Festivals, festivities and holidays form part of all cultures. Yet, for many reasons, they pose special challenges for people with PWS and their families. We asked a selection of parents from around the world for their advice on how best to manage during times of celebration. Here’s what they said:
Ask friends and relations not to bring or give food for ANYONE in your family if it involves them receiving it in person. Special treats or food to share should be given to you to distribute as and when the time is right. Avoid buffets where everyone helps themselves.
Don’t try to have a “perfect day” by going all out on the festivities to impress or please others. You will stress yourself and ultimately stress the person with PWS. Keep things in a lower key.
Jackie Gill, (formerly Jackie Waters), UK
If we visit friends over Christmas and other holiday occasions over the years I have learnt not to be shy to ask the host if I can pack away the tempting foods (usually pudding and desserts) as soon as everyone has eaten. I also try to bring activities for my daughter to do that are really engaging… which is easy on Christmas day as she has new gifts.
Karin Clarke, South Africa
The holidays are a precious moment of sharing and family coexistence but, in this particular period, they can be a source of stress due to forced coexistence.
Some simple tips could be:
- Structure a daily routine as much as possible
- Maintain a structure of life marked by timetables
- Maintain web contact with friends and relatives where possible
- Structure a time dedicated to daily physical activity
- Define moments of sharing and shifts between caregivers
- Involve children, based on age and skills, in domestic tasks This moment can be used to introduce children to the development of greater “autonomy” in house management
- Encourage children to read or listen to audio books
Andreina Comoretto, Italy
Try to not stress too much about overeating at Christmas, Thanksgiving and other celebrations. Everyone in the room is likely overeating! Just try and reduce a few calories in the days before and after. Perhaps arrive a little late as watching the pre-meal food preparation process could be quite challenging for your child. Hopefully the leftover food can be cleared away after the meal! If not, a walk is always good.
James O’Brien, Father and Chair, Prader-Willi Syndrome Australia
Usually at Christmas time and during end of the year parties the different buffets are for individuals with PWS a great challenge!
To avoid trouble I recommend preparing an appropriate extra buffet – served on an extra little table or tray with the name of the person with PWS on it – with food which is allowed. They are so happy to have their own food in a nice arrangement – and the food served is all for them! I find this leads to a particularly good experience and the sensation of satisfaction.
Verena Gutmann, Austria
Supporting individuals with PWS during the holidays means taking thoughtful consideration and action to minimize interfering behaviors and anxiety. When possible, removing environmental triggers, encouraging social connections, and encouraging engagement in meaningful activities are three notable ways to show support.
- Prepare the environment beforehand. Consider the smells and the food that may be left sitting out. This includes removing snack dishes and candy jars. Set out ground rules for portions and menu items before any holiday get together. Have a safety plan if things do not go as planned.
- Encourage FaceTime calls or Zoom meetings between loved ones. This can be used to start new traditions of crafting together or playing games.
Lynn Garrick, USA
We ask our friends and family not to buy sweets as a present.
Little cute stickers or drawing books, colourful pencils, pixi books and so on as a present!
When it comes to Christmas Dinner, we eat a dessert which all guests are amazed by: Baked Apple! Better than any sweets and really good fun to help with preparing and watching the oven for kids – a welcome activity to spend time together.
Our recipe advice: Be Creative!
We bake the Apples with “porridge” – oat flakes cooked with milk, then cut out apple pieces, mixed with ground almonds and cinnamon so that we do not need the sugar of the marzipan! A few nuts for decoration. Delicious! Enjoy!
Merry Christmas! Angelika Tomecki, Germany, who has 3 kids, a 5 year old (with PWS) and twins who are 2 years old (some of the family’s beautiful homemade decorations are pictured on the right).
Christmas time and Easter are two hard times for Prader-Willi parents.
These two holidays are all around food and sweets and hours spent around the table or the buffet….
As a mum of twins with PWS I had no choice: I had to be twice as careful as I could to make them (and us…) spend great and happy holidays.
My rules:
- First: no sugar, no chocolate, homemade only
- Secondly: visual is as important as taste
- Thirdly: always give them something to eat when other people have something to eat
- Fourth: being sure that what I prepare for them is what is best for them, being convinced of it to better convince them too 😊
Each Christmas, I put aside the small decorations that we find on the pastry logs and the papillotte papers. I look in the shops for pretty decorated plates, napkins and pretty glasses.
I choose different little surprises for the aperitif: cherry tomatoes, small seeds, almonds, homemade popcorn without oil nor sugar.
I also prepare sugar-free Christmas logs or even pretty verrines which allow Arthur and Antoine to also have a magnificent and delicious dessert (one of her desserts is pictured on the right).
And I finally prepare a multitude of small candies with the papillotte papers collected in previous years in which I place raisins, almonds, dried fruits, etc.
What is also essential is that everyone present is aware of their syndrome and involved, including the other children.
My twins are 10 years old and the holidays have always gone very well, without any frustration because they had surprises in their plates and everyone was playing the game 😊.
Caroline Richard, France, mother of 3 children, Romane, 13 years old and Antoine (pictured at the top) and Arthur, 10 year old twins both with PWS.
Holiday times are great. If you have a plan, holidays are a real benefit. Our plan is: get outside a few hours every day. Go for a walk. Tell somebody where you went. If somebody joins in: great. If not: no problem. Take the silent path. In a park. Along a creek. Watch birds. If you climb a hill: great. Enjoy sun, fog, rain or snow. Be at home in time and share your joy.
Stefanie and Hubert, Austria
Ignore what other people do and what you may have done in the past. Create your own traditions that work for your family.
My son does not like surprises and used to spend a lot of time worrying that his presents would not be what he expected. In recent years on any occasions when presents are involved we have given him his presents to “check” several weeks before the occasion. He is then very happy for them to be wrapped and put away until the date of the event.
Lastly, if everything seems to go wrong and the occasion does not meet your expectations, don’t worry. There will be other holidays and other special days.
Marguerite Hughes, Ireland
Best wishes and Happy Holidays from all of us at IPWSO!
