Epilepsy - what help / provisions should i expect from school?

[kats3]

originally posted in Education bit, but then read theres not many people there, so thought i'd try here :)

just wondered if anyone on here has an epileptic child at mainstream school, and how helpful / accommodation they have found the school?

im not sure what I can expect from the school relating to supervision 'just in case' of seizures, extra help with learning (missed info due to absences, tiredness due to meds and absences) general well being and confidence, playtime/lunchtime supervision, etc

if a generalized seizure occurs, i'm called to pick up, if they notice an absence seizure they tell me at the end of the day if they remember (he has them usually atleast 3 -4 times a day that i've noticed...they have only seen 4 over the last 3 weeks )

they said he doesn't need a SEN statement as hes academically doing well (he was 'above average' before the epilepsy, and although its slowed him down, hes not 'below average')

I know I watch him more than school, I understand that's because im a protective mom, but just wonder what level of supervision I should expect from them, and what is just me over thinking the 'what if's '

[Fluffy1234]

DS's school have been excellent. All the teachers have been informed to keep an extra eye on him. He doesn't wear the winter p.e kit as it causes him to get too hot. He takes sunglasses on hot days and the teachers remind him to wear them and drink lots. If there is a film or T.v showing he doesn't sit at the front and they are very mindful of him going from a dark room into a bright room.
A recent school trip resulted in a few meetings and numerous emails being needed and all the teachers and support staff were very helpful.
Most of the staff have been on courses to learn more about epilepsy. They don't panic if a siezure happens and would only call an ambulance if it lasts more than 5 minutes.
We have been lucky with the teachers and other staff.

[DisAstrophe]

School have an epilepsy plan which keep they updated with his medication and what to do if he has a seizure. Ds has ASD and learning difficulties so he has a statement and a one to one and he is very well supervised.

Would your school be willing to put a home to school diary in place. You can write down any issues - like he is tired or had a seizure the night before. They can tell you if anything happens at school and perhaps write down any homework he might have missed.

[kats3]

thanks all :)

after lots of repeated moaning from me over the last 12 months, the school have now told 'all the staff who teach him' about his epilepsy, plus the lunchtime supervisors...im still a little worried if the supply teachers they often have get told though, as they just seem to tell them after I point out that they don't know (usually after they have taught him for the day)

Re a home school book, I have got this put in place a couple of weeks ago after originally being promised it would be sorted when i requested it January just gone (they didn't offer, and seemed quite surprised when I suggested it) I thought it was going well, but it went in to school 3 days ago, and hasn't come back out, ive asked his teacher for the last 2 days and been told she hasn't had time to look for it, but thinks their supply teacher put it away somewhere (so obviously didn't know its to be kept on the teachers desk during the day and notes added as needed regarding absences, headaches, etc...again, makes me wonder if supply teacher was even told about the epilepsy)

in general (after me repeatedly going in about the same things, and finally asking to talk to the head teacher) I thought I was getting somewhere, the staff know when to call me, what to do, when he needs supervising...but they only seemed to take it seriously when I told them I needed in writing what provisions are in place. he now has an IHP (but this was only done after I found out he should have had that for 7 months and asked to see it...the school nurse phoned the week after to ask about his condition and meds to write one!)

He's due to start swimming at school in june, and i'm dreading it because i'm not sure they understand that it could be dangerous if they don't supervise him. they seem to think the only problem is if he has a full generalized seizure, and that would be easy to notice and deal with, but he also has absences and myoclonic jerks daily which ive been told could be dangerous while swimming :-/

I don't want them thinking im just being over protective, but likewise, I don't want to trust them when they have proven in the past that I shouldn't (he had a partial seizure in school, at lunchtime, got up during it & managed to walk out of the hall down stairs and into the playground on his own without anyone noticing! I found out later that day when I picked him up because of a second, bigger, seizure that they thought was the 1st.)

[DisAstrophe]

Young epilepsy do information packs. They might even do an outreach visit to the school if you're in the south east. Here is their website : youngepilepsy.org.uk/

In fact give the young epilepsy helpline a ring - one of their goals is that children with epilepsy get the most out of their education. And they will be able to advise on what levers you can use to get the school to get the balance right between ensuring your ds is safe and accessing the full curriculum.

[belfastbigmillie]

I now home educate my DS (school were crap re his epilepsy) but to be honest, if he had got as far as doing swimming lessons. I'd have gone there myself to keep an eye on him. My sad conclusion has been that nobody understands the full consequences of epilepsy. They always think they do, but they don't.