Young people flourish when their schools create inclusive, supportive environments where they feel a sense of belonging, and this is especially true for those living with epilepsy. Unfortunately, stigma, limited training, and poor understanding can leave these students out.
That’s why Jane’s story stands out. She reached out to share how her son Harry’s school has not only included him but truly celebrated who he is.
Harry's epilepsy journey
Harry was diagnosed with epilepsy at 14 following a COVID infection. Unfortunately, after experimenting with different treatments, Jane and Harry has some bad news.
This type of epilepsy can be like a volcano - erupt and go down - or it can carry on. His has carried on and I was told it would be drug resistant now.
After pursuing different options, they finally found a balance of medication that at least helped the side-effects of his seizures: "Interestingly, one medication which he started a year ago has got a mood stabiliser in it and I think that has helped calm him down. It's like levelling it out."
With so much going on at home, it was natural that Jane had fears of how Harry would be accepted at school. However, solid communication, an understanding staff, and excellent school systems helped ease those worries.
"You hear horror stories, but our school experience has been very positive."
Jane and Harry’s story
Jane knew she had to use her voice as a parent to make sure Harry’s needs were understood by school staff
It’s a professional, adult, two-way communication. I know what my child needs and I know what you are required to do.
However, striking the right tone with school helped Harry’s inclusion in school activities and Jane’s continued relationship with the staff.
"Don’t get cross. The way you speak is important. It doesn't have to be aggressive, but it could be firm... There is a difference between being assertive and shouting – screaming doesn’t mean that it gets anyone anywhere, and you get labelled as that difficult parent."
Jane also understood that the discussion about Harry’s epilepsy was not a one-time event. The conversation needs to be ongoing, and staff need to be informed about any changes, developments, and issues.
"Keep communication relevant - this is what you need to know today, whoever the teacher is today needs to know this. I am always very clear... For example, if he has had midazolam overnight and he's coming to school, he needs to be able to ring me if he struggles... It is big thing if he's having midazolam overnight, that could make him really tired."
Jane also emphasised with the school that his day-to-day behaviour could change because of his seizures and the side-effects of his medication.
We had an agreement that if he was rude or aggressive it would be treated as a medical incident not as a behaviour incident.
Let's just be very clear this is a side effect, and to let me know if he is having a bad day.
The Assessment of Behaviour and Learning in Epilepsy (ABLE) form is an effective tool of logging behavioural changes in young people with epilepsy in schools.
The role of the school, carer and child in school support
From the beginning, Jane and Harry felt like the school had their back: "They have an extraordinary willingness work around him. We're all here for the care of the young person and that care is to give him a rich and varied life."
Everyone was aware of their role in Harry’s inclusion in school, and that an essential person in this inclusive environment was Harry himself.
Think about what role the young person themselves has. He is quite vocal and quite clear on who he is and what he needs.
Harry knows that there are places he can go and people he can talk to about his epilepsy, particularly his PE teacher who also has the condition: "They were good in school for his mental health. He has someone he can go and see at a break or a lunchtime. It could be a school counsellor, or just a favourite teacher—Harry is all about the PE teacher."
For inclusion to be effective, however, more than a few members of staff need to be on board.
There needs to be school-wide structures in place, with adjustments made in each setting to accommodate a young person’s needs: "You need to talk to all the spaces he goes - if he's in a science lab, that's a different set of risks. It is good to think about how it works in all areas of the school."
Of course, one of the most important ways schools, parents, and young people with epilepsy can remain on the same page is with an up-to-date Individual Healthcare Plan (IHP): "Everyone with medical needs has a one sheet document. Not everyone’s is filled in, but I make sure of that."
How Harry’s school has included him
Jane has some guidance for parents of young people with epilepsy when it comes to choosing the right school. For Harry, that was one that celebrated inclusion: "Other schools are selective in the way they market themselves, in the way they publish their league tables. This school is a very inclusive school, comprehensive in all the meanings of the word. They have to deal with people of all abilities."
Throughout his time there, Jane has found many instances where Harry’s school has shown support. When everyone has a clear idea of what Harry wants to and is capable of doing, efforts are made to ensure he finds the experience as inclusive as possible: "I approach a school trip with ‘let's make it work so that he can go’."
One day in particular stands out to Harry and Jane.
There was a whole day English literature day which he went to. They made sure he could be involved in the parts he wanted to attend.
The school has listened to how Harry wants to be treated. For example, many young people with epilepsy are eager to take part in assemblies to educate other students on their condition. This, however, does not suit Harry: "Assembly? Harry would actually hate it!"
The sense of belonging is not just at school. His running club has also been fantastic. Jane made sure everyone had a copy of the IHP and understood what to do in case of a seizure: "The rules are that under 16s are accompanied by an adult at all times. I don't think he feels singled out. In the club, everyone is so aware of him.
"He actually had a seizure at the club. I was outside, he was inside having dinner, and everyone was so helpful. It was the nicest possible place to have a seizure. They just yelled to get me, and when I came, they had his head supported. It was a very supportive environment."
Despite everyone’s best efforts for inclusion, epilepsy can still get in the way and parents still need to make difficult calls: “There was an awful time when he wanted to do Duke of Edinburgh expedition and the days ticked down, and he would have seizures and every part of my fibre wanted him to go.
“He was entitled to go on the trip but as his parents we have to just be sensible, practical and reasonable. He was really upset but we explained to him that we all are doing this in your best interests.”
When Harry changed schools, Jane worked hard to find a provision that worked for Harr: "We live in a rural place, and Harry’s choice of college has no bus to it. I had to chase and chase, but eventually found transport form the Local Authority so Harry can get to his college without me."
Camilla Baker, our Inclusion Manager says:
Young people living with epilepsy have told us that they want the staff around them to care: to listen to their experiences, understand the varied impact of epilepsy and support student to access all areas of school life. This can be as small as taking time to provide catch up notes for missed lessons, or checking in on their mental health.
Epilepsy is a very complex condition, there is lots of support out there – please look around our classroom resources, or feel free to get in touch with any school related questions.
Top tips for school inclusion
Considering Jane and Harry’s story, there are some key tips to take away:
- Parents/carers often need to start communication to ensure your child’s needs are understood. Know your rights and communicate adult to adult.
- Two-way dialogue is essential. Jane lets the school know if Harry's seizures are likely to impact his day, and the school does the same for when he returns home.
- Listen to how the young person wants to be supported. What is inclusive for one young person with epilepsy may not be for others.
- Schools need to understand how epilepsy affects behaviour, memory, and energy levels, particularly when it comes to seizures and anti-seizure medication.
- A genuinely inclusive environment helps build trust with families. Rather than only seeking a school that is selective or performance-driven, find an environment where support and inclusivity are valued most.
Coming back to school after the holidays can be a daunting experience for young people with epilepsy. By making sure that parents, school staff, and the young person are communicating about the best support systems, you can reduce the worries for all parties and help all young people with epilepsy feel included in school and clubs.
