Parents of children with epilepsy will most likely need to explain many times and over many years what the condition is to not only your child, but to other children and family and friends of all different ages.
Sometimes, it can be hard to talk about epilepsy. There is fear and misunderstanding about epilepsy and seizures, but epilepsy is a common neurological condition—an estimated 0.6% of children have active epilepsy.
Talking about epilepsy can help people realize that children with the condition are just like other children and can lead full, active lives.
Talking honestly and openly about epilepsy will also help teachers, coaches, babysitters, family, friends, and other people who are with you children understand what epilepsy is (and what is not). You will also be able to tell them what to do in case of a seizure.
General Tips on Talking about Epilepsy:
- Try to stay matter-of-fact and positive.
- Encourage questions.
- Have resources ready to share.
- Practice some conversation starters.
- The key message is that people with epilepsy deserve respect and understanding and can lead full, happy lives like everyone else.
Talking to Your Child or Other Children about Epilepsy:
- Be positive and use easy to understand language, not complex terms.
- Encourage them to ask questions and be honest about their fears.
- If you don’t know the answer to a question, tell them you will find out and then follow through.
- Share stories with pictures. You may want to share them with your child’s teacher, too.
- If your child has epilepsy, help them understand their seizures, medications, or treatments. Remember to continue these conversations as your child grows and is prepared to understand more details about his or her seizures and treatments.
Helping Your Child with Epilepsy Talk about It:
Your child may be nervous to talk about having seizures and epilepsy. They may not want to talk about it right after diagnosis and that’s ok. They don’t have to tell everyone; they may want to wait until they have had some time to think about it.
When are they ready to talk, here are some things parents can do to help:
- Explain why it’s important to talk about epilepsy and why educating others will help reduce fear and misunderstanding. Let them know how important it is for others to know what to do if they have a seizure.
- Give them tips on conversation starters.
- Help them understand what kind of questions they may be asked and how they could answer them.
- Encourage them to keep talking with you about how they feel. Let them know you want to hear their concerns and questions.