Talk to a parent who’s traveled their child’s epilepsy surgery journey.

Epilepsy caregiver support is essential to helping families navigate the topic of epilepsy surgery. Our trained and certified parent and caregiver support navigators speak English, Spanish, French, Portuguese, Hindi, Farsi, Russian, Malay, and Bahasa Indonesia. They’ll help you navigate the many emotions and questions you may have about your child’s epilepsy surgery journey.

Our parent support navigators are trained in the following core competencies:

  • Evidence-based peer support practices;
  • Support the four stages of adaptation in special needs parenting;
  • Confidentiality, respect, and professionalism;
  • Barriers, socioeconomic challenges, and the pediatric epilepsy surgery journey.

This program is provided in partnership with:

FAQs

Parent and caregiver support navigators are parents of children who have had epilepsy surgery. They can share their personal experiences, answer your questions, and provide self-help strategies. Some of the best epilepsy caregiver support comes from other caregivers themselves.

All support navigators complete approximately 20 hours of evidence-based core competencies, including:

If your child is anywhere on the epilepsy surgery journey, you know that it can be an incredibly stressful and isolating experience to parent a child with drug-resistant seizures. Even after successful epilepsy surgery, it may take a few years for the stress to go away. And family functioning can be impacted, too.

Caregivers and parents find it very helpful to connect with other parents who are on the same journey. Our parent supporters can share their personal experiences, answer your questions, and provide self-help strategies. We are here with you and we “get it.”

This program is not a replacement for psychotherapy. It’s designed to provide mutual support and education to parents and caregivers who may feel a little less alone by meeting with others whose situations are similar to their own. Our Parent Support Navigator Program is just one tool in the much larger toolbox for epilepsy caregiver support.

We’re here to support you on your journey. You can request a parent supporter here:

If you’re interested in applying to serve as a parent support navigator, fill out the application below. We are especially interested in persons who are bilingual, notably in Chinese (all varieties), Korean, Filipino, Tagalog, Vietnamese, and Arabic.

A mother and daughter smile for a classroom photo while celebrating the girl's 5th birthday | Epilepsy caregiver support

Meet our parent support navigators

Reviews

“After our phone call, I felt more centered and left with some notes for my next steps. I was feeling overwhelmed with not doing “enough”. I also wanted to be aware of any programs or resources that I wasn’t already tapping into. It was very informative and helpful.”

“Excellent. I don’t know where else I would have gone.”

“Peer support has been the most valuable connection I’ve had during this time of my life.”

“It’s certainly amazing to have a confidant who gets it, who is compassionate, straight forward, and smart..she’s SO smart and helpful. I now feel more capable and confident than I gave myself credit for, and having that reassurance helps me to keep pushing forward, and also helps me to give myself permission to take time for self care … THANK YOU FOR THIS GIFT!!”