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Friday, 17 December 2010

Merry Christmas to us!

Yay! yesterday we received the news we have been waiting for... the council SEN team has finally agreed that they will now assess Sasha to see if she needs a statement. I'm delighted on one hand, but on the other it does kind of reinforce again that Sasha has a problem, one which I really wish she didn't have - for her sake as she grows up, not for mine. As I said to one of the lovely nursery ladies today, there is never a dull moment with Sasha around and we love her so much. As I collected her from nursery, she was handed a present from Santa (who had been to visit there the day before), and she kept repeating 'Sasha's birthday present' despite being told it was a Christmas one. She loves birthdays, particularly candles and cakes, but presents too, and of course wants it all to be for her (I often relight candles for her regardless of who they were intended for originally ;) ). Which is ever so sweet and lovely, but of course it does make me a little sad inside that she doesn't understand something as basic as Christmas while all others around her of her own age already do. But she is still developing and I have no doubt she will get there :)

So to the statement. Do I think Sasha will get one? No, probably not, but that's a battle we may face in 6 months time (that's about how long it takes for them to get all the paperwork together). Seems our council aren't too keen on giving them out for 'non-obvious' disabilities. Whilst Sasha may not need full time care, she certainly does need extra care and attention compared to others her age - and though at times I've felt guilty about wanting this, as if it's special treatment, on the other hand at no time did I ever want it for Tamsin as she just doesn't need it. I honestly can't imagine any parent expecting it if their child doesn't need it, so I really don't understand why it is such a struggle to get a statement put in place. We will just have to wait and see what happens. In the meantime I'm excited and slightly apprehensive about the start at her new school nursery in January. She'll go for a settling session on the 5th but then not actually start until the 16th or so. The staff there are lovely and welcoming, and Sasha has enjoyed being there a couple of times, but I am kind of living in fear of the first time she has one of her meltdowns... Just hoping it's not on the first day when I try to leave her!! Am relieved now though as I'm sure we made the right decision by starting her at that nursery now, as it will mean both she and the school are more prepared when it comes to starting reception next September. Wow that seems like a long way off but I'm sure it will fly by!

So the madness of Christmas is nearly upon us and whilst a relaxing one would be nice to get rid of all the germs that have been flying round, that's not a word you would often associate with our house ;) and probably most houses at Christmas to be fair! So I'm guessing there won't be much time for blogging over the next week or so, and I'd like to wish anybody reading (is there anybody reading I sometimes wonder?!) a Merry Christmas and a Happy New Year! 2011 will certainly be a fresh start for us, let's hope it's not quite as roller coaster-y (is that actually a word?!) as 2010 has been :)
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Sunday, 12 December 2010

Still waiting.....

Have been waiting for news so I could update my blog, but sadly still no final outcome on whether Sasha will be assessed for a Statement or not. The case did apparently go back to the panel after my meeting with our council rep, but when I chased to find out what had happened, I was told there was some discrepancy between the nursery and the autism advisory service information. Not quiet sure what exactly, not even sure they knew what. I was assured they would follow it up and call back to let me know, but as yet, a week later, no further news. I'm guessing that they will decide again not to assess, and then we have to decide whether to go to court and appeal or wait 6 months and re- apply. Sigh.

Struggling with the day-to-day in the run up to Christmas, particularly now I have 2 poorly girls :( On the bright side though Sasha has now been into her new school nursery 3 times - the middle one didn't go very well but it was obvious after it that she must have been coming down with something. The other 2 times were very encouraging; she seemed fairly confident to play with different things and even have some interaction with the teachers. Due to go back twice with her this last week of the term, and will try and leave for a short period if she's up to it (although as she's under the weather I won't push her). I think if I'm honest I'm still living in fear of her first meltdown for them, as one is sure to happen and I think it will really surprise them. Just hope they can deal with it!

Roll on a peaceful Christmas.. Although not much chance of that as Father Christmas is coming to take away the dummy..... Yikes!
read more "Still waiting....."

Sunday, 21 November 2010

Better news

Thankfully feeling more positive at the moment, although I know only too well that in this game it's likely to be up and down always... Good news is that the school came back to us with the offer of a morning nursery place for Sasha starting in January, so of course we accepted and am very pleased. That means only a few more sessions for Sasha at her current nursery, couple of weeks off (not for me!!) over Christmas and then a fresh start at school in January. Although she doesn't really understand fully, she has already asked to go to school and I'm sure it's the best option for her. Fingers crossed anyway! Just need to try and improve her understanding - and now we have a great new speech therapist on board so another thing to be optimistic about.

Also had the meeting with the council and a new date set for the panel to decide on assessment again, so more fingers crossed!
read more "Better news"

Tuesday, 9 November 2010

Good news and Bad news....

Last week we had a very positive meeting with the Head and SENCO (Special Educational Needs Coordinator) at the school our oldest daughter currently attends. They've managed to dispel any doubts I had about it being a good school for Sasha, so it's a weight off my mind to know we will most likely apply for her school place there.

However when we arrived home from that good meeting, I received a phone call from the nursery Sasha currently attends, to say that they are not willing to take her for the 5 mornings pre-school as planned (and as all others her age will be doing) from January. Instead they are only offering 2 morning sessions and one full day - so less time than she currently does with them now. The main issue for me is the lack of routine though - I was really looking forward to taking her on a daily basis in the mornings, as I think starting the day in the same way would be a big help to her and she would have actually enjoyed it. As they are a private nursery, they are entitled to offer what they like, and as a business decision it obviously makes sense to them to take the money from parents with those children who do not cause them quite as much difficulty during the day. I appreciate that their funding (which was only 5 hours per week anyhow) is being cut next year, but am disappointed that they don't want to go the extra mile for special needs and the experience of that themselves. I am also extremely annoyed with myself for not applying for a state nursery place for Sasha - but back last year when we had to apply, we had no diagnosis and no idea of how Sasha might be, and I decided that this local nursery, where Tamsin had happily gone, and Sasha was already doing a day a week at, would be the best place to keep her before school. How wrong I was! Sadly they have let us know this too late, and all the school morning nursery session places have been allocated. So for now Sasha will stay on the waiting list for the school nursery and we will start her there as soon as possible, although a space may not even come up now before next September.

I am looking into another option, which is to send her to an autism specific nursery, where she will get experienced teachers and almost 1-1 care and attention. In fact I would do that tomorrow if it was local and daily - sadly it's up in Stevenage so around 30-40 minutes drive (depending on traffic), and they only do 3 sessions a week. So lots going round my head just now as we try to decide what is best to do for Sasha. Tomorrow she is having a CARS (Child Autism Rating Scale) test, although I'm not quite sure what that will prove - we know she is very bright in some ways but it all depends on whether/when she wants to be! Then the day after that we will have the first private speech therapy assessment, and next week I will be having a meeting with the SEN team/lady at the council to put forward all our info for the statement application again. Busy busy!
read more "Good news and Bad news...."

Tuesday, 2 November 2010

Applying for a statement - difficult start.

A lot has gone on since I last blogged, and I just haven't had time to stop and think! Lovely half term, with trip to Butlins for me and Tamsin, and then a trip to Norfolk for me and both girls. We met up with my family there, and the girls had a fantastic time playing with their cousins. Sasha seemed a bit off colour for the 2nd day, and on the 3rd woke with a very unpleasant nappy which was a sign of things to come... she was hugely sick just before I was due to start the 3 hour drive back home, and carried on being poorly in the nappy department for the next couple of days. Am now very grateful that we hadn't pushed the toilet training issue ;) (she is still refusing on that front, so we're biding our time, will probably have a more concerted effort after Christmas). Still, it is the first time she's been sick properly in 3 and a half years, so can't complain! Medicine was suggested, but as that's another thing Sasha refuses, we've actually not given her any for the last 6-12 months. It's amazing how she manages without the good old Nuropol...

So. Applying for a statement. Not as easy as it should be, in my view. My anger has somewhat subsided but I'm still very frustrated with the whole system. Sasha's reports went to the panel (whoever they are) and she was rejected on the basis that a) there wasn't enough info (none was specifically requested mind you, and even so I sent in what I thought was a lot of info) and b) Sasha is receiving help at the moment. By this they mean the EYAS, which is a great service, at home for an hour every week, but as I've said before this doesn't really directly translate to what will happen in a chaotic classroom where the attention is not all on Sasha. They also mentioned SALT. I don't really call having one good assessment/report written over a year after first referring her a great service to be honest - and as lovely as the SALT is, she's still not offering Sasha any regular sessions, just a visit to see her at nursery once every 6 weeks or so. It's all just advice on how we can help her, but of course we follow that daily and it's not making a huge difference. So I have finally had to call in a private speech therapist, at great cost, who is comng next week for the first time and will see Sasha weekly. I'm just hoping Sasha 'plays ball' so it's worth it!!

So all this adds up to a lot more paperwork to be collected by me, and we will reapply in a couple of weeks time - in fact I intend to keep on reapplying until she is assessed formally. This is just the first step, to get the council to agree to assess her for a statement, and after 6 months of doing that they may still decide they're not going to give her one! It's ridiculous, it's not even as if the outcome will be any extra money to help her at school, it will just be a load of reports from the council and then it's down to the school to agree how much (or not) they want to spend their money on help for her. But to me it's obvious that Sasha is not the same as all the other children, and she will have huge difficulties at school, so this should be recognised and discussed openly. Seems to me like the council are just trying to brush any special needs children off their doorstep and avoid all responsibility.

Must go for now, more later.....
read more "Applying for a statement - difficult start."

Tuesday, 5 October 2010

We found Terry! Yay!

Phew. Just a quick post before I go to bed, as I'm really shattered today. Sasha was very good for her EYAS, did everything she was asked and with humour - very different from last week's session where she had a tantrum for 30 minutes! She's also been in a good mood for me today, going into nursery quite well (although they had problems with her as usual - so glad I've asked them to keep a book of the difficulties, seems to be something every session...) and even being good humoured about taking Tamsin to drama and waiting for her. After tea however (which as per usual she didn't eat any of), I'd left the kitchen for a while and Sasha managed to open the pull-out cupboard, take out the open, half full pack of caster sugar, and sprinkle it all over the floor. Lovely! She does it with no malice though, and really can't seem to understand that it's wrong, so it's almost pointless telling her off. I did sit her on the stairs, but it was obvious she had forgotten the whole thing 2 minutes later.

She did go to bed very well, although slightly upset as we hadn't been able to find Terry, her soft toy. I was worried that he was lost when we were out at Tamsin's drama place, so Chris spent 20 minutes in the gardens over there (we were playing hide-and-seek, v funny as Sasha thinks she can hide in front of the trees ;) ) with a big torchlight, searching for him but no joy. When he came home, I sent him to double check our garden and happily Terry was found down the back of our toy box outside - yippeee! Sasha will be pleased in the morning. I was getting quite sad about him myself - Sasha has taken him everywhere from very young, and has never shown any interest in any other soft toy at all.

I'm worried about tomorrow as we have the lovely ladies from our Earlybird parenting course coming round to video me trying to get Sasha taking turns with me - singing a song, nursery rhyme, playing a game or something. Trying to get Sasha to do anything she doesn't want to is difficult at the best of times, without strangers in the house! But will have to give it a go, could be very funny at least I suppose.

More posts to follow about schooling and statements and how it's taking up every thought in my head at the moment, so much to think about.....
read more "We found Terry! Yay!"

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!
read more "Today's Top Tip - No Moon Sand!"

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....
read more "The ball has started rolling...."

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....
read more "Up and Down"

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
read more "Sad and Happy"

Wednesday, 25 August 2010

Dummy Fairy was a bit of a chicken... but partial success!!

Thought I should update to say that the dummy fairy had a slight problem after removing the final dummy from Sasha's mouth (all the others had gone under pillow...) - she woke up 20 minutes later and was wide awake, crying for her dummy. Sleepless nights flashed before me and as I'm not quite ready to go back to that, I (sorry the dummy fairy ;)) caved in and gave her the dummy back for sleeping. However when she got up in the morning I was very clear in telling her that was the only dummy and it needed to stay under her pillow for sleep time only. Well, amazingly, she took to that rule instantly and it has remained under her pillow during the day. Sometimes she has gone upstairs by herself to have a sleep in her bed during the day and it gets used then, but it never comes down during the day now, and we've even managed 2 very long car journeys without it!

So I'm really quite amazed how good she has been with that. However yesterday we had the worst day we've had with Sasha in a long while, where I did question if I should have kept it.... we went to visit an old friend of mine who is about an hour's drive away. Funnily enough I did stop and think about whether to take the dummy with us as a car journey with sleep was forecast, but I resolutely decided it shouldn't leave the house or else Sasha would assume she could find it in my bag anytime. Sasha was quite niggly when we first got there (somewhere new, 3 other young children there, understandable really) but after 20 mins or so it was like a switch had been flicked and she happily skipped about finding things to play with. That probably lasted an hour at most, and then the niggles and wanting to leave started again as she got bored. As we did a little tour of the house Sasha sadly got her fingers trapped in a self closing door, and although it fortunately wasn't a bad squashing, it did start the screams off, and they lasted for the following hour, as she decided she wanted to go home. As I'd only just said yes please to my friend offering to make us lunch, going home wasn't an option and so I had to try and placate her - but nothing I said worked, she just got more wound up and almost screamed herself sick. Spoiled everyone else's lunch off course (including mine, which I had to eat balanced precariously on my knee whilst holding her) and so I did wonder if I would have just been better off leaving. But that would have been giving in to what Sasha wanted, and I felt it was important not to - as Tamsin says frequently at the moment 'Sasha always gets her own way'. That isn't true of course, we don't let Sasha make all the decisions and Tamsin doesn't have too bad a time of it - Tamsin's mostly upset of course because she's not getting her own way!!! But she was really good at my friend's house, and it can't have been a very pleasant experience for her either poor thing - I know I had a headache when I got home, she probably did too. The car journey home typically only took half the time of the one going and both girls woke up as we pulled onto the drive, so more tears followed as Sasha had not had a long enough nap and was still too tired. I was glad to finally put my feet up that evening!

In sharp contrast to that was today, when I had to take them for an early morning dentist's check up followed by feet/shoe measuring. Well Sasha took it all in her stride, sat with Tamsin in the dentist's chair and opened her mouth for (just) long enough for the dentist to count all her teeth. We were very pleased as Tamsin's teeth seem to be in excellent condition with one new one growing at the back. Even Sasha's teeth look pretty good, amazing considering how infrequently we manage to persuade her to put a toothbrush in her mouth (let along actually brush the teeth....). After that we dropped in to Clarks where Sasha actually let the male assistant put pop socks on her and measure both her feet on the foot gauge - I nearly fainted! (8 and a half in case you're wondering - Tamsin is now 11 and a half, both girls have very narrow feet). Then a visit to the toy shop, where I managed to escape having only spent £1.50 on 2 choc lollies for the good girls (I know, bad for your teeth :) ) and home in time for lunch. Despite being stuck indoors due to British summertime being cancelled, the girls were both very good all afternoon, amused themselves mostly and neither of them had a nap - almost unheard of! So no doubt they'll be up at the crack of dawn tomorrow, cranky as anything :)

Haven't managed to blog about the holiday yet, but one thing from that I must quickly talk about is how Sasha has suddenly developed a fear of her fingers going wrinkly after swimming! Half way through a leisure pool trip in Tenby she started pulling at her hands and getting upset about them - upset enough that I had to take her out and console her. Yes I know it sounds odd, and it is indeed completely irrational - I can't imagine many other 3 year olds not 'getting' what it's about despite having it explained. She loves swimming too, so I really hope it doesn't continue to cause a big issue - hopefully we'll find that out tomorrow!
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Saturday, 14 August 2010

Tonight's the Night..... Dummy Fairy is on her way!!

Ah, just back from a lovely holiday in Wales and I'm sure I'll blog a bit more about that another time. Just wanted to catch up on today first, as it's such an important day for me.... yes, the dummy fairy is finally coming for Sasha tonight. Well I say for Sasha, but actually for Tamsin too, as she couldn't bear to be left out - she always loved her dummies, fairy came for her at the age of 2 and a half and then 4 months later she started sucking her thumb, which she still does!! In an attempt to stop that, i did actually let her have a dummy at night again a few weeks ago, more as a joke than anything, and fortunately she saw it as that so they've not really been used, but they have gone under Tamsin's pillow tonight too... all to be replaced with chocolate coins for one night only! Of course that'll be no comfort once they're gone, so we're battening down the hatches and preparing for a tough couple of days as far as Sasha goes....

That's assuming I can get them off her first of course... I explained at bedtime what was going to happen, and took all 6 dummies up to her room (I think we did have 10, so it won't surprise me at all if Sasha manages to find some that the dummy fairy forgot over the next few weeks, but hopefully I'll get to them first in a mega clear out!!!). So anyway, I told her and then put the dummies under her pillow, to which she laughed and quickly grabbed them all back up in one handful. So I tried leaving them on the table next, and made her count them for me (so hopefully she'll remember the relevance of the same number of chocolate coins in the morning) - well when I said 'let's count them', she did - in Spanish!!! Think it all seemed a bit of a joke to her... hey ho, it will become real tomorrow and we'll see the tears then when she can't have them anymore. That's if I can prise them out of her hands - when I left her to sleep she had a very tight hold of 5, and the other one in her mouth of course!!

Bedtime also showed me again how amazingly bright she can be - she asked me to read one of her 15 Dora books, Dora Goes to School, which we've not read since sometime before we went away for our week holiday. I read the first 3 pages and then she decided she wanted to read it to me herself - something she did most nights on holiday with her other books, think she's enjoying that independence. Well she had a good stab at the story on mot pages, and as always said everything in Backpack in order, expecting me to repeat it, starting and ending with the same thing in the funny ordered way she does. But then she told me what was going to happen on the next page exactly right before seeing it - i.e. that Dora would have the pencils, Boots the rulers and the teacher the files (or books as she calls them). She has an amazing photographic memory obviously - despite reading that book several times myself (to her, I prefer chicklit myself ;) ), I wouldn't have known or even thought about who had what!

Earlier on today she also said 'not tickle mummy' but also 'no tickling' at relevant times, which shows she has a grasp at least of when to use verb or noun. She can say the whole 'abc' rhyme now and I'm sure she's beginning to recognise the written letters. It's a shame that the speech therapist doesn't really realise this.... we finally had a visit from an NHS SALT at home just before we went on hols, and to say it was a disaster would be an understatement. Sasha decided she didn't want the very nice lady here as soon as she arrived, and proceeded to have the biggest tantrum she's had in a long while - ending with her taking herself up to bed, screaming herself hoarse and then finally going to sleep at 11 o'clock in the morning - not particularly helpful when we had an appointment with the paediatrician to get to for 12! So anyhow I ended up showing the SALT a short video clip of Sasha on the phone to my mum, babbling away quite happily, which was about all she saw of her and so she has concluded she has a problem with 'T' and 'D'. Which may be true, but not always true. In fact she quite happily said 'draw' instead of 'straw' the night before. I feel that Sasha's speech sounds entirely depend on what she feels like saying most of the time, although I do believe T is a particular problem for her. So how she can be treated I really don't know; it has upset me greatly over the past couple of weeks but I'm back to being philosophical and hoping for a major breakthrough somehow. Not that I think for one minute that removing the dummy will do that for her speech; I just feel it is the right time to lose that particular crutch as she gets older, and I'm more concerned about her teeth than her speech on that front!

So after the SALT had been here I had to wake Sasha and drag her out to the paediatrician, which could have course have gone either way, and was in fact still wavering when the paed came down to reception to see us. Fortunately Sasha was happy to go back in her room and see the toys, and she let me speak to her for about, ooh, 20 minutes fairly uninterrupted before Sasha decided it was time to leave. Hertfordshire - very complicated system I'll explain another time) and I'm just waiting for the end of the summer holidays before I embark on that 'fun' task. It was a relief to know I would have at least one professional's backing, but on the other hand it did make me sad as really she was confirming what I already know; that Sasha will struggle in education without individual care and understanding. Sometimes I can hardly believe we are where we are - most parents have it so easy with school and their children, as indeed we did with Tamsin, and until you're faced with the difficulties you really have no idea what other people may be going through. And even saying that, I know we are still very lucky and our time will be nowhere near as difficult as what others have to go through, which makes me feel bad for feeling even a little bit down.

Thankfully in advance of the pain tomorrow we've had a lovely day; we went to see Dora make an appearance at a local shopping centre! It involved a bit of hanging around, and although the organisers were very helpful and did offer to let us not have to queue for so long, we managed to stick it out with Sasha not getting too upset (well OK we did go and buy her a Peppa Pig top while Daddy and Tamsin waited in the queue :) ) and it was all worth it when she saw Dora appear - she mouthed a very quiet 'wow'! So, as one of my favourite old mottos goes:

Life is queer with its twists and turns, as every one of us sometimes learns,
And many a failure turns about, when he might have won had he stuck it out,
Don't give up though the pace seems slow, you might succeed with another blow.

And here ends this evenings lesson - I may quote the rest of that in weeks to come!
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Sunday, 1 August 2010

Bedtime books

Just a quick one tonight. I'm very happy as in response to my whispered 'I love you' to Sasha at bedtime, she did reply unprompted 'love you mummy' :)

I generally have to lie on the bed with Sasha for a while before she is happy for me to leave the room, and it did end up being a bit longer tonight but I really enjoyed the cuddle - she was cuddling me and stroking my face and almost giggling at times so it was hard for me to leave as I didn't want to! Earlier I'd read a couple of the short board books to her, and then she decided she was going to read one to me - for the first time. She picked it up and said something for every page (followed by 'the end' as that is what I always say!!!). Then she was feeling brave and decided to progress onto reading a couple of her Dora books for me. Well I was amazed, as she stopped on every page and said the gist of the story - certain words quite clearly (generally keywords like map, backpack, Diego and all the words which we usually have to call out as part of the story) but also remembering and attempting a lot of the other words, with her own language in between. She did 2 whole Dora books like this, every page, which is no mean feat as it was not long ago that she actually let me read every word from a Dora book to her for the first time - usually she's very quick to turn pages and knows exactly which bits of the story she wants to hear or not! She can now sing the alphabet song, although she's not recognising the letters yet.

So all in all a lovely bedtime. Already dreading tomorrow morning though, as it's a nursery day, and important for me to spend some time alone with Tamsin in holidays, but Sasha has become a lot more vocal lately about not wanting to go to nursery. I know she has a lovely time when she is there though, and of course mixing with the other children and adults is good for her, so although I nearly crumble every time it is important for her to go too.
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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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Thursday, 24 June 2010

Tears and Tantrums for the EYAS

So, there's a million other things I need to be doing right now (like laundry, speaking to and emailing people re various matters etc) and some things I'd like to be doing (like watching Loose Women, reading Heat etc), but wanted to post as there is so much buzzing round my head at the mo and sometimes it just helps to get it out! It was Sasha's 3rd birthday last week and we have had quite a patch of good behaviour now - of course that always makes you question whether the diagnosis is right, but it does go up and down in cycles...

Today was the 4th visit from our Early Years Autism Specialist (who for privacy I won't name but will call the EYAS!). We now have a regular weekly slot where this lady comes to our house for an hour and 'plays' with Sasha, working on her behaviour and assessing her generally. She is lovely, and Sasha already looks forwards to her visit - although that is partly of course because she brings a big bag of toys with her each time! I don't sit in with them, but hang around within earshot so that I can tell what is going on. Sasha is given some choices and is sometimes directed what to do - and that is the bit where it falls down slightly. Today however it came crashing down in a big way after about 20 minutes, when Sasha was told she could only play with the cake game after doing the teddy bear puzzle. Now, Sasha likes the bear puzzle and has done this easily before, but today she decided she really didn't want to. So that's when the tantrum and tears started, she came to find me, and couldn't be persuaded to do it no matter what. It was hard for me not to console her, but eventually after realising I wasn't going to give in and neither was the EYAS, she stomped off, took herself upstairs, lay down on the bed and covered herself with the duvet and then went to sleep (which is how I now have time to type!). I then had a good chat with the EYAS who explained why she was being tough with her, but I understand totally how it needs to be, to try and teach Sasha some authority and prepare her for the school days ahead, and so I don't have a problem with someone else being tough with her. As long as they understand her, and don't punish her for that kind of behaviour, but work with it - which is where my big concerns about school and how she will manage start to creep in. I also understand that a teacher with a class of 30 children can't spend individual time with one child - but that may be what Sasha needs to flourish. She is certainly intelligent, as the EYAS has also commented on - she is quick to pick up and understand the puzzles and games. She just has to be in the right mood, or you have to know how to coax her into that mood - a very difficult feat which even I can't manage once she has started the downward spiral! I think we realised after talking it through that apart from the heat, and the fact Sasha may be coming down with the cold which Tamsin has had, her routine was changed this morning by us going to assembly (which she's not had to do before) and so her mood was probably not great even before the EYAS arrived today.

I am so grateful that Sasha was diagnosed early and that we are now getting this EYAS regular help, especially as she is so lovely. I can see Sasha building up a great relationship with this lady however, and doing what she is requested to by her, but I'm not so sure it will translate/cross over into the classroom environment. Sure the initial help and meetings will help the start of school, but Sasha can't switch her autism on and off during the day or on specific days, so what happens the rest of the time? I had a good chat with a lovely mum of a boy with autism who is already at Tamsin's school, and hearing her experience is good on the one hand as it means we can be more prepared, but on the other it makes my heart sink as I know it is all going to be a fight to help Sasha, and that is quite tiring (especially in this heat!). The trouble is, as she put it, when you've met one child with autism, you've met one child with autism. It's not really a condition anyone can understand fully, and different aspects apply to different children. Since the new ruling that any adults or parents can set up 'free' schools, I wonder if Aspergers or High Functioning Autism schools will develop, as these children need to be treated as individuals, but a specialist learning school isn't necessarily the best environment for them. They probably all need 1-1 care in a different kind of way though, so maybe home schooling or private tuition is best - but then of course that doesn't help them to learn from their peers about what the social norms are, the bit that they don't get. What really needs to happen is that the teachers, assistants, in fact anyone in contact with Sasha, all really need to be able to listen carefully to a detailed description of her character and remember what upsets her, and understand that her brain is wired differently. She is not intentionally naughty (most of the time!), she just likes routine but at the same time to be very independent and lead her own life. Flexibility is the key word - obviously she can't be allowed to do naughty things without being disciplined, but the type of discipline may need to be different to have the right effect, and just maybe the boundaries need to be a bit more flexible in the first place - does it really matter, for example, if she wants to play with dice for 10 minutes when everyone else is listening to a story, if she is after all doing what they want for the rest of the day? Of course even I don't know it all, or what the right answers are all of the time, despite spending all my time with her.

Guilt is something I think most mothers feel, whether it's not spending enough time with their children, not giving them the right food or not matching up to others. I feel guilty that Sasha will not have the 'normal' life other children get, and guilty that 'm not doing enough to help her, particularly with her speech. I'm guilty that Tamsin has to put up with Sasha's behaviour sometimes too, and that she doesn't get as much of my attention as she might have otherwise had. I felt guilty in assembly this morning, as Sasha did not of course want to sit still and watch/listen to what was going on, so I had to let her wander into the nearby classroom (where she found funnily enough a pair of giant dice that amused her!!). When another mum with a younger child is sitting nearby and doesn't allow her younger child to do that, it makes me feel bad that I do 'give in' to Sasha and let her do it. But the consequence of not letting her wander would literally be an assembly which no-one could hear or enjoy. Of course I would never have let Tamsin wander off (although she wasn't generally that way inclined anyhow!) but the difference is that there may have been a few tears from Tamsin, but she would have understood that I meant she needed to sit still and be quiet. Sasha would not want to understand that, and would therefore need restraining physically - and a gag in her mouth might do the trick but would be of course totally unacceptable! However despite the guilt my heart did jump and I couldn't help laughing, almost crying, at the point in assembly when the birthday cake candles were lit for the children whose birthdays it was, and everyone sung happy birthday to them..... Sasha loves this - she came running back in from the other classroom, and was the first to shout a big yay and clap very loudly at the end of the candle blowing, prompting everyone to look round and smile at her. Priceless! Thank goodness she is so good, cheeky and lovable most of the time, it more than makes up for the difficult times!

Right off to do that laundry now... and more on the speech therapy or lack of next time.
read more "Tears and Tantrums for the EYAS"

Thursday, 10 June 2010

Rice Krispies and Water

OK so just a short one tonight but I've kept you in suspense long enough (is anyone reading this? Does anyone really care??!!).....

A large part of my time at home seems to be spent on my hands and knees in the playroom (otherwise known as Sasha's room), clearing up after her, in particular foodstuffs. She is great at breakfast time (unlike number 1 who refuses everything) and generally eats a whole weetabix (some dropped off spoon onto mat, last little bit left in bowl), followed by some toast with butter (crusts left on floor, just off plate) and then for quite a while she was requesting a bowl of rice krispies, no milk. She then proceeds to have about 2 or 3 spoonfuls of these, but somehow after I've left the room it would seem the majority of the remainder ends up spread across the floor. And as we all know, once trodden in these make even more of a mess! To wash all this down (quite literally for a while back then!) she has water in a 'sippy cup'. She is more than capable of drinking out of an open cup - in fact she has better co-ordination than Tamsin did at her age - but the trouble is as much as she is thirsty and likes to drink gallons of water, she also likes to see it spread around a room on the floor or any other surface. It was getting a bit too close for comfort when it was over the TV stand next to the TV and above the DVD player. All done when we are out of the room of course, but we have the same issue with trying to explain to her what she has done wrong and her not really taking it in. At least it's only water; that's all she ever drinks despite having been offered juice etc - again so unlike Tamsin who did not ever drink water and has a minimal amount of juice.

I was thinking that there probably aren't many 3 year olds who still need a messy mat, but then I guess I perpetuated that by letting her sit with food in front of her much loved DVD collection. However I would have liked to see anyone else try to keep her sitting at a table for mealtimes only (a few have tried, rarely succeeded). She's a big snacker generally, and good with breakfast and lunch but rarely eats proper tea - her variety of food intake is quite limited. To be honest we allowed the same behaviour with Tamsin at her age, and I don't think any parents of children who eat well - everything that is put down in front of them (hello older brother) - would ever understand why I did this. For me it was just one way of coping with what was the most stressful part to me of bringing up children - mealtimes. Tamsin has grown out of most of the troubles even if she's not the world's greatest eater. She now understands why she sits down at the table at the requested times, and I'd not be embarrassed to take her to any restaurant or someone else's house, so I guess I always thought that Sasha would learn this too. She might yet - she is improving and will sit with us sometimes and even eat a semi-decent meal (if it's what she wants!) but then it's very mood dependent. At least her routines are not so rigid that they don't change every once in a while - I really admire mums of children with more challenging autistic behaviour than Sasha, they must have the patient of a saint!

Ah, you picks your battles is all I can finish with here.
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Monday, 7 June 2010

Party and holidays - 'normal' life stuff

Well long time no blog as they say...! Loads to write about and it'll probably all come out in a jumble tonight, so apologies in advance for that!

Had lots going on since my last post - namely a 5th birthday Princess party for Tamsin and a family holiday with friends to France, but also a visit from our Early Years Autism Specialist - more on that later.


The birthday party went pretty well (amazing what money can buy... just glad Tamsin has decided she's too old to love pink now after and not before it!). Sasha was amazingly well behaved that day, despite not having her usual lunchtime nap. In fact I'd go as far as to say she was generally better behaved than lots of others her age - she joined in with the party games with all the other children and had lots of fun, sat still for some tea and didn't even mind that she didn't get to blow out the candles on the birthday cake (her favourite thing ever!) - she only cried right at the end when she was really tired. Which is of course great news, but at the same time it makes things more difficult. I can totally understand how anyone else seeing her on that day would wonder what I'm talking about when I say she's a challenge, and probably wouldn't even believe the diagnosis we have. That worries me though, because as much as I'd like her to be totally 'cured', this isn't something that she will just grow out of, and I need her to get the help she needs for starting school and not just be written off as 'she's not that bad' or 'she's very mildly affected'. A teacher who has 29 other children to deal with will not have the time and patience to help with Sasha's understanding all the time.

So many people lately keep telling me how much she's improving, and things like 'oh I can understand her much better now', and 'she's so intelligent' etc etc, but as much as they mean well, it is almost as if they are trying to point out to me that she doesn't have a problem or that it/she's getting better. But nobody else spends as much time with her as me, and of course I can see the improvements for myself - but I can also see the times that are not going so well, her distress at unusual things, and the widening gap between Sasha and her peers. A couple of weeks ago I asked Sasha to put the rubbish from her fruit bar (see she does eat some healthy things ;) ) into a bin when we were out somewhere, and I was amazed when she did actually look at me, think about it and then go and follow my instruction. But most (almost) 3 year olds would be doing this routinely for some time already - and it's not Sasha being naughty not doing it, it is just the lack of understanding. Sometimes the difficult thing is remembering to ask her to do things rather than just clearing up after her, as when you're being ignored for so long it does wear you down a bit! And of course just because she's done it for me once, doesn't mean she will again anytime soon.

Another example is when I took Tamsin to Irish dancing tonight, and Sasha took her shoes off and wanted to stay in the room and do dancing too. Tamsin has a friend there who has a sister the same age as Sasha, who does already join in the classes with her older sister. But I just couldn't leave Sasha in there as she would maybe join in for the first 5 minutes but she would then most probably want to carry on doing her own thing, definitely not sitting quietly if she was asked, and quite likely curling up into a ball on the floor and not moving if she was remonstrated with. I can just imagine all the others dancing over her now! If I stayed in the class it would be no better as she would just look to me to do it with her and get bored fairly quickly anyhow. But the other girl her age is perfectly capable of following instructions, and understands when it is not acceptable to disrupt a class like that. There's another little sister at school who is already doing ballet lessons - something which Tamsin also started shortly after her 3rd birthday. I can't imagine when or if I'll be able to leave Sasha at an organised session like those which Tamsin has enjoyed - which makes me feel extremely grateful to nursery for the break! I do try to banish all thoughts of how the future might be, but even dealing with these little disappointments as we go along now, and all the tidying up after Sasha and managing daily situations does make me extremely tired a lot of the time.

Today I took Sasha to the Splash park, a great free facility in St.Albans which involves lots of water spouts and general good fun. It highlighted a big difference in my girls to me - Sasha was quite happy to wander off into it on her own, and smile/chatter at others her own age (although not actually play or join in with) whilst amusing herself. Tamsin was always clinging to my legs at this age, and wouldn't have been anywhere out of my sight. In fact she's still pretty much like that now, won't say boo to a goose and needs other children to make the first move to say hello usually! Sasha has shown me how nice it is to have a more independent child in some ways - but then unfortunately because of how she is, I do need to stand and watch.
I have been considering trying to get an appointment with a specialist at Ormond Street, as I know a couple of others have done. Not that I think she doesn't have autism, just that it'd be good to understand her specific problems and needs rather than sling her under an all-encompassing umbrella. So we'll see - maybe when life quietens down a bit! Anyhow back to today - it did take a turn downhill when Sasha decided she wanted an orange lolly, but the only one they had was the push-up (Calippo style) one. As these are too cold and hard to push up instantly, and difficult for little ones to do anyway, the having to hold it and wait was too much for her and the mood instantly changed so back off home we went. Again something you could explain to other children her age and they would get over more quickly. Ho hum.

Just come back from a week away at some gites in France with friends who had other children similar ages. We had a really lovely time, didn't do much at all so really quite relaxing. Not sure the fact that Sasha had her DVD playing a lot of the time went down that well with the other parents, as their children all wanted to come in and watch!! But that's something I do have to let go, as it does calm Sasha down when she feels she needs it. Interestingly, Tamsin is not really that fussed when the telly /DVD is on anymore, she's quite happy to let it go in the background and get on with her own thing. So anyhow hols were great, and again Sasha was on great form most of the time, so I can see those who didn't know her so well wondering what the issue was. Guess I should be grateful that there seem to have been so many great times lately - just makes me a little anxious waiting for the next run of mood swings. Think it's a bit like the growth spurts that other children have - difficult to time! The flights went relatively well and I was very pleased that the extra £58 for Speedy Boarding paid off both times - we were actually first on the plane home! Sasha was really good for take-off and the flight itself, but obviously didn't like landing at all either time, and I had to pull her onto my lap to calm her down before she did herself an injury both times. Being tired probably didn't help, so I can only hope that situation gets better as she gets older.

Really must stop here tonight as it's turned into an epic.. so more to come on the Autism Specialist visit in my next post. We did have some good news in that we have been awarded the DLA for Sasha, which we will be able to put towards speech therapy.. more on that next time too. Oh and I've still got the water and Rice Krispies to write about, bet you can't wait ;)
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Monday, 17 May 2010

Autism basic facts

Hi, have been meaning to blog for a while but mega busy due to a big girl's birthday this month! Have one blog in mind for future days ('Rice Krispies and water' - bet you're intrigued now ;) ) but for now I'd just like to post some 'top facts' about autism which another mum I've met recently sent to me as a good starting point to try and raise awareness.

Parents of children with autism quickly discover the top autism facts. But what about in-laws, teachers, friends, cousins etc? Few people outside the immediate family really want to read pages and pages of in depth information. Here I have tried to present some basics for a quick read. These are not all my own words but words I have picked from many different places but I believe they are words that help raise awareness. Please feel free to add to it, send it on to as many people as possible, change it etc. Thank you!!

What do these people have in common?

Thomas Edison, Albert Einstein, Michael Jackson, Woody Allen, Mozart, Bethoven, Gary Numan, Dan Akroyd, George Orwell, Bill Gates, Michael Palin, Alfred Hitchcock, Isaac Newton, Jane Austin, Hans Christian Anderson, Charles Darwin, Thomas Jefferson and Michelangelo di Lodovico.

They are all believed to be or have been (as some are dead) on the Autistic Spectrum.

Autism Is a 'Spectrum' Disorder

People with autism can be a little autistic or very autistic. Thus, it is possible to be bright, verbal and autistic as well as locked in their own world, non-verbal and autistic. The most significant shared symptom is difficulty with social communication (eye contact, conversation, taking another's perspective, etc.).

Asperger Syndrome is a High Functioning Form of Autism

Asperger Syndrome (AS) is considered to be a part of the autism spectrum. The only significant difference between AS and High Functioning Autism is that people with AS usually develop speech right on time while people with autism usually have speech delays. People with AS are generally very bright and verbal, but have significant social deficits (which is why AS has earned the nickname "Geek Syndrome").

People With Autism Are Different from One Another

If you've seen Rainman or a TV show about autism, you may think you know what autism "looks like." In fact, when you've met one person with autism you've met ONE person with autism. Some people with autism are chatty; others are silent. Many have sensory issues, gastrointestinal problems, sleep difficulties and other medical problems. Others may have social-communication delays - and that's it.

There Are Dozens of Treatments for Autism - But No 'Cure'
There Are Many Theories on the Cause of Autism, But No Consensus.
At present, most researchers think autism is caused by a combination of genetic and environmental factors - and it's quite possible that different people's symptoms have different causes.

People Don't Grow Out of Autism

Autism is a lifelong diagnosis. For some people, often (but not always) those who receive intensive early intervention, symptoms may decrease radically. People with autism can also learn coping skills to help them manage their difficulties and even build on their unique strengths. But people with autism will be autistic throughout their lives.

Families Coping with Autism Need Help and Support

Even "high functioning" autism is challenging for parents. "Low functioning" autism can be overwhelming to the entire family. Families may be under a great deal of stress, and they need all the non-judgemental help they can get from friends, extended family, and service providers. Respite care (someone else taking care of the person with autism while other family members take a break) can be a marriage and/or family-saver!

There Are Many Unfounded Myths About Autism

The media is full of stories about autism, and many of those stories are less than accurate. For example, you may have heard that people with autism are cold and unfeeling, or that people with autism never marry or hold productive jobs. Since every person with autism is different, however, such "always" and "never" statements simply don't hold water. To understand a person with autism, it's a good idea to spend some time getting to know him or her - personally!  

Autistic People Have Many Strengths and Abilities

It may seem that autism is a wholly negative diagnosis. But almost everyone on the autism spectrum has a great to deal to offer the world. People with autism are among the most forthright, non-judgemental, passionate people you'll ever meet. They are also ideal candidates for many types of careers.

Autism has nothing whatsoever to do with the way parents bring up their children

Children and adults on the autistic spectrum are funny, quirky, frustrating and unique. With 1 in 110 children now being diagnosed there is an excellent chance we will all be touched personally by autism in our lifetimes. Hopefully with raised awareness of this issue we will have more understanding of people with autism as well as the effect it has on a family. I would like to think that when people witness a child having a meltdown in public they will be compassionate rather than judgemental.

Sasha is still very young and has a lot of developing to do of course like any child of her age, so we have no idea what her characteristics are going to be. At the moment we can say she is loving and lovable, doesn’t really seem to have an issue with affection or eye contact for example, but does struggle to focus on activities or take direction from others (i.e. she likes to do just what she wants to do – like many toddlers!). She has delayed speech and limited understanding of some concepts, such as time, but is intelligent – she could count to 10 in both English and Spanish at a very young age, and knows when she is asking for chocolate when she shouldn’t be! That’s just a snapshot of course :)
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Thursday, 6 May 2010

Well just a quick post tonight as I need to research trampolines :) am v excited that we have decided to buy one, as I know how much Sasha is going to enjoy it particularly - but also Tamsin (and maybe even Mummy, always looking for new ways to keep fit ;) ).

Am feeling fairly positive again at the mo, although it'd be fair to say that Sasha's behaviour has seemed to get slightly more challenging lately... not only during the day, but at bedtime too. She used to be an angel at going to bed before, but now it takes much longer to settle her (and if I'm in it's generally me she wants of course!). My moods have really been up and down badly lately, and it's difficult even for me to understand why - poor old Chris!

Took her to Willows Farm this week to meet up with a couple of other mums I've recently met with slightly older autistic children (so they took their younger ones along), and it was lovely to be with them and feel that they understood. Not that I got to spend much time with them - Sasha rushes from one thing to the next and can't be persuaded to stay in one place very easily! Fortunately it was quite so she had a great time on the bouncy castle and trampolines with no queue. When we're in the indoors play centre though, I always have to keep my eye out for the 'sock police' - they are very hot on making children wear socks, which is extremely difficult for me as Sasha hasn't worn them for months! So I try and make an effort and show that I'm trying, but I really don't want to have to carry her away from the slide screaming just coz she's not got socks on. I feel like asking them to try and do it, but don't expect I'd get much sympathy or understanding! Sasha also loves the soft play area for under 2s, and as she is now nearly 3 I stand there keeping my fingers crossed that we are not caught by the 'age police'! She doesn't cause any issues, but of course she's fairly tall for her age so someone is bound to say something one time. I think now it is becoming more apparent that her speech is behind, which in a strange way is a relief as it is something to 'show' people who might not otherwise understand. On the other hand I want her to be able to speak better now so very much - she still hasn't told me she loves me, and maybe never will, who knows?

Tomorrow at last I meet with the lady from the Autism Advisory Service for the first time - remember, Sasha's diagnosis was back on 26th February for us, so this is over 2 months later!  So I'm intrigued as to what help she will be.... I've heard she's very knowledgeable, and that the nursery nurse will visit us regularly once assigned, so we'll see. Since I missed the call from the lady from Parent Partnership I've tried calling back and leaving messages several times, but nothing since. Hmmm. I'll steal the words of another mum with a diagnosis here, as I thought they were very good and fitting.... 'that whack around the back of the head with a cricket bat that is called a diagnosis, and the recognition as you're coming round from that, that there is help out there, but you have to access it all yourself - no-one can pick it off a shelf and give it to you'.

Also met another 'new' mum recently who has a boy with autism who started primary school this year. The school has been particularly useless in understanding him, sh feels, and so she's now got a statement and will be sending him to a specialist school, one that she's not even seen yet but is sure will be better than the mainstream one. The scary thing is he sounds a lot like Sasha is when he was her age..... Ah, I'll be having a lot of research on schools to do later this year, and will definitely be applying for that all-elusive Statement.

Right must go! x
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Saturday, 1 May 2010

Behaviour record

OK so today I have decided to blog mainly to remind me of a couple of examples of Sasha's recent behaviour...

Yesterday I had a (very nice) lady from the Money Advice Unit round to help me complete the DLA (Disability Living Allowance) forms. If we are successful in the application, this should at least help us with some private speech therapy (although unlikely to help us with the ABA ideal, as per my last blog!!). Everyone I've met recently on the autism 'network' has warned me that these forms are difficult to fill in, and I should have a box of tissues ready, as you really do have to look at all the negatives about Sasha and not write down any of the positives. Well I didn't end up in tears, but it was mentally tough as of course there is so much positive I want to tell everyone about Sasha. I guess it's another small step on the way to really accepting how she is and how different the life journey will now be for us all compared to the one we had imagined - although of course, there's no way of knowing what path that will take.

So that went OK, but the evening fell apart slightly after I collected Sasha from nursery. She was actually in a great mood, and wanted to go out in our garden, even though it was drizzly. She put her wellies and coat on and collected her umbrella, then ran up and down the newly laid (by Daddy, well done) patio, jumping up and down and splashing in the muddy puddles (or muddles as she sometimes calls them!). I actually took some home video of her doing this, as she was having such a great time, but then as I moved away from watching her at the back door to go check on Tamsin, that didn't meet with her approval and so she decided to start crying about it. Which turned into a full blown tantrum when I didn't go to get her. She first of all knelt down on the wet grass, and then sat on it, getting wetter by the second, while I sat in the lounge and waited to see if she would calm down. It was about 5 mins later (I know, doesn't sound that long, but it was raining!) when Tamsin started laughing because, as she told me, 'Sasha's being silly and has taken her wellies off now'(no socks on of course), that I knew I'd have to go and get her. Of course as soon as we were inside and I removed her soaking wet trousers she recovered very quickly, but I was left wishing I'd taken video of that too, as an example of her unreasonable behaviour.

Then this morning started off with her in a great mood again (although me not so happy after having to get out of bed at 610). Everything went swimmingly until I suggested the playground, and she was very excited with that idea and wanted to go instantly. Fortunately Daddy and sister were also just about ready, so that was good. All set then, til Daddy brought the 2 scooters round for the girls to go on (it's a 2 minute walk round the corner, bliss!). Then for an inexplicable reason, Sasha started crying and refused to go, and nothing would change her mind. We're still not really sure why - could have been the scooter, which she does love, but maybe was just surprised by, or didn't fancy. Or could have been Daddy offering her the wrong coat. We really don't know, and that's part of what is so difficult. She then just wanted to sit cuddling me while daddy went off with sister to the park, and it took her a while to come back round to being happy. I spoke to another mum of an autistic girl at a coffee morning recently who pointed out that the weather being nice unexpectedly was not generally a good thing, as autistic children like to have everything planned and know in advance what is going to happen, so spontaneity goes out of the window. That definitely can be the case, but on the other hand Sasha seems to have inherited my 'impatient' gene but in a magnified way - which means if you suggest going to the playground or swimming with her, you had better be ready to walk out of the door with her as soon as you say it, or the moment and mood can be lost so easily. There is never any point in waking up and saying 'let's go to the park later' - later is a concept just not understood by Sasha.

So anyhow we did make it out to the playground this afternoon (with me not being particularly prepared for her request so looking like a right scruff!) and had a lovely time. On the way back though Sasha did stop walking suddenly (which she does like to do occasionallly, to make me go ahead for a bit, or to shout 'Stop... carry on!' for a giggle) and she crouched down on the pavement with her hands over her ears as if a noise was really bothering her. There was a lawnmower on and it may have been that, but I'm not really sure, I just know it unsettled her slightly whatever it was. She recovered Ok though, it didn't last too long. Had to deal with Tamsin's huge floods of tears at the same time because she cannot ride a bike easily... don't think she really appreciates yet that you have to put the effort in, bless! She just complains that her legs are always tired when she tries :) quite funny really, but not when you're trying to calm her down coz she's almost hysterical! General tiredness hits her badly unfortunately.

Anyhow both girls now sound asleep so off to bed I go too!
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