It can be challenging and emotionally overwhelming to raise a child with drug-resistant epilepsy. Caregivers often find themselves navigating a new normal after epilepsy surgery and dealing with many concerns about their child’s needs. The good news is that support services are available to help parents throughout this process. 

Alongside Network’s Mission and Approach

Alongside Network is one organization that makes a significant impact, as it integrates mental health care throughout a family’s life.

Alongside Network is dedicated to shifting the system of care for families facing life-threatening illnesses or injuries, ensuring their mental health needs are addressed throughout the entire process. They collaborate with hospital systems to raise awareness and establish a care trajectory while directly supporting families adjusting to life after their child’s illness or injury. Alongside Network aims to provide validation, connection, and support for parents and caregivers by working closely with healthcare providers and families.

Wellbeing Groups: A Warm Hug of Understanding

Alongside Network offers Wellbeing Groups for parents and caregivers looking for a safe and supportive space with others who also have a child who has experienced a life-threatening illness or injury. Wellbeing Groups focus on validating experiences, connecting with other families with similar experiences, and gaining coping skills. These groups are co-facilitated by a clinical professional and a parent/caregiver with lived experience. All groups are offered free of charge to families and meet once per week on Zoom for seven weeks.

A new Wellbeing Group specific to families with a child with a brain injury – or a child who has had epilepsy surgery –  is starting soon! Join us if you want to build community with people who have had similar experiences.

A parent participant expressed gratitude for the Wellbeing Group, stating, “The group is like a big warm hug, where you don’t have to explain everything – other people here already get it.” 

Sign up for the Wellbeing Groups here: https://bit.ly/3T21BVb.

For questions or more information, email hello@alongsidenetwork.org.

Virtual Therapy for Caregivers of Children with Complex Medical Needs

Virtual therapy has become increasingly accessible and widely utilized, especially during the COVID-19 pandemic. It offers convenience and flexibility, allowing individuals to receive support from the comfort of their own homes. Virtual counseling/therapy can be a valuable resource for caregivers of children with complex medical needs. 

Services may vary depending on location and insurance coverage, but many insurance providers have expanded coverage to include virtual therapy due to the pandemic. Be sure to check with your insurance provider to determine if virtual therapy is covered and what options are available to you. Most providers can only see patients in the same state at the time of services.

For those of you in California, Dr. Erin Armer is a mental health professional specializing in providing virtual counseling/therapy to caregivers of children with complex medical needs. Dr. Armer understands caregivers’ unique challenges and emotional journeys and offers support tailored to their needs. Contact Dr. Armer at Brightways Psychology (https://brightwayspsychology.com/)

Check with your insurer about virtual therapy options in your state or visit Psychology Today’s database: Find a Teletherapist – Online Therapy and Video Counseling

Emergency Mental Health Resources

  • National Mental Health Hotline: 988 Suicide and Crisis Lifeline – If you or someone you know is experiencing a mental health crisis and needs immediate support, the National Mental Health Hotline is available 24 hours a day. By dialing 988 from any phone, you can connect with trained professionals ready to assist and support individuals in crisis, including those contemplating suicide. Trained staff members are available to listen, offer support, and provide resources to help navigate through difficult situations. The hotline operates around the clock and is accessible in English and Spanish.
  • SAMHSA’s National Helpline, 1-800-662-HELP (4357) (also known as the Treatment Referral Routing Service) is a confidential, free, 24-hour-a-day, 365-day-a-year information service, in English and Spanish, for individuals and family members facing mental and/or substance use disorders. This service provides referrals to local treatment facilities, support groups, and community-based organizations. Also, visit the online treatment locator, or send your zip code via text message: 435748 (HELP4U) to find help near you. Read more about the HELP4U text messaging service.

  • The NAMI HelpLine is a free, nationwide peer-support service providing information, resource referrals, and support to people with mental health conditions, their family members and caregivers, mental health providers, and the public. HelpLine staff and volunteers are experienced, well-trained, and able to provide guidance. www.nami.org. Helpline: 1-800-950-6264

Additional Resources

The following resources, offered by the Pediatric Epilepsy Surgery Alliance, provide targeted support for parents, caregivers, and siblings of children who have had epilepsy surgery:

  • Parent Support Navigator Program: We offer a Parent Support Navigator Program that allows parents and caregivers to connect with trained volunteers with firsthand experience with pediatric epilepsy surgery. These volunteers can offer valuable support, guidance, and understanding.
  • Sibling Support Program: This program offers support specifically for siblings of children who have undergone epilepsy surgery. It addresses the unique challenges and emotions experienced by siblings and provides them with a supportive community.
  • Managing the Toll of Caregiving – this free, pre-recorded webinar series can help you manage the stress of caregiving a child with multiple disabilities. 
  • The (Almost) Everything List, our extensive resource guide for families of children who are on the epilepsy surgery journey, contains all of the listed resources here and much more.

Here are some other valuable resources that can provide further support and guidance

 

about the author

Audrey Vernick is our Director of Patient and Family Advocacy. She is the parent of a child who had hemispherectomy for seizures caused by stroke. She 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 also serves on the International League Against Epilepsy’s Social Work and Social Services Section.

subscribe to Our newsletter

Never miss a research announcement, event, or our latest news