Socializing for Adults with PWS During the Pandemic

One of the many areas impacted by COVID-19 virus has been the ability of adults with Prader-Willi syndrome (PWS) to socialize. As there are many studies that outline the emotional challenges and decline that social distancing is causing, it is important to explore and discuss opportunities for adults with PWS to create new social experiences and how they can be supported during these challenging times.

Currently, many adults with PWS are unable to go to school, work, or participate in a day program.  Special Olympics sporting activities have been canceled, activities that before served as a primary means of connecting and socializing with friends. Social distancing, masks, and no physical contact have also made it difficult to stay connected with family, friends, and community members.

I recently reached out to families and residential care providers of adults who have PWS to see what they are doing to address the need for socialization.

Here are creative ways adults with PWS are staying socially connected:

  • Going for walks and hikes in unpopulated areas where they can maintain social distance. Seeing people, even from afar, helps alleviate the sense of confinement. Walks also allow for saying “Hi!” to neighbors (and their puppies!).
  • Visiting a farm and picking strawberries.
  • Setting up occasional meetings with 1 friend at a time, maintaining social distance and wearing face coverings.
  • Working on special projects, including painting and building a fence.
  • Completing very complex jigsaw puzzles.
  • Caring for baby and adult chickens.
  • Hosting a “family movie night” once a week that included tickets and popcorn. (One residential provider used an inflatable outdoor movie screen for “outdoor movie time.” Another hosts weekly indoor movies and popcorn.)
  • Having regularly scheduled calls and meetings with family and friends via phone, Zoom, and Facetime.
  • Participating in PWSA | USA virtual social hours. (There have been 2 so far; One for individuals under 22 years of age, and one for those 22 years and older.)
  • Participating in a weekly Zoom video chat group for adults with PWS. (Sponsored by a state PWS chapter.)
  • Staying connected with friends and family on social media.
  • Having “special time” playing games with family members.
  • For those individuals still enrolled in school, participating in virtual classes.
  • Attending virtual clinical sessions and other appointments.
  • Utilizing videos or online classes, such as weekly Zumba classes, art classes, yoga classes, and a PEERS social skills group video training.
  • Attending Zoom calls wherein attendees shared a variety of activities, provided music by different artists, and spoke on several topics. (The staff at one day care center even did a drive around parade to people enrolled in their program.)

Meeting both the social and safety needs of adults with PWS can be challenging. But, by sharing information and ideas, we can continue to find ways to stay connected with our loved ones and each other.


Contributed by Barb Dorn

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