Many siblings of individuals with Prader-Willi Syndrome (PWS) have weakened resilience which negatively impacts their psychosocial well-being. The daily turmoil and trauma of living with a family member with PWS depletes sibling internal resources. These siblings then face their own challenges with weakened resilience and strength. You as parents and the professionals in the siblings’ lives should make increasing sibling resilience and addressing distress and trauma a priority.
Your child with PWS requires an extraordinary amount of attention. Parents are often overwhelmed and forget their other children need individual attention. In many cases, siblings feel guilty asking for attention because they feel the need to be the “easy, low maintenance” child. You should initiate time alone with each child seperate from the child with PWS. You can be a great support for your children, and they can be a great support to you as parents. Spending quality time alone with your children helps ensure you are building a solid relationship with them where you can communicate freely and give mutual support.
Additionally, spending time as a family away from the member with PWS can strengthen familial relationships, increase individual well-being and family functioning, and create time for siblings to bond with each other in a way they otherwise cannot.
Some Ideas
- Go on vacations together without the child with PWS. Vacations can improve sibling well-being and can even decrease behavioral issues and stress related illnesses (Durko & Petrick, 2013). However, many siblings claim that vacations with their sibling with PWS end up “not being worth it” because they cause so much stress. Some siblings had never been on a vacation because their sibling “made it too hard” (Murphy, Thornton & Thornton, 2019). Going on a trip, even for a short period of time, without your child with PWS can benefit sibling well-being and increase family cohesion.
- Schedule regular times to be with your children without PWS. Let your children plan and look forward to spending time with you.
- Spend time with your children without PWS together and individually.
- Make the extra effort to find a caregiver to provide respite care for your child with PWS so you have time to spend with your other children. *
Advice from Siblings
“Make sure they (parents) have time for each child even if the PWS kid needs more.”
“Make sure you do fun things with them without the PWS kid.”
“Keep in touch with them (siblings) and make sure you have fun things set aside with them. Go to a movie without the kid with PWS. Leave the chaos that is Prader-Willi at home and do something fun.”
“Give them some attention and the feeling that you understand.”
“I wish my dad was home more.”
“Try to talk to the siblings. Make sure they are recognized and that you care. Give them attention and the feeling that you understand.”
“Let’s have a couple weeks where we go off and someone babysits him, so we can experience being in a family without a sibling with PWS and eat as much as we want.”
“Make sure they feel they are a priority. It is clear that the siblings felt left out of their families. Their sibling was the focus. Pay attention to the other kids. Make sure the whole family is included. Tell your kids what is going on.”
“Make sure that all the siblings feel loved, that you don’t focus too much on the PWS kid. If the kids are struggling, give them a break and distract the kid with PWS until they are cooled off. Make sure things don’t escalate too much.”
“Just make time for all of the kids. Be at their things and also know they are there. Take time to notice the other siblings.”
“Most of the attention is on the kid (with PWS). Set some time aside to do stuff with the other kids. Know how they feel and what they are doing.”
“Spend quality time with them, one on one. We don’t get that a lot. Every kid should have the right amount of attention and they should give it to each.”
- Quotes taken from interviews (Murphy, Thornton & Thornton, 2019).
*Helpful links for funding and respite information
- https://www.kidswaivers.org/
- https://www.childwelfare.gov/topics/systemwide/service-array/services-to-children-and-youth-with-disabilities/youth/grandparents/
- https://kidshealth.org/en/parents/respite-care.html
Explore trading care of your child with PWS with other parents in your area to give each other and siblings breaks. Be creative and make this a priority.
Contributed by Jane Thornton and Emma Thornton
Perry A. Zirkel has written more than 1,500 publications on various aspects of school law, with an emphasis on legal issues in special education. He writes a regular column for NAESP’s Principal magazine and NASP’s Communiqué newsletter, and he did so previously for Phi Delta Kappan and Teaching Exceptional Children.
Jennifer Bolander has been serving as a Special Education Specialist for PWSA (USA) since October of 2015. She is a graduate of John Carroll University and lives in Ohio with her husband Brad and daughters Kate (17), and Sophia (13) who was born with PWS.
Dr. Amy McTighe is the PWS Program Manager and Inpatient Teacher at the Center for Prader-Willi Syndrome at the Children’s Institute of Pittsburgh. She graduated from Duquesne University receiving her Bachelor’s and Master’s degree in Education with a focus on elementary education, special education, and language arts.
Evan has worked with the Prader-Willi Syndrome Association (USA) since 2007 primarily as a Crisis Intervention and Family Support Counselor. Evans works with parents and schools to foster strong collaborative relationships and appropriate educational environments for students with PWS.
Staci Zimmerman works for Prader-Willi Syndrome Association of Colorado as an Individualized Education Program (IEP) consultant. Staci collaborates with the PWS multi-disciplinary clinic at the Children’s Hospital in Denver supporting families and school districts around the United States with their child’s Individual Educational Plan.
Founded in 2001, SDLC is a non-profit legal services organization dedicated to protecting and advancing the legal rights of people with disabilities throughout the South. It partners with the Southern Poverty Law Center, Protection and Advocacy (P&A) programs, Legal Services Corporations (LSC) and disability organizations on major, systemic disability rights issues involving the Individuals with Disabilities Education Act (IDEA), Americans with Disabilities Act (ADA), and the federal Medicaid Act. Recently in November 2014, Jim retired.