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Please, please help me with this conundrum

(9 Posts)
runningouttaideas Wed 20-Jan-16 12:27:35

Hi, My DS is almost 11 he has Asperger's and Joint hypermobility syndrome. He has always asked me to help him with his work and complained that the work at school is hard (especially the writing) but he could never tell me in what way even though he practically rips his hair out to tell me. I have observed him over the years and I am certain that the hypermobility and fatigue is restricting him from producing the work in a neat enough fashion for the Asperger's perfectionism IYSWIM? Which is getting him in so much trouble and I can see his frustration because if he can he will, unfortunately to the class teachers this looks like he does when he wants to. He does get pain in his fingers and wrist (and many other places) and we have found him a pencil grip which he said helps a bit.

Ds has been assessed by OT twice but both times the focus seems to go onto the Asperger's and not wanting to do it being the reason he is refusing to write and the joint hypermobility is just disregarded even though I know for a fact this has a massive impact when he is trying to do things. The only person so far who seems to agree that the joint hypermobility is probably causing the issues he is having at school is his physio. How can I help him if the key professionals don't see what I do because right now I am out of ideas. High school is fast approaching and I don't know what else to do.

Schrodingersmum Wed 20-Jan-16 12:39:53

Hi Running, DD 13 has ASD and joint hypermobility affecting hands and wrists amongst others

My physio (I suffer too) recommended a number of things and strategies which DD's physio echo's

On a practical level using chunky pencils/ pens etc alieviates finger strain, lamy pens are very good

Using a writing slope and computer rather than writing

Rock climbing is very good for tightening up the wrist ligaments and providing joint stability, its helped DD enourmously

runningouttaideas Wed 20-Jan-16 13:04:43

Thanks schrodin. Ds has a writing slope, which was given to him when he was recovering from a fractured elbow and just kind of stayed with him, he has it taken from him when he is 'distracted'. I have been in several times and asked if the teachers can just give him a gentle reminder to use it but they aren't. Typing lessons were actually suggested by the first OT but it was because of the Asperger's and the SENCO just gave various excuses to me but told DS he doesn't have a condition that requires him to type.

DS can't climb at all he gets a foot off the ground and gives up and it isn't from lack of trying.

Schrodingersmum Wed 20-Jan-16 15:28:51

Sounds like you need a physio OT assessment to see what support he really needs

DD was referred by her Paed and the results have been included in her EHCP as a health support requirement

Runningtokeepstill Wed 20-Jan-16 16:06:54

Hi, another "running" person here. My youngest ds, now 16, has hypermobility syndrome and was diagnosed at Great Ormond Street Hospital when he was 10. The OT at GOSH looked at his writing and explained how the hypermobility was affecting it. Previously I'd just thought the reason his handwriting deteriorated as he went on was that he started off trying to be neat and then lost focus on this as he concentrated on the content of the task. But she said that it was because writing was uncomfortable at first and then actually painful so he couldn't keep up either the speed or the neatness. She recommended using a laptop for extended writing tasks.

Is there any chance your ds's physio could recommend a laptop? Or is that seen as outside their remit? Do they know where you could get support from an OT who understands hypermobility?

At senior school you may be able to sort this out with the SENCO more easily than you have experienced so far. So much depends on the school. At my ds's first secondary school he didn't get to use the laptop despite the GOSH OT report but they were very hard to deal with and he eventually had to move on. His second school were happy for him to use a laptop without seeing an OT report (his GOSH one was quite old by then) as they were much more supportive.

For exams like GCSE, the current rules are that candidates can use a laptop in the exam if this is their usual way of working. So no specialist report required for that.

runningouttaideas Wed 20-Jan-16 17:27:06

OK, thanks running you explained it better than me. I sat here pondering for a while and then decided to bite the bullet and see if I could book a meeting with the new Ht, as it happened she was in the office. We had a very interesting conversation and she said she was in the process of reviewing all of the SEN DC's files. She actually listened to what I was saying instead of humoring like the SENCO and she would like to get my DS re-referred to the OT and try him with a laptop. This is great but at the same time so sad because of all the grief Ds has had to go through in the past.

Youarentkiddingme Wed 20-Jan-16 19:52:42

My DS uses a laptop because he has fine motor difficulties and hypotonia. The OT noted he changed his pencil grip frequently during writing tasks, couldn't write in a straight line and didn't use his other hand to stabilise the paper.

In fact anything he does with his hands requires so much effort and concentration his tongue hangs out of his mouth!

I agree you need to request an OT assessment that is more comprehensive and looks at DS physically movements and how that affects his work and what reasonable adjustments can be made to accomadate his needs and help him achieve his best.

Ineedmorepatience Wed 20-Jan-16 20:06:23

^^ Up there did you say he has it taken from him when he is 'distracted'.

If you did then WOW! Thats awful!

Dd3's OT report recommended a laptop when she started secondary school, it took them months to give one to her but once they did it made a huge difference.

Dd3 has HMS and really struggles with writing. She isnt in school at the moment but family fund have just given her a laptop so she can continue to learn to type and do some written stuff!

I wonder why the HT is reviewing the SEND files, maybe she doesnt have much faith in the senco!

Good luck I hope you get somewhere now!

Darkchocolatebuttons Wed 20-Jan-16 20:22:29

Both my DS's use dragondictate, after years of struggling to write. I can't recommend it highly enough. Even typing can hurt and if you can't keep it up for a 2 hour exam (plus extra time), then, Dragon has to be considered as an alternative form of scribe.

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