Columns

Finding friends is challenging for those with Prader-Willi syndrome

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…

A look back at the everyday miracles of our journey

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…

How we foster independence in our son with Prader-Willi syndrome

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…

My son’s experience with scoliosis and Prader-Willi syndrome

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…

How our son’s Prader-Willi meltdowns affected family life

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.

Why I made myself a priority, despite my son’s PWS

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…

Detailed planning is key to pursuing our joy of traveling

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.”  …

Choosing happiness in life with Prader-Willi syndrome

We all have struggles in our lives, some more than others. As an older mother, wife, and grandma (known as “G-Honey”), I can’t believe the beautiful life I’ve been given. My younger years were filled with chaos. Both of my parents were alcoholics and many surrounding relatives used one substance…