Many main-stream winter holiday traditions fall short of being “PWS-friendly.” From leaving cookies for Santa and hot cocoa after ice skating to gingerbread houses and deep-fried latkes, it can be challenging for some families to adapt these traditions to fit the needs of Prader-Willi syndrome. Sometimes traditions simply need some small changes, and others may need to be discarded for new ones entirely. We’ve asked our staff and volunteers to share with us some of the “PWS-friendly” holiday traditions that help them celebrate this season safely.
Staff / Volunteer Adaptations:
“When I was a kid, we left cookies and milk for Santa, nuts for the reindeer, and looked forward to a stocking full of candy on Christmas morning. Knowing PWS’s impact on our son, we decided to make a few adaptations designed to remove anxiety-raising food temptations while promoting a good night’s sleep.
So instead of cookies for Santa, our son proudly left Santa a drawing or a hand-written note along with his school photo. Instead of candy canes and chocolates, we filled his stocking with age-appropriate trinkets – stickers, pencils, crayons, pens, Silly-Putty, cards, Slinkys, cards, bouncy balls – fun stuff!
When he was a little boy, we took him outside just before bedtime to search the skies for Rudolph’s nose, and then we’d hustle into bed where we would read to him, The Night Before Christmas. He’s a young man now, but on Christmas Eve we still walk outside to look up at the night sky, each of us playfully pointing to the red light that really is Rudolph’s nose. Maybe most heartwarming of all, though, is the fact that our son now enjoys reading the same beautifully illustrated The Night Before Christmas book to us!
A few slight tweaks to some old-time traditions have helped us protect the magic of Christmas – and him!” – Lisa Graziano, mom to Cameron
We go to Barnes & Noble every year to donate a book to their CHLA book drive, visit Disneyland to see the Christmas decorations and It’s A Small World holiday overlay, and go to Universal Studios to see the Grinchmas activities. Ryan gets to pick our Christmas tree every year, along with a new hallmark ornament. As I decorate the tree every year it’s fun to see his interests through the years. – Julie Casey, mom to Ryan
We focus on giving instead of getting by donating toys, making cards, and helping others. Shifting attention outward helps reduce fixation on gifts and treats. We also keep predictable schedules when we can- same gift giving routine, meal routines, etc. – Denise Servais, mom to Maya
I make my latkes in the air fryer (rather than deep fry) and I limit my daughter to ONE with a healthy serving of steamed veggies and brisket or roast chicken. I’ve also made them with SWEET potatoes rather than regular white potatoes. We also make UNSWEETENED apple sauce (tradition is to have them with apple sauce or sour cream). – Melanie Zalman, mom to Josephine
*Click here for Melanie’s air-fryer latke recipe
We love to do a special winter holiday-themed puzzle every year. It’s a nice way to spend time together and feels like a holiday activity, especially with holiday music on in the background. It doesn’t necessarily replace a tradition as we weren’t very big on those, but it certainly beats making gingerbread houses (something we tried once and was a disaster for many reasons). – Anne Fricke, mom to Freya
Other suggestions:
- *Use an advent calendar that offers something besides candy. Some options are charms and jewelry making supplies, fishing lures, mini-stuffed animals, different-colored putty, Legos, and more. Make your own as a fun craft project.
- *Make a “gingerbread” house out of cardboard and beads, Legos, building blogs, or shop for “alternative” gingerbread houses.
*Host a New Years Eve party at home so your child with PWS can go to bed while you celebrate with guests. You can be in control of the food, and your loved one can help plan the event.
*Include an after meal walk (in warmer climates) or family game of charades for some movement and distraction. This can be in place of dessert time and serves as a clear end to the holiday meal.
We know that adapting traditions is not the only obstacle to a safe and joyful holiday season. How to navigate gatherings with food, manage behavior issues with disrupted schedules, find ways to enjoy the holiday spirit with PWS can be challenging. For more valuable insight into how to navigate this time, please read our blog, Tips and Techniques for a Safe Holiday Season, using the button below.
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.