#1- You are parents and the primary caregivers of your young children. You are the one giving information to the health care team and the primary one working with schools, camps, or other community groups. You are staying up at night worrying, or caring for your child during and after seizures. You want them to stay safe, but may have to balance this with how to let them be kids, and develop independence.
#2- You are a manager. You need to manage your young child's epilepsy. As your child grows, you need to teach him or her how to manage his epilepsy. If your adult child can't manage their epilepsy on their own, you may need to continue in the manager role or find someone else or an agency (for example a group home or agency overseeing your child's care) to manage their care.
#3- You are an advocate. You may have to advocate for your child to get the care they need, to get an appropriate education and any necessary accommodations, and to have their rights respected.
#4- You are an educator. You have to educate so many people (as well as yourself) about epilepsy and how to treat and respond to your child. You want your child to be treated just like anyone else, but this may take work over the years.
#5- You are also a "patient." Epilepsy affects the whole family - the person with seizures, parents, siblings, grandparents, and more. How it affects you will be different than how it affects the child, other children in the family, or your parents. But it will affect you. As a patient, you'll have needs too and would benefit from information and support to help you.
The Job Description for a parent of a child with epilepsy is huge and difficult to meet many times. We hope www.epilepsy.com will help you find the information, support, help and resources you may need in your various responsibilities.
- As you visit the different sections on the site, consider your different roles.
- Visit the Information For Parents to learn about resources for yourself and your family, as well as how to connect with others
- Find your local affiliate to find help in your area. While online resources are great, there's nothing like face to face time and help!
- Talk to your child's health care team as well as your own. Let them know your concerns and how epilepsy is affecting you and your family. Don't be afraid to ask for help. Remember, epilepsy is a family affair!