Summertime with PWS means sun, fun, and structure
We're determined not to let the season only be about managing PWS
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Summer always used to sound so simple to me. It meant slower mornings, later bedtimes, popsicles on the porch, and playing outside until the sun went down. Now that I’m the parent of a child with Prader-Willi syndrome (PWS), summer isn’t so much this idyllic setting, but rather a time for carefully thought-out transition.
When school ends, so much of the structure and everything included in our son Jake’s individualized education program disappear overnight. Therapies built into the school day, predictable routines, and academic support teams suddenly pause. Yet, children with PWS are often at their best when life is predictable and well supported.
That is why, in our family, summer still includes therapy appointments with an increased focus on exercise and tutoring sessions. They’re not meant to crowd out the joy but rather protect the progress Jake has worked so hard to make throughout the year. Still, it can feel bittersweet to watch the world lean into time off while we are carefully color-coding calendars and making reward charts to keep Jake motivated to continue learning.
So what does summer fun look like for us?
At the same time, summer should still feel like summer. We’re determined not to let the season be only about managing PWS and all of its nuances. Our son deserves to create memories that feel like sunshine, not just schedules.
Over the years, we’ve had to let go of the idea of a typical school break and build a season that truly fits our son. That means having a gentle routine in place while making space for joy, creativity, movement, and connection.
Sometimes it’s a simple thing, like spending time at the pool, playing with the neighbors, walking our family dog, relaxing with an art project, or building Legos at the kitchen table. We make time to travel to our favorite spot in the mountains, where we hike and enjoy all that nature has to offer. Jake and my husband also try to fit in at least one week of scout camp, which is always a highlight.
Scouting has been an amazing opportunity for Jake because it gives him a place where structure, belonging, and real accomplishment all come together. He has grown so much through this experience and is on his way to earning his Eagle Scout rank!
If you peek into our summer, you’ll still see the therapy sessions, visual schedules, and time carved out for tutoring. You’ll also see laughter outdoors, basketball in the driveway, time with family, and some screen time with Jake’s iPad. This season has taught me that joy and support don’t have to compete with each other. Our son can require tutoring and still have a magical summer.
Our summer may not look like the carefree version I once imagined, but it is ours — carefully built, fiercely loved, and full of small, hard-fought joys that shine all the brighter because of what it takes to make them possible.
I’d love to hear from you in the comments below about your family’s summertime tips. Here’s to wishing you all a joyful and restful summer!
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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