every time I started it she would get mad and turn the television off herself, but then cry for it straight away again... bit difficult to know what to do in that situation! After talking it over with one of the other mums, we came to the conclusion that there must be one special episode of it that she prefers watching, but of course she can't explain well enough which one, so it'll be a bit of guesswork from me then.

Tamsin has been very understanding/tolerant of Sasha lately and even tries to help show her how to do things unprompted (like go to the toilet, although that's not having much effect as of yet sadly...). At tea she showed Sasha how she was eating her pasta. Sasha has refused point blank to touch any pasta for the last 2 months or so, although that was something she has wolfed down in the past, and it does get quite frustrating as I feel her diet is getting ever more limited. She just says a very strong no and pushes it away, and although now I think she is starting to understand when I say no pudding them if she doesn't eat what's in front of her, she will quite happily go without pudding too and just manage with no tea - so what's best, no food or a repetitive diet? Ah well, she certainly doesn't look like she's starving ;)

When I asked Tamsin what she would like to do tomorrow after school finishes early, and Sasha will be at nursery, she also thought to whisper quietly in my ear 'painting' and then explained she knew I wouldn't want Sasha to hear her say that (which is true, as at 820 when I'm trying to get them out the door for school, the last thing I need is Sasha getting all excited about doing her favourite thing right there and then!!). On the occasions when I do get the painting stuff out for them poor Tamsin usually has to put up with Sasha mixing all the paints together into one big grey mess, so it will be nice for her to be able to do it in peace for a change!

So generally today has been a great day - Tamsin and Sasha also had a good half hour of giggling and tickling each other, which is always nice to watch (if you can end it before it ends in tears of course!!) but there was the usual 'blip' when I popped away for something (usually laundry sorting, nothing exciting), but returned to find Sasha had scribbled all over the sofa and furry cushions with a yellow highlighter pen just before bedtime (that just reminded me I must go and clean it!). Now she does realise she has done wrong, and I showed her as I told her off and sat her on the naughty step, but she came back in, stroked my arm and said 'so sorry mummy' in such an endearing way that it's difficult to stay angry. As that's the second time this week she's done the sofa scribbling, there's obviously not much remorse or understanding! In some ways it's as if she's 6 or 12 months behind her peers with the understanding and pushing the boundaries, but then in others it's obvious she is actually quite intelligent, so of course it makes her look as if she's just being naughty - which she is, but it's more than that. It's almost like naughty but without the intention. Probably people get jailed for that (not the pen scribbling, you know what I mean!) so let's hope she does improve and mature.

Anyhow back to the thought that we need now to get a private speech therapist involved, as really the NHS has not yet done anything for poor Sasha, and someone today has mentioned the possibility of verbal dyspraxia, so off to investigate that.....
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Thursday, 15 July 2010

More ups and downs!

Well a big 'up' today has to be the news that Robbie is back with Take That - it's got to mean another tour, yippeee!! I really hope they're still touring in 5 years time so I can take Tamsin with me :)

Another 'up' was the visit from the EYAS, who repeated that she thinks Sasha is very intelligent, picks things up very quickly and can quickly run through all the puzzles and games she brings each week and more. This should mean mainstream school will not be a problem for her as far as the learning, if we could just find a way to get around her perfectionism and not wanting to take direction or ask for help. Hmmm. 

The trouble is she can be so good, and therefore probably doesn't need 1-1 care all the time, but there are the times when if one thing is slightly wrong then everything else will be wrong and the whole day goes downhill. Will this have improved in a years time? We have to hope so, but maybe our school decisions will need to be taken or changed very late in the day according to what has changed with Sasha. 

The EYAS also agreed with me, rather than the speech therapist, that Sasha's understanding is generally very good for her age - she will understand (and follow, if it suits her) an instruction such as needing to turn the bottom half of a puzzle in a certain colour upside down in order for it to fit, or that a piece is missing behind her. But as the EYAS left, and told Sasha that she would see her tomorrow at nursery, it was obvious from the blank face that that particular bit of news hadn't gone in or been understood at all. I think it's the time concept where she is still most behind with understanding - everything has to be now or in the immediate future, anything 'later' doesn't make sense.

Downs of the day I won't dwell on, but included the usual not walking to and from the car (i.e. and wanting to be carried, which is getting to be very hard work), the newly found reluctance to have a bath or go to bed ('not bath! not bedtime!') and of course the time I returned to the lounge after only a moment away to find the sofa cushion and carpet had been scribbled over with felt tip pen. Unpredictable is the word I would use most at the moment!

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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!
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