Epilepsy & school - help please!

[changedmyname24]

Ds13 has epilepsy as well as ADHD & autism. He goes to mainstream school where he receives the highest level of support they can provide (highest band on EHCP, often reserved for special schools). He has somebody with him at all times, brought in since he had a seizure whilst alone in the locker room & hit his head.

Since that seizure, he has seen his consultant again, who put him on the largest dose of Keppra for his size. He has not had a seizure (tonic clonic) in around 10 days since this.

However, he does still have absences, up to a couple of times per day & these greatly concern school. These generally last up to a minute & he is vague for up to 10 minutes afterwards.They ring me every time & he is taken to the medical room & he generally misses at least 1 lesson out of 5 per day. It is a rare day that he now attends all lessons in full. They will also now take him out if he is not quite himself. Today he missed 2 whole lessons then got taken out of a 3rd halfway through because the room was a bit noisy. He himself is a loud, chatty character so this was a surprise!

I am feeling rather frustrated at all this as he is clearly not getting a full education & he will find it very difficult to catch up, if indeed he can. And he is missing out on social interaction. Plus I am spending the day in bits waiting for an emergency call & unable to do my work properly. Work are understanding but this clearly cannot continue forever!

DS is very motivated by achievement points so I have explained to him that he can't get these if he isn't in class, as I fear he may take advantage of being allowed to sit out (he does similar with knowing he won't be given detentions). I have also told him that if medical room is suggested & he is ok he can say he is ok & would like to stay in the lesson.

We are seeing the SENCO tomorrow, at her request, and I wonder if there is anything I should say or ask for? It is really not tenable as it is 😥

As well as the EHCP, does DS have a Individual Healthcare Plan? It sounds like that and the EHCP need updating so the school can support DS better/recognise what to do in what situation/feel more confident at managing his epilepsy. Does DS have a specialist nurse?

How quickly does DS recover following absences? Does he need to miss the whole lesson? Some would, others wouldn’t.

What does the school mean when they say he isn’t himself? Could it be side effects of the Keppra?

Rather than the medical room, is there somewhere else DS can go when he isn’t able to be in lessons but doesn’t need the medical room? Somewhere where he could still get on with something related to the lesson.

I don't think he does have an individual healthcare plan as the seizures are a fairly recent development- came on in June of Year 7, he has just started Year 9. So I can ask about that. I do agree that they need to feel more confident, the head hitting obviously really shook them. He does have an epilepsy nurse at the hospital & she sent me an email to forward to them stating he can stay in class & they don't need to ring every time. Although I worry that this will upset them 😬

He normally recovers from absences within 10 minutes or so, doesn't need to stay out of whole lesson - unless they are vastly different at school.

When they say isn't himself they mean anything from a bit quiet, to daydreaming or perhaps swaying & just generally not his chatty self. However I do think his ADHD can account for some of this & his nurse & consultant agree. But school think everything is an absence, before they were calling everything a seizure so there is some progress. It could be Keppra effects but we haven't noticed any at home or other environments (Scouts, grandparents).

He is often taken to the SEN block - for 2 lessons today- but although he is still doing work, I feel it can't be as effective as the classroom plus he misses out on interacting with his peers, which is very valuable to somebody with autism.

I hate epilepsy!

DS definitely needs an individual healthcare plan. Don’t worry about upsetting the school by forwarding the email, the more information they have about how DS’s epilepsy presents and how to best support him, the better. At the moment, the schools sound like they are panicking. If the school is really worried and your meeting doesn’t work, ask if you can have a joint meeting with the epilepsy nurse.

Thank you. It is really good to chat to someone knowledgable about this.

I am getting very nervous ahead of tomorrow's meeting as I am scared they are going to ask him to leave. He is actually quite academic when he can focus & I feel instinctively that a special school would be a poor fit for him. He loves this school very much & for the first year got lots of awards including the big end of year award. DH seems to think that he will only struggle more as time goes on & we should move him in case he can't cope. I am conflicted really.

The school can’t permanently exclude DS like that, so try not to worry.

Thank you, I didn't know that.

Update: I had the meeting with the SENCO today & I was worrying about nothing. She was brilliant & no question of kicking him out, they are going to push for him to do fewer GCSES but stay in class unless bad episode or seizure - all what we wanted. Plus more good stuff really.

I am a little gutted as he is having to drop Drama Club at school as they don't have staff to accompany him. Also, he had to be brought home from Scouts tonight as he had an absence where he fell over & wouldn't have been safe on the exercise. I feel bad that he is missing out on so much 😥 Although he isn't too bothered, I guess. Just all feels so limiting.

Lovely to hear the meeting went well, but sorry to hear about DS’s absence and fall.

However, I would remind the school they should not be excluding DS from the drama club. They should be supporting DS to access all aspects of school life including trips and extra curricular clubs.

I'm coming back to this thread as I'm having a big wobble today & nobody to talk to IRL.

Since the last update, we had DS' annual EHCP review & all seemed well. He has been allowed to drop a number of GCSES, bringing him to 7 from 11. He will be in an extra maths/English class too, which is great. The SENCO said he has made progress on all points in his EHCP - but obviously they can't write it as too much progress or funding will be reduced.

This was end of last term. They have been back 1 week today. Last week was not great & he was kept out of lessons for various reasons from tiredness to not having enough 1:1s. We were not happy with this but haven't said anything to school as thought it might take time to settle back. Yesterday was great & he came out very happy, with achievement points & TAs happy too.

This morning I have received an email stating just that the SENCO & Head of Year want to meet with me & DH, no reason given. I am scared they will say there is no place for him any more & we must seek alternative. But maybe being irrational as EHCP states no need for alternative provision.

I am really all over the place about this & feel like I have let him down massively. We were about 60% sure about MS senior school, then in Year 7 he did so well, getting prizes & making friends like never before! Then epilepsy & hormones properly kicked in & it's a different story 😔 He doesn't get to see his friends as lunch & lessons often in SEN block & is getting low marks on most papers 20-30%.

I don't know what to think or do & really don't want to let him down 😔😔

The school can’t just say there isn’t a place for DS anymore. You can email asking about the purpose of the meeting.

Is the 1:1 detailed, specified and quantified in F?

Why isn’t the school facilitating seeing friends at break and lunchtime? If necessary, staffing for that can and should be in the EHCP.

Thank you for the earlier reply. I did email the school & they said the meeting was about his progress, which seemed fine, I remember similar last year.

However, they have just rung me to see if they can bring it forward to tomorrow (it's supposed to be on Monday), stating it is about his progress & wellbeing. He has done very badly in a couple of tests recently (5% in Maths, but he didn't understand the topic 😔) & has been very upset about these, worried we would be cross with him - we are not.

But it has really panicked me, to the extent that I can't think about anything else, not good when I'm at work. I'm really scared they are going to say they can't cope with him any more, but then I don't know what would happen? We can't have him at home & I can't imagine special schools will have immediate places or that it's easy to put him in one that is right.

I just feel sick thinking that we have failed him. I can't understand how he was Student of the Year in Year 7, to this 😔 Maybe we were kidding ourselves that he could be ok in MS, but it was all going so so well.

I am so worried.

The school can’t just off-roll DS.

The school could request an early review and as part of that process raise their concerns. However, if the school is still your preference, there are limited reasons the LA can refuse to name it even if the school object. If SS is your preference, you can raise this during the review process too.

What support is currently in the EHCP? Both academic and therapeutic. It sounds like more support is required, so an early review would be helpful even if your preference is to remain in the current school. You can request an early review using one of IPSEA’s model letter.

Thank you. It's all so confusing as things have gone pretty smoothly until the last year or two & seem to have got worse this year 😔

He has a 1-1 the whole time & we are required to drop him off & pick him up directly with a staff member. This is limiting & has meant I have had to change my working hours & be late opening up work once a week - DH has now taken over that time so I'm no longer late. At lunchtime he has to eat in the SEN block, which is understandable but means he has lost touch with the group of friends he made last year, especially as he doesn't go to form room either, but stays in SEN block then. I think this covers both academic and therapeutic support?

His EHCP was reviewed just before Easter and they stated he was in the right place, so I would be surprised if it had gone downhill so quickly, not to mention disappointed.

I am concerned about his recent poor test results but feel he will do better next year when he has fewer subjects to focus on. He loves languages & drama so they don't seem like such hard work to him. DH is leaning more towards DS going to special school, doing English & Maths GCSE & learning life skills.

I do feel confused & don't know any more what is the right thing to do. I don't want him to struggle but equally I want him to be challenged. His happiness is of course the main goal.

If DS has 1:1, there is no reason he can’t spend lunch times with friends away from the SEN department if he wants to. They can’t insist DS stays in the department. That would be discrimination. Or the school could facilitate friends joining DS in the SEN block.

DS needs more therapeutic input, including direct therapies.

Have you applied for transport?