Avoiding meltdowns during the holidays with Prader-Willi syndrome
Abundant food, changes in routine can prompt anxiety for children
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The holidays can add an extra layer of stress to life with Prader-Willi syndrome. Routines and consistency are important, as they can help to reduce anxiety and prevent meltdowns. But during the holidays, routines change, and many of us gather with friends and relatives. The children or young adults may be off on their own.
Food can also be an issue during this season. While it can be challenging to ensure that babies with Prader-Willi receive adequate nourishment, children with the syndrome usually start experiencing hyperphagia — an insatiable appetite — around age 2 or 3, leading to rapid weight gain. For that reason, consistent meals and portion sizes are crucial, but this can be difficult to maintain during the holidays, when many of us indulge in treats and second servings.
Information about diet control in Prader-Willi has become more readily available since my son, Robert, was born 35 years ago. Many parents have found that giving their child a prepared plate of food works best. The child’s expectation is that this is all they will have.
But during the holidays, when many family members reach for second helpings, children with Prader-Willi may ask, “Why can’t I have that, too?” They notice anything food-related. I can tell you from experience that giving them a second portion is a bad idea. But denying them more food can lead to a meltdown, with the child screaming, “I want more, too!”
When Robert was younger, I worked several evenings a week, especially during the holidays, doing catering from our home. Idiotic, right? I was unaware that the food I was preparing caused my son anxiety.
I cooked excellent meals and often set aside a portion for our family’s dinner, even if the food was high in calories. Giving my family something extraordinary to eat assuaged my guilt about how busy I often was during the holidays, even if the meals weren’t in Robert’s best interest.
When Robert moved into his group home, Stepping Out, I learned how many mistakes I’d made. Meals, workouts, and portion sizes should be the same every week.
Navigating the holidays with Prader-Willi
If you’re attending a holiday gathering with a child with Prader-Willi, it’s a good idea to have a strategy in place beforehand. As parents, we wish we could trust our children not to sneak food, but we can’t. It’s distressing and sad, and it means we must remain vigilant — even if other partygoers view us as helicopter parents, always hovering.
It can be helpful for family members to take turns keeping an eye on the child with Prader-Willi. Limiting alcohol may also be smart, as drinking can make us more careless. I’ve also found that it helps to give our child small portions of appetizers right away, and to limit our time at the party. Everyone likes a guest who knows when to leave.
Prader-Willi families might focus on holiday activities in which food plays a minor role. Activities that involve exercise and the outdoors are particularly beneficial, as both can relieve stress and anxiety.
Distraction also works and is generally more effective than arguing with a person with Prader-Willi.
If you are exhausted trying to make the holidays perfect, know that I was once in your shoes. We are just so busy as parents, especially when our child has a rare disease. Everything feels as if it must be done immediately. Our children crave our attention, and meltdowns are one way of getting it.
Take a breath and try to enjoy this time with your children. Your anxiety about your child’s behaviors will one day fade. Now, Robert’s home visits during the holidays are kept short, usually lasting about two days. I still get the “puppy dog look” as he stares at the appetizers, but maintaining rules and boundaries prevents any meltdowns.
Happy holidays.
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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