Epilepsy is a special condition, one filled with misunderstandings, myths, and judgment. This means it requires a special caregiver. The special role of caring for a child with epilepsy actually includes many different roles. Some may come naturally; some you may have to work on. Just remember, you need care too, so take time for yourself. Here are some roles you can expect to take on:
You are giving health information to everyone—doctors, schools, camps, etc. You are also the one worrying about your child and the seizures they have. Balancing the management of their condition with being a parent can be a challenge. Kids will be kids. Letting them do normal things, while making sure they are safe, can help them develop independence.
You are learning what epilepsy is and how to give your child the best life with it. So that makes you their guide for everything. As your child grows, you need to teach them how to manage their epilepsy. If your adult child cannot manage their epilepsy on their own, you may need to continue being the guide or find someone else to manage their care.
You are their #1 fan. Advocating for their care, education, and the services they need falls on you. One of your many jobs is to make sure they get the best care possible.
You have to educate so many people (as well as yourself) about epilepsy and the care your child needs. You want your child to be treated just like anyone else, but this may take work over the years.
Epilepsy affects the whole family, including you. Your child can only get the care they need if you are getting the care you need. You are a patient, too. Make sure you are taking care of yourself with a strong support network, rest, a good routine, and time for yourself.
Call the Epilepsy Foundation 24/7 Helpline to learn about resources and support for caregivers.
