Pitiful OT provision - any suggestions

[loueytbg]

DS1, recently diagnosed with ASD, has seen an OT twice in the last 9 months, most recently last week. At that appointment, I asked whether we would get a block of sessions (as he desperately needs them) and she said that he wouldn't get anything more until at least September when she would go into his nursery. (His nursery finishes this week).

He has hypotonia and hypermobility and really needs OT to help with exercises to strengthen his core, which the OT says will help his attention skills. Currently he falls all over the place and can't sit still for a second. We have been told verbally by his paed that he has dyspraxia, although there is nothing in writing.

I know that OT are stretched but is there any way to get more provision? Alternatively - do private OT's exist and where would I find one? Am hoping that his DLA will come through soon and we could potentially use that to fund a private OT (assuming we don't get turned down).

TIA

Ds has ot in his statement ready for September but have been told chances of getting it are minmal

tribunal I've been onto BIBIC and funnily enough their information pack arrived this morning. We will definitely go and see them.

roundthebend damn - was hoping that if we got it into his statement that would help. We're at an earlier stage than you though and we won't have final statement until the end of the year. I thought if it was in his statment then LEA had to provide it??

Yep I had to fight get it included but It department now. Saying well we can't provide come September if ds does not get it .I'll fight lea to provide even if means they got to provide to private

I know the feeling-DS (5) no OT provision at present and loads of sensory problems which really need addressing-tbh I am sick of fighting for local NHS provision and we have now gone for a private sensory trained OT and used DLA to pay for block of sessions-still think its criminal though-for our children good OT can make so much difference...really symapthise louey-also going for OT in statement but warned very unlikely...

oddgirl how did you find your private OT??

roundthebend good point re providing private OT. Will bear that in mind if when we have the inevitable fight. I would be very interested to hear how you get on with getting them to cough up some OT.

Actually found through mumsnet (where else??)-someone put a post up ( I will see if I can find it) with a link to all private OTs natioanally and I got her through that-seeing her on Weds so fingers crossed she is good....good luck-will repost when I find the link!!

here?

Thats it LIZS!! Thanks for that!!

Same boat here - OT is on long term sick and not being covered. Have tried to find a private one and there aren't any. So I've just emailed BIBIC, fingers crossed they can fit us in.

I'm going to try the Dyscovery Centre. My DS has similar problems and is very floppy and bendy. He sees an OT but no one seems to know what to do with him. He is frequently found lolling/lying on the floor at circle time.

We've been given nothing for core exercises. It has been put down to sensory issues - proprioception.

I found BIBIC very generic

LIZS thanks for the link, very useful. There is one near-ish to us who deals with ASD/Dyspraxia. Will give her a call

debs our OT said last wk that DS had problems with proprioception too. Sounds quite similar to your DS. She showed me some exercises with a swiss ball but TBH he needs someone to do it with him who knows what they are doing (ie a trained professional). Dyscovery is further away from us, but may be worth us investigating.

bigweehag am sorry you are in the same position.

sadly lot of it comes down to doing yourselves ,like everything else .Ds statement reads ot programm to be done for 30 minutes dailt plus a hr visit each half term .

Ds ot needs centre around his Pd rather than sensory so maybe harder for them to ignore

We have not had any OT help at school, but because ds is in pain he has been able to access a limited number of physio sessions at the local hospital. Basically, it is about the physio showing us how to do his exercises and then us doing them with him.

roundthebend is DS's program to be done at school (assuming that the LEA cough up an OT). Also - what does Pd stand for (sorry for ignorance).

cory DS has been discharged from physio - I think because relative to kids they see at CDC, he is doing quite well. He can walk, run and jump so they don't really want to know.

Have contacted the private OT and she is coming to see DS next week. £70 a session though

Haven't read it all, but my 6.5yo DS2 has hypotonia and hypermobility syndrome. He had 5 sessions with an OT altogether spread out from the age of 18 months to 5 years. He 'officially' is still under OT, but hasn't been seen for 18 months, due to a serious shortage of OT's, we have ONE in our (fairly large) PCT. The best things I did to help him were: to buy a wobble board online and make him use it every day. Buy a writing slope for him to use at home and at school. Buy stabilo s'moove pens and pencils. Do beanbag games where he has to throw with one hand and catch with the other, and also to try to get him to tuck one hand in the back of his trousers(!) and throw the beanbag to the other side of his body so that he has to 'cross his midline' with his free hand. rolling ball games, and we have (finally) started working on hopping, he can hop on one side, when he can hop on the other, he will be able to start to try to pedal a bike/trike. balancing on one leg while holding on to you, graduating to doing it without holding on then to hopping. climbing frames are really good. kiddie stilts where you hold a string, got mine from ELC, you have to help for the first 2 years while. step on the circles game...cut out different colours from card/kids foam, lay them out like :
O O O
O O O
and get him to jump from one to the other, with both feet, and then with one foot.
HTH.

Oh poo the layout of the circles didn't come out like I meant!

O O O O O
O O O O

Hope it works this time!

Sorry! It's meant to come out as a zig-zag pattern, but when I press post, it's stealing the spaces I put in!

sorry pd is physical difculties .Ds still can not hold a pen correctly going into year 1 and we tried all the fancy holders we can , he also has seating need.For him hoping wont haPPEN but yes working on midline hand stuff and hand strenthing excersises and yep plan is for it to be done in school though there not keen amount of time it will take

roundthebend aah, thank you for the explanation. Can't believe the school are not keen on how long it might take - don't they want him to be able to write??

loudlass that's fab advice, thank you and I understood your explanation about the zig-zag circles. Balance board I think is a very good idea - does it matter what type? I've seen some which are round and some which are rectangular boards but not sure if it really makes any difference.

louey think its more down to costs and time ds will be funded for speech unit but becuase of his Pd he is going to need more help and they atm wont be able to get extra funds to allow the addtional help will have to fund from budget do have feeling that there be getting ds out of there asap les smor emoney forthcomming