Profound proprioception problems - any OTs??

[debs40]

DS has been confirmed as having significant problems with proprioception (and other sensory issues). They significantly affect his daily life. He lolls and leans, he is very floppy, he cannot sit and lies on the floor at circle time or goes under tables to prop himslef up. He props himslef up on friends etc. It's like he's made of plasticine!

Even the LA EP noted this in an observation although I think the conclusion at the moment is that it might not be affecting concentration

LA EP has offered to do whole school sensory training but I am concerned that she does not have the expertise to address DS's specific difficulties. Indeed, even our OT who is the head of the paediatric dept is really at a bit of a loss to suggest how to deal with this long-term, save for weighted products.

Any ideas about:

(a) whether an EP is an appropriate person to do sensory training
(b) where I can go for advice about this - I have considered the Dyscovery Centre
(c) what can be done about this long-term

It may be ok to be lolling and leaning at 7 but how are other boys going to deal with this at 9 or 10 and what good will sensory training do if no one knows what to do about it

Don't know about school as they say they do stuff and often don't.
At home you need to think about lots of floor work. Lying on flat on the tummy as a regular postion any time your ds is on the floor. Place some objects on a towel/blanket with different textures/surfaces such as stones or shells, make straight lines with them, circles or build-again make sure your ds is on his tummy and have the objects spaced out so he has to reach for them and cross the midline.
Have you got a play tent, torch or magnifying glass as these are also useful for sensory play? Get some squishy odd shaped balls from somewhere like Hawkins Bazar and play catch.
Have you got a big exercise ball? Have crawling on all four races and anything else you can think off that will get him into the tummy on the floor position. Practice 1st position in Ballet moving the feet slowly in and out a few times. At a table don't let his legs dangle put a box or some support underneath and don't let him sit on his legs.

find sensory trained OT who cna give you exercises to help.

Agree you need an OT who can give you a sensory diet to follow - a physio may help as well, as DS may need to strengthen his muscles, too. Does he have hypermobility? My DS does and he leans a lot and often lies down.

The move and sit is yucky to clean if your child has soiling issues....

Physio can also give him exercises that specifically encourage proprioception: both my dcs (hypermobility syndrome) have had those.

Thanks. Move-n-sit just increased DS's fidgetyness.

DS is hypermobile too. Initially, the community paed referred for physio but the dept said there was nothing they could do that couldn't be done by general activity such as bike riding/swimming - both of which he can't do!

OT said she does do sensory integration but kind of dismissed it as not being evidenced based except a particular brushing method (can't remember what that is called no).

She has just suggested the sort of things you can do to alert the sensory system - breaks, changing activity, running around. No suggestions that sensory integration can be improved long-term.

He is very bendy (can out legs behind his ears!) very slight and very floppy. Bit like Tiny Tim.

I can do stuff at home but I am worried about school and the floppiness becoming an interference with his learning.

Cory - I will ask OT when I next see her about physio but there was a great reluctance to provide it.

Ds has just had a run of physio appointments and they have now booked him into the hospital gym club, he goes once a week for 5 weeks to do a programme that is specifically designed for him (muscle strengthening and balance mainly). When dd did the same, some of the exercises were about proprioception.

Ds does flop and fidget a lot, and I understand that is part of the condition, but at least they are trying to teach him to sit properly so as not to tire himself out.

Sounds like they're trying to fob you off.

I would have thought that the EP would only be a suitable person to do sensory training at the school if she/he is an OT who specialises in sensory integration which she/he is unlikely to be. My son sees a fantasic OT every week for his sensory integration issues, however we have to pay privately and its a 3 hour round trip there and back. There is absolutly no sensory integration provision in our county and I think this is a common scenario. Are there any OT's who specalise in sensory issues in your area?