A large proportion of every child’s life consists of the time they spend at school. Along with academic learning, children also learn how to communicate, interact, and socialize with their peers.
What teachers and other school personnel need to know about your child’s epilepsy
It is a good idea to educate your child’s teacher and other school personnel about your child's epilepsy. Teachers and other school personnel, with the exception of the school nurse, are not health care professionals, but they do have a role to play in supporting students with epilepsy and ensuring their safety. Most teachers are not always well informed about epilepsy. However, teachers and school personnel need information about epilepsy and how it affects your child in order to provide adequate support. How much participation you should expect from teachers will depend on your child’s age and stage of development, her epilepsy severity, and how much extra attention she requires.
By understanding the important aspects of epilepsy management, your child's teacher can help with your child's healthy adjustment to the classroom, including healthy peer interactions. Teachers also play an important part in ensuring your child's safety, not only in the classroom but in the playground, on school trips, and during sporting activities. A knowledgeable and supportive teacher will potentially reduce your anxiety and hopefully prevent minor crises from getting out of hand. A poorly informed or misinformed teacher who is very anxious about having a student with epilepsy in the classroom can add to the adjustment and management difficulties you and your child encounter.
To avert potential problems, arrange a meeting with your child’s teachers and other school personnel at the beginning of the school year. If a new diagnosis happens during the school year, set a meeting as soon as possible to discuss your child’s individual needs. Provide the school with the appropriate information about your child’s epilepsy and specific needs. Completing an information form about your child’s epilepsy may help school personnel to remember important facts.
Keep the lines of communication open between you and your child’s school, not only so that everyone involved in your child’s care is aware of her current situation, but so that you can work together to address any problems when they arise.
Often, the most important things for teachers to know about your child’s epilepsy are what to observe during a seizure and how to manage your child’s seizures. Give the teachers a list of instructions to follow in case of a seizure. Teachers or educational assistants may sometimes have to give medications to your child.
Even if medication is not given during the school day, you should let school staff know that your child is taking medications for her seizures so they can watch for medication side effects.
It is helpful to have school staff inform you (for example, using a communication book) about your child’s seizures during the school day, as well as any other unusual symptoms that might relate the medications or occur around the time of the 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 require a letter from your child’s neurologist, paediatrician, or other physician in these situations:
- if your child might need an emergency medication, such as lorazepam (Ativan), to stop a seizure at school
- if your child's plan of action includes particular instructions about when to call 911
Children who have seizures and learning difficulties often require a highly structured environment. Experience has shown that the best way to teach children with attention or memory difficulties is using direct, one-on-one instruction.
It may be appropriate to discuss some or all of the following suggestions, many of which have been used successfully in the Epilepsy Classroom at The Hospital for Sick Children, with your child’s teachers:
Set clear rules and expectations in the classroom.
Seat your child near the front of the classroom to help her
focus and avoid distraction.
Provide less written work.
Post a schedule for the day that your child can follow visually. Consistency in the routine is also important.
Use visual tools to teach, such as charts and illustrations.
Ensure that your child masters the skill being taught before moving on to the next skill or concept.
Use physical prompts such as pointing to the appropriate part of the page or covering up sections of a page.
Use "stop and think" techniques, which help teach children to
monitor their behaviour and think before they act.
Use a consistent format to deliver instruction.
Use tape-recorded textbooks.
Allow extra time for tests and assignments and give the child extra time to respond in class.
Provide extra help with problem areas.
Ask the child to repeat back instructions to be sure that she understands them.
Develop a modified learning regimen.
Develop a system in which other students in the class can act as peer tutors.
Provide special education.
"Check in" with your child each day to see how she is doing and feeling.
Use key words or phrases to help shift your child’s attention.
For more information about learning issues with epilepsy that may be useful for your child’s teacher, please see the "How Epilepsy Affects Learning" page in this section.
How to ease your child's entry into new school settings
You need to share information about your child’s epilepsy and treatment if your child is:
- starting school for the first time
- returning to school after a diagnosis of epilepsy
- moving to a new grade or classroom setting
- moving to a new school
Both you and your child may have some concerns about this. You may be worried about safety issues and how she will fit in with her peers and keep up with school work. The best way to handle this is to prepare in advance.
Meet with the school ahead of time
Make sure the school understands your child’s epilepsy and what they can do to help her. Meet the principal, school administrator, and teacher face-to-face and explain your child’s condition, any limitations she may have, and how they can help support her. Be open to answering their questions in order to help increase their knowledge.
- Be clear about what cognitive and physical limitations your child has so teachers can make the necessary accommodations. This might include things like making allowances for extra time needed to understand instructions or finish exams, especially on days just before or after a seizure.
- Make sure to highlight your child’s strengths and areas of interest. This is especially important as it can sometimes be difficult for others to look past the epilepsy to see your child’s abilities.
- Help school personnel understand the way in which epilepsy and treatment for seizures can place children at risk for learning or behavioural problems. Both you and the teacher can
monitor your child’s situation and be aware of any difficulties that could require further assessment.
- Encourage the school to treat your child as they would any other child. Epilepsy should not define your child.
Write a letter
Write a letter (on your own or with the help of your doctor or epilepsy care team), explaining the following things:
- Epilepsy is…
- A seizure is…
- What you need to know about this child’s condition: what her seizures look like, how often she has a seizure, what happens before a seizure, what happens after a seizure.
- Limitations (physical, cognitive)
- What to do if she has a seizure
- Feelings or symptoms she may experience before, during, or after a seizure (ask your child for this description)
Make copies of the letter for your child’s principal, school administrator, school nurse, and teacher to keep on hand for reference.
Other ways to help
In conjunction with your child, help other students understand about epilepsy. Consider offering to do a class presentation about the epilepsy. For younger children, a presentation like the Kids on the Block puppet show might be more appropriate to help them understand about differences.
Provide information to update new teachers each year or when your child moves to a new school.
What to do while your child is in school
It is up to you to make sure your child receives the education to which she is entitled. There are many things you can do to make sure that your child has a successful experience in school.
It is important to develop an ongoing relationship with your child’s teacher to
monitor her academic progress as well as her social relationships with peers. Be aware of any changes in your child’s personality. Following an onset of seizures some children may show more emotions than before, while others may become more quiet and withdrawn. This change in level of emotion can have an impact on friendships.
Children with epilepsy may feel tired sometimes because of medications, poor sleep patterns that result from seizures during the night, or following a seizure at school. This can affect their experience in school. 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.
Support from classmates can also help your child. It is important that your child interacts with her peers and not just with adults. Children who feel they have more support from classmates are less likely to feel depressed and anxious. In consultation with the teacher and the school, seek out another student who may be interested in supporting your child in class. 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, lend an ear if your child is having problems, and provide a sense of security.
- Having a peer tutor: A student in your child’s class, or 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 she enjoyed learning and what she found difficult that week.
Making sure your child can
focus in class is also important. Some children with epilepsy have trouble concentrating and they may need personal attention. You may need to work with the teacher to find solutions, such as seating your child at the front of the classroom or structuring the classroom differently.
Be aware that "streaming" of children into academic or applied courses happens around Grade 9, based on the child’s abilities. This will have a significant effect on your child's future (trade school instead of college or university) and the type of work she is prepared to do. It is important that your child have an appropriate assessment so that she can be in a program that matches her abilities.
For more information, please see the page on "Assessing Your Child’s Needs" in this section.
If your child is falling behind 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 her about which subjects she does well at and which are more difficult. Set up regular times to meet or communicate with her teacher to discuss your, or the teacher’s, concerns. Find out the teacher’s perspective on how things are going and how you can help. Organize tutoring or other support as necessary if your child is struggling or falling behind. You can also obtain advice from the epilepsy care team and
local epilepsy association.
Communicating with classmates
Children may worry about answering questions from classmates. You can try and 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, to some extent, the anxiety related to responding to other students.
Having an information session will teach your child’s classmates about epilepsy and can help to create a supportive environment. In this session, the classmates can learn about your child’s condition and ask any questions. It is important to ask your child if she feels comfortable with an information session being planned for her classroom and if so it would be helpful to find out what your child wants others to know.
If your child is linked to a hospital, a staff member may be able to liaise with your child’s school. Some epilepsy chapters will also provide this service. Include your child in the process as much as she wants. Back-to-school resource kits, books, and videos are also available for these sessions.
Local epilepsy associations may also be available for information sessions.
focus on concerns that classmates raise. Encourage children to ask questions. 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 herself knows.
Telling other parents
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.