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Strategies for Managing PWS Related Behaviors During COVID-19

In this webinar, Patrice Carroll shares strategies for managing PWS related behaviors while stuck at home during the COVID-19 pandemic.

COVID-19 has made all of our homes feel a bit smaller these days... Living together 24/7 has surely whittled away at our patience and increased everyone's anxiety. In this webinar, Patrice Carroll, Director of PWS services at Latham Centers, gives advice on how to manage behavior challenges related to Prader-Willi syndrome during this stressful time and answers questions from our community members around the world. Download the slides here.


Presentation Outline:

Thriving In The New Normal:

  • Create a routine that works
  • Be kind to yourself
  • Actively look for the positives
  • Acknowledge sensory issues and make a calming space
  • Remember that your kids are trying to do their best- move the things out of the way that make it hard to have a good day
  • Don’t force your agenda, it’s ok if the plan for the day has to change/routines are only helpful if they’re helpful

Educating At Home

  • Do not try to be teacher of the year
  • Use what they already like
  • Communicate your ideas with their teachers
  • It’s ok to stick to review
  • Set your own expectations, not someone else’s
  • Learning will happen naturally, be flexible

Emotional Health

  • Praise frequently, Ignore what you can.
  • Take care of yourself
  • Be realistic
  • End goal = raise self esteem and lower anxiety

When Things Don't Go As Planned

  • Do not compare yourself to others
  • It’s ok to give up for the day. You can try again tomorrow
  • Have a safe space for the rest of the family
  • If it’s not working, stop doing it even if it works for everyone else

Susan Hedstrom


Susan Hedstrom is the Executive Director for the Foundation for Prader-Willi Research. Passionate about finding treatments for PWS, Susan joined FPWR in 2009 shortly after her son, Jayden, was diagnosed with Prader-Willi Syndrome. Rather than accepting PWS as it has been defined, Susan has chosen to work with a team of pro-active and tireless individuals to accelerate PWS research in order to change the future of PWS. Inspired by her first FPWR conference and the team of researchers that were working to find answers for the syndrome, she joined the FPWR team in 2010 and led the development of the One SMALL Step walk program. Under Susan’s leadership, over $15 million has been raised for PWS related research.