Wheelchair at school

[elliejjtiny]

DS2 (aged nearly 5) has EDS type 3 and uses a wheelchair for anything other than short distances. I try and encourage him to walk as much as possible as I have a 2 year old who is still at that walk 6 steps and fall over stage and am 20 weeks pregnant. If DS2 is in the wheelchair I carry DS3 in a baby carrier, it's ok but awkward. The paed and physio want him to walk as much as possible as well.

DS2 is at school part time, 3 days a week, on school action. He hates school, says that he doesn't like any of the children in his class just the class TA. Teachers and senco have observed him in the class and playground and have said that he doesn't really play with other children in class, just alongside them and in the playground he ignores them all and sticks like glue to DS1 (year 2)or one of the lunchtime supervisors.

I keep asking him what the problem is at school, telling him that the senco's job is to help children who find things tricky at school but mostly he refuses to elaborate.

There is an older boy at school who has spina bifida. Normally he shuffles around school and uses his wheelchair for distances. Recently he has been in his wheelchair all the time at school because he has had spinal surgery and needs to avoid being knocked. He was explaining this to DS2 today and DS2 was saying he hates being knocked over and the reason he hates school is because the other children knock him over.

Now he wants to take his wheelchair into school and be in it all the time so he doesn't get knocked over. Good idea in theory but although his wheelchair can be self propelled he isn't good at it apart from on shiny floors. We've taken the wheelchair to school discos before and he screamed like he was being tortured when any of the other children tried to push him in it.

Is there a better way to stop him getting knocked over all the time at school. I don't think he is actually getting knocked over that much but whenever anyone gets too close for his liking he gets frightened. I'm happy to take the wheelchair in every day if needed but I think the school would be more likely to agree to an option that means less effort for them.

[auntevil]

Does the lad who has spina bifida have TA support?
Just thinking that a compromise could be TA support with this at break time - as that is when your DS is most likely to be knocked - and there is most likely to be TA cover in the playground.
This way your DS tries the physio/paed route of using his own muscles around school, but that the knocking incidents are likely to be dramatically reduced, leaving DS more positive. More positive DS, better concentration at school etc...

[trinity0097]

A school disco is not a good time to introduce peers to a wheelchair for your child! It's like when a kid gets crutches for the first time after breaking a leg everyone wants a go, plus you add in the sweaty mix of sweets and hyper children in a disco!

Is he actually getting knocked over, or has he picked up on that from the other child in a wheelchair?

[auntevil]

Thing is with EDs is that what is a pretty innocuous bump normally, can leave bruising and structural damage. So realistically, the fear of being knocked is based on experience, and real. So it's a bit of a toughie. If Ellie's DS won't join in socially in the playground due to fear, then is it any worse to be in the wheelchair and feel less vulnerable?
I have 3 DS with EDs, although they go for the rough and tumble approach . Many a time the lunchtime supervisor has said that an issue has been 'dealt with' as it was only a 'bit of pushing and shoving' in the line. Trust me, in RL, police would look at the bruising and the charge would be ABH.
It's a seriously tough choice. You need to build up muscle with exercise to protect the instability of the joints, but should that be at the expense of emotional well being? Haven't even begun to think of the logistical side! Congrats Ellie

[elliejjtiny]

The boy with spina bifida has a TA funded to take him to the toilet (he has a catheter) but that's it. He is quite good at whizzing around school by himself though, he just needs people to open doors and help him down steps etc.

The school disco wasn't the first time he'd had the wheelchair at school but it was the first time he was propelling himself at school. Sorry that wasn't very clear. It seemed like a good idea at the time but I soon realised it wasn't!

I've had a chat with the senco and she said she wasn't aware of DS2 being knocked over but as his joints hurt anyway even little knocks make it worse. Plus like a lot of things the fear that someone is going to bump into him is the worst bit. She is going to talk to his class teacher and they are going to try and think of how they can help. I will ask about extra funding for when he's in the playground as well although I'm finding that children who have physical disabilities seem to slip through the net with these things.

[isw]

DD has CP. She a wheelchair at school but usually prefers to use her walker. I asked that all the children in her class be told that they are not allowed to push it, just as they know not to push her walker when she is in it. She is also getting more confident at telling other kids to get off :)
However, I was chatting to the OT about it the other day. She reminded me that a wheelchair helps DD access parts of the school that she couldn't in her walker due to distance or that she would be too tired to enjoy once she got there if she walked. She isn't great at self propelling so the OT suggested that if DD felt confident enough to let one of her friends push her she would be able to access things without an adult having to be always with her. Cue DD and her friend being able to take messages, drop the register off etc. Without her wheelchair she wouldn't be able to have these little tastes of freedom.
I don't know much about EDS but if he was in his wheelchair wouldn't he be encouraged to self propel more therefore building muscle in his upper body and truck. If he then gets more confident being in school because he feels he is safer he then might be encouraged to start walking again in the long term. Surely if he is only in school part time there is plenty of time out with that to be working in his walking. maybe sit down with the school and or paed and physio and work out some short term goals. eg to be more confident in school, speak to one more other pupil each week, join in at gathering or show and tell. DD is a similar age and i see school time as social time at the moment. i have asked for all her physio etc to be done out with this time to allow her time to establish friendships and get used to the rustle and bustle of school. she was terrified at first.
Also what kind of chair does he have, DD had a heavy Action 3 to begin with that she could barely move, she now has an active chair which is better and in a couple of weeks should have a charity funded one which is even lighter and has better seating.

[isw]

Wow, essay sorry!

[elliejjtiny]

I think it's an action 3 that DS2's got. We had the choice of that or the blade. I didn't realise you could get lighter ones.

He went on a school trip last week and I insisted the wheelchair came too. When I picked him up I was walking past one of the little girls in his class. DS2 grinned at her and said "hello x". I'd never seen him do that before and from the shocked look on the girl's face I don't think she had either! I was amazed at his confidence and what a difference the wheelchair made.

His IEP already has social things as his targets, and they play games where they have to say each others names which DS2 isn't keen on.

I'm going to try and encourage him to self propel more so that he can get better at it. He likes propelling himself round ASDA as it's easier with the shiny floors and old ladies say "aww, bless him" as he goes past which he loves .