Three sisters pose for a professional photo.

“The sibling relationship is unique in that it lasts the longest of all human relationships.”

Supporting Siblings on the Epilepsy Surgery Journey

Growing up with a brother or sister who needs epilepsy surgery can be tough. These siblings face many emotional ups and downs, as well as added responsibilities. They often need extra support and resources to help them navigate this challenging path.

Families and caregivers can honor and address the needs of siblings by providing them with emotional support, involving them in care and decision-making processes, and making sure that they have their own outlets and support systems.

The Impact on Families

Epilepsy affects the whole family’s quality of life. The unpredictability of seizures, the risk of injury, and social stigma add to the burden. Repeated hospitalizations and lasting disabilities can upset every family member. Caregivers often face significant stress and financial challenges. Sadly, this stress doesn’t end after surgery.

The increased stress can make family life tough and affect siblings’ well-being. Parents may also worry about how one child’s chronic, lifelong disability will affect the other siblings’ well-being.

The Impact on Siblings

When a sibling has severe epilepsy and needs surgery, the impact on their brothers and sisters can be huge. Siblings may feel a range of complicated emotions, like fear, anxiety, confusion, and jealousy, because of the attention and care their sibling gets. They might also feel guilty for being healthy or for having negative feelings about their sibling or the situation. The unpredictability of seizures and the stress of medical interventions can make them feel insecure and worried about their sibling’s future. They may wonder what their role with their sibling will be in adulthood.

Siblings may also face social challenges, such as feeling isolated from their peers, having a hard time inviting friends over, or feeling embarrassed in public situations. Their roles within the family can change, leading to increased responsibilities or expectations to mature more quickly. This can cause feelings of resentment or a sense of loss for a “normal” sibling relationship or family dynamic.

Unique Strengths

Siblings develop unique strengths from growing up with a brother or sister with medical, social, emotional, or developmental challenges. They can celebrate their sibling’s small victories or have a greater sense of compassion and empathy. Many go on to be advocates for others and can connect with people in meaningful ways. They often have better-developed coping strategies than their peers.

Siblings may take on many roles, like helping with chores or providing emotional support. This can help them develop resilience and empathy, but they need to be prepared, empowered, and supported in these roles.

What Siblings Need

Siblings of children undergoing epilepsy surgery need emotional support, information, and inclusion in the family’s journey.

  • Provide age-appropriate information about epilepsy and epilepsy surgery outcomes to help ease fears and misconceptions.
  • Involve them in discussions and decisions when appropriate, helping them feel included and valued.
  • Encourage open communication within the family. Acknowledge the sibling’s feelings and contributions.
  • Support groups or programs for siblings can provide a space to express feelings and connect with others in similar situations.
  • Professional guidance from therapists or counselors can help siblings navigate their complex emotions and roles.

Some final thoughts about siblings

Siblings of children with epilepsy often feel overlooked. They need emotional support, but it’s hard to find. After an epilepsy diagnosis, the whole family could use some psychological help, but it’s often out of reach. There’s a great need for programs that focus on helping siblings and their families after epilepsy surgery.

In our Community Needs Survey, 35% of respondents asked for help with “dealing with sibling issues” and “finding sibling support.” During our 2022 family conference, most sibling participants reported that they had never discussed their feelings with a parent or other adult. This shows how much these siblings need a support system.

At the Pediatric Epilepsy Surgery Alliance, our vision is to ensure that siblings of children who have had or need epilepsy surgery have the support they need to thrive. By sharing these resources, we aim to give siblings and families the tools, emotional support, and practical advice they need.

Below, you will find information and resources organized by life stages to help you support siblings.

Find all of these resources and more on The (Almost) Everything List, our extensive resource guide for families of children who are on the epilepsy surgery journey.

What you see in toddlers and preschoolers

  • Resentment when away from parents: young kids often feel upset when separated from their parents, especially if their sibling with severe epilepsy needs a lot of attention.
  • Extreme behaviors: they might act out or try to be overly perfect to get noticed; this can be their way of coping with the situation.
  • Signs of trauma: early signs of trauma can show up as unexplained aches, increased fears, or self-blame.

What they need

  • Age-appropriate information: Kids need simple, clear explanations about their sibling’s condition to understand what’s happening.
  • Shared enjoyment: Create fun activities for siblings to do together.
  • Guidance on sibling interaction: Help them learn how to play and interact positively with their sibling who has epilepsy.
  • Quality alone time with parents: Spending one-on-one time with each parent helps them feel valued and secure.
  • Validate their feelings: Listen to and acknowledge their feelings, including fear, confusion, or jealousy.
  • Diverse representation: Use diverse toys, books, and shows to teach about different abilities and lifestyles.
  • Create a safety plan: A prepared set of steps and roles for family members to follow during moments when a child with epilepsy (or other complex needs) experiences an escalation or exhibits disruptive or aggressive behaviors helps reduce stress and confusion in the moment by having clear, rehearsed actions for everyone involved.

Articles & Guides

Books

Videos & Webinars

Interactive Tools & Support Groups

Organizations

  • Sibling Leadership Network: A non-profit organization whose mission is to provide siblings of individuals with disabilities the information, support, and tools to advocate with their brothers and sisters and to promote the issues important to them and their entire families.
  • Sibling Support Project is a national program dedicated to the lifelong and ever-changing concerns of millions of brothers and sisters of people with special health, developmental, and mental health concerns.

What you see in school-age children

  • Embarrassment or protectiveness: Kids might feel embarrassed about their sibling’s condition or become very protective of them.
  • Upset over different treatment: They might be upset if their sibling with epilepsy seems to get away with things they can’t.
  • Minimizing their successes: Children may downplay their own achievements and abilities.

What they need

  • Script for peers and strategies for bullies: They need ways to explain their sibling’s condition to friends and handle bullies.
  • Explain different rules: Give clear explanations about why rules might be different for their sibling, and try to hold siblings to the same standards when possible.
  • Celebrate successes: Regularly celebrate their accomplishments and achievements.
  • Acknowledge feelings: Recognize and validate their feelings about their sibling’s condition, including embarrassment, fear, guilt, or feelings of isolation.
  • Opportunities for self-expression: Offer ways for them to express their thoughts and feelings, such as through art, writing, or verbal communication. Encourage participation in activities outside the family to foster independence and self-expression.
  • Discuss unique needs: Address each person’s individual needs within the family. Give reassurance that their needs matter, even when another child requires more attention.
  • 1:1 time: Continue to spend one-on-one time with each child.
  • Discuss the sibling’s condition: Provide a more detailed explanation of the sibling’s condition so that they can better understand it. Include them in conversations and answer their questions directly.
  • Give them a role: Children at this age may appreciate having a role or responsibility, but not to the point of “parentification.”
  • Create a safety plan: A prepared set of steps and roles for family members to follow during moments when a child with epilepsy (or other complex needs) experiences an escalation or exhibits disruptive or aggressive behaviors helps reduce stress and confusion in the moment by having clear, rehearsed actions for everyone involved.

Articles & Guides

Books

Videos & Webinars

Interactive Tools & Support Groups

Organizations

  • Sibling Leadership Network: A non-profit organization whose mission is to provide siblings of individuals with disabilities the information, support, and tools to advocate with their brothers and sisters and to promote the issues important to them and their entire families.
  • Sibling Support Project is a national program dedicated to the lifelong and ever-changing concerns of millions of brothers and sisters of people with special health, developmental, and mental health concerns.

What teens experience

  • Future-oriented concerns: Teens might feel anxious about their sibling’s future with epilepsy.
  • Guilt about their own life experiences: Teens may feel guilty for enjoying their own life while their sibling struggles.
  • Desire for independence: Teens often crave more independence and time away from their families.

What they need

  • Involvement in plans: Include teens in discussions about their sibling’s services, interventions, and future plans. They want to be part of the decision-making process and may have concerns about the role they will play in their sibling’s life.
  • Acknowledge feelings: Recognize and validate their feelings about their sibling’s condition, including grief, frustration, or fear about the future.
  • Coping strategies: Teach them strategies to help manage their feelings. May benefit from peer support groups or counseling, especially if they feel isolated.
  • Support self-expression: Encourage participation in activities that allow individuals to express their thoughts and feelings, such as art, writing, or talking. Spending time outside the family helps foster independence and self-expression.
  • Celebrate successes: Regularly celebrate their accomplishments and achievements.
  • 1:1 time: Teens still prize one-on-one time with their parents or caregivers.
  • Discuss the sibling’s condition: Provide clear information about epilepsy treatments and surgery outcomes to help them understand.
  • Create a safety plan: A prepared set of steps and roles for family members to follow during moments when a child with epilepsy (or other complex needs) experiences an escalation or exhibits disruptive or aggressive behaviors can help reduce stress and confusion in the moment by having clear, rehearsed actions for everyone involved.

Articles & Guides

Books

Videos & Webinars

Interactive Tools & Support Groups

Organizations:

  • Sibling Leadership Network: A non-profit organization whose mission is to provide siblings of individuals with disabilities the information, support, and tools to advocate with their brothers and sisters and to promote the issues important to them and their entire families.
  • Sibling Support Project is a national program dedicated to the lifelong and ever-changing concerns of millions of brothers and sisters of people with special health, developmental, and mental health concerns.

What young adults experience

  • Questions about future planning and caregiving: Young adults often worry about their future role in caring for their sibling with epilepsy.
  • Concerns about identity: They may struggle with balancing their own life and responsibilities related to their sibling.
  • End-of-life concerns: Young adults might have fears and questions about end-of-life issues for their sibling.

What they need

  • Coping mechanisms: Strategies to handle new feelings and anxieties about the future.
  • Connection: Sibling support groups can provide shared experiences and advice.
  • Understanding epilepsy surgery: Provide clear information about epilepsy treatments and surgery outcomes.
  • Guidance on navigating systems: Teach how to manage legal and financial planning, healthcare, and social services for their sibling.

Articles & Guides

Books

Videos & Webinars

Interactive Tools & Support Groups

Other Resources 

Key concerns of adult siblings

  • Questions about future planning and caregiving: Many worry about their future role in caring for their sibling with epilepsy. Adult siblings often balance caring for their own children and aging parents, while also considering the needs of their sibling. They need to understand the specific care and support their sibling will require in the future. It’s essential to determine how involved the sibling wants to be in the care and support of their brother or sister with epilepsy.
  • Concerns about identity: They may struggle with balancing their own life and responsibilities related to their sibling.
  • End-of-life concerns: They have fears and questions about end-of-life issues for their sibling.

What they need

  • Coping mechanisms: Strategies to handle new feelings and anxieties about the future.
  • Connection: Sibling support groups can provide shared experiences and advice.
  • Understanding epilepsy surgery: Clear information about the effects and results of epilepsy surgery on their sibling’s health and well-being.
  • Guidance on navigating systems: How to manage legal and financial planning, healthcare, and social services for their sibling.
  • Support services for family caregivers: Support in navigating the responsibilities of possibly taking on a caregiving role.

Articles & Guides

Books

Videos, Webinars & Podcasts

Interactive Tools & Support Groups

Other Resources 

How caregivers can support siblings

Throughout all stages, make sure that siblings have access to individual attention from parents, open dialogue about their feelings, and sibling support groups or counseling.

  • Be observant: Pay attention to what your other children are good at and what might be bothering them.
  • Talk openly: Check in with your children regularly. Let them share their feelings and listen to them.
  • Ask, don’t assume: give your children the chance to say “no” to activities or conversations and respect their choices. Let them participate in discussions when they feel they have something to offer.
  • Share information: Find books or videos that explain epilepsy and challenges with disabled siblings in a way your children can understand.
  • Provide connections: look for trusted adults your children can talk to and find groups where they can meet other siblings in similar situations.
  • Get professional help for your child: mental health services, such as counseling, may be necessary.
  • Get support for yourself: the research emphasizes the impact on the entire family.
  • Prepare for the future: learn about adult service agencies and create financial plans so that your nondisabled children have a clear understanding of how to support their siblings when their parents are no longer able to do so.

Articles & Guides

Books

Videos, Webinars, Podcasts

Interactive Tools & Support Groups

Bereaved siblings and their families need to explore different resources and find what works best for them, as everyone’s journey through grief is unique. There are many resources available to help them navigate their grief and find support. These resources include:

  • Support Groups: Many organizations offer support groups specifically for siblings who have lost a brother or sister. These groups offer a safe space for individuals to share their feelings and experiences with others who understand the unique nature of sibling loss.
  • Counseling Services: Professional counseling or therapy can be incredibly beneficial. Therapists who specialize in grief and loss can help siblings process their emotions and develop coping strategies.
  • Online Communities: There are numerous online platforms and social media groups where bereaved siblings can find support, share their stories, and connect with others who have experienced similar losses.
    • Grieving.com: A forum for individuals grieving the loss of a loved one, including sections for the loss of a sibling.
  • Books and webinars on the topic of grief and sibling loss. Learning about others’ experiences and strategies for coping can be comforting and informative.
  • Memorial Activities: Engaging in activities that honor and remember the deceased sibling can be a healing process. This can include participating in memorial events, creating a memory book, or other personal tributes.
    • The Sibling Connection provides ideas for memorializing a lost sibling and offers guidance on coping with grief.
  • Educational Workshops and Seminars: Some organizations offer workshops and seminars on grief and loss, providing education on the grieving process and strategies for coping.
    • The Dougy Center provides workshops and resources for grieving children, teens, and their families.
  • Camp Programs explicitly designed for children and teenagers who have lost siblings or parents offer a mix of fun activities and grief support, facilitated by professionals.
    • Camp Erin is a free, weekend bereavement camp for children and teens who have experienced the death of someone close to them.
  • Websites and Online Resources dedicated to grief support.

What About My Other Kids?

Eileen Devine, a licensed clinical social worker, examines sibling dynamics in families with children who have epilepsy. She offers practical strategies to support siblings, emphasizes brain-based differences and trauma, and highlights the importance of self-compassion, communication, and safety planning.

The Lifelong Impact of Having a Sibling with a Disability

This session is all about understanding the brothers and sisters of people with disabilities. Research shows that siblings of people with disabilities have their own special qualities and needs, but often, families and experts don’t really know the best ways to help them out. Nikki Donnelly and Calyn Farris from the California Sibling Leadership Network delve into the studies and share real-life stories from these siblings.

Sibling Support 

In this session from our 2022 family conference, Audrey Vernick, Director of Patient and Family Advocacy for the Pediatric Epilepsy Surgery Alliance, and Dr. Lindsey Devries from Children’s Hospital Colorado, explore the significance of understanding the sibling dynamic for families with a child who has a disability.

Sibling Experience

In this Power Hour, Emily Holl, Director of the Sibling Support Project, will lead a candid conversation with three adult siblings who grew up in families shaped by drug-resistant epilepsy and epilepsy surgery. Together, they will share stories that reflect a saying often heard in our community: “Once a sib, always a sib.” Even after loss, the sibling bond continues to shape their lives.

 

Key research on siblings: