Monday, 30 January 2012

Too young to be a School Refuser?

Sasha's first words this morning were those I've been dreading hearing.

'Mum I don't want to go to school ever again'.

I didn't think they'd come quite so soon to be honest. I just told her the teacher would be sad if Sasha wasn't there any more and her reply was 'doh, alright'. I expected more of a fight than that!! 

Actually it's easy to be blase and laugh it off now, but it is a real concern. Not in the way that most children would say they don't want to go to school given half a chance, but in a more permanent kind of way. I've met several mums in the blogging world and real life who have issues with school refusers, and it really does make their daily lives very stressful indeed. Contrary to some views, you can't just make them go to school because you are bigger than they are.... Likewise I know of other ASD girls who are often sent home and excluded because of their behaviour, and that is equally stressful. So my fingers are permanently tightly crossed that Sasha doesn't begin to really mean it, and that she doesn't have any more trips to see the Head....

I was pleased this morning as Sasha's second thought was 'is X coming to play after school today?'. This shows a huge leap in her understanding of time, as I hadn't mentioned about the playdate again since it was arranged last Thursday. That means she had realised it was Monday morning and that today was the day - sounds simple, but it's not something she's really grasped up until now. It means that I can hopefully start to talk more in advance about things which are going to happen in the future (such as the school trip to the zoo on Wednesday, yikes!). Again, unless you have to do it, it's difficult to understand just how stressful it is to try not to mention or talk about anything in advance for fear of confusion. It has meant that since having Sasha, our lives have generally been run in a last-minute, hope it's going to work out OK kind of way. Which is difficult for someone who likes to try to be super organised and have everything planned in advance!

I'm also chuffed to have made Tamsin's journey to school a bit more pleasant this morning by letting her use an ipod with headphones. Sasha has banned all sound in the car again.... hmmm, now how to stop Tamsin from singing along out loud to all the catchy songs?!
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Thursday, 26 January 2012

A twirly skirt makes every girl happy!

I'm just posting this so that everyone gets a sore neck.

Joking. I did actually take a couple more videos the right way after this one, but neither was quite as good as the original. So you're stuck with this, sorry!

Sasha decided today to wear her new dress that has been hanging on her wardrobe door for the past few weeks. When I first bought this dress, she immediately decided it would be her birthday dress. As her birthday isn't until the middle of the year, I did inwardly groan, but knew there was no point forcing her or suggesting it again.

I just decided to leave it in view, just in case. Not that we've had the weather for it to be honest, but of course that doesn't bother Sasha. She told me a month or so ago that she doesn't like long sleeves.... boy I wish she'd been able to express that before I bought her winter wardrobe. She's been in a phase of not wanting to wear either tights or leggings for the past couple of months, but never complains of the cold. It takes me right back to one of the first things we struggled with. From the age of around 1 until she was 3 she absolutely refused to wear any socks at all. I would have to send her off to nursery when there was snow on the ground with just her boots on, no socks. Oh, bad mummy.

Anyhow although tights and leggings have been worn at various times last winter, they're definitely not on the agenda this year. Will see if that holds when it does actually snow...

Today she was so delighted to wear this dress, and do twirls in it, that it made my heart burst with love and happiness. It is a lovely soft feel jersey dress, and I'm so glad it's had at least one outing! It's so special, it's just perfect for Sasha. It's the simple things that keep us going......
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Tuesday, 24 January 2012

A visit to the Head's Office.......

So. A full term and a couple of weeks into school, and I'm hoping a pattern has not just begun.

Sasha paid her first visit to the Head's Office today.

I'd like to think it would be her last, but as sure as I am that Tamsin will never have to go to the Head's Office (OK so I'm touching wood here just in case!), is as sure as I am that Sasha will be treated to another office trip soon enough in her school career.

It's all fine, kind of. In that, yes, it was a trip for disobedience rather than a treat, but it all seemed to be handled very well by the class teacher. Sasha was just having a day where she definitely did not want to participate in any of the activities on offer, even though non-participation isn't really an option. She got to the point where she was just lying on the floor and I think an assistant had to physically lift her to then walk to the main building to see the Head Teacher with her.

The thing is, I could tell straight away from the teacher's description of the day that this wasn't Sasha being distressed or having a meltdown; she was just being obstreperous (oooh, big word!). I still can't go as far as calling it naughty, because Sasha wasn't really aware in those moments that she was being naughty. She can't explain why she was sent to the Head's Office and so it doesn't really mean a lot to her. I think she does know that you get a warning card or see the Head if you are naughty, but there's no awareness that that actually applies to her!

The teacher did have a smile on her face as she recounted the day to me, largely because Sasha kept telling her all day that she was cross or angry because the teacher was making her sad (by asking or telling her to do things she didn't want to!!!). When she came out to me, she hung her head and told me how upset she was - again, no real awareness that she had been naughty or that it was her fault, just an air of having been badly done by... I did have to look away to stop myself from laughing! It's quite cute in a way, but obviously we do try and talk to her about what has happened in the hope that some of it will begin to sink in and she can learn from it.

My biggest fear before Sasha started school was that they would have to exclude her at some point on grounds of bad behaviour - not violence or aggression, just refusal to take part. Then her school journey began and has been going so well that my biggest fear changed. I've worried that she will become a school refuser at some point, if something happens to upset her - I won't be able to get her to actually go in the first place. Now, all of a sudden, I've swung back to worrying about the behaviour... watch this space!
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Wednesday, 18 January 2012

Pathological Demand Avoidance = my daughter; and a challenge for all..

I have a little challenge for you. Please click on the link to this book below, click to look inside and then read page 13. (You can even order this book from Amazon if you really want to understand Sasha a little more!).

This is a book which was written in the early part of 2011 (so quite recently!) after a lot of research. PDA is a newly researched 'topic', and not many people have heard of it. 

PDA IS Sasha. Sasha still has autism, but as is described in the book, autism has really now become an umbrella term for several different conditions.

The description of PDA fits Sasha more precisely than classic autism.

There's some really good information about it on the NAS (National Autistic Society) pages here.

I wish that everybody involved in Sasha's life in any way could read this book. Understanding is the key to helping Sasha, and removing general ignorance in society.

PDA is all about high anxiety levels when the child/person is not in control. As a quick summary, I'm quoting the NAS text below:

The main features of PDA are:
  • obsessively resisting ordinary demands
  • appearing sociable on the surface but lacking depth in their understanding (often recognised by parents early on)
  • excessive mood swings, often switching suddenly
  • comfortable (sometimes to an extreme extent) in role play and pretending
  • language delay, seemingly as a result of passivity, but often with a good degree of 'catch-up'
  • obsessive behaviour, often focused on people than things.
When I suggested this is what I thought Sasha has to her paediatrician shortly after diagnosis, the paed politely suggested I might not want to shout about it or have it as a diagnosis, as it is largely unrecognised and so Sasha would get no help or sympathy.

She was right to say that at the time; as Sasha was so young we did have some great input from the Autism Early Years team. Now Sasha is at school though, the help disappears into the background and pretty much turns into a 'fire-fighting only' kind of help. So we have to do the best we can to put plans in place for Sasha's future.

Now I'm left with the decision of whether to push for this diagnosis or not. The professionals don't want me to, as of course it would cost them money (it costs about £3000 to get the diagnosis privately). The label itself isn't important to me - Sasha still has autism, I'm not denying or trying to change that, but the techniques and strategies needed to manage her can vary a lot from other 'classically autistic' children.

I think it's important that the country recognises how many children like this there are out there. With higher recorded cases comes more funding and therefore research, but more importantly to me, and for Sasha in her future, more understanding.

There was an article on this topic published in the Daily Mail online recently which was fairly top-line and tame, but the readers' comments were far from that. The suggestion of bad parenting was rife amongst them, and 'what that child needs is a good slap' came out very strongly from the old school. I was, and still am, quite upset and disgusted by how many people felt it was fair to comment on something that they have no experience of - and also by how the Mail somehow decided to stop publishing comments when it became clear there was going to be a backlash from the experienced parents amongst us. I was in two minds as to whether to post a link to it here, as I certainly don't want to publicise the idiots, but I think I should as it gives a clearer picture...

I know, and I've said all along, that Sasha's behaviour makes her look like just another naughty child. I've also said that, in some strange way, I'm actually glad that her speech isn't clear, as at least that gives an indication that all is not right in her world. I'm also insanely grateful that I have another beautiful daughter who is of course by no means perfect (but who is?!), but who does respect authority, at home or at school, and who does understand social situations and implications, and who does care what her peers think of her etc. I've obviously not parented them in any different way and I just wish some more people could see and understand that. I would dearly love to parent Sasha in the 'typical' way, and even call in Supernanny if that is what it took.... but I'm guessing she doesn't take on cases like this. 'Typical' parenting is so much easier (but still insanely difficult, I'm not knocking anyone else out there!) and believe me I would make my life and Tamsin's much calmer and less stressful if there was any way I could. It takes a lot of work to keep on top of situations, second guess every possible outcome and be able to offer alternatives all the time.

The readers comments opened my eyes to how difficult life really could be for Sasha as she grows up. It's a lifelong condition; she won't grow out of it. So please, for Sasha's sake, help spread the word. I know this is what I will be doing in 2012.
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