Going to school can be stressful for children with epilepsy. They may worry about having a seizure in class or how other students will react. Parents are also anxious. They often worry that their child's teacher may not know how to handle an epileptic seizure, or that their child may be treated unfairly because of epilepsy.
In many cases, these fears turn out to be unfounded. Parents should know that epilepsy isn't that uncommon. There's a good chance that yours won't be the first child with epilepsy that the teacher has seen.
But while it would be nice if every teacher, coach, nurse, and principal in the country was well-informed about epilepsy, unfortunately this isn't the case. Parents of children with epilepsy will probably have to get involved in some situations, and do some teaching themselves.
"Parents of children with epilepsy need to get educated about the condition," says William R. Turk, MD, Chief of the Neurology Division at the Nemours Children's' Clinic in Jacksonville, Florida. "They need to learn the facts. By sharing these facts with other people -- and dispelling the fears -- parents can help shape a future for their child with fewer obstacles and limitations."
Take the Initiative With Your Child's School
The best way to prevent misunderstandings about epilepsy at school is to step in early. At the beginning of the year, go talk to your child's teacher and school nurse. Explain that your child has epilepsy. You may want to take some brochures about the condition. Getting the right information to the right people at school early can make a big difference in your child's school experience.
Turk offers this example: If your daughter has a seizure in class and the teacher isn't informed about epilepsy, the teacher will automatically call an ambulance. Not only is the ambulance unnecessary, but the frenzied emergency process may frighten your child and the other kids in class even more than the seizure. When the teacher has been warned in advance, she won't be surprised. She can lay your daughter on her side, and let her have the seizure. Then your daughter can calmly walk down to the school nurse or office when it ends.
"Your daughter could be back in the classroom in thirty minutes," Turk says. If she's taken for an unnecessary ride in an ambulance, she'll miss a lot more school.
This advice doesn't only apply to teachers, of course. You should let relatives, babysitters, scout leaders, and coaches know that your child has epilepsy. Also, let them know what they should do during a seizure.
In some cases, where your child's seizures are uncontrolled, home schooling might be a good option for a while. The convenience that home schooling offers a child with epilepsy, however, may be outweighed by the isolation from other children their age.
Epilepsy and Learning Disabilities
Statistically, children with epilepsy are more likely to have learning disabilities than other kids, according to Turk. But that doesn't mean that children with epilepsy are underachievers. Plenty of children with epilepsy are straight-A students. If your child is having problems in school, talk to your doctor about possible reasons. Among them:
- Sometimes, learning disabilities are directly related to the epilepsy. Whatever is causing seizures in the brain may also affect your child's ability to learn.
- Also, epilepsy medicines might cause side effects that can impair a child's ability to concentrate.
- Your child could have an unrelated learning disability, like any other child.
- Lastly, depression may be a serious and unrecognized issue for children with epilepsy. Depression is "definitely a problem for young adults with epilepsy, and I think for kids, too," Turk says. Kids with depression may have low energy, a limited attention span, and bad grades. Parents should not assume these symptoms are normal for children with epilepsy. Turk says that parents who notice their child is having problems in school should step in quickly. "Don't stick your head in the sand," he says. "You need to get it checked out. The learning disability may have little to do with the epilepsy itself. It may be something that can be corrected easily."
Fighting Epilepsy Stigma in Your Child's School
Coping with people at school who don't understand epilepsy is just one example of the stigma that you and your child may face at times.
"Some people don't understand epilepsy. They think it's a mental illness or a kind of retardation," Turk says. "That's obviously not true, but the reaction that children with epilepsy get to their condition can really shape their outcome."
"Even if your child is very smart, if his teacher treats him like he's stupid because he has epilepsy, that can become a self-fulfilling prophesy," says Turk.
It's important to fight these misunderstandings and prejudices when you encounter them. Explain that children with epilepsy are usually just as capable as other kids. You may meet people who call your child an "epileptic." Explain why the term isn't used anymore: A child with epilepsy isn't defined by this condition. Instead, epilepsy is usually a small part of their life.
No doubt you and your child will meet some people with outdated ideas about epilepsy. But take heart. Turk says the public's understanding of epilepsy is improving, largely thanks to parents who talk openly and honestly about the condition.
"I think it's very important for people with epilepsy not to hide it," says Turk. In the long run, every child with epilepsy will benefit from your openness.