Friday, 26 February 2010

So what is autism?

Just a quick one today, as it struck me that I haven't really said much about ASD/autism yet. We've read a couple of really good books and can't exactly summarise them in a paragraph here, but for those who know nothing (like me just 3 months ago!!) I can pass on some info as I understand it.

First, we would generally say Sasha is diagnosed with ASD or has autism, rather than she is autistic. That's because saying she is autistic kind of implies that's all she is, whereas in reality she has autism, but that isn't the whole of her, she has many other skills and qualities. ASD is Autistic Spectrum Disorder - so called because the behaviours can range from mild to very severe - and I'm sure most people would understand it to be about the severe cases such as those that have been televised. Characteristics such as repetitive behaviour, lack of social awareness and the like can all be shown to varying degrees. The National Autistic Society (NAS) explains it as follows:
Autism is a lifelong developmental disability that affects the way a person communicates and relates to people around them. People with autism have difficulties with everyday social interaction.

In the 'olden' days, people assumed that autism was caused by parenting - so a lack of discipline for example would lead to bad behaviour. Nowadays thankfully a lot more research has been done, and this idea has been totally thrown out. Autism is complicated and down to the genetic make-up of a person, so you are in fact born with it. As per the NAS, 'Autism is a complex developmental disability involving a biological or organic defect in the functioning of the brain'.

The statistics now say 1 in 100 children will have autism, and it is amazing how many friends of friends who have children with this diagnosis have now been mentioned to me. I'm sure I will make some great new friends who share some of the same daily challenges as me - but then everyone is different, in the same way that some of my old mum friends will not have had the same food battles with their children as me but may have had worse child sleep problems! There is no proven reason for the increase in diagnosed cases, although it follows that some of this is down to increased understanding of ASD as a condition.

Two facts from the NAS, with links to their web page:

Over half a million people have autism in the UK
Boys are four times more likely to develop autism than girls

There are no cures for autism, it is not something that goes away as children grow up. There are various methods in practice, and developing all the time, to improve behaviour, but what works for one child may not for another. Again according to NAS: 'Autism is a lifelong developmental disability with no cure. Children with autism grow up to be adults with autism.' 

And there ends todays lesson :) just a quick intro, I'm sure I'll pass on more information in the future!
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Thursday, 25 February 2010

A diagnosis of ASD

So today we went back to see the paediatrician, and after asking Chris and I what we thought, she confirmed she would be giving Sasha a diagnosis of ASD - autistic spectrum disorder. Although it's a spectrum, they don't actually state where on the spectrum a child is at such a young age, as there would still be so much to develop at this age anyhow. It seemed as though she had already decided on that after our last meeting, but was not wanting to rush in and hurt our feelings, which is fair of her. As she must have experience, there's no need for us to doubt her thoughts.

So although it's not a shock, and it doesn't change anything on a day-to-day basis, it is of course a lot to take in. The next step is that her report gets sent off to the Autism Advisory service, who should then contact me in 4-6 weeks to offer some support - although what exactly that will be we're not so sure of!

From all I've read so far, this is really just the start of a fairly hard slog for me to get the right kind of help and support for Sasha. I've already heard about parents' evening and groups and even day courses to go on - all of which take up extra time of course. Then there's the minefield of so called 'intervention programmes', of which ABA seems to be a fairly new but recognised one - but also fairly expensive. And of course the speech therapy is the most important in my mind, I'm really hoping that can start as soon as possible. I almost cried this evening when she was sitting on my knee at bedtime and she hopefully said the same phrase to me 3 times, but I couldn't understand at all what she was wanting (nothing part of the usual routine, so maybe it was a roundabout request for sweeties!) and so that made her upset.

So it looks like time and money is what we need now to help our little darling. One thing I think we could benefit from is some parenting course to help us discover how best to treat Tamsin through all of this - I don't want her to start resenting Sasha in any way, but it's a bit much to expect her to understand everything going on at her age.

So good job I was sitting about twiddling my thumbs before all this news ;). Will just have to cram twice as much into our everyday lives now - anyone know of a good, cheap nanny??!!
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Monday, 22 February 2010

Good news and bad news?

So today I took Sasha for a follow up hearing test. Really it was more for my benefit to speak to a more qualified person who could maybe explain the last results better! Anyhow the same tests were done again, and Sasha behaved beautifully yet again, which is always a relief - although it was touch and go, as we had to wait 10 minutes past appointment time and she'd put her hat and boots back on and was trying to drag me out of the door when the lady came to get us!

So the frequency test she completed as well as last time, and this time they got a reading from her right ear, which means the fluid had drained so hearing all OK. Still a flat reading from her left ear, meaning some glue ear there, but they confirmed that they had no concerns over her hearing generally and they wouldn't need to see her again until she's about 4.

So good news in that her hearing is OK and we won't need to go along for more appointments, but bad news that it obviously isn't the hearing which is affecting her speech development. I guess I had been clutching at straws and hoping that bad hearing was the cause of her not being able to pronounce words properly, and it now seems that isn't the case. Which means that autism is a more likely explanation. At least it's good to have had this result before we go and see the paediatrician for the second time this week, it eliminates one aspect of her delay.
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Saturday, 20 February 2010

Scissors - a dangerous implement?!

Oh dear. Today didn't start off well when I found Tamsin sneaking back downstairs, leaving a huge pile of hair on the stairs behind her - her own hair! For some strange reason my usually very well-behaved girl decided to act like a 2 year old today, and when we weren't looking she cut huge chunks out of her hair with a pair of scissors. Still not quite sure why, and don't think she is either - she certainly didn't really appreciate what she was doing or the effect it would have on me! Ho hum, at least it grows back... will take a while though!! All made slightly more irritating by the fact I had just taken her this week to get her hair washed and cut in a proper 'grown-ups' hair salon - and paid £21 for the privilege! Maybe that's what inspired her... or perhaps she wasn't that happy with the cut :)

Reminded me of the time I was in charge of buying stationery for a large supermarket chain, and a customer called in to complain, saying she wanted to sue us as her toddler had just cut her ponytail off with a pair of scissors we had sold in our stores. At the time of course we scoffed, and suggested (not directly to her) that she may want to not leave her child unsupervised with a pair of scissors... but now I'm a bit more sympathetic! Kids always surprise you when you least expect it..

Which leads me neatly onto the next activity today - we had to go and get the swine flu jab for both our girls. Wasn't so apprehensive about Tamsin as she is old enough to understand, but I did think it would probably go only one way with Sasha - meaning a struggle and lots of noise. However, when it came to it, both girls were fantastic, not a squeak out of either of them and I was very proud of them both. Their arms are aching a bit tonight, but now I'm very glad we got it done, despite dithering over whether to or not since Christmas.

The next bit of the day was much more enjoyable, as Uncle Matt and Uncle O came to play. Both the girls love them very much, and they had a whale of a time with lots of laughter. Looking forward to the wedding in 2 weeks time, hope they're well behaved for that....

I am wondering, given the past week of good behaviour, if people think I make things up about Sasha - in fact I sometimes wonder if I'm imagining things myself! Makes me feel a bit alone to be honest - no-one else really sees her for as much time and as constantly as I do, and her behaviour is obviously different towards different people, especially if she thinks I'm not around. What am I doing wrong, or is it just that all children know how to play their mums?! However the books I've read on the subject do suggest that improvements come in spurts rather than consistently, and this is probably how it is for now.

Sasha has quite a few good phrases now, even if the language isn't all that clear - including 'there he/she/it is' and '1-2-3-wake-up' if we're pretending to sleep. 'home sweet home' is my favourite phrase of hers though, I love to hear that. I did laugh a lot when I went to collect her from nursery on Friday and they said she had resolutely refused any tea, pushing it away (something she has eaten happily several times before!) but instead had sat there singing 'twinkle,twinkle,chocolate bar' (instead of little star, obviously). She does that at home also, generally at the top of her voice, and that's another thing that always makes me smile. When home last weekend she happily sang 'happy birthday' to her nana, and even quietly went and got the bag of presents to give to her of her own accord! The fact she wanted to open them may have had something to do with it though....

I need to go and do some more reading now, in preparation for our next meeting with the paediatrician (lunchtime on Thurs). I have in my mind something about PDD and how that might be Sasha - here I'm copying directly from the NAS website...

A dad once observed that his son didn't have autism but PDD-NOS: Pervasive Developmental Disorder Not Otherwise Specified. "I just wish he had something I could pronounce," he added wryly, "something someone has heard of. " Such exasperation is understandable given the somewhat cumbersome and commonly misunderstood acronym, PDD-NOS, which describes a specific pervasive developmental disorder.
A child may be diagnosed with PDD-NOS if he or she shows some behavioural features of autistic disorder but does not meet the full criteria. All of the listed PDD are part of a spectrum of overlapping conditions. To illustrate this, a child may begin with a diagnosis of PDD-NOS, develop more autistic features with age, and be re-diagnosed with autism or another pervasive development disorder; conversely, a child with autism may improve and be re-diagnosed with PDD-NOS.

As Sasha does seem to recognise and show emotion, and can interact very well with people she doesn't know all that well (when it suits her), I'm wondering if this is how she may be diagnosed. My worry at this stage is still that Sasha is not 'bad' enough to get help which she may well need desperately when starting school, and I'll do everything I can to make sure that start will be as smooth for her as it was for Tamsin.
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Friday, 19 February 2010

Half term frolics

Well it's been a few days since I last posted and a busy half term - still lots to think about and little time to write. I'm amazed at how well this week has gone actually, Sasha has coped with all the changes from routine admirably - in fact I'd possibly go as far as to say she's thrived on it! Something I didn't really expect - and which has of course got me thinking in circles again, as her behaviour has really been exceptionally good for a toddler, rather than just 'normal'.

Half term started with a trip up to my parents for my mum's birthday weekend. Sasha had fallen asleep for the last 45 minutes of the 3 and a half hour trip there, but woke up just before we arrived. As we stopped in the car park she seemed fine, and was eager to get out of the car. She did her usual trick of pretending to act shy and snuggling into me as we saw Nana and Bampi again, but as soon as we entered their flat she was running around as if she owned the place - she clearly remembered it, and her bed in particular. This time we decided to put Tamsin to sleep in the same room as Sasha (previously Tamsin slept in the room with us due to different sleep patterns of the girls), so poor old Tamsin probably felt a bit demoted, but as we explained to her, we thought it would be nice for Sasha if she had company in the room when she woke up. So that led to Tamsin waking during the night at 3am and calling for me, and both making their way together to our room at Sasha's early wake-up time of 6am - yawn. My heart was really warmed that morning though as they both climbed into bed with me, and as I dozed they played a little game of holding hands and pushing which caused lovely giggles from both of them :)

The first evening we were there I went a bit mad and got over-stressed about tea time being late, surprising everyone I think including myself. Especially hard for anyone else to understand as the girls were being well behaved and fairly patient at the time. The trouble is I know only too well how quickly Sasha's need for food appears (she is very impatient, can't imagine who she takes after ;) ) and as I was trying to explain to husband later, it's really only me who ever sees that. It's difficult to explain to others though, not least because if anyone else is cooking it doesn't happen to them, as the girls will of course have me then elsewhere to entertain them, and so nothing is quite so urgent. I'm not the world's keenest cook anyhow, so it makes me majorly stressed to be trying to cook whilst being grabbed and pulled by the hand to the fridge to find a quick fix which then means tea won't get eaten. Tamsin by now is old enough to understand and wait, but I'm sure at Sasha's age she was probably just as impatient - although food was never such a great pull for her anyhow.

The next day we went out to a Wacky Warehouse pub as a birthday celebration (lucky mum) and this time Sasha did show her impatience - from the time we got in there at 430pm she was desperate to eat and wouldn't let me be until we'd chased the waiter and had the food in front of her. Not that she really ate anything other than garlic bread and chips, but it certainly pacified her and the difference in behaviour was instantly noticeable to me - but maybe the issue is that I'm too close to the action as it were, and others just don't see it? The fact my older brother's children are all wonderful eaters probably didn't help (although obviously not their fault!!!) - my niece asked for a second bowl of spaghetti bolognese while we were there, something I could only dream of hearing from mine!!!

The second night sleep went much better and on our 3rd day we sadly ended up having a split day - Tamsin and Dad went with my brother and co to the indoor play place, while my parents and I waited for Sasha to nap, then when we turned up at the play place the others were all just leaving. However Sasha took it all in her stride and had a fantastic time alone on the soft play - once I'd help her find a path up to the big bumpy slide she was happy to carry on repeating that on her own or with me, although I laughed lots when she dragged Bampi and Nana up with her! In some ways she's much more adventurous than Tamsin was at her age - it's only recently really that Tamsin has had the oomph to do things like that on her own. Generally Sasha also seems less bothered by other children and I think she would give as good as she gets in the face of any trouble, as opposed to Tamsin who will run away crying!

So a lovely time, although hearing Sasha's younger cousin start to talk and say please and thank you at the age of 22 months does of course sadly just make me more aware of how far behind Sasha is. Saying that, I do think I have heard Sasha say 'thanks' once or twice recently, although of course it's not really recognisable as that. But in her own way I think she's trying. Just wish we could get on and get her some help now - I'm still in shock that the speech therapy team have said it's 6 months from assessment before therapy starts.

More to write re the past few days but must go sleep now and hopefully update again over the weekend. Am taking the girls for the swine flu jab tomorrow, not looking forward  to that at all! Have to be honest that I still want to read up about the MMR jab and its alleged link to autism, although I know our GP laughed it off as ridiculous....
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Wednesday, 10 February 2010

What does the future hold?

What the future holds is a big question, and one which I've been trying not to think about. I've just finished Lorna Wing's very good book, but it did make me sad towards the end as it talks about how life may turn out. There's a chance that Sasha may be dependent on us for a long time to come, which is of course not what anyone really thinks about or hopes for when having children., much as you love them! This made me a little sad when thinking about the future and effect on Tamsin also - instead of the close/best friend sibling that we thought we were in a way 'giving' her, it could be that she's in a very different situation and will always have to be the caring one. It may also mean that she has to be more mature for her age than her peers in the coming years, and I really don't want her magical childhood to slip away from her. However, it is of course true that not all siblings are best friends anyhow, and we never did really know what the future would hold, so there's no point dwelling on it.

Probably feeling slightly down today also because we received a copy of the report written by nursery in order for them to put in a claim for funding for extra help for Sasha. The nursery has been very good with Sasha, and I know she's very happy there. Although they may not have had a lot of experience with autism as it is a relatively new nursery, I feel confident that the owners are happy to be involved and even pro-active (something I've already been warned is less likely to happen at school). The report was one which I also completed as Sasha's mother, and it's a tick box checklist of various things that the child can or can't do at certain ages, split down into categories such as fine and gross motor skills, self-help and independence etc. I guess the most disheartening thing was that Sasha seems to come up with a learning age of just 6-12 months when it comes to expressive speech and language skills, and only 12-18 for receptive language, play and early learning and social and emotional development.

I'm already dreading Tamsin's next parents eve, as I feel we will have to talk about Sasha as well as Tamsin. The teachers should be aware of it for Tamsin's sake so they can understand if she makes reference to her sister, but also for Sasha's sake if she is to go to the same school as Tamsin. Forewarned is forearmed as they say, and as I already mentioned, I've heard from various sources that it seems to be a real struggle to get the need to get extra help in school, so maybe other things will need to be put in place. I'll need to start making enquiries about how they would deal with Sasha starting, as well as looking into specialist schools to understand our options. Seems like school is a long way away but I'm sure it will come around quickly.

Sasha has started creeping into my bed extra early in the morning now, so I must go to bed early!
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Tuesday, 9 February 2010

Action required - but what, who, where?!

So I'm still gripped by the need to get on and DO something now - it's just knowing what to do that is the difficult bit! Managed to get hold of someone in SALT (speech and language therapy) who informed me that the usual wait from initial assessment report to actually getting speech therapy started is 6 months! So that would mean nothing happening until June, seems unbelievable. So now do we have to search for a private therapist? I certainly want to get on and try and give her the best chance to communicate - today she repeated a word about 6 times for me but I still sadly had no idea what it was she wanted, although she obviously did, and understandably that upset her.

More luck on the hearing, managed to get another appointment for the end of this month, which is fortunate seeing as their written report came through today, and it was fairly technical - i.e. I couldn't really make head nor tail of it! So will be going back to ask some more questions there.
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Saturday, 6 February 2010

Autism test

Oh and have just remembered, husband and I did the autism test as per the link from the Channel 4 Embarrassing Bodies programme - I got 17 and he got 20! So nothing much conclusive there :) Several people have said to me that they think everyone, or lots of people, have autism in some way... could well be true, shame there is no easy test for it!
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Some good news....

At last we've received the letter from the paediatrician which sums up her report on Sasha following the initial assessment. It really documents all the answers I gave to the questions she asked, so no real surprises in there for us. We did discover that there was a format to the time she tried playing with Sasha - apparently this is called a Griffiths assessment, and it shows the paediatrician was observing her behaviour closely and monitoring what she could do during that time.

The following sentence was probably the only confusing bit - 'it is difficult to get an accurate assessment of Sasha's developmental skills due to her difficulties accessing the assessment.'
It goes on to say 'her skills do however appear to be age appropriate. Clearly her language is significantly delayed and she also presents with highly self-directed behaviours, difficulties with transition and poor social interaction'. So we're not really much the wiser, but I guess it does just put down in black and white what we already know.

The good news is that they have sent through a new appointment date which I've to call about on Monday - the bad news is that the day and time is already fixed, and I can't see lunchtime as being a great time to get much co-operation from Sasha if there needs to be more tests!

Ho Hum. At bedtime tonight I was thinking about Sasha's speech, and what is most noticeable is that she struggles with 'S' and 'T', which is a shame considering her sister is called Tamsin and her favourite toy Terry - if only we'd known! Tamsin was re-named by Sasha several weeks ago, to 'Gah-oo'. We've no idea why (although the difficulty with T must have something to do with it!), but it is at least obvious who she means when she calls that. They don't play together often, but have great fun and lots of giggles when they do as it usually involves chasing of some sort. We haven't gone into huge details with Tamsin but we have mentioned that Sasha is a little different, and we do ask for Tamsin's understanding in some situations. Often Tamsin is very good with her but there will always be times it doesn't seem fair. After a lovely swimming session, just me and Tamsin today, she blurted out as we got home that I cared more about Sasha than her. Now I'm sure this was said more as a throw away comment for a bit of attention, rather than because she really believes it, but it is of course still on my mind and I feel like I need to make extra sure we make lots of time and do lots of nice things with Tamsin. Swimming was fun today (apart from having to clear the pool due to floating poo!) and Tamsin did well with floating on her back. I'm keen to start her on lessons so she doesn't fall behind for her age, but she's still really just too tired from school. Summer term hopefully.

Anyway, back to Sasha's speech. Did I mention she can count to 10 (and to 7 in Spanish) and then from 10 backwards?! She was doing that in bed tonight, not sure why. Six is probably the clearest number, although it's 'ix', and seven is 'seben' - or is it 'eben', I'm not quite sure now I've thought about it! Must remember to take more video of her to capture things like this. She can tell me all of Dora's friends, although it's 'I-ha' rather than 'Isa', 'Boo' for 'Boots' and 'ico' rather than 'Tico'. Dora is quite a clear word though! A new phrase she has learned is 'my turn' and it's pleasing to see she seems to understand what that means (although just like any toddler she's none too keen on waiting for it :) ). Still heard nothing from speech therapy though, and have now reached the stage where I am keen to get on and do something to help Sasha communicate rather than sitting around waiting for appointments. Also need to speak to the hearing people again to fix a re-test and see if grommets are needed, oh what joy. More research to be done I feel.

At least our little girls are happy and healthy, and for that I'm very grateful.
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Wednesday, 3 February 2010

Autism - Spreading the word, and it's not a bad one!

A better day today - at last some clear time to think, and the PMA is back :). I wanted to spread the word with friends just because I think autism is a word which a lot of people don't know much about. That includes myself before we were given this news. It's not a bad word, but something that is rarely talked about despite the recorded increase in diagnosis. Some people who I have already mentioned this to have said 'oh yes, I've seen a television programme on that, but Sasha's nothing like that'. Well no, she's not severly autistic, but it's a wide spectrum. At the moment I'm just feeling thankful that she's on the lower end of it. I know there's a lot of people out there with bigger challenges in life, or some who have sadly lost children, and I have no idea how they cope. I'm just grateful that I have my family and friends' support, and two beautiful girls who make us laugh (and sometimes cry!) in different ways every day.
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Tuesday, 2 February 2010

A tiring day

Not such a great day today - had to leave swimming early as Sasha had had enough. Most likely she was just too tired; she seems to be worse at the moment whilst getting over her latest bout of coughing and cold. She's been ultra clingy and not happy to amuse herself, dragging me everywhere by the hand and not letting me sit still for 2 seconds! She fell asleep just as we needed to go and collect Tamsin from school, so only had a 20 minute nap, which was probably not quite enough judging by the tantrum when I could no longer carry her and wanted her to go in the buggy or walk herself - she worked herself up into such a state that I really thought she'd be sick. Another mum commented her child could be like that, and again I wondered 'normal' toddler behaviour or not?

I felt really bad for poor old husband tonight as she didn't want to be entertained by him whilst I tried to eat my tea, and again the tantrum got to 'almost sick levels'. Of course as soon as she was back sitting on my knee she was fine and as charming as ever. But she was a little cuddlier, so am forgiving her now as I think she must be under the weather still, she's not always quite so bad!

All a bit tiring so I'm off to bed now myself, zzzzzzz....
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