Dd has had mobility problems for about a year now. She has been thoroughly investigated and no physical cause found. Largely because nothing physical can be identified rather than because there are any obvious factors it is considered a psychosomatic condition and she has at last be referred to a psychotherapist at CAMHS. Even if this does help it will be a long process.
She uses a self-propelled wheelchair and as her school has a support base for physically disabled students, the whole school is very accessible so she has managed independently.
Since last week the problems have spread to her hands and arms. She is unable to move her right arm at all and has limited use of her left hand. Her legs are also worse so she now cannot stand even on crutches and her bum shuffling which she uses to get around at home is much more difficult.
She requires help with washing dressing and eating and is unable to write. She also can't get into her bed and is sleeping on the sofa.
The biggest immediate problem is that she can't self-propel and so can't go to school as she can't get around. School say they have no staff to push her. LA says it is not their problem as she doesn't have a statement. IPSEA say it is very much their problem and that there are emergency provisions which allow support to be put in place while waiting for a statement.
Quite apart from not wanting to go through the whole statementing thing again, I am wondering how long emergency provision will take. She isn't ill and desperately wants to be back in school.
As I have health problems myself and a Ds with considerable support needs, I am wondering how much longer I can keep going with the amount of physical help I am giving her but don't know if any help with that will be forthcoming.
I have been contacting every professional she is or has been involved with and other agencies but they always say they will get back but never do. I am currently waiting for 10 different people to contact me. (OK a couple are for ds.)
Any experience or advice welcome as are honks and hand holding.
Here are some suggested organisations that offer expert advice on special needs.
SN children
There must be a way out of this mess but at the moment I can't see it.
NoHaudinMaWheest · 11/03/2014 19:43
This reply has been deleted
Message withdrawn at poster's request.
This reply has been deleted
Message withdrawn at poster's request.
This reply has been deleted
Message withdrawn at poster's request.
This reply has been deleted
Message withdrawn at poster's request.
This reply has been deleted
Message withdrawn at poster's request.
Don’t want to miss threads like this?
Weekly
Sign up to our weekly round up and get all the best threads sent straight to your inbox!
Log in to update your newsletter preferences.
You've subscribed!
This reply has been deleted
Message withdrawn at poster's request.
To comment on this thread you need to create a Mumsnet account.