Choosing Happiness — Janet Favorite

Janet Favorite is a longtime resident of St. Paul, Minnesota. Her memoir, “Raising Robert,” was written as a guide for new parents of children with special needs, and it includes the story of her son’s experience with mental illness. Janet swims often and boasts of having gone swimming in two Great Lakes, three oceans, three seas, and several cold Minnesota lakes. She feels her outdoor adventures replenish her spiritual energy, enabling her to cope with life’s challenges. You can find her at Janet-Favorite.com.

Avoiding meltdowns during the holidays with Prader-Willi syndrome

The holidays can add an extra layer of stress to life with Prader-Willi syndrome. Routines and consistency are important, as they can help to reduce anxiety and prevent meltdowns. But during the holidays, routines change, and many of us gather with friends and relatives. The children or young adults…

We struggled to find mental health support for our son with PWS

Few things scare a parent more than the possibility of their child becoming mentally ill. If there is a history of mental illness in the family, an observant parent will be worried and watchful for signs. When our son, Robert, was born with Prader-Willi syndrome 35 years ago, we…

How parenting and caregiving have changed since we began

It has been 37 years since our son, Robert, was born with Prader-Willi syndrome. During his time in the neonatal intensive care unit, my husband, Carey, was a devoted father. He organized care for our 6-year-old daughter, visited the hospital regularly, and supported me following a difficult birth. It…

My son’s first PWS camping trip was a success

On Sept. 16, 18 adults with Prader-Willi syndrome (PWS) arrived at Camp Knutson, including my adult son, Robert. The camp is located in Crosslake, Minnesota, between Big Trout Lake and Lower Whitefish Lake. Tall pines surround the rolling meadows, and the scent of the trees isn’t easily forgotten. Several…

How hyperphagia affects patients and their families

“Hyperphagia,” or the extreme drive to consume food, is a sizable word that is difficult for me to pronounce. It is a symptom of Prader-Willi syndrome (PWS), which my adult son, Robert, has. In people with PWS, the hypothalamus, a brain structure that regulates several bodily functions, including…

A group home has benefited my son with Prader-Willi syndrome

When Robert, my son with Prader-Willi syndrome (PWS), was small, any mention of group homes would cause my stomach to clench in fear. What would the future hold for our darling little boy? Group home living seemed limiting. We hoped our son would at least receive a college…

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…

Learning to cope with obsessive behavior in Prader-Willi syndrome

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…

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…

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