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:

Parent to Parent USA is a national non-profit organization whose mission is to promote access and quality in parent-to-parent support for all families who have children or adolescents with special health needs, mental health issues, or disabilities.

Parent to Parent’s virtual training includes:

  • an overview of the peer support program: how to handle referrals, matching, follow-up, and evaluation processes; 
  • setting expectations; 
  • active listening and communication skills; 
  • self-reflection and self-awareness; 
  • role-play; 
  • adjustment and adaptation processes; 
  • cultural diversity; 
  • connecting to national, state, and community resources; 
  • positive philosophy; 
  • advocacy; 
  • leadership; and, 
  • confidentiality. 

All peer supporters must understand the Four Stages of Adaptation in special needs parenting, be able to identify where the matched parent is on their own journey in adaptation, and meet parents “where they are” as discussed in Nobody’s Perfect: Living and Growing with Children Who Have Special Needs by Nancy S. Miller.

The stages can be cyclical and you can be in more than one stage at a time or jump to different stages unexpectedly or when things change in your child’s health.

  • Stage 1: Surviving: “Surviving is what you do to keep going when you feel completely overwhelmed because something totally out of your control has taken away your child’s equal chance at life.”*
    • Coping: just getting by, they may feel like they are underwater; they can’t stop crying; they can’t process; they are suffering.
    • Reacting: draining and exhausting. symptoms of shock and stress:  self-doubt, denial, anxiety (I can’t handle this), fear (fight or flight)
  • Stage 2: Searching: moving forward from the reactive phase and beginning to search for answers, therapy, treatments, etc. Caregivers experience outer searching and inner searching.
  • Stage 3: Settling In: accepting things as they are; moving beyond the intense emotions of the Surviving stage or the anxiety and panic of the Searching stage.
  • Stage 4: Separating – “Separating includes both emotional separation between you and your child, and physical separation, which may happen earlier or later than typical for children who do not have a disability. When Separating becomes a focus, there is an increased emphasis on teaching your child skills for community living and on preparing yourself to let go.”*

*from The Four Stages of Adaptation blog post.

Evidence-based epilepsy self-management training from the Managing Epilepsy Well Network. This training is generously provided at no charge by Dr. Elaine Kirakopoulos from the Dartmouth-Hitchcock Epilepsy Center, a coordinating center for the Managing Epilepsy Well Network (MEW). The Managing Epilepsy Well Network, a multi-state initiative funded by the Centers for Disease Control and Prevention, works to develop, scientifically test, and then share interventions and self-management tools for people with epilepsy. Even after epilepsy surgery, many patients continue to have seizures and take seizure medications; therefore, understanding these areas is essential.  

This overview training helps participants understand:

  • epilepsy, seizures, and how epilepsy is treated; 
  • current terms for the most common types of seizures and how to describe epilepsy; 
  • common morbidities in epilepsy;
  • physical, mental, and psychosocial challenges associated with living with epilepsy; 
  • the benefits of epilepsy self-management and pathways for referral to a self-management program;
  • key epilepsy self-management domains to help people control their seizures, prevent injuries, make healthy lifestyle choices, and improve quality of life; 
  • seizure first-aid (understand rescue meds, requirements of schools and workplaces, seizure action plans); and 
  • ways to provide resources and connect patients with assistance available to people living with epilepsy.
Lastly, Peer Supporters must review and understand epilepsy surgery as covered in our 9-part webinar series “Let’s Talk About Epilepsy Surgery.”

This series provides a detailed overview of the powerful barriers to a prompt epilepsy surgery referral, the different types of epilepsies, epilepsy surgeries, devices, tests and scans, and considerations for decision making. This knowledge is essential for Peer Supporters to understand many options as they are counseling families who may have had a surgery different than the one their child had.

Note that the role of the Peer Supporter in the surgical selection process is mainly managing expectations and supporting them through the decision-making process without making the decision for them.

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.”

If you need someone to talk to, just click on the button below:

 

I need peer support

About the author

Audrey Vernick is the Director of Patient and Family Advocacy for The Brain Recovery Project. She is the parent of a child who had hemispherectomy for seizures caused by stroke. Ms. Vernick holds a level 2 certification in Special Education Advocacy Training from the Council of Parent Attorneys and Advocates and is certified by The ARC in future planning. She represents The Brain Recovery Project in the Rare Epilepsy Network‘s Adult Transition Taskforce and serves on the Youth Advisory Council for HOBSCOTCH (HOme Based Self-management and COgnitive Training CHanges lives), a behavioral program designed to address memory and attention problems for people who have epilepsy.