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A mother posted on Facebook recently that she’d let her son with Down syndrome choose between adapted and non-adapted activities in high school; it worked reasonably well, she said. We gave a similar choice to our son, who has Prader-Willi syndrome (PWS), 21 years ago. We all want…

I once wrote an essay called “The House of Questions.” In it, I shared questions my husband asks repeatedly, such as, “If you were me, which way would you drive home?” This might be hard for a spouse who didn’t have my superpower. After all, I raised a son with…

Preparing for my son Jake’s first year of high school stirs a complicated mix of pride, hope, and anxiety. Unlike most freshmen, he carries with him the weight — and the resilience — of navigating not one, but two genetic disorders: Prader-Willi syndrome and neurofibromatosis type 1. Every milestone…

Growing up in St. Paul, Minnesota, I was encircled by families with many children. We had action-packed fun and played games during summer vacation and after school. Our children, however, grew up differently. Early on, their neighborhood had no children, just older adults. Fortunately, my sister’s family moved next to…

The spiritual study program “A Course in Miracles” has interested me for years. Among other things, it encourages people to recognize the miracles in everyday situations. I’ve had some experience with such miracles. Thanks to new genetic testing methods, Prader-Willi syndrome can now be diagnosed right…

Thinking about potential independence for my 15-year-old son, Jake, who has Prader-Willi syndrome (PWS), brings mixed emotions. He faces unique challenges, but he also has unique opportunities. It’s natural to feel both pride and apprehension when your child expresses desire to do things on their own — especially if…

Scoliosis is common among people with Prader-Willi syndrome (PWS). I am active in the PWS community and have seen multiple people with the syndrome whose bodies were severely compromised by scoliosis, or an abnormal curvature of the spine. In my experience, older people with PWS and scoliosis often…

While I was shopping with my grandson, he spotted a ball in the next aisle. Since we’d experienced incidents of balls thrown at other shoppers, I didn’t want a repeat. “No ball!” I said. That provoked a tantrum. Throwing himself on the floor, my grandson began to scream and cry.

I’m a woman of a certain age, and self-care was never mentioned in my younger years. Today, thankfully, there’s considerably more information about this important concept, and we women should take note. After all, we typically have two jobs: working outside the home and handling the bulk of a home’s…

School is out, and thoughts of summer travel and making family memories are here! Our family has always enjoyed traveling, which is reflected in one of our favorite quotes attributed to St. Augustine: ​​”The world is a book, and those who do not travel read only one page.”  …