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Friday, 7 September 2012

Time to think. What to do?



It's not very often that I sit down and have some relaxing time for myself, but that's exactly what I did yesterday at the Olympic Park. What a gorgeous place and amazing space they have crafted out there to welcome the world. Of course it helped that the sun was blazing and the skies were blue. Not exactly typical Britain, and it's a shame we don't get a summer full of that. Here's a couple of pics for anyone who couldn't be there:



The little extras made all the difference, and I have to take my sun hat off to the amazing volunteer games makers who were funny, friendly and motivating, and even came around with some free sun cream and baby wipes!

Sitting there all on my lonesome was lovely and peaceful, but also gave me the chance to think. I thought lots about my beautiful family and how lucky we are to all be together and happy. I also thought about how Sasha may be able to enter the Paralympic games in the future, and wondered what event she might do - running, swimming, jumping?! At this moment in time I can't imagine it at all - the crowds, the noise, the waiting around, the focus on training, having to accept that someone else might win, and not shouting 'Espera!' (which means 'wait' in Spanish, so I'm told by my little Dora) at all the others to stop so she can take the lead....

Since her return to school only a couple of days ago, I've been hit with the realisation that she is more 'behind' her peers than I thought. A list of 3-letter words came home this week which they are to get regularly as a spelling test, and it was a struggle to get Sasha to even look at it. When she did, she was still using phonetic sounds to try and sound them out. Take them away and ask her to write them down when spoken to her? Good luck with that, teacher! Not only the spelling, but the actual writing is going to be a huge challenge. The teacher gave us a talk this morning where she explained she knew they were easy words, but it was just to get the children settled and confident. It makes me sad to know that for Sasha they are not easy. Tamsin has always been naturally gifted, her work has come easy to her, and for that I am obviously very grateful. I also know that there is a wide range of ability in the class, but at this stage I'm sure it'd be true to say that Sasha is at the bottom.

Recently she has started struggling to get her words out - not a stutter or stammer, but the kind of repeating words and forgetting what to say that toddlers go through. This will undoubtedly hold her back even more. She's happy to chatter on about what she's interested in (the seasons being a particular favourite - she delights in telling me every day that it's autumn now and the leaves will fall from trees), but not so keen on two-way conversations, or passing information on.

I know, lots of children this age are similar in that. But it's just different with Sasha. The awareness is not really there. It's difficult for me to admit that, and knowing she could enter the paralympics does also bring a tear to my eye, much as I'll always be proud of my girls for anything they achieve. Sasha achieves so much more every day than some of her peers, as she struggles with the environment around her and making sense of things. Yet on the whole she is a contented, cheerful kind of girl, and I hope that will take her a long way.

Is the gap widening though, as I've always feared? Difficult to say, but what I am fairly sure of is that without some extra help, she is likely to fall further behind. A classroom environment where she is expected to listen and do the same as 29 other children is never going to be a winner for her. We are so lucky that the school is understanding and that they do their best for her, and there is some small group work involved. Only time will tell whether that is going to be enough.

I don't want to see her fail before she has the chance to succeed though. So what I think we need is a specialist individual, who 'gets' Sasha, and who can persuade her to learn outside of the school environment. Any ideas where we find that person? Answers on a postcard please!

Finally, because I don't want anyone to get the impression that I'm generally sad, here's a pic of my beautiful little girl. How could I not be happy with this?!
 

27 comments:

  1. Sasha is such a beautiful girl - and she has a beautiful mother! Sending you all much, much love. Michelle (in Australia) xxx

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    1. aaah, thanks chuck - you're up late!! hope we can come visit one day :) x

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  2. I fully understand how you feel, your thoughts here have passed through my mind many times. My little girl (7yrs, ASD) is the older of my two girls and you really start to notice when you have two close in age. My daughter gets 1:1 at school from the clinic where she goes to see her psychologist. She also gets extra help from the SENCO. Her school work is coming along lovely and her behaviour has improved lots too. Maybe you should talk to your school, GP or psychologist to see if there is anything available? Or you could try your local Autism society? If our children are to stay in mainstream they need all the 'right' help they can get.

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    1. Thanks Anne, it's funny how it does just really help knowing someone else understands, isn't it?! I think you're right, first step is to talk to the school. Sadly the GP is not really involved at all around here, the local autism team can barely manage fire-fighting and we only get to see the paediatrician for an annual check up now! So not a lot of support :( I do really want her to stay in mainstream!

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  3. She is adorable and I struggle with this too. I have a daughter close in age to my son so I see it at home but it really hits me hard when I see him with other boys his age and see what they're doing, and he's not. I get this. Hugs.

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    1. Thanks Lizbeth. Emotions go up and down always but think I'm just about holding it together :-)

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  4. I googled Autism and the Paralympics last week and was surprised to learn that having autism isn't a qualifying disability at the moment. I think autism charities are working on its inclusion but at present not possible unless it's alongside another disability.

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    1. Had a quick look into this, and Jessica-Jane Applegate 'only' seems to have Aspergers - i.e. no 'other' condition??

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    2. She is n a category for swimmers with a "learning difficulty" so she has no physical disability or visual impairment. The criteria for "intellectual disability" is that your IQ must be below 75. That is very low for someone with Asperger's. That would usually rule anyone with AS out. It's more her low IQ that is the criteria. I think then that only people with pretty severe autism, learning difficulties and a low IQ could qualify. I looked for Erin as she has done dressage at RDA and is a good swimmer but she would not qualify under any of the Paralympic rules even though she has AScand Dyspraxia.

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  5. I totally get what you're saying. One of the hardest things is coming to terms with the face that your child is having more difficulties than their peers. I'm going through this with my daughter at the moment. My only advice Steph is to take action sooner rather than later because it can get more complicated as they get older and they become more aware. It maybe that when you have a statement review you can discuss these changes so that her support can be modified. All the best. Deb xx

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    1. You're right Deb, it's just a case of pulling myself together and hgetting the energy to push forward with the questions and actions for others... off to check on her review date now. Thanks x

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  6. I don't know what options you have over there but please be open to considering anything. I really wanted my son to stay in mainstream, and was heartbroken when the school told us it wasn't working out and we would have to send him to a special school, but in hindsight, it was the best thing for him. In mainstream, he had similar issues to what you are seeing with Sasha, but now he is getting a lot more individual attention and he is making good progress. Sometimes that change you don't want turns out to be just what is needed.

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    1. Hi Yuji, I will stay open-minded. There is a local 'special' school, but I've been for a look around and I'm pretty sure it's not right for Sasha (she'd be the only girl her age in there!!!). There are no other obvious options, but I'm off to research and delve deeper. Maybe I'll set up my own school for the 'inbetweeners'! I'm glad to hear Kai is doing so well though :)

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    2. This is my worry Steph. My daughter's out of school and the authority don't think mainstream is right for her but special school isn't either; very few girls. I have no idea what to do at the moment but am starting to wonder whether I need to home educate her. Deb x PS we need a school or girls I think.

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    3. I know lots do it, but the thought of home education terrifies me - well, in that I don't think I'm cut out to be a teacher myself! I've considered setting up a new school though - I'd be good at all the admin stuff, would just need to find amazing teachers!

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  7. The first part of this post is so joyful and celebratory. The second feels like you are very sad. Don't be sad and don't be critical about comparing your girls - it's a natural thing. In some respects, I was lucky to have two children "early" and "normal" that I knew I shouldn't/couldn't/wouldn't compare Jake them but you always wonder, don't you?

    Tamsin will face many battles in her life, as will Sasha - both very different and both very individual - just as your girls already are.

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    1. Thanks Nickie. Tey are very different, and we have different fears and worries for each of them that come and go, and change as they get older - no different to all parents in that respect I know.

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  8. I have accepted that Smiley is very different to other children, but even so I am finding it hard to accept that my son is different too - I was hoping that he could go to mainstream secondary school as has had brains to burn, but his other difficulties are not at all resolved and it looks unlikely now. It makes me grumpy and sad too xx

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    1. Ah, I hope you manage to find a good solution for him too. The whole education thing is such a minefield, isn't it? I know you get the up and down feelings - thank goodness for the ups, eh?!

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  9. A great post. It is difficult accepting that your child will not make the same progress as their peers. But, she will find her way in the world at her own pace & in her own unique way with u at her side.

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  10. Your Sasha is beautiful. She will shine.

    In Ireland we get up to 5 resource hours per week in a mainstream school to help a child with specific diagnoses (Autism/ASD included)in English, maths, social skills etc. It really can make all the difference and certainly has done so in our case. Sometimes we are allocated Special Needs Assistants it help the child in the classroom too. Our children CAN learn and sometimes they have to be taught differently. The teacher has to change to suit the child.

    Is there anything like that you tap into in your schools?

    xx Jazzy

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    1. Hi Jazzy, sadly there's no extra resource automatically given here - it's all down to the school to decide how they use their budget (and of course, there's never enough of THAT to go round!). You would hope the school would want to do what's best to help every child, but sometimes that means them making decisions to benefit the majority I guess. I think we'll definitely be spending time trying to persuade them that an extra assistant is needed.....

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  11. oh poppet, this post changed mid way.

    I do hope you ge the support needed!

    she is a beauty x

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    1. Thanks chuck. We'll get there somehow. She is gorgeous, isn't she?! ;)

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  12. Does she not have her own TA? Could she be assessed to see if she qualifies for one? Lovely post, beautiful girl. We went to the Paralympics last week and loved the whole atmosphere :) So sad it's all over. Found you from Mummy's Little Monkey bloghop!

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    1. Thank you. She doesn't have her own TA, and it's really down to the school to decide whether she needs one. It feels like a battle, and a minefield to step lightly in to be honest, asking for something which we see as extra support needed for a child with a diagnosis, but they see as money/budget at the end of the day. To be fair, I haven't asked directly yet, so we'll see! Thanks for coming over - I'll be doing my 'blog reading' after lunch so will drop by!

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