I don't understand why ds1 is going to get more help at school than DS2

[elliejjtiny]

Just a bit of background. DS1 is nearly 9. Finally, 6 years after me raising concerns with the HV, it looks like he is going to get a diagnosis of AS. We've been treating him as if he has AS for years. Being careful what language we use as he takes things literally. Social stories, visual timetables etc. School is small and friendly so although he doesn't really have friends, he is accepted by the other children and they don't make fun of him when he wants to talk endlessly about trains.

DS2 is 7. He has severe hypermobility (EDS type 3). Gets high rate mobility DLA (and middle rate care) which they don't give out lightly. Uses a wheelchair for anything other than very short distances. His legs wobble when he walks. Sometimes he can't walk at all and is in a lot of pain. I often have to carry him to bed as he just can't walk anymore. DS2 gets hardly any help at school. He is allowed to sit on a chair in assembly and he usually has someone pushing his wheelchair on school trips (as well as looking after a group of children with the normal ratios). Last time he went on a school trip they left his wheelchair behind and DS2 was in an awful state when he got home. He was in agony and he collapsed on the bathroom floor and just cried. Took me ages to get him to bed because I had to carry him but he didn't want me to touch him as it was so painful. I was furious but the teacher said he didn't need it and there hadn't been that much walking. I've been trying to get him more support at school or even more understanding but whenever I think they understand I find out that they don't.

DS1 has seen the SALT and she has recommended we go into school and teach the teachers how to help DS1 and she recommended he join a social communication group (I think that's right) at school. We don't know if the school will agree and so far nothing has been implemented as the SENCO is off sick . But it's already looking more hopeful that he will get more support than DS2 who in my view has much more severe SN. I just don't get it. Maybe it's because the way we treat DS1 is 2nd nature to us now and it's not physically demanding like it is with DS2.

[2boysnamedR]

Are they at the same school?

[blankgaze]

Could you ask dc2's OT or Physio to go into school and point out the necessity of him needing his wheelchair and other daily support.
Ask them to stress to all the staff that this is a serious disability and how to look for signs of him being distressed with even minimum walking (and anything else relevant) because they're just not seeing it. and of course they know much better than parents

[Icimoi]

They possibly see DS1 as in more urgent need of help because physical difficulties don't necessarily have such an obvious impact on learning. However, they are seriously failing DS2 in terms of their equality duties - it is appalling that they let him get into that state on the school trip. I would suggest you try to get them to liaise with the doctors and physio to draw up a full care plan and risk assessment for DS2.

You also need to talk to them about whether they have enough staff to give DS2 the help he needs and, if not, whether they need an EHCP.

[Runningtokeepstill]

Some schools see hypermobility syndrome/EDS hypermobility type (aka EDS 3) as being a minor issue possibly because hypermobility in itself (without all the pain and instability) is viewed as a positive thing. And some adults in schools dismiss children's self reported pain as insignificant, even when it is glaringly obvious, as they see it as children trying to get out of doing things they don't like.

I'd certainly try to get a physio or OT into the school, as blankgaze suggested and I'd be putting something in writing to the school every time something like this happens so that you are creating a record if problems continue. I've known people whose EDS children have been supported in school and others who were treated appallingly despite providing a wealth of medical evidence.

[elliejjtiny]

Thankyou. They're in the same school, DS1 in year 4 and DS2 in year 2. I think you're right about the school not understanding EDS. One of the TA's in year 1 told me that he knew all about EDS as his DD could bend her little finger right back and that DS2, who was sobbing in the corner of the classroom needed to "pull himself together and get on with it". His OT is really good so I'll get her to have a chat with the teacher. we are supposed to be having a meeting with his teacher for year 3 at some point so I'll try and get the OT to come to that as well.

[2boysnamedR]

Ot go into my sons school a lot. Not just for him. Unfortunately there's wasn't a lot if listening until I raised formal complaint after tribunal.

CT decided he didn't need the pen grip, sit n move or to do alert program. I didn't know until I heard this at tribunal. I wasn't happy, it was implemented soon after. Not great

[senvet]

One of the TA's in year 1 told me that he knew all about EDS as his DD could bend her little finger right back

A little knowledge is a dangerous thing.

my dd is hypermobile, and is likely to use voice to text software going forwards. She needs rest breaks frequently, and also needs to change position a lot as holding one stance aggravates the problem.

I had a lot of trouble getting people to understand, but found it helpful to say "It is like severe arthritis". And my dd is not as adversely affected as your DC.

So from an education point of view, your DC may need a place to lie down eg a sofa in the class, someone to scribe for him, so that all his ideas can be recorded without him being distracted by pain, and whatever physio is recommended to assist him to manage the condition and help him learn.

Starting with some technology like touch typing or voice to text might be worth thinking about.

Hope this helps

[Runningtokeepstill]

My 15 year old ds ( EDS and chronic pain syndrome) is currently taking GCSEs at home using a netbook that the school invigilator brings out - he attaches our own full size keyboard. He's starting all the morning ones at a later time and is entitled to rest breaks. This school has been very supportive. His previous one said in yr 9 that they couldn't support him with GCSEs and they never managed to provide a laptop for him in class despite an OT report saying he needed one as writing was too painful, time consuming and lead to barely legible script.

I struggled for a long time to get that school to understand. Sometimes, if the school won't listen despite having all the information, moving on becomes the only option. His current school has been great. Both schools are rated "good" by OFSTED.