Epilepsy at school

What do teachers and other school personnel need to know about my child’s epilepsy?

Ensuring the health and safety of students with epilepsy is essential to promoting well-being. It requires a partnership among families, the school community and health-care professionals.

It is important to share information about your child’s epilepsy with your child’s teachers and other school personnel. The goal is to foster a healthy adjustment for your child in the classroom and when participating in the playground, school trips, sporting activities, and peer interactions.

Although teachers and other school personnel are not health-care professionals, they play an important role in supporting and ensuring the safety of students with epilepsy. Even if school personnel have general knowledge about epilepsy or know of other students with epilepsy, they require specific information about your child’s condition and its management.

Informing your child’s teachers can be empowering for them and increase their confidence in managing your child’s seizures and supporting them academically and socially.

How should I inform my child’s school about their epilepsy?

You will need to arrange a face-to-face meeting with your child’s teachers and other school personnel to discuss your child’s epilepsy and management plan at the beginning of each school year, if a new diagnosis happens during the school year, or if your child changes schools during the school year.

At this meeting you should discuss the following.

• Describe what your child’s seizures look like, how often the seizures occur, and how best to support your child during a seizure and after a seizure occurs.
• Outline the medication(s) your child is on and whether medication needs to be given during the school day.
• The cognitive, psychological (behavioural and emotional) and social consequences of epilepsy are fundamental to school success:
• Be clear about what, if any, cognitive, psychological and social concerns you have for your child. This information can help your child’s teachers determine what types of accommodations or supports might be useful.
• Make sure to highlight your child’s strengths and areas of interest so that they understand your child.
• If relevant to your child, advise the school that your child may have higher rates of school absenteeism to recover from seizures, attend medical appointments or to test new treatments.
• Establish a plan with the school for when your child has to miss school.
• Encourage the school to promote social interaction and to treat your child as they would any other child.

Complete an information form or write a concise letter about your child’s epilepsy (on your own or with the help of your child’s doctor or epilepsy care team) to help school personnel remember important facts. Make copies of the letter for your child’s principal, school administrator and teacher to keep on hand for reference. The letter can explain the following things.

• Epilepsy is…
• A seizure is…
• What you need to know about my child’s condition: what their seizures look like, how often they have a seizure, what happens before a seizure, what happens after a seizure.
• Limitations (physical, cognitive)
• Medications
• What to do if they have a seizure (seizure response plan; see "Seizure safety" below)
• Feelings or symptoms they may experience before, during or after a seizure (ask your child for this description)

Seizure safety: Plan of action

Often, the most pressing information your child’s school wants to know about your child’s epilepsy are what your child’s seizure look like and how to manage your child’s seizures.

The school should have a Plan of Action in place in case your child has a seizure during the school day. The plan should include:

• what to do in case of a seizure
• when to call you
• if and when to call an ambulance

Ideally, the Plan of Action should be created by you and your child, in consultation with your child's doctor or members of the epilepsy care team if required. It can then be discussed with school personnel.

In addition, schools may require a letter from your child’s neurologist, paediatrician or other physician in the following situations:

• if your child might need an emergency medication, such as lorazepam, to stop a seizure at school
• if your child's plan of action includes instructions about when to call 911
• if there are physical restrictions

What can I do to make sure my child has a successful school experience?

There are many things you can do to make sure that your child has a successful experience in school.

Communication

Keep the lines of communication open between you and your child’s school so that everyone involved in your child’s care is aware of their current situation, enabling you to work together to monitor your child’s academic progress and peer relationships as well as to address any concerns or problems if they arise.

Let your child’s doctor or other epilepsy care team members know if there are any changes that you are concerned about, so they can help find solutions.

Monitor your child

Fatigue is a common complaint of children living with epilepsy and may be related to medications, poor sleep patterns due to seizures during the night, or following a seizure at school. Fatigue can affect their experience in school (e.g., ability to participate fully or to concentrate for long periods of time). They may fall asleep in class or nap when they arrive home from school. Fatigue may make it difficult for them to participate in after-school programs or to finish homework. If your child complains of fatigue or if you notice changes in their epilepsy levels, your child may need to go to bed earlier.

You may need to speak with the school regarding some of the following considerations:

• Reduce the amount of work that your child is expected to complete within a specific amount of time.
• An opportunity to do tests over a series of several days.
• A reduction in the amount of homework that is assigned.
• Offering less intensive classes later in the day.
• Reducing the course load for high school students.

Acknowledge that changes in how your child feels from day to day or throughout the day are normal. There may be days when your child’s learning, engagement in the classroom, ability to make connections and temperament are good. There may also be other days when your child is easily distracted, they forget previously learned information or they are more irritable than normal.

Encourage participation in school activities

Although it might seem like limiting a child’s physical activity is in their best interest, doing so may encourage social isolation and interfere with many opportunities to learn and practice important motor skills, executive functioning and social skills. Every effort should be made to ensure that your child participates in physical activities including gym, recess, lunch, extracurricular sports and field trips.

If your neurologist recommends restrictions due to treatment or risks, ask for a letter to share with the school that specifies exactly what your child needs to be restricted from. Also ask for an updated letter once the restrictions are removed.

In the classroom

Support from classmates can help your child. It is important that your child interacts with their peers. Children who feel they have more support from classmates are more content.

Your child may worry about answering questions about epilepsy from classmates. As a parent, you can try to imagine questions your child may be asked and rehearse the answers.

For example, if a classmate asks, "Can other people catch seizures?", your child could explain that, "Epilepsy isn’t like a cold; you can’t catch it from somebody else." Helping your child develop responses or scripts in advance can help ease the anxiety related to responding to other students to some extent.

Communicating with classmates about epilepsy can remove questions and concerns they may have. With the agreement and support of your child, consider having an in-class information session to teach your child’s classmates about epilepsy and help to create a supportive environment.

In this session, classmates can learn about your child’s condition and ask any questions. Your local epilepsy association may have educators that can go into schools and meet with students and staff to provide education. Try to address the questions that classmates raise.

Children take their cues from adults. Being straightforward, answering questions honestly, and reassuring children that they have no need to be scared can help create a supportive environment. Be careful not to give out more information than your child knows themselves.

If peer relationships are difficult for your child, seek out another student who may be interested in supporting your child in class, in consultation with the teacher and the school. Some ideas that have helped others are:

• Having a "safe friend": Find a responsible child a few years older than your child, perhaps a neighbour or another student, to be your child’s buddy. This friend can watch out for your child, listen if your child is having problems and provide a sense of security.
• Having a peer tutor: A student in a higher grade, may take on the role of "tutor." The details of the role could be discussed with the teacher. It might simply involve weekly "check in" meetings with your child to find out what they enjoyed learning and what they found difficult that week.

It is your decision how much information you wish to share with the parents of your child’s classmates.

• You might wish to share some information to enlist their support.
• It may also be important for them to know how to handle a seizure if your child goes to their house to play or study.

Sharing information about your child’s condition is as important as respecting your child’s privacy. Striking a balance between disclosure and privacy is something that you can decide with your child. Think about what you would like to say in order to maintain your child’s privacy.

How and when to advocate on your child’s behalf

Advocate on your child’s behalf if you have concerns regarding your child’s engagement in the classroom or their learning style or academic achievement. Difficulties with attention, processing speed and memory are common among children with living with epilepsy.

Share your concerns with your child’s teachers and discuss whether your child’s progress should be reviewed through a Special Education Resource Team (SERT) meeting. The purpose of the meeting is to review a student’s progress in order to develop appropriate supports that will allow the child access to the curriculum, consider whether remedial support or consultant services would be helpful and determine whether a psychoeducational assessment or speech and language assessment would be helpful to better understand the child’s learning style and provide recommendations.

Depending on your child’s learning style, it may be appropriate to discuss some or all of the following classroom accommodations with your child’s teachers:

• Set clear rules and expectations in the classroom.
• Seat your child near the teacher to help their "focus" and avoid distraction.
• Post a schedule for the day that your child can follow visually. This strategy can provide a sense of predictability and allows your child to re-orient themselves in the event of missed information due to seizure activity.
• Use visual tools to teach, such as charts and illustrations.
• Use physical prompts such as pointing to the appropriate part of the page or covering up sections of a page.
• Use key words or phrases to help shift the child’s attention.
• Explore whether assistive technology may be useful (e.g. voice to text software)
• Ensure that your child masters the skill being taught before moving on to the next skill or concept. Check back in for understanding.
• Use "stop and think" techniques, which help teach children to "monitor" their behaviour and think before they act.
• Allow extra time for tests and assignments and give your child extra time to respond in class.
• Provide extra help with problem areas.
• Ask your child to repeat back instructions to be sure that they understand them.
• "Check in" with your child each day to see how they are doing and feeling.

Transition to high school

If your child is falling behind at school and needs extra help, consider the possibility of extra tutoring. Seeking help from a guidance counsellor early on, regarding future school plans, is important.

Stay on top of your child's progress at school. Talk to them about which subjects they do well at, and which are more difficult. Set up regular times for your child to meet or communicate with their teacher to discuss concerns.

As a parent, you may also wish to set up a separate time to meet with your child’s teacher to discuss your child’s progress. Find out the teacher’s perspective on how things are going and how you can help your child at home. Organize tutoring or other support as necessary if your child is struggling or falling behind.

Regardless of the age or your child, you can also obtain advice from the epilepsy care team and "local" epilepsy association.