Back to School with Epilepsy: A Parent’s Guide to Preparation and Support

Preparing for your child to start school can be an exciting time, but it’s also natural to experience some anxiety and hesitation around this new chapter, especially if your child has a condition like epilepsy. Handing over their care to people who don’t yet understand their condition as well as you do can be a daunting thought.

However, sending your child to school should never feel like a compromise on safety or your peace of mind. Sending your child to school with confidence comes down to careful planning, proper documentation, and clear communication with both the school staff and your child.

Whether your child is going to school for the first time, or they’re already enrolled, here is some practical advice to set your child up for a safe, supported and successful school year.

An important step toward minimising your concerns is establishing your child’s safety at school. Schools have a legal responsibility to support your child and make reasonable adjustments to ensure their well-being.

However, these adjustments can only be implemented if you clearly communicate your child’s needs. All school staff should be informed about your child’s condition and understand how to respond to a seizure. Such information can completely change your relationship with the school staff, turning them into a support network you can trust.

The best way to achieve this is by creating an Individual Healthcare Plan (IHP).

What is an Individual Healthcare Plan?

An Individual Healthcare Plan (IHP) is vital for any young person with epilepsy who is attending school. An IHP provides invaluable information about their condition, ranging from a clear description of their seizures to all the ways epilepsy might impact their learning.

This plan should be put together by parents with the cooperation of the school, their child, and healthcare professionals.

At a minimum, an IHP should cover your child’s epilepsy diagnosis, a brief description of their seizures, a list of their triggers, basic seizure management, current medications, emergency protocols, and notes on how their condition may affect their learning. For a comprehensive list, please visit Young Epilepsy’s guide to Individual Healthcare Plans.

Clear descriptions of your child’s seizures will help school staff to quickly identify a seizure and take appropriate action. When these plans are clearly established, teachers and school staff feel far more confident, which in turn helps your child feel secure, leading to a happier, more fulfilling school experience for them and their peers.

Before the term starts, it may be beneficial to schedule a meeting with the school’s Special Educational Needs Coordinator (SENCO). SENCOs are qualified teachers who manage day-to-day support for children with special educational needs; they also guide teachers and work with parents to ensure their pupils get the most out of their time at school.

What are Special Educational Needs?

Your child may need extra support at school if their condition makes it harder for them to learn compared to their classmates. Typically, this covers any condition that impacts a child’s ability to communicate, read and write, or concentrate in class. There are many reasons epilepsy can affect learning.

Seizures disrupt the neural pathways needed to store new information, which often leads to memory issues, and side effects from epilepsy medication can also affect them in this area.

Children with epilepsy may experience difficulty concentrating in class if they have seizures that keep them up at night and leave them feeling exhausted the next day.

What is more, tiredness itself is a common seizure trigger. Disrupted sleep can lead to a chain of unwanted events. So, prioritising a good night’s sleep is essential for a safer, more positive school experience. What can help with that?

Using Technology for Extra Peace of Mind

Epilepsy alarms and monitors, such as NightWatch+, make it much easier to control or at least monitor night-time seizures. NightWatch+ uses heart rate, movement, and body position to monitor for potential seizure activity.

If a potential seizure is detected, the device instantly alerts the included alarm unit. This allows parents and caregivers to respond right away, helping reduce the risks of further complications.

These alerts can provide parents and their children with peace of mind at night, helping each to rest more easily and keep sleep disturbances to a minimum. A good night’s sleep means you and your child will be better able to manage those early morning routines before school.

For further assistance during school time, you might consider investing in a wearable monitor, such as EpiMonitor.

EpiMonitor is a wrist-worn seizure monitor that looks and feels like a regular watch, making it discreet and ideal for school. EpiMonitor is designed to detect unusual patterns of movement that could indicate a generalised tonic-clonic seizure.

If it detects a potential seizure, it automatically sends a call and text message to designated caregivers through the app on a paired smartphone. To find out more about either of these devices, please feel free to contact us or request your free info pack here.

What if Your Child is Feeling Anxious?

Hopefully, the advice above will help ease your nerves come term time. However, what should you do if your child still feels nervous about going to school?

A lot of children feel nervous about starting school; as a result, almost all schools organise open days before the term starts, giving children an opportunity to familiarise themselves with the school environment in a relaxed setting.

Make the most of these opportunities to visit the school, and while there, try to talk positively with your child, highlighting some of the things they are likely to enjoy once school begins.

While you want your child to be excited come the start of term, it’s important to be realistic and ensure they have clear expectations of how their epilepsy may affect them at school.

Explain to them that their teachers and staff are there to support them, and thanks to their IHP, they know exactly what to do in case of an emergency. Ensure your child knows who to turn to for help should they need it.

If they feel tired or unwell, encourage them to speak up and ask for a break. Speaking openly with your child and giving them the confidence to explain their condition can be very empowering for them.

The key is to ease their worries and remind them that epilepsy is just one part of their life; they are at school to learn, play, and enjoy themselves.

If you or your child are worried about how their classmates might react, you can ask the school to host peer-awareness sessions or simple classroom chats to prevent any stigma or confusion.

If your child feels confident enough, they may even want to speak to their classmates themselves about their condition and how it affects them. After all, children are at school to learn, and your child can likely teach them something new about epilepsy. Education and understanding will only lead to greater support.

The level of support your child needs at school will likely change over time, especially during stressful periods like exam season. Epilepsy too can change over time, so it’s best to review their IHP annually, or as soon as any changes happen.

Keeping up open communication with the school ensures they stay up to date with everything surrounding your child’s epilepsy, which is the best way to keep them safe and help them thrive at school.

We hope the information we’ve shared here will help you and your child feel confident and even excited about their first day of school! To find out more about your child’s rights and the support available at school, please take a look at the following helpful links:

• Epilepsy Action – Support at school for children with epilepsy
• Young Epilepsy – Your rights at school