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I have a 4 year old with CP. He has triplegia affecting both legs and his left arm. He is mobile around the house (thanks to Conductive Education) but uses a wheelchair when we are out as his balance is not good and he gets tired easily. I wondered if anyone could help. We want to apply for a disabled facilities grant to provide a downstairs bathroom and bedroom for Christopher. Our OT (who we have to go through to apply in our Borough) will not let us apply. She says, that because Christopher can get upstairs, the most she can do is adapt our current bathroom. I sometimes wonder if these professionals have any idea what it's like to live with a disabled child. I usually carry Christopher upstairs, as when he is tired he will NOT go up. He crawls up and never uses the handrail that the OT arranged to have installed, as it's too much effort for him to walk up and takes too long. Even when he crawls upstairs, it can take anywhere between 2 and 10 minutes, depending on energy levels. Christopher is not yet toilet trained, to be honest I have no idea where to start. His legs are the most affected part of his body, and if I sit him on our toilet (which has no adaptations) he ends up with his legs completely crossed and very wobbly. He won't even do a wee as he is that uncomfortable. So far the OT has come up with nothing in the way of support on the toilet. Anyway, that's a separate issue. My main concern is how I can apply for a DFG. I have spoken to the head office in London, and they say that Christopher definately fits the criteria. So how do I get my OT to let us apply? How can one person put a stop on something? We have even started to look around at bungalows, but we have a lovely house and we can't afford to move. Has anyone had a similar experience and what did you do? Also, any advice on the toilet training would also be gratefully recieved!
sorry I know nothing about adaptopns. but with the toilet seat it sounds like he needs a special one
this is the one dd has. it can fit on a normal loo or comes with a stand,
http://www.rifton.com/products/hygiene/toiletingsystems/index.html this is the rifton one they are good if you are short of space as they fold flat.
HI Nat, Not sure whAt your local set up is but here ds2 has his OT (part of the community team) & also the paed has OT links at the hospital CDC.. was just wondering if perhaps your paed could put you in touch with a more accomodating OT.
Also our local sn school has a pre school outreach team & their OT's & physio's have helped with toilet ideas for ds2. He is nearly 5 & has CP & OCD/poss autism & will not go near the loo!
Thanks for your replies. The toilet seats look supportive enough, but I am worried about how my 6 year old will react to them. He has a problem where he would rather poo in his pants than go to a toilet he doesn't like, and we have to remind him to go to the toilet every morning before school so that he doesn't do it in his pants during the day. I am worried that if we start to put huge adaptations on our toilet, it will put him off and we will have 2 pooey children! Just feel p**d off and like I am going round in circles at the moment.
Nat - my ds (who is 8yo) has cp affecting mainly legs. He can crawl upstairs, but I know what you mean, he gets so tired and frustrated crawling up the stairs. Goodness knows what it does to his knees.
I also had a c**p OT. I rang the dept and spoke to the head of the dept. I demanded a new OT and wasn't going to put the phone down until she agreed! Thankfully she organised a new appt with new OT and it was much better. Some OT's are not trained to work with children so ask specifically for one that has training for children.
Once you have a trained, sympathetic OT you should get a referral - our new OT organised an architect to visit and made plans for a downstairs bathroom and bedroom. (We haven't actually had anything built yet but that was our decision, not the councils).
I can't help with toileting but it sounds like once you have the right set up for a toilet seat then that should make a huge difference - the new OT should help with that!!
Nat - is it possible to get the school to supply an extra big potty with support. I only say this because to your ds it may be less frightening than a big toilet. And it would be portable - the potty could go to your ds, rather than him having to go upstairs.
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