How Prader-Willi families can enjoy the holiday season
With the right tools, celebrations can be more magical than stressful
The Christmas season has always been my favorite time of year. I treasure memories of going to the homes of my grandparents and great-grandparents, large family gatherings, the big “box bash” on Christmas Eve, the smell of freshly baked treats, and anticipating the day I could move up to the “A” (adult) table.
Fast forward to what the magic of the season looks like now. While Christmas is still my favorite holiday, raising a child with Prader-Willi syndrome (PWS) during this season often feels like walking through a sparkling minefield made of food, expectations, and other people’s good intentions. Yet tucked amid all that tension are real moments of joy, connection, and hope that carry our family through.
Most holiday gatherings come with an unspoken promise: There will be more than enough to eat. However, for individuals with PWS, the very idea of “more than enough” isn’t festive; it’s dangerous. One of the symptoms of PWS is that the brain’s fullness signal is impaired, meaning people with the condition may not feel satisfied or recognize when to stop. Overeating can quickly become a medical emergency rather than an indulgence.
Parents learn that ordinary gatherings — holiday parties, cousins’ sleepovers, seasonal celebrations — can be filled with worry. Every unattended plate or open pantry could become a threat. While others see abundance, caregivers spend time planning, organizing, and running through checklists that would challenge even the best efforts of Santa and his elves. They often see risk, and constant vigilance can be exhausting in a season built around grazing and “just one more treat.”
PWS families are encouraged to plan for the holidays, including creating clear food plans. Knowing what and how much will be served, when, and even who will be watching helps create structure and predictability. These aren’t just preferences; they are tools to lower anxiety, prevent behavior escalations, and make space for real enjoyment.
In our house, we try to balance planning with reality. We allow our son to enjoy a few treats (closely monitored), and we try not to talk about what he can’t eat in front of him. We also start out with small portion sizes so that he can have seconds. This is what works for our family; you will find what works for yours!
Grief tucked into the garland
Yet even with the best planning, there can be a quiet grief that threads through the lights and ornaments. You may mourn the ease you imagined — letting kids roam the dessert table, saying yes to spontaneous hot cocoa stops, or attending every party without calculation. Even positive changes, like special outings, can be stressful for a child with PWS who may rely heavily on routine and predictability to feel safe.
That grief is real and valid. It does not mean a parent is ungrateful or failing; it simply reflects how much love you carry, and how different your reality is from the story most of the world tells about family holidays.
Redefining what makes it magical
Over time, many families begin to gently rewrite the script. Instead of centering the day around a big meal that stretches from breakfast through dinner and dessert, they build it around food‑free traditions: board games, art projects, holiday walks, and car rides to see neighborhood lights.
In this different kind of Christmas, joy often shows up in quieter places. It might be sitting on the couch listening to Christmas music while putting together a puzzle, the relief a parent feels when a grandparent locks up the extra treats without being asked, or a teacher sending home a note describing how classmates helped keep the environment safe.
When food is managed and expectations are realistic, holidays can become not only possible but truly meaningful. Some of our happiest memories from the last 15 years are being gathered around the kitchen table — not eating, but connecting with family while playing games. It is such a joy to see our son’s competitive nature come out with a good game of Uno or Left, Center, Right (playing for lotto tickets)!
A message to families just starting out
For families just starting the PWS journey, the holiday season can feel overwhelming, but you are not alone. Organizations such as the Prader-Willi Syndrome Association | USA and the Foundation for Prader-Willi Research offer practical tips for holidays. Many caregivers have walked this path ahead of you and found ways to make the season meaningful and safe.
Your holiday doesn’t have to look like anyone else’s to be beautiful. With planning, clear boundaries, and a focus on moments rather than menus, your child can experience the wonder of the season, and your family can build wonderful traditions. It truly is the most magical time of the year.
Wishing you and your family a very happy and healthy holiday season!
Note: Prader-Willi Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Prader-Willi Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Prader-Willi syndrome.
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