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Tuesday, 3 September 2013

#ThisIsMyChild. Back To School.

Back To School. I've tried not to think about it this year. .

Normally I'd have been well organised at the start of the holidays. New uniform bought and labelled, PE kits washed, bags put away in safe places. This time I pushed it all to the back of my mind. Couldn't get into gear thinking about it. Managed to make the trips to the shoe shop a couple of weeks back but that was it.

Today I've spent 4 hours (yes, seriously) looking for the school pencil case. I've stayed up late doing the last minute name tag ironing. I've just finally put the PE kits back in the bags. I've pulled all the uniform they were wearing at the end of last term back out of our spare wardrobe and into theirs. I've realised we have age 8 and age 6 trousers but no age 7, which is what Sasha really needs. I have one skirt that fits her. Good job the weather is warm and the girls can go back in their summer dresses - yes, those ones with the collars that have gone yellow in places thanks to sun cream. 

Today it's really hit me. I know why I've put it all off. I'm sad and feeling blue.

I don't want the girls to go back to school. I'm sure this sentiment is being echoed in plenty of other houses around the country. We had such fab summer holidays - we packed loads in and both girls have been brilliant about it all. They've adapted well, coped with changes and lived life to the full. I've spent most of the time with them, despite having to work just a few days this time, and I've loved every minute of being with them. We've had lovely family days out, quiet days in, visits to and from grandparents, BBQs (good and bad!) with friends at home and an amazing holiday in France with old friends.The gorgeous weather (no-one down here can complain about that this summer!) has just been the icing on the top. The holidays were, quite simply, sch-mazing (only good thing about autumn = return of XFactor).

The other thing is, I'm not just sad, I'm scared. And worried.

Every year is getting more difficult for Sasha. Or maybe it's just that every year is getting more difficult for me as I see the new struggles she is facing. 

I was really pleased to hear that Mumsnet were running a campaign called This Is My Child, and I fully intend to write a separate post to support that very soon. In the meantime though, I feel like I've not updated the blog for a while with how Sasha is actually progressing. We are still waiting for the appointment for tests regarding PDA (Pathological Demand Avoidance) at Great Ormond Street - delays due to under-staffing and high referrals. More on that then another time. For now, I thought you may like to see a little clip of me asking her some questions this evening about her return to school:

As I watch her peers play next to her, I see the gap is widening. It's not their fault that they can't understand why Sasha wants to be in charge all the time; I don't blame them for wanting to have more fun with others who do understand give and take more fully. We've had other girls and boys of Sasha's age around to play these holidays, and the general pattern is that they will start by sitting or playing with Sasha, but after a limited time they move on to play with Tamsin or with the adults. Often Sasha has chosen to take herself away from the action, when it's been too noisy or there were too many variables. I think my heart broke just a little bit one day when Sasha turned to me and said 'but mummy it's not fair that she played with Tamsin. She's meant to be my friend, Tamsin took her from me'. Tamsin is of course happy to play with anyone who comes over, but she never instigates this, and I think the truth is that Sasha just isn't aware of what's happening, or of how her 'playing' is different to others of her own age. Even as Sasha uttered those words, I don't think she really understood what she was saying, and she wasn't saying it in a way as to blame Tamsin.

So social life is about to become a whole lot more difficult at school for Sasha, as the girls form little cliques and make up playground games to suit themselves. Lunch time is often the most difficult time of the day for children with autism anyhow, thanks to its unstructured nature and 'free play'.

Now add to that the difficulties Sasha will face with the 'work' side of things. At the end of last year, she was only ever so slightly behind her peers in terms of reports/performance. She can read, thankfully, and it's true that's something I wasn't sure she would ever pick up. She's always had a passion for numbers, but an autistic genius she isn't - to add up she still likes to use her fingers and I've no idea how she is going to get past that. The biggest mountain to climb though, is the one to get her writing. She can write her name, joined up, but that's as far as she goes. It is going to take a magician to make her want to try the rest. Even if she does suddenly start writing now, she'll have a long way to catch up. There's a lot of written work and tests done in Year 2. It is easy to suggest that the school find other ways of recording what she knows, that handwriting will not be necessary in years to come, but in practise that's a whole other way of thinking for a school which is used to dealing with the average child. Will the gap between Sasha and her peers keep on widening on all fronts?

People like to say 'oh, it'll be fine'. I get that they're trying to be positive, I'm grateful that they want to try and reassure me, and I understand there's not a lot else they can say anyway. I'm relieved that she is looking forward to going back. Maybe it will be fine. Maybe it'll be just OK. Maybe it will be not so good. Without doubt it will have more challenges and meetings and IEPs than the average school year for any other average child.

On the whole, Sasha is thankfully quite happy, as long as she has control. Even at school, where you'd think she can't have control because surely the teachers have control of the class, she manages to gain control by taking herself out of class situations. Generally she does it quietly, without a huge meltdown, so thankfully she doesn't disrupt. But is that a good thing? To be sitting on her own, away from the others, with her head down - sometimes listening, sometimes not - are we really going to discover her true potential like that? Likewise, if she is taken out of the classroom to be taught 1-1 for certain lengths of time, is that then really inclusion? I know that's a whole other topic, but that's just a snippet of all that is going round in my head these days.
I don't know the right answers sadly, but I do know I want to do what's best for Sasha. Any advice gratefully received!

16 comments:

  1. Oh Steph.... I don't have advices. Just a hug. And the comfort in numbers maybe - I have the same concerns that Yon will be very similar to Sasha in so many regards, and he is just starting Reception...
    It isn't too depressing, just the truth. That our children face so many more hurdles, and that we are afraid. And I guess it's okay to be (at least I hope it is, because I am constantly worried)...
    I still haven't gotten Yon school uniform. Or a bag. Or a PE kit.
    Just shoes, and he has 1 shirt and 2 trousers from Ron...
    I don't know if it will be fine or not. Most of the time I go with the "not", but it will be fine because you are not alone in dealing with it.
    I was just today thinking about the linky, and I will open it again next Monday. I hope you will link this post. To me, it is perfect, not only for the linky, but for what I am feeling and what I am afraid to tell myself I am feeling.
    Good night, and good luck. x

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    1. Que sera, sera, I know. Constant worry, I know that too. I will definitely link up, thanks :)

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  2. Oh Steph, I hear your concerns I really do. They mirrored mine from not so long ago, yet it feels like a million years ago.

    Yes, lunch time is the most stressful time for children with autism/ASD. Which is why I was always an advocate for their 'helper'.... Special Needs Assistant (SNA) in Ireland... to take their lunch break at a different time to the other staff, and at the least stressful class time for the child, and to be there at lunch times. To help steer/initiate/intervene (as appropriate!) in play. Perhaps even set up a buddy system? Find 2 'understanding' children and gently encourage play. It's a huge life skill and will help kids like Sasha in future life.

    Does she get resource hours in school? If so what about a small 'social skills' group where children with similar issues (they won't all have autism, some may not have any diagnosis but they WILL have similar issues!)are brought together to play games in a structured, supported fashion.

    I hope this is of some help. If I think of anything else I'll pop back over :-)

    xx Jazzy

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    1. That gives me hope Jazzy as I always read so much positivity from you, so it's good to know things can turn out well :) Love your ideas about the helper with different lunch time, and the social skills group - I am so onto that next week, after the first few days of settling! Thanks :)

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  3. Huge ((hugs)) . It's so scary when you want everything to be right for your child and you don't know how to make it happen, and your heart breaks when it doesn't seem to be working. But one thing is working - it sounds like she has a lovely time with her family at home or on holiday, and that will really help and ground her xx

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    1. Thanks, yes, we'll always have the fab holiday memories, and a fab photo or two to look back on :) x

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  4. I loved that video. I think it is hard for them to 'define' friendships in the way other children do. I know J used to get overwhelmed by thinking that all the children in his class were his best friends and that he had to find time to play with them all and so he would end up in total meltdown because he couldn't figure out how to do that. We also have concerns re J's handwriting - we found his name written at preschool about 6 years ago and it looked pretty much the same as he writes it now! But I try to tell myself that as long as he is learning in other ways then handwriting is not all that important and I suppose we are able to do that because of homeschool and I can see how much harder that must be for Sasha at school. It sounds like you have had an amazing summer holiday and your girls are going to have great memories of that. xxx

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    1. Yes summer was fab, very glad of that. Writing is not the most important thing I guess... friends and social relations are a much more important and difficult thing to teach... school update coming soon!

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  5. I wish I could advise but I just send hugs, I have one who struggles with writing and doesn't enjoy school at all. I don't have the answers for him either.

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    1. I know, there's few parents out there who have no worries I guess. Wish we all had magic wands!

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  6. Big hugs. Hope the week has gone okay. Does the school teach cursive writing from day one? I'd heard it helps dyslexic children - I know it's not the same thing at all - but it's the principle of flow and body/kinetic memory, and that might help.

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    1. Yes they do cursive writing - would have been good if they'd have made sure the grip was good from the start though..... Still, I appreciate it's difficult when you have 30 children in a class!

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  7. Oh this is a sad post. I really feel for you. I often worry about my son socially. His sister is really confident and outgoing and he often can't speak or gets really angry. He hates it when other people play with his sister, he wants to play with her and will stop as soon as someone else starts.


    I hope this school year goes well.

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  8. Oh bless you. I am full of sympathy. No answers though I'm afraid! My youngest is profoundly deaf and I too seem to spend much of each school term worrying and liaising with school. A day at a time and don't stop fighting are the mottos I think I live by a lot. xx

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  9. Thank you, I guess I am a little sad some of the time, but I know the key is to not let it take over everything and forget to celebrate the positives!

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  10. Thanks. Yes, you're right, a day at a time but I can't help being a forward planner too - only wish I had a Crystal Ball!!! :)

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