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Practical Tips for Behavior Intervention At Home

In this webinar, Cindy Szapacs shares practical tips for managing PWS related behaviors 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:

Top 10 list for living with PWS during Covid-19

10. Have a plan.

  • The simpler, the better.

  • Modify your current plan to meet the new needs.

  • If you don't have a current plan, consider creating one. 

9. Accept what we can and cannot control.

  • We can control environment, we cannot control behavior.

  • BUT, we can influence behavior by manipulating the environment

8. Be realistic.

  • Start Small

  • Go Slow

7. During this time, expect behavior to get worse or 'old habits' to return.

6. Do Not Accept 'No!'

5. Make Activities and expectations as visual as possible.

  • Use visual supports to help with consistency and decrease arguing.
  • Use visual schedules to increase independence and compliance.

4. Use the individuals unique interests to make things fun.

3. Stay consistent. Set Limits and stick to them.

2. Give yourself a break.

1. Respect the PWS!


Behavior Has A Reason!

  • Gain attention – ANY type of attention (praise, reprimand, facial expression, etc.)
  • Access tangible item
  • Access sensory stimulation
  • Escape demand, person, activity, situation (including escaping feelings/internal sensations of anxiety)


Positive Reinforcement Systems

  • Should be portable, flexible and easily seen by individual (“reminder”)
  • Clearly define what is expected
  • Start small and increase expectations
  • Immediate rewards will be more effective than delayed. May be able to add in delay over time. If system decreases effectiveness as you increase time/demand, move back to previous successful system.
  • Choose a system and consequences that can be implemented feasibly.
  • Get creative with rewards! Use your child’s restrictive interests or social personality.


Topics: Research

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.