Hi,
I'm thinking of applying for DLA (Child Disability Payment in Scotland) for my 6 yo who has 22q deletion syndrome. He was diagnosed 2 years ago but we haven't applied as feel very unsure if we'll get it. As he's getting older he's starting to need more support than you would give a 'typical' child his age.
Really I'm looking for advice about whether it's worth applying.
He doesn't have any of the severe physical conditions associated with his syndrome (heart/immune). Our main concerns are about learning/attention/behaviour I suppose.
He is hypermobile so has lots of bumps and falls and is a very messy eater, as well as needing help with zips etc and trickier items like socks depending how tired he is; he has just started using Theraputty daily at school and home and is about to start daily core exercises for this too, and has some modifications in class (eg different seating, modified instruction, pencil grips) and some at home (cutlery, non slip mat, 'high' chair). The hypermobility makes him tired and he finds sustained activity difficult (despite being a very active child!). He has little sense of danger eg road safety. He finds it hard to focus unless it's something he is very interested in (for him, numbers). He follows limited instructions and needs lots of info repeated until he understands, eg instructions for a task - often needs them broken down. He is able to speak in sentences but his speech can sound 'muffled' due to a gap at the back of his throat which affects the way air comes through his mouth and nose - he works hard to describe things to people when they don't understand. His grammar and understanding are also not where I would expect them to be. He is still in nappies overnight despite several attempts (on his instigation) and obviously needs help with getting his nappy on at night and cleaned up in the morning. He wakes often overnight and is often up around 5/5.30. He gets anxious about things and can be very sensory seeking when he feels like this, and often doesn't appreciate that he could hurt himself or someone else when he does this (often pressing his face hard onto someone or something). There have been some 'tics' developed over the last year or so - lots of swallowing and burping. He also still requires lots of support with basic hygiene eg tooth brushing, cleaning face etc as well as the harder stuff like washing hair. He has friends at school and is well liked, but still plays alongside rather than 'with' others most of the time. Currently at school there are no problems academically (just needs careful directions) but I have an inkling this might change as the work becomes more complex - don't need to write that just now though. There are a couple of other things but I think these are the main points.
I know no one here can tell me definitively. But has anyone applied in similar circumstances and been successful?
Thank you and well done if you've read this whole essay!