Anyone with a child with Ehlers-Danlos Syndrome?

[mycarscallednev]

Hi - just joined MN and am amazed at the support and information here! I have a 6 year old son with EDS, a genetic condition that affects the collagen fibres throughout the body. He suffers pain, fatigue, cramps, and has joints that can hyper-extend 40 degrees in the wrong direction. It affects every joint in his body as well as the muscles and ligaments around those joints. He has rapid bowel transit, an underactive detrusor - a bladder that cannot empty completely. We are members of the support group, but need as much information as we can as..... no surprises here, despite having a diagnosis from GOSH, and being treated there and St Thomas'Hospital London, his school still fail to accept his condition. AND we have a full quota Statement of Special Educational Need. It seems that the NHS are wasting time and money training people to become Consultants in their chosen medical field, they should just utilise TEACHERS, they are apparently the font of all medical knowledge and do their own thing anyway. This includes making a child do PE when they are anxious that they cannot do it, telling a child off for not writing [oops, he has fingers that bend in every direction and has to wear braces on them to keep them in place], telling a child to sit still when he has no core-stability, and saying 'theres nothing wrong with him,he does it on purpose', mmmmm, nice!
The Disability Discrimination Act Code of Practice for Schools has made for a riveting read these past few days!!
I have read through many of the threads here, and they follow those on the EDS messageboads. Our children did not ask to be born with any disability, and we certainly didn't choose it for them, so why the hell do schools treat us as if we are taking up their precious time when they clearly only want to teach those children who are easy to teach, because they are disability free - Oh, think I've just answered my own question!!

I think you did answer your own question in terms of the school your son is attending.

I'm sorry I have no experience of this condition but I do have experience of teachers thinking they know more than medical professionals.

Have you considered looking at other schools who may be more willing to meet his needs properly?

In the meantime I would be tempted to write to the school saying that in future your son is not to participate in any PE activities. Make it clear that you are forbidding it and then they cannot make him do it.

That is horrendous!

as a teacher there is no way I would act like that at all! And there is no way you should be expected to accept it.

you can threated to make a complaint to OFSTED...that usually gets things done in my experience lol

hope you work it out

Hey thanks for getting back so quickly. You're right, of course about the school, however it isn't as simple as we thought. My son has funding through his SEN, however - and why do we ever expect these things to be logical or simple?!!- the funding goes finacial year to finacial year, regardless of if he attends that school or not. We expected the funding to follow the child, what with everyone going on about 'choice', but no! So with this in mind we have no 'choice' but to stay at this school until next Easter. We have enquired at other schools local to us, but they are small village schools and cannot offer the 1-1 that we need out of their own budget. I think that it is time that we say 'no more', and stand our ground here. Its just so depressing having to fight all the time.
I also feel that the more we say 'no', the more the school will make life harder all round, HELP!!

I would report to OFSTED. I made a formal complaint to OFSTED about my ds's preschool and their attitude towards him and is disability and also their administering medication without signed consent. They were given a surprise inspection and served with a notice to improve and my complaint was upheld. We then moved him out and the funding followed him because of the extenuating circumstances.

Perhaps start with a letter to the head copied to the chair of governors saying that if you get no satisfactory resolution you'll be taking it to Ofsted.

You need to shout loud and long to be heard at times like this. Don't give up til you've got what he needs.

Hi Rebl, I did wonder if we could use that route, saying that as they are not using the funding as expected/required we will want it to follow him to another school.
We have a very on the ball O.T. who is furious at what has been going on [ she has only been with us for a couple of weeks], I will make this suggestion to her. Thank you.x

Thanks Al1son, again you're right, we are considering Ofsted, or the Disability Discrimination Act. I need some guidance on these though and am thinking of contacting SENDIST. Has anyone any experience of this at all?

I have tried but never got through. The line is engaged most of the time it's open.

Have you spoken to your local parent partnership service? If they are any good this should be right up their street.

I 'll speak to our OT I think and see what direction she thinks we should go in, but we have a 'Parentlink' service that I have used before, but according to the school the information they have isn't up to date!
.....and so it goes on...!!!

I'd be sceptical about the school's advice about parent partnership. The LEA is legally bound to provide an advice service to parents who are in dispute with schools so the school aren't going to want you to use it.

I would look into it a bit further if I were you. Any other professional has budgetry constraints and professional relationships to consider. Parent partnership should be independent of all that.

Hi mycars. My dd's 7 and hasn't got EDS, she has Marfan Syndrome.

Dd has had many of the issues that you mentioned that your ds has. We are only just thinking about statementing as dd moves into junior school, so you know more than I do about that process!

We recently had a nasty moment regarding PE, as a supply teacher had encouraged dd to have a go on the trampoline. With her hypermobility and heart problems, this could have been painful (if not catastrophic), as trampolining is one of the very definite no-no's with Marfans etc. and the school had been told that dd shouldn't do it. Luckily, she was "just" very tired.

If you are on Facebook, have a look for Marfan Mums group. It is for parents of children that have any connective tissue disorder, not just Marfans.

Thank you deepbreath, its so difficult isn't it? We're off to Northwick Park shortly for Genetic testing for Vascular EDS as well as Marfans. I'll check out that Facebook site, thanks.
We get lots of 'just' tired too, maybe they'd like to swap places and see what it's like!!

Statementing was a nightmare, but we've done that one, but it was worth it, do contact me if you need any help there!

Without the Statement it would be harder to have a case for Disability Discrimination as they have to adhere to the SEN Framework too. This year could be full of fun!

Thank you, too. I hope that the tests are negative for Marfans and Vascular EDS.

Think I need to have a word with the SENCO!