Most children with epilepsy attend school and can participate in all activities. Some may need to take medicine at school, help with certain subjects, or extra time on tests. They may sometimes have seizures at school. With more than 300,000 school-age children who have epilepsy in the United States, none of this is that unusual. Yet there's a good chance that many of your child's teachers and classmates won't know much about epilepsy. Educating them is one of the most important things you can do to help your child at school.
Teach Your School About Epilepsy and Seizures
Start each school year by scheduling a meeting with your child's teacher. Discuss your child's condition, any learning issues and how to respond if your child has a seizure. Ask if there are others at the school you should talk to or give information to, such as gym teachers, school nurses, the librarian, etc. Keep in touch with them through the school year about your child's progress, changes in medication and any related issues.
Ask your teacher to discuss epilepsy with the class in a way that is appropriate for the age level and that would be comfortable for your child. Having a seizure at school can be embarrassing for a child and frightening for others. It is better if the teacher discussed it with the students beforehand. Talking to students about epilepsy can help prevent teasing and correct some of the inaccuracies children may have heard. Offer to provide books and other materials the teacher can use. Review the Get Involved section of this website for ideas.
Make sure that all adults who supervise your child during the school day know what to do if your child has a seizure. Don't forget about school bus drivers, lunchroom supervisors, student teachers, etc. Ask officials to post “seizure management” first aid tips in visible locations around the school.
Here are some resources you can give to teachers and others at school to help them help your child:
- Education Programs that can help school nurses, teachers and other school personnel better manage a student with seizures by supporting positive treatment outcomes, maximizing educational and developmental opportunities, and ensuring a safe and supportive environment.
- Seizures and You: Take Charge of the Facts is an epilepsy awareness program for teens in high school to dispel myths and reduce the perceived stigma associated with epilepsy within the teen population.
- Information on seizure first aid
- Contact your Local Epilepsy Foundation to see if they offer educational programs for schools in your community
School & Day Care Materials
- an overview of issues children might face and regulations that can protect them
– a comprehensive guide to help parents protect their children’s rights
- Information for your child's school:
- Forms and communication tools that can help school nurses and teachers understand what epilepsy is and know what to do in case of a seizure
- Education Programs for school nurses and other school personnel available online or through your local Epilepsy Foundation affiliate
- Planning Ahead, an article about seizure emergency plans, and the tools to create a seizure response plan
While most children with epilepsy test in the “average” I.Q. range, they are more likely than others to have learning problems that affect how well they do in school. This could be due to a number of reasons, including:
- Side effects from medication that make a child tired or drowsy
- Frequently missing school for medical appointments
- Regularly “blanking out” due to absence seizures, which sometimes are not recognized or diagnosed for a long time
- Worry or anxiety about having a seizure
- Attention disorders
- Problems with memory and learning in the part of the brain where the seizure occurs
If you are aware of these potential problems, you can work with teachers on possible solutions. Ask the teacher to let you know if your child seems unusually tired, to send home work your child missed and to keep you posted on how your child is doing.
Most teachers and schools want to help children with special needs. They want to make sure they understand how epilepsy affects a child and what to do if a child has a seizure. Try to work with them as partners. Show appreciation for their work, give them information that could help them understand your child's needs and encourage your child to complete assignments.
If epilepsy affects your child's ability to learn, you are probably entitled to special education services. The Individuals with Disabilities Education Act (IDEA) is a federal law that says every child with a disability is entitled to a free, appropriate education in the least restrictive (most “normal”) setting possible. Your local Epilepsy Foundation should be able to tell you about laws and services in your state.
All students who receive special education services must receive an IEP. This is a written plan that outlines a student's needs and goals for the school year.
Unfortunately, you will sometimes run into roadblocks in trying to arrange educational services for your child. Schools may be short-staffed, not want to give your child needed medication, or refuse to modify school policies on grades, tests, etc. for your child. They might feel it is too much of a risk to allow your child to participate in a trip or activity. Even if you have the right to such things by law, you might need to “advocate” or push for them. The Epilepsy Foundation's Legal Rights of Children with Epilepsy in School & Child Care: An Advocate's Manual (link below) can help you do that.
If your child is in day care, you will want to work with the caregivers to make sure they understand what epilepsy is and how to handle a seizure. Visit this website's Living with Epilepsy section for information and tools you can use.
Parents of infants and toddlers with epilepsy sometimes have a hard time finding child care while they work. Most day care centers and pre-schools are not public or run by the government. Many are private businesses, with each one setting many of its own rules and policies. Some have used this independence to deny admission to children with epilepsy or to refuse to give them emergency antiseizure medication. The Epilepsy Foundation has joined lawsuits against centers that refuse to give children emergency medication, noting that the medication requires no medical training to administer and could save a child's life. If you feel that your child has been denied access to child care or services, you can file a complaint with the United States Department of Justice or file a lawsuit. For assistance with legal issues, contact the Jeanne A Carpenter Epilepsy Legal Defense Fund.
The Americans with Disabilities Act applies to private centers. It requires child care centers to provide services for children with disabilities such as epilepsy that are comparable to the services they provide to other children. They must make reasonable changes to policies and practices so that they can serve all children, unless the modification would cause a major change to the program or undue hardship for the center.
Infants and toddlers with disabilities who are at risk of developmental delays are entitled to early intervention services such as physical or speech therapy, case management and nursing services. For information on services in your area, talk to your child's doctor for suggestions or click here for contact information for state agencies.