Children of all ages have
epilepsy and most attend school every day. As a parent or caregiver, you play a key role in providing your child's teachers and other school staff with the information they need to create a safe and supportive learning environment where your child can thrive.
Sharing Information with Your Child's School
Work with your school to make sure teachers and other school staff know what to do when a seizure occurs. It is important that every student with seizures has a
Seizure Action Plan. This plan should be provided to all administrative staff and teachers at the school. Many schools have a form for students with special health care needs, sometimes called the "Individual Health Plan," which can used as the Seizure Action Plan.
What's included in a Seizure Action Plan?
The seizure action plan should be reviewed and signed by your child's doctor and should include the following information:
- Detailed information about your child's epilepsy.
- What to do if your child has a seizure at school or on the bus.
- A list of anti-seizure medications that your child currently is taking, including how and when the medications are given, and any side effects.
- Special instructions for the use of rescue medications, used in the case of an emergency, should also be included. If your child has a vagus nerve stimulator (VNS), then instructions on how to use the VNS magnet should also be included.
- A clear definition of what constitutes an
emergency for your child, and what the school should do if one occurs.
What else is important to do if your child is using a Seizure Action Plan?
- Review and update the plan regularly. It is especially important to update when the medications change or dosages are increased or decreased.
- Make sure your child can take medicine at school. This might mean talking to the school nurse or another school official about how to give the medication.
- Ensure that the Seizure Action Plan information is also available during school activities that may occur outside of school hours or off school property, such as bus rides, field trips, or sporting events.
Educating Your Child's Classmates
It can be frightening for students to witness a seizure. Educating your child's classmates early on about proper seizure first aid and epilepsy can reduce stigma, decrease fear, and improve the overall acceptance of your child. Start by having a conversation with your child about his or her seizures. Explore when, where, and how to tell others about his or her epilepsy. Every situation and every child will be different, so doing some role playing and discussing how people might react can be helpful. Here are some suggestions about how to inform others:
- Consider reaching out to school staff to explore educating your child's classmates. Keep your child involved in the education process, too. There are many educational programs and tools available to help teachers create a basic epilepsy program.
- Be a special guest/presenter for the day. Use the curriculum available here.
- Visit the
Epilepsy Foundation's Public Awareness page for information and ideas on talking about epilepsy, as well as a curriculum for training middle school and high school students.
- Reach out to a local Epilepsy Foundation. Every
Foundation affiliate has turnkey educational programs to train students. Foundation staff can assist in the training, too.
Getting to Know Your Child's School and the Staff
Take the opportunity to connect and build partnerships with school staff, volunteers, and other parents. Here are some ideas on how to form those relationships:
- Talk with your child's teachers and other school staff about epilepsy and explain what happens when your child has a seizure.
- Join and volunteer to help within parent-teacher organizations.
- Volunteer to assist at school functions, class parties, etc.
- Become familiar with the school policies and the school handbook.
- Organize meetings with teachers, nursing staff, lunchroom staff, bus drivers, etc.
Like all children, those with epilepsy also need to become familiar with each person in the school that they will interact with, such as the school nurse, principal, etc. This is especially important as they grow older and begin taking more responsibility for their health care needs.
Preparing for Seizure Emergencies at School
Emergencies can happen when your child is in school, and it is important to make sure everyone is prepared. Here's how to prepare your child and the school for a seizure emergency:
- Research school and district regulations.
- Talk with the school nurse about how emergencies can best be handled.
- Develop an emergency plan as part of your child's seizure action plan.
- Keep contact information current.
- Share the plan with all school staff and volunteers (e.g., teachers, recess supervisors, physical education teachers, library staff, lunchroom supervisors, field trip chaperones, or after school activity staff.)
Knowing Your Child's Rights
Most schools must follow the Americans with Disabilities Act (ADA) and provide "reasonable accommodations" if your child has special needs. Other laws, like Section 504 of the Rehabilitation Act of 1973 and the
Individuals with Disabilities in Education Act (IDEA), might also apply if your child has special physical or learning challenges.
Be on the lookout for learning problems or challenging behaviors in your child. Know that you can seek help from the school counselor or request a psychoeducational evaluation from the school psychologist if you feel your child is not performing well.
Avoiding Bullying and Discrimination
All children can experience bullying and discrimination in some form. However, those with epilepsy can be an easy target. If you suspect your child is the victim of bullying or discrimination, contact the school to discuss it further. Here are some great resources:
Helping Your Child Thrive
Remember that your child is more like other students than different. One of your roles as a parent is to help them thrive in their school setting with confidence and a belief that they can reach any goal they set for themselves. This is best done by educating and preparing the school to meet their needs and building your child's or youth's capacity to eventually manage their needs when you are not around.
Additional Information from HealthyChildren.org
Additional Information from the Epilepsy Foundation