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Saturday, 30 January 2010

Bedtime routine and the 3 milestones to come....

Posting some more random thoughts following tonight's bedtime..... bedtime is certainly another area of difference between our two girls. Character difference or learning ability difference, I'm not sure.

Sasha has never really been interested in books, unlike Tamsin who has always wanted at least one but preferably 2, 3, 4 or 5 stories before bed, as well as being keen on them at other times of day from a very early age. I remember back fondly to the time when Tamsin was around 1, and we would have the same book at bedtime for months on end - it was the Spencer bear book, with flaps to open and a soft bear to stroke on both the front page and the inside last page. Tamsin would stroke him until she fell asleep! Wobble Bear was another one which got repeated endlessly and was well loved. Tamsin has also always been a big lover of soft toys - we have LOTS and I can guarantee she would know if we took any one of them away. She knows where they all came from, which are hers and which belong to Sasha. Sasha has never really shown any interest in soft toys, apart from Terry Turtle, who has gone everywhere with her from a very young age - possibly because he is very easy to grab round the neck!! Lately she has taken to using him as a pillow rather than cuddling him, not sure why.

Tamsin has never been keen on going to bed to sleep, and sometimes does use books as a way of trying to make sleep time as late as possible (I'm sure this is a common theme with young children!). Sasha on the other hand, had what I considered a great bedtime routine (until fairly recently), where she was always happy to go straight to bed after her bath, and when I did show her a book she would flick through the pages as fast as possible then push it away. Things improved over the last 4-6 months and she will now happily sit on my knee for a book at bedtime, but 90% of the time it has to be a Dora book (fortunately we have a few!) and even now she's not interested in hearing the story. Generally I can just get one, or at a push two sentences out per double spread, while she tries to race ahead to the pages she knows (Map or Backpack pages being the favourite - I'm guessing because it's a familiar format) or look under the flaps. She likes to say the word for every item in Backpack (although to a stranger the words would be hardly recognisable) but will only move on when I've repeated the word after her. This is similar when she's counting her numbers up to 10, and although she will do this sometimes without me repeating them, she won't move on when she's counting up to 7 in Spanish unless I repeat! For some reason she has dropped the number 6 in Spanish and won't be convinced that seis comes inbetween cinco and siete - not that I'm complaining, any numbers in any language is great!!!

Now whilst I'm sure she isn't the only toddler not wanting to sit still for a book, this did make me think again tonight about what's the difference between this and other 'normal' toddler behaviour? Well the answer is that it's not just this behaviour, it's all the little things that I've been mentioning, and more, which all add up.

I've read one great book on autism so far - Ten Things Every Child With Autism Wishes You Knew by Ellen Notbohm. It was a great concise introduction to some of the behaviours and challenges faced, and in only slightly irritatingly American-speak :). Now I've started my second book, which is The Autistic Spectrum: A Guide For Parents and Professionals by Lorna Wing. Both have been eye-opening and struck chords in slightly different ways - the first more emotional and the second a lot more practical. Lorna Wing explains that autism is now considered to be a cognitive/brain development issue rather than an emotional/how the child is brought up one. After just a couple of chapters I'm already intrigued and would love to get a brain scan for Sasha, although it's debatable whether this would actually bring any conclusion.

There are 3 milestones coming up for Sasha which I'm slightly dreading. Potty training, losing the dummies and taking away the bedtime milk bottle. I've been using the excuse that she doesn't understand/grasp concepts and explanations very well, but I'm not sure if it's me trying to chicken out of them really. . All of them will be trying in their own way, but will feel like a real sense of achievement when they've happened. Sure it's easy for other people to say 'oh go on, just do it!' but the reality of being down on your knees scrubbing the floor and repeating yourself for at least 4 days (and that's what it took Tamsin is not one I relish! I'm also thinking that keeping the dummies until after Sasha's first flight in an aeroplane in May would be a good idea, as they are a tried and trusted way of calming her down (amazingly, chocolate doesn't always work ;) ). Daily now I do feel like Sasha is understanding more and more 'concepts' - maybe it's all been the hearing which has affected her speech and in turn had a knock-on affect on her understanding? Or is that just wishful thinking.....?
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Friday, 29 January 2010

Hearing test success!

Today is a great day. Was fretting last night over taking Sasha to a hearing test this morning, as the last time we went for one in December she wasn't interested at all in doing what the lady wanted her to. So this time I explained about our 'maybe' diagnosis, and that I thought it best to just do a physical check as she would be unlikely to 'play ball' (or stack the blocks on poles when she heard a sound in this case ;) ). Typically Sasha then went on to prove me wrong, and played the 'game' perfectly straight away and without any complaints! She heard most of the noises and it was obvious she could and that she knew what she was doing, which was such a great relief. The physical check did show no result instead of a peak, which means her ears are quite waxy and she has glue ear, which in turn I'm guessing could be a contributory factor to her poor speech - or maybe even the cause? Next appointment there in 2 months hopefully - at least now I'm not dreading going back, and Sasha won't remember it as an evil place!

Still no word from speech therapy, so off to chase again. Looking forward to another lazy weekend... :)
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Wednesday, 27 January 2010

Chasing for appointments

Today I called both the SALT and paediatrician to find out about next appointments, and had to leave answerphone messages for both. The paediatrician's secretary did call me back just before 5pm, but only to say that she knew the report had been written but that she couldn't say when the next appointment would be. I pointed out that the paed had told me I'd see her again in a month, but she sounded confused and unsure of that, saying she is away at half term and so she really didn't think I'd get an appointment before early March. My heart sank and I'm already sure this is the start of lots of brush offs. Still I tried to stay as polite as possible, realise I need to stay on the right side of this lady!

Sasha was in nursery all day today - she was very pleased to see Tamsin and I when we went to collect her, but the fact I had taken her Upsy Daisy boots home and she would have to wear her nursery boots home was a dealbreaker. Eventually we left with no boots on her feet (so she had to sit in the buggy when normally she quite likes walking home). At home it was straight to the kitchen as usual, and refusal of all healthy tea options, so I compromised and let her have one little chocolate to calm her whilst I then warmed her Dora pasta shapes (her favourite), and made her some toast. Am sure she doesn't get snacks as often as she would like at nursery! Hunger is definitely something that sets her off and sometimes she's not patient enough to wait for 'proper' food. Having said that, she will still eat some good foods happily, unlike her big sister who only ever really wants to eat the sweet unhealthy stuff! Ah food, the bain of my life!

So straight after tea Sasha made her way upstairs alone and came to find me holding the summer dress AGAIN (freshly washed now though!). Only slightly worried about what will happen when she grows out of it....
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Tuesday, 26 January 2010

'normal'? clothes - ok only if it's a summer dress.

Still no news on when our next appointments will be - something I need to chase up tomorrow in my 'free' time. Sasha has impressed me today by counting aloud in Spanish up to 7 (thanks Dora!) - although I'm sure no-one else would know that's what she's doing unless it's pointed out to them. Even then they may not believe it :) took me a while to realise myself!

The word 'normal' keeps sticking in my mind, and it's not really about how I see Sasha or Tamsin, but more about how society labels people, and what really is classed as 'normal' these days. We are lucky enough to have had a lovely 2 year old girl with Downs Syndrome join our swimming class this term, although she has been initially a little reluctant to join in, just like Sasha was last term. Again I felt embarrassed as I told her mum about Sasha, as if I didn't or don't really have anything to complain about (which is true - again I'm not complaining, just feel a need to explain). I also know very little about Downs Syndrome, although I will make the effort to learn a little more. I think what struck me is that she probably doesn't need to explain to strangers how her little girl is, and yet I'm sure everyone makes their own assessment without really knowing her. In a way, I guess that is what will happen with Sasha, and possibly even more so as nothing is obvious physically 'different' and a lot of her behaviour, as I've already mentioned, is on a par with most other toddlers. But I'm already concerned for her and how people perceive her if they don't really know/understand what is the matter - and as so few people know anything about autism (myself included until very recently), who can blame them? That's why, in a way, I feel it's important to spread the word - even if writing and not talking is my best way of communicating!

I recently filled a new photo frame with 3 photos (as there were 3 gaps in it, that seemed like a good idea ;) ). One of each of my girls independently, and one of them together. The one of Sasha on her own is from summertime when we had a lovely day meeting up with an old friend of mine in Kew Gardens, and Sasha is wearing a nice summer dress and sandals in it. Now although Tamsin has always been a skirt or dress kind of girl, Sasha has not really shown a preference (other than for no clothes at all) and so has mostly been dressed in trousers. From the first time she saw this picture in the frame, she went to her wardrobe and found the dress (which thankfully still fits!!) and has been asking for the sandals (which I believe are in the loft somewhere as they probably don't!). She has wanted to wear it nearly every day since, although mostly not to go out in (phew, it is winter after all). After last night, I had put it in the wash basket, and this afternoon she started looking for it again. She made it clear to me what she wanted, by taking me to the wardrobe and refusing every other dress in there, and then started to get very upset/irate when I tried to explain it was in the wash. After 10 minutes I gave up and the dress (slightly dirty) went back on - after all that would do no harm. Now is that normal toddler behaviour? Was she understanding my explanation of it needing washing? I'm really not sure on either count. However I think if it had been Tamsin at the age, she could have been mollified with something else equally nice.

Which brings me back to another memory which hit me yesterday, and which I've alluded to just above. Sasha not wanting to wear clothes. It would be a real struggle for us to get anything on her, with screams and much wriggling, and although most days now it's not so bad, she still hates socks with a passion (maybe it's the Dora overload??!) and would much rather be in just her nappy at home even on these cold days. And she was adamant she did not want to wear a coat out today, just her fleece top. Maybe 2 pointers for autism - sensory overload is one (in more severe cases children can't bear to be touched or have aversions to zips, seams etc), and not feeling extremes of temperature or pain is another. But Sasha is not exhibiting extreme reactions - again can that be put down to 'normal' toddler behaviour? Or is it just that she is learning, and we have in some way conditioned her into understanding that wearing clothes outdoors and at nursery is the socially acceptable thing to do, so she just tolerates it? Boy I wish she could talk ;)

Well that's enough for tonight, I can hear her coughing away upstairs now. She helpfully has one of those annoying coughs that gets much worse when you lie down and are very tired, so I've been up and downstairs watching DVDs between 2am and 4am for the last 3 nights, yawn! Tamsin got up at 4am last night to see what was going on but thankfully turned into a little angel and went straight back to bed. Which is where I'm off to now!
read more "'normal'? clothes - ok only if it's a summer dress."

Friday, 22 January 2010

Going round in circles

So, a couple of days off writing and emotions going up and down and roundabout again - not helped by even more sickness. Looking forward to feeling fit and healthy again sometime soon.

Talking to more people now about the situation and I think it helps..... but am swinging between thinking Sasha does have this problem and wondering again whether she is just a 'normal' toddler. They all have their moments, and in fact Sasha's behaviour is often better than her elder sister's! She seems generally more content - but I have to admit that I have probably altered my behaviour to let her be more settled. I think the difference is in how the little things seem to stress Sasha (and therefore me!) out rather than just upset her as they would Tamsin, but I can't really be sure anymore. Need some time and space to think things through, and our chance to talk this through with a professional can't come soon enough.

Am happy though that she seems to be enjoying her extended hours at nursery, and she does still show signs of development. This morning she attempted to read a book to me at the kitchen table, and although the speech isn't clear, the intention and intonations definitely were. Even as little as a month ago this is something I couldn't imagine Sasha doing - any more than 2 seconds a page was too long for her to take interest in any book!

Will try to continue to record both the improvements and the differences over the coming weeks...
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Tuesday, 19 January 2010

PMA - Positive Mental Attitude and log of events

Today I woke up feeling much more positive (despite Tamsin stumbling in to sleep on her ski-ing Dad's side of the bed at 3am and rustling for half an hour!). So glad, think positive is the best way to be. That means I realise I can slow down the rush to want to find out all I can and do everything now - take a step back and re-appraise. So much to learn and so many people to talk to, but there's time, we're doing the best we can for now and of course that is good enough. Another friend has also had some difficult news this week; I think that always makes you stop and think about what you do have and to be thankful of that, as well as wonder how best to phrase things to make them feel OK.

Sasha seems very happy to be going to her nursery more often (was one day a week, has increased to 2 full days and 2 extra 2 hour sessions), and of course this is less stressful and calming for me, knowing she is being well looked after and getting a greater variety of influences there. Took her swimming this morning, which she has always loved as she is a natural water babe - however back last September when we started these classes she would shout 'bye' every 2 minutes and try to get out of the pool - definitely wasn't keen on the idea of being told what to do. Like most toddlers surely? Except with Sasha I feel it was more about the unknown, the change from routine. Now she knows the teacher and the songs and actions, it's definitely not a struggle anymore, we always enjoy being in the water and I'll stay in with her as long as I can each time as I know she's happy there (especially when she's pouring the watering can over my head :) ). I did tell the teacher about our recent 'nearly' diagnosis (after all, it's not definite yet), but felt strangely odd telling her, a bit embarrassed maybe? Not embarrassed of Sasha at all, but maybe embarrassed that she may think I was using the news as an excuse for bad behaviour. It's not at all an excuse, but is a reason for it, and I think it's fair to let other people know - they're hardly going to guess. The news has certainly given me more patience, although of course it is still very frustrating when I can't understand her sentences or mollify her behaviour.

Haven't really explained yet how this has all come about. We had noticed that Sasha's speech hadn't developed well compared to others her age, and also compared to her elder sister, who was chattering away from 18 months! Sasha was very verbal, and seemed to have developed her own language, but only had about 10 words which we could recognise:
bubble (which was strangely very clear!), mama, dada, 'wa' for water, 'a' and a pat on the head for hat are those I can remember.
So after she turned 2 I enquired with the health visitors what we should do, and they said that nothing would be done by them until after the age of 2 and a half. However we were given the advice that we could refer directly ourselves, so I did. That was back at the start of August, and by the time of our speech assessment in October Sasha had made some progress, with more words, Teletubbies names and even the odd sentence/phrase like 'there it is'. But I'd say none of it was very clear to an outsider. The speech therapist ran through what sounds were common for a 2 and a half year old to make, and from what she was saying, it seemed almost as if Sasha wasn't really that far behind, just more likely that the others were far ahead! So we weren't concerned - until a couple of weeks later, when we got the report the SALT (Speech and Language Therapist - there's a lot of new acronyms and abbreviations to learn now!) did from the nursery visit, which stated Sasha didn't interact well with the other children or use many words there, and that she was going to be referred for a development check.
I think in the run up to Christmas this also didn't cause us a great amount of worry, as Sasha seemed so happy as always and was developing still further - new phrases such as 'where mama gone', and the fact she could now count to 10 and backwards, although again to an outsider the numbers may not be instantly recognisable, and certainly not if they were out of context. However we knew she could do it, and I think even someone at nursery said that there were plenty of older children who can't count, so the thought was there - 'well that must mean she's clever, right?'.

So Christmas took over and that's how it was up until the 14th Jan (which already seems like a long time ago). I think during the assessment, as I watched her get irritated with the paediatrician and ignore her basic questions ('can you pass me the big triangle Sasha?' 'Sasha, which one is the red block?'), it dawned on me slowly how her behaviour couldn't really be excused by tiredness (it was 930am) and that although she was doing the shape puzzles in double quick time whichever way they were presented to her, she wouldn't play with anything at all if she didn't want to and nothing held her attention for very long. Oh except that is, for the first toy, which was a small box with 3 boxes in it, red, blue and yellow. Each box had 2 wooden blocks in it, one large, one small. I watched fascinated as Sasha would empty them all out, then quickly line them up according to the colour and size, then tidy them away again - in exactly the same order/place they had come out. She never seemed to tire of this. But when the paediatrician asked her to build a tower with the blocks, again the ignoring/not interested. I almost laughed that night when I read one of my first mumsnet posts on the special needs board, where a mum explained her child doing a very similar thing at an assessment! Sasha cried when these blocks were put out of her reach to try and get her to move onto something else, and she didn't last much longer before she was trying to get her boots and socks and coat on ready to go out of the door, saying 'bye-bye' as loudly as she could.

Oh yes, socks, did I say Sasha really doesn't like wearing socks?! Or in fact, trousers, or her top or vest - in fact we're lucky she hasn't figured how to take her nappy off yet (well she did it once but I think we're lucky and have got away with it as she may have forgotten :) ), as she generally prefers to walk around naked at home and will get very upset if you won't help her undress!

It's really hard for me to explain how she's different, lots of the actions could of course just be excused as 'normal' toddler behaviour. I'll try and give one example, which occurred yesterday. As I was ill, Sasha had gone into nursery for an extra day (I was worried she'd be upset but thankfully she went in happily) and Tamsin went to a friend's after school for her tea. So when I picked Sasha up at 5 and we walked home from nursery (some days we walk, sometimes I collect her in car on way back from collecting Tamsin), I had to get her straight into the car to go and collect her sister. Although I obviously explained what was going to happen to Sasha, I'm not sure if she was understanding or just resistant, but she started (as I expected) to kick off, arch her back, nearly bang herself on the car door and not get into the car seat etc. Not down to tiredness, as at nursery she is still getting a 2 hour sleep during the day - something she sadly now doesn't do at home (although it has helped with bedtime!). At her age most children would, I think, be at least a little excited or curious about doing something or going somewhere unusual. However for Sasha it is all about the routine, and the fact she wasn't coming home to go inside home (iyswim) meant she was way out of her comfort zone. Although I know others probably don't see it or get it, I do understand this now and so, as the paediatrician suggested, my life has already changed, as I do try to accommodate Sasha by generally not doing things which I know will unsettle/distress her. But I wouldn't have it any other way, it's not difficult for me to make those changes and I try not to let any affect Tamsin.

Another example is when we dropped Tamsin off at her friend's house in the morning so she could walk to school with them, which meant me getting out of the car for 1 minute to take Tamsin to their door, but not getting Sasha out to walk to school like we normally do - as I jumped back in the car Sasha was red faced and had tears streaming down her cheeks, and it had literally been 1 minute! Sometimes though, Sasha does surprise me and is perfectly happy in unusual situations, so I do also try to do new things when I know there's a get-out clause!

Enough for tonight, hubby due back from skiing soon thankfully - he'd better not tell me he's tired though ;) !
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Monday, 18 January 2010

Tearful - and effect on siblings?

OK so am feeling a little tearful today, but not sure if that is due to little sleep thanks to a bout of sickness and d last night - always helpful when hubby is still away skiing! Still feeling rough so not sure how much I'll be up to today....

This 'borderline' issue is what is still at the front of my mind today - I know everyone means well, but I'd rather people faced up to the situation than try to brush it off. Of course there's no point worrying endlessly about the future, but forewarned is forearmed and the more we can read to understand, and the quicker we can get things moving with the professionals will all be the best we can do for Sasha. It's not going to just go away, with help it may improve, but we do need to be realistic and face the fact that it could get worse. Of course I'm sure any parent of a child with severe autism would rather swap and be in my shoes right now, but that doesn't really help.

So I titled this blog 'stephstwogirls' because I am very conscious of not wanting to turn everything to be all about Sasha. I hope up til now we've had an even balance in our family and the last thing I want to see is for this to be tipped in any way. Tamsin is wonderful, enjoying school and learning so much - we're so proud of her. I'm wondering now when and what to tell her about Sasha - she's already so understanding about lots of things, but is this too much to put on her so young? Or will she end up wondering what all the doctors appointments are about and feeling left out if we don't explain? Although we will carry on teaching right from wrong and not letting Sasha get away with unacceptable behaviour, there are times when it is easier to bend the rules - such as not quite so strict mealtimes, letting her watch the DVD she wants to avoid a meltdown etc. I don't want this to start affecting Tamsin's behaviour, so feel that we will need to 'have a chat' - but how to explain? How much to say? Don't really want to turn it into a huge issue for her either, think we need to keep it lighthearted if that's possible!

Right back off to bed for me (well after some hoovering!) and maybe try to think a bit less for now.
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Sunday, 17 January 2010

Mum always knows best

They say Mums always know best, and I'd have to say I agree. As the days go on I'm trying to take things in slowly, but I think it's already dawning on me that my first assumption that Sasha must be borderline is not necessarily the case. Several friends and family are almost disbelieving - 'no, how can that be?' 'but she's such a happy contented little girl' - so either they're good fibbers or it's really not obvious to others. However, as I spend so much of my time with her, all the little things do add up - yes, I know that lots of toddlers like to eat from certain plates or drink out of certain cups, and don't like to wear their clothes sometimes... my elder daughter's insistence on only purple juice or pink plates for over a year may have been a 'sign'.... but with Sasha it's different. It's more than that. Many little things from each of the three 'impairments' as they're known - social interaction, social communication and rigidity of thinking. And then again, so many things she does seem to understand and do - she knows the difference between right and wrong, she can tell facial expressions and tone of voice, she will pass Tamsin's toys back to her and share well - when it suits her! But if the signs have already been spotted by a professional who only spent an hour and a half with her, then possibly they're not as borderline as I thought - when you know what you're looking for. At this stage my biggest fear is that the gap will get bigger and the struggles more profound as she grows older - the best reason there is for fighting for as much help as we can get as soon as we can get it. Will mainstream school be an option? Only time will tell I guess.
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Saturday, 16 January 2010

Day 3 - log of events from referral

So. Day 3 and what a cracker. Other half left early (4am) for a 4 day ski trip and it's been a very long day already. Didn't help myself by taking girls to local indoor play centre, and thus spending 2 hours running around after them up and down steps, through tubes etc, but we did want to catch up with an old friend who we've not seen for ages. Now am feeling very run down and achey, can't wait to go to bed tonight! But head still buzzing of course.

Have started putting the feelers out and of course there are people around locally with children with ASD, you just don't notice it when it doesn't really concern you. Surprisingly 1 in 100 children supposedly have some form of this, and its occurrence has been increasing in recent years. Fascinating what may be causing that, if I only had the time to research it. No time now as there is so much to research already. From where I'm standing it seems like an Everest sized mountain of information! Been in touch with the lovely mums on mumsnet, where there is a special needs board (seems strange to think I need to look there now), and already some things are becoming clearer. Firstly, that Sasha may actually not really be borderline - she's still so young, and it may well be that the gap becomes wider. But hopefully if we can get her all the support she needs this won't be the case. However someone has pointed out that our area seems to be of the worst areas for getting help at all, so I'm guessing I'll learn to develop a hard skin and tough neck myself now! Funny how you will do anything for your kids....

There is a constant flitting back and forth in my mind that it isn't a big deal, she's not bad and at least she'll get some help going forward, but on the other hand it is a 'ginormous' deal, our lives have already changed in a way we didn't realise, and the future is definitely not the same colour we always thought it was. However I need to stay positive, don't think breaking down really helps anyone, so onwards we go.

Another good bit of advice I've had is to document everything, which is where I'm hoping this will come in handy - as I said at the start, I need to think back to questions asked by the paediatrician about not only her current behaviour but how the birth was, when she sat up, when she first said mama etc. But all of that seemed to be jigging along so normally at the time, it's difficult to find anything that stands out. So over the coming days I'll just be throwing in random memories for my own benefit.

Also need to document who we've seen and when. First I referred Sasha for speech in August last year, we had our first assessment (where Sasha played with toys but unlike her said nothing at all whilst in the room!) end of October, M the speech therapist did a nursery visit to check on Sasha there in November, and then referred us to paediatrician for a development check. In the meantime we also had a home visit from a health visitor to do Sasha's 2 and a half year check, but nothing was really said or concluded from this. Jan 14th was an hour and a half long session with the paediatrician, who said she would call nursery and speak to M the speech therapist again, and then meet with me/Mr C in a months time to discuss the next steps. So watch this space for mid Feb! Of course I'm already expecting lots of waiting and appointments, what joy.

Friends who already know have of course been very supportive, with lots of offers of help which is great. Somehow you still feel a bit isolated though as no-one else can really understand the little things. Am hoping this will change as I get to meet other local people in the same situation - but of course what I really want is to carry on my 'normal' life with my 'normal' friends the same way I always have done. Hopefully that won't get too difficult with more demands on my time.
Have only been able to update this as both girls exhausted and napping - yes at tea time! Which is what I should be doing, so I'll end here for now.
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Friday, 15 January 2010

Day 2 - denial?

So. Where to start today? After an OK-ish nights sleep (considering I have tonsillitis and was awake lots to drink!!) I've awoken with lots of questions still. My head is buzzing. First, to tell people or not? Of course it's nobody else's business, and they don't need to know, but in a selfish way I'd like to say, as maybe people then get to understand a little bit. It's not just her with bad behaviour, or me being a terrible mum. It might explain why I haven't gone out as much with my second child - I rarely do supermarket trips with the girls, have stopped toddler groups with them as youngest wouldn't join in and am careful about where I go and at what times. It is a big thing to me, and of course we know lots of people. I want to just put it on my Facebook status, but am sure that's possibly not the best way to spread this kind of news. A few close friends already know but I feel tired at the thought of telling all the others.

At the same time I'm still really in denial about it. Our little girl is gorgeous and just herself, if she does have this (see, 'if' - not yet fully agreeing) then it's definitely not severe at all... but is that what all parents say?! I was given a great booklet by the paediatrician explaining the basics and what support there is, and one of the first things it says is 'it's not your fault, it's just how they are'. And yet I'm still questioning things I've done, trying to remember back and wondering if it was my fault. I have to admit I almost cried this morning when my eldest told me she loved me, and my first thought was how sad it is that youngest might not actually say those words to me. But then again of course she might - she says lots of things now in her own little language, and several that are recognisable, and that has improved over the past 6 months so why might it not develop more? I guess the uncertainty of what is ahead is something I am now going to have to get used to.

Someone's first reaction when told was a short silence and then 'well that was a quick decision wasn't it?' - i.e. too quick, how would they know when they don't even really know her? I can understand that, not really wanting to believe it, that she's just a normal child that we love very much. And it was a quick assessment, and isn't even definite yet. But I did spend an hour and a half with the doctor, who asked me lots of questions, let our youngest girl play and do her thing, and then tried to interact with her. It dawned on me even more as I was in that room that she doesn't do things 'right' for her age, and having read the booklet since, there's lots in it I can identify with about her behaviour that makes me think it wasn't a wrong, snap decision. But she is maybe on the fringe, her behaviour isn't terrible and doesn't make people stop and stare. She has recently started doing some role playing, like pouring cups of pretend tea etc - so maybe she's still just learning and growing, is just behind with development? See, there it is again, the disbelief.

So on the one hand I'm happy to have a quick decision and hopefully some answers/support/advice at such a young age and without fighting for it, but on the other I'm thinking 'well they can 'label' her as that now, but maybe she will grow out of it and we can forget it later'. Not sure it really works like that.....
So I'm off now to tell a few more people, and I thought I'd start with my local NCT group fellow emailers to see if anybody knows of someone locally in the same situation - as they say, it's good to talk (just not with tonsillitis ;) )
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Thursday, 14 January 2010

Today - a diagnosis of autism?

Well. I'm starting this blog after a visit to the paediatrician today with my younger daughter which brought some shock news that she may be diagnosed with autism.

The paediatrician visit was via a referral from a speech therapist - we noticed youngest daughter's speech was not clear and behind where it should be from about the age of 2, and so had referred her on ourselves at that point.

After sitting with this doctor and being asked several questions, it brought home to me how easy it is to forget about things that have happened in the past, or even that happen on a semi-regular basis, and so I'm intending to keep this blog as a kind of diary going forward to remind us what happened when. I'll also go back over what has happened to date, and it'll probably be full of emotion and lots of questions, so no promises it'll be easy to read!

I suppose the first thing to say is that I'm feeling a lot of different things right now - relief, guilt, sadness, loneliness, like I'm at the start of a long journey - and that I've got a million questions, with no idea where to start. I've also got tonsillitis, the gas man due tomorrow (and no that isn't a euphemism, our heating is not working properly!), a husband in late who I need to talk to and I'm very tired, so it's most likely I'll be ending this blog before I've even properly begun, and starting on it again in the morning.
But before I go, I just want to say I love both my daughters very much indeed :)
read more "Today - a diagnosis of autism?"