The holidays, usually filled with excitement and family connection, often mean something completely different for families with a member with Prader-Willi Syndrome (PWS). Exorbitant amounts of food, continual interruptions to the normal schedule, and extended social interactions add stress for the individual with PWS and the entire family.
Siblings of individuals with PWS are already under extreme stress and are at risk for emotional and psychological problems (Murphy, Thornton & Thornton, 2019). The holidays tend to add to this, with an increase in stress in the home thereby increasing the potential for trauma and distress for siblings. Parents should keep siblings in mind during this holiday time and take measures to protect siblings as much as possible from these negative impacts.
Tips for the holidays:
- Plan some wonderful family nights during the holidays with meaningful conversations, games, and connection (along with fun food and treats) after the member with PWS goes to bed. Research shows that time with parents, without the child with PWS, is greatly beneficial to the well-being of siblings and strengthens family cohesion, bonds, and trust (Murphy, Thornton & Thornton, 2019).
- Give siblings time away from their family member with PWS. Holidays usually mean a lot of time as a family. However, it is hard as a sibling to be with their family member with PWS for long periods of time as it is often tiring and stressful. Allow siblings times to be by themselves or with friends or family away from their family member with PWS.
- As part of this effort to give siblings needed breaks, make sure the siblings have a space to unwind and revitalize away from their sibling with PWS. This will allow them time to recharge and be more prepared to deal with stress.
- If possible, siblings should not share a room with the child with PWS. Research shows it is better for healthy children to share a room with multiple other siblings than with a child with PWS (Murphy, Thornton & Thornton, 2019). Sharing a room with the child with PWS eliminates almost any chance for the sibling to reboot after the stressful events of the day have depleted their resources and resilience. If it is not possible for the siblings to have a room away from their family member with PWS, make sure they have some type of private haven in the home. This can be in the garage, attic, closet, or even a tent in the living room.
- Remember that hearing the child with PWS tantrum and yell can be an enormous stressor for siblings, even if they are not responsible for calming them down or cannot see them. Sound disturbance greatly decreases the benefits of having a safe space to regain strength. To combat this, consider providing noise-cancelling headphones or room soundproofing. This can be a pre-Christmas gift! For instance, the Boltune BT-BH010 Black Bluetooth Wireless Over-Ear Headphones (noise cancelling) are currently $28.87 on Amazon.com and they compare in quality to the $300 Bose noise cancelling headphones.
- Distractions for the siblings can also be beneficial such as music, movies, outdoor activities, or drives.
- Consider purchasing a safe for the siblings to keep in their room or keypad/lock for the siblings’ doors so the siblings can have privacy and perhaps keep a snack stash.
- In family gatherings, siblings are often tasked with watching their family member with PWS. As one sibling said, “five eyes need to be on her (the individual with PWS) at all times” (Murphy, Thornton & Thornton, 2019). Make sure, if you must have the sibling take shifts, that the time frame is short, and their responsibilities are well-defined. If the sibling makes mistakes, refrain from harsh criticism. This is a hard job for adults, let alone children.
Contributed by Jane Thornton
Note: The views expressed in this article are those of the author and might not be appropriate for every family.
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.
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.
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.
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.
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.