Caring for a child or adult with Prader-Willi syndrome (PWS) often means juggling medical appointments, behavior plans, daily routines, and the emotional ups and downs that come with them. Too often, caregivers put their own needs last — not because they don’t matter, but because time, energy, and focus feel limited.
But research is clear. Your well-being matters just as much as your child’s.
Multiple studies by Dr. Elisabeth Dykens, a clinical psychologist and leading researcher of rare genetic syndromes at Vanderbilt University, reinforce this truth. Dr. Dykens has spent decades studying PWS behaviors, caregiver stress, and strategies that strengthen emotional health for the entire family. Her work consistently shows that when caregivers prioritize their own mental and physical health, their children cope better, behave better, and experience more emotional stability.
She often reminds parents of the familiar airline message: you must put on your own oxygen mask before helping your child. Children with PWS are especially attuned to the emotional states of the adults around them, and they take their cues from us. When caregivers feel calmer, more supported, and more regulated, our children benefit in measurable ways.
So how do you “put on your oxygen mask” in a real, practical way?
Actions You Can Take to Put Your Oxygen Mask On First
1. Practice Gratitude (Even in Hard Moments)
If you and your loved ones are healthy today, take a moment to acknowledge it. Gratitude does not erase stress, but research shows it can shift your emotional baseline and help you cope more effectively. Small, daily reminders can make a difference.
2. Take Care of Your Body
Your physical health directly influences your emotional well-being. Small shifts can can have a big impact.
Try:
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Prioritizing sleep. Unplug 30 minutes before bed. Try a meditation app like CALM or Headspace.
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Managing nighttime worries. Set aside 10 minutes during the day to write down worry thoughts, then close the notebook.
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Eating to nourish. Notice when stress eating begins and redirect to a calming or busy task.
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Limiting alcohol. It may offer temporary relief, but often increases anxiety.
It’s okay if some days don’t go perfectly. What matters is the overall pattern.
3. Keep Moving
Movement is one of the most effective tools for reducing stress. It does not require a gym or a long workout. Even 10 to 15 minutes can improve mood, energy, and resilience.
You can try:
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Taking a walk or going for a run
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YouTube yoga or cardio videos
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An exercise app
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Turning on music and dancing for 15 to 20 minutes (kids often love this too!)
Consistent movement supports emotional regulation for you and often helps regulate your child as well.
4. Make Time for Something You Enjoy
One of the most overlooked forms of self-care is doing something you genuinely enjoy. Regularly engaging in pleasant, meaningful activities can:
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Reduce stress and anxiety
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Improve mood
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Boost motivation
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Buffer the effects of chronic caregiving strain
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Strengthen resilience
Enjoyment isn’t frivolous — it’s restorative. Even a few minutes of something you love that makes you feel like you can shift your whole day.
Try:
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Reading a chapter of a book
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Working on a hobby (crafting, music, gardening, puzzles)
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Listening to a favorite podcast
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Calling a friend who makes you laugh
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Spending time outdoors
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Cooking a meal you enjoy, just for you
These moments refill the emotional reserves that caregiving often drains. When you engage in activities that spark joy, you are not avoiding responsibilities. You are building the capacity to meet them.
Taking Care of Yourself Is Not Selfish. It Is Essential.
Caregivers are the emotional heartbeat of their families. Dr. Dykens’ research is clear: when caregivers receive support, rest, and compassion — and when they prioritize their own well-being — children with PWS benefit in measurable ways.
This isn’t about achieving perfect self-care. It’s about giving yourself the compassion, rest, and support you deserve.
If you’d like to dive deeper into the research behind caregiver well-being, we encourage you to watch a recorded presentation from Dr. Elisabeth Dykens’ where she highlights key findings from her work on caregiver stress and the need for self-care.
You give so much every day. Taking care of yourself is one of the most powerful gifts you can give to your child, your family, and yourself.
