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!
Cheers
Natalie