my son has a sen statement worth 18.5 hours due to anxiety, irlen syndrome, profound dyslexia, hypermobility and ketotic hypoglycemia.
His situation and health has being going from bad to worse as he has been diagnosed by birmingham childrens as having chiari malformation type 2 and large brain cyst in posterior fossa. This is causing balance problems, severe sleep problems, severe head pain, hot flashes, seizures, intermitant vision problems and for the last 3-4 months he seems to suffering from chronic fatigue. He needs to see a nuerologist 6-8 weeks and has already seen the nuerosurgeon who has stated he will need intercranial pressure monitoring and mist likely decompression surgery and draining of the cyst. These operations need to be agreed on by both parties.
His school are excellent have reduced his timetable, got people to helpcarry items and a teacher assistant help most of the time. However he is not well enough to get there most of the time.
He is really struggling and really upset by not feeling well all the time. He has been given 2 types of medication to try and help with symptoms and pain but these are making him even more tierd. My g.p thinks he would benefit from a home tutor or afternoon setting as mornings are almost impossible due to not being able to wake him up.
I have a meeting with the lea and school on monday due to the complicated issues.
Anybody got any useful advice on how to deal with this?
This is probably after the event now but here goes:
It sound like he needs fulltime support so as a minimum I'd want to make sure that this is agreed (whilst he is in school) and access to education at home when he is not. If the school agree they could send someone home or the LA could fund a tutor. You may need medical evidence to show he can't be in school, a GP letter may be enough even better if from the neurologist.
I would also want this in his statement so ask the school/LA for an early review.