Wednesday, 28 April 2010

Talk About Autism Day

Well I really thought I should just post a quick one today as I believe it's National Talk About Autism Day - or maybe that can be month, or year?!

As I type Sasha is shouting from the sofa in the lounge, where she is lying watching Balamory after being allowed back downstairs after bedtime for the first time ever (she hurt her foot, couldn't sleep and got very upset, so I'm hoping it will calm her down....). I love it when she tries to join in with the theme tune, even though the words are not very well formed, and she can often tell me what is going to happen next in that episode, or the answers to any questions like 'whose house will we got to next?'! Earlier she also tried to sing the Thomas theme tune for the first time, and it was a pretty good effort, and made a nice change from Twinkle Twinkle ;)

Saw one of the Boyzone guys, Keith Duffy, talking on GMTV this morning about Talk About Autism Day. He has a 10 year old daughter with autism and I admire the way he has taken on campaigning using his name/celebrity-ness to try and increase awareness with others. He did mention ABA (Applied Behavioural Analysis) which is a tested concept of teaching the under 5s which has proven good results. I didn't know much about it, other than it is a 1-1 teaching scheme, and a little expensive therefore, so I went away and read a bit more. £20,000 a year is a rough idea of the cost! That was a *little* more than I expected... but then again, what price can you put on doing the best for your child? However it's a very intensive method, around 40 hours per week of teaching the child, and I'm just not sure that we'd want to change our (and Tamsin's) lifestyle to that. I don't mean that in a selfish way, more that I guess I'm trying to 'keep calm and carry on' as normal. I don't want what Sasha has to take over and consume all of our lives, I just want to try and stay level headed. We'll see I guess!

The nursery let me know today that they have received the funding for extra help with Sasha based on her diagnosis, so that's all credit to them for being proactive. Not that it's a lot (think they said 5 hours a week?!) and it doesn't mean she will get a one-on-one assistant, but it should just alleviate the difficult times. Whilst it's good news, it does also kind of make it all even more official and a bit sad... but then it's not like I'm trying to deny it, so not really sure why.

Anyhow must go and try and coax her back into bed (wish me bucket loads of luck, Peppa Pig has started now and she can go on for hours!!!). If you do have any questions about autism, or Sasha, ask anything, I won't be offended and will try and make sense with my answer (but no promises there!).
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Tuesday, 20 April 2010

Ups and downs - not just on the trampoline!

Well hello again, ages since my last blog I know, but that's how it goes I'm afraid! Been a very up and down time for me, but that's starting to sound like my last post again....

Chris and I did go to a support group-type meeting last week, mainly to get an idea of what it was about. Lovely people there, although a lot of the content wasn't relevant to us (talking about specialist secondary schools education). We did get chance to meet the lady from the local Autism Advisory Service though, so hopefully someone from there should be in touch with us this week... although nothing yet of course. We're waiting to hear from them now before deciding what to do about speech therapy, as they may have some good advice. I believe we get a nursery nurse allocated to us who will come round and spend time with the family, getting to know Sasha. A lady from the Parent Partnership did call but missed me (typical) so I've called back and left a message (story of my life recently) but I'm not exactly sure what they do to be honest. The lady from the money advice unit called to arrange meeting to help me with filling in the DLA forms, but then promptly called back to re-arrange, so that's end of next week now. So at least at last something has been happening, even if it's not very much at all!

Visited old friends over the weekend as a family and another friend with Sasha this morning, and she enjoyed the trampolines there.... have a feeling we need to make a purchase! She was fairly happy today, until she woke from her nap, and then this afternoon/evening was one of those where nothing was pleasing her, she didn't really know what she wanted, except for a cuddle most of the time. It's difficult turning fishfingers with one hand, believe me! Then of course she cheered up and was full of beans just in time for bedtime - so much so she dropped and forgot about the ice cream I had given her (and so had I forgotten, my mistake, more clearing up) and then while I was getting things ready downstairs she had already disappeared upstairs to play in the toilet bowl. This usually (as in it's happened 6 or so times before) involves shredding lots of paper into it and sticking her hands in, but today I think I surprised her so much with my loud 'no' as I came around the corner that she dropped the whole toilet roll in. Fortunately there wasn't much on it but of course muggins here had to fish it out. Oh joy. She doesn't really understand that what she is doing is naughty - or actually it's more like she does understand, but won't remember and take it in and it won't stop her from doing it again. Still, maybe she did slightly appreciate I was upset, as bedtime was a bit quicker than usual - her routine now generally involves 3 or 4 books, with the main light off, and then maybe milk, followed by me lying on the bed and cuddling her, then trying to leave her several times before she'll let me go without a 'paddy'.

I have been watching the Channel 4 programme, Young, Autistic and Stagestruck, which is on Monday nights. The first one was very difficult for me to watch, and quite upsetting, as although it is a brilliant idea and well filmed, it did make me think about the future and what it might be like for Sasha and for us. Still so difficult to say as she's so young, but at the moment I'm going through a phase where I think I've been in denial previously and actually the truth is that she's not so 'mildly affected'. I can't imagine her going to school and sitting in a classroom, doing what she's told, which is really quite difficult to think about. It's still some time off but we will have to make sure support is in place - there are sadly no miracle cures for this condition and she won't grow out of it. So think as I've been told by others, there is no point thinking about the future too much, we will just have to wait and see, and do the best we can. She is of course still adorable, even when she's being 'challenging'! Meanwhile Tamsin is 'trying'.... ;) but we love them both so very much.
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Thursday, 8 April 2010

Speech and Language Therapy - long wait

Ok so there have been quite a few up and down days lately, mostly down, but now the sun is back out and so I'm starting to feel positive again. Or at least I would be, if I hadn't just received the letter from our local Speech & Therapy NHS dept which states that they are understaffed and so the wait is going to be longer than they originally told us - 6 months, which is about now from the time of Sasha's initial assessment. Wouldn't seem quite so bad if they could have actually told us when the therapy might begin, but they can't even say that at the moment apparently. So now begins the search for a private Speech & Language Therapist - but where to begin? How do we know who is going to be good with Sasha, who has the right kind of experience - and can anyone make her sit still for long enough and listen anyhow?!

I've also had the DLA (disabililty living allowance) forms through this week, which is a claim we will need to make in order to be able to pay for the speech therapy. Hopefully someone from the money advice unit is going to come round (in about 4 weeks time if we're lucky) to help me fill these in, as I've been warned that it is a tear-jerking kind of experience which I'll need a box of tissues for - we literally need to paint Sasha in the worst light, put onto paper all of the difficult things, to give someone else an insight into what she is like. Very difficult to write down I would say. Something I'm sure I'll mention is the fact that after waking up this morning, she managed to rip half of the (newly fitted) blackout blind off the top of the roll - not intentionally destructive I'm sure, she just likes to experiment with everything! A lot of my time is spent tidying up after her (but then again, I was probably doing it for Tamsin at this age still too!).

Was slightly concerned after Sasha came in from nursery yesterday, as she came to me several times and shouted at me to 'stop it' - a new phrase she has obviously picked up, and is now using when she wants my attention. She was also grabbing my face and spouting something else 'repeated' at me, not sure what but it will probably come to light. I'm sure they're very good with her at nursery, and they have let the staff know the diagnosis, so I can't imagine that's how they are treating her - maybe it's something she's picked up from another child? Time will tell.

Had a day out at Willows, the local farm/play centre this week, and it was a challenge. Sasha has no concept of queueing, although she did manage really well on the way in (why is it I always manage to pick the slowest moving queue though?!). She was desperate to go on the giant bouncy slide, but as there was a queue of around 15 children for it at all times I had to drag her away - she did a sterling job of trying to push in at the front but I'm just not the sort of mum who would let her and it's a bit difficult trying to explain to everyone why she can't wait like the others! However there was no queue for the bouncy castle and it was all worth it to see her smile when she was on there - she even managed to make a fleeting friend! Also was good to see Tamsin on the bigger bouncy castle, holding her own and enjoying herself amongst lots of bigger kids - it's not that long ago she would have been too scared of that.

So off to enjoy the sun in the garden now - having a well-earned 'lazy' day at home!
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