Talk with a parent who’s been there.
We are thrilled to launch our new Peer Support Program just in time for Epilepsy Awareness Month. 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 peers who are on the same journey. Our peer supporters can share their personal experiences, answer your questions, and provide self-help strategies. We are here with you and we “get it.”
Our peer supporters are certified which means they have completed approximately twenty hours of training in evidence-based core competencies, including:
Our first cohort peer supporters speak English, Spanish, French, Portuguese, Farsi, and Hindi. They’re more than parents who’ve been on a similar journey than you have; they’re trained in evidence-based peer support practices. They’ll meet you wherever you are with empathy and grace.
Two of our peer supporters share why this program is important to them:
Lilian Ansari, MS
“My first experience with epilepsy was at the age of 23 when I became the primary caregiver to my 24-year-old brother with traumatic brain injury. My brother was not the first person with a disability I cared for. At the age of 13, while growing up in Iran, I spent my summers taking care of a younger cousin with muscular Dystrophy. In a way, it seems, I have been training to be an advocate and peer supporter most of my life.
My most important and profound training has been parenting two children with epilepsy and other disabilities. I am passionate about providing peer support to other families so they don’t feel alone on this path. My wish is to empower families to be advocates for their children and to encourage hope and acceptance.”
Erica Deathe, MSW
“My journey started just over 10 years ago and little did I know how extensive it would be! Peer support has been the most valuable connection I’ve had during this time of my life. The journey of special needs parenting is a little less lonely when you can connect with parents and caregivers who are treading the same amount of water, just to survive the daily obstacles.
My passion for peer support started early on as I began sharing our journey with others and realized it was very fulfilling to me to be able to relate and provide value to others’ journeys. This passion grew so much that I went back to school and obtained my Master’s in Social Work, and now even work in peer support professionally. I am happy to work with others on the special needs parenting journey because they are my favorite people of all time! They just get it.”