We are in the chaotic midst of the holiday season. Traditions, gatherings, travel, food, gifts, more food, and expectations of how it’s all supposed to look permeate this time of year. These expectations and traditions can be very challenging for families in general, but especially families of loved ones with PWS. Expectations may be high, and traditions may take precedence, but it’s important to remember that those can and may need to shift.
The Expectation to Keep Up with Tradition
Family is important. Many of us long for the traditions of our youth. Others may expect us to uphold traditions even if we don’t long for them. It’s good to talk with your family about why certain traditions may need to change. If you are uncomfortable with changing tradition, try reframing the discussion around making adjustments.
Adjust the Details
Your 50-attendee family party may not be a safe or healthy place to celebrate. It’s okay to step back for a year. Allow yourself and your family the space to be comfortable and healthy. You don’t have to make every gathering or be at events from start to finish. If you or a loved one feel grief about missing an event, remember it may be for only this year. Take it year by year. Things shift and it may be easier to attend next year’s gathering. Or you may find you create a new tradition that is more enjoyable and appropriate.
When you are at gatherings, remember that it is an option to leave before your loved one gets too exhausted to manage social expectations. If possible and necessary, drive separately from another adult so you and your loved one can exit when needed. Have a plan for siblings to stay if that works for your family.
Arrive After Food or Bring Your Own
Holiday meals are typically full of calorie-dense excess, something that we know is not healthy for our loved ones with PWS. Talk with your family about cooking PWS-friendly meals and have strict eating times for everyone. That would be the ideal. If that’s a hard ask for your family, show up after mealtime. Or bring food that is a better fit for your loved one. If sweets are an issue, leave before dessert.
Food for Santa
Why would we put so much effort into managing and securing food and then leave out a plate of cookies? It may be time to reframe the narrative for your household. Santa gets cookies in many places; he’s trying to be healthier so we can skip the snacks. Leave him something else to show your gratitude. Some families leave carrots for reindeer. More than cookies, Santa loves cards and drawings that he can take back to the North Pole.
Create Your Own
Create rituals and traditions for your own gathering. You can still do something unique and memorable if it’s just you and your loved one at home. Where more than one gather, right? Game night, a special meal, decorating, or doing crafts are some options. Pick a favorite holiday movie and set up a special viewing zone. If you live in a temperate enough climate, create the tradition of a fun holiday hike or walk through a neighborhood decorated in festive lights.
Host Non-Food Events
While cookie decorating and building gingerbread houses are popular activities, they are but a few in a sea of many. Pinterest alone is an explosion of holiday craft ideas. Invite your family and friends over for a holiday craft night. Rather than a food potluck, encourage people to bring a project with supplies and enjoy creating and gathering without the stress of food.
Caroling is also a beloved, holiday tradition and non-food holiday activity. Whether you have a musician friend who can play an instrument or a Spotify playlist to sing along to, holiday karaoke could be the next big family gathering.
Scrap the Expectations and Make New Traditions
Tradition is “the transmission of customs or beliefs from generation to generation or the fact of being passed on in this way.” Sure, many of us love to adhere to the traditions that were passed on to us. But they may be traditions that do not serve our family anymore. Remember that a tradition was once started somewhere, by someone. It might be time to start making new ones.
On this journey with PWS, we have to make many adjustments for the health and safety of our loved ones. Extending these adjustments to the holiday season may seem challenging or dampen the holiday spirit. This is a time of year when we may feel burdened by our own expectations or the expectations of family. We can wallow in our disappointments or unhealthy expectations, or we can recognize that sometimes life calls for us to adjust to the path that we are on. This time of year is just another series of moments, and we can decide how we arrive.
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.