Columns

Riding the emotional roller coaster of caring for my son with PWS

There are days, sometimes even weeks, when life as a caregiver for my 15-year-old son, Jake, feels almost normal. Our routines are established. His medications are working, and his therapies are consistent. Most importantly, he’s managing the symptoms of his two rare genetic disorders, Prader-Willi syndrome and neurofibromatosis…

Helping children with PWS navigate their school systems

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…

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.