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Acceptance and Commitment Training for PWS Parents [2020 CONFERENCE VIDEO]

Build and effectively improve your skills for living with greater awareness, openness, and engagement as a PWS parent with Dr. Forster and Dr. Libman.

In this 90‑minute workshop, Drs. Janice Forster and Stuart Libman provide Acceptance and Commitment Training (ACT) to help PWS parents build skills for living with greater awareness, openness, and engagement in valued life pursuits. The session includes Q&A from participants in the 2020 FPWR Virtual Conference.

Click below to watch the video. If you're short on time, scroll down for timestamps to find the portions you're most interested in.


Presentation Summary With Timestamps

1:00 Melisa Demand introduces Dr. Janice Forster

  • Janice Forster, MD is a child and adolescent psychiatrist in private practice in Pittsburgh, PA who specializes in developmental neuropsychiatry. 
  • She has over 25 years of clinical experience in the evaluation and treatment of individuals with developmental disabilities.
  • She’s also served as a psychiatric consultant in an in‑patient rehabilitation program, in which she evaluated over 250 individuals with Prader‑Willi Syndrome.

2:00 Dr. Forster introduces Dr. Libman

  • Dr. Libman’s early work started as a faculty member of Western Pennsylvania Family Center and then as medical director for a program called PLEA, which provided an array of services including: a preschool for young children with language delays who were at risk for developing autism, a school‑based partial hospital program with older children and adolescents who had severe emotional and behavioral problems and family‑based community services.
  • The PLEA program integrated Applied Behavioral Analysis (ABA) and teaching methods in the classroom while supporting parents through similar interventions in home‑based services.
  • He developed a natural progression from ABA to Acceptance and Commitment Training (ACT) in a multidimensional framework.
  • ACT is a method that is used worldwide and embraces mindfulness at its core, and teaches using a set of skills that leads to psychological flexibility.

5:17 Dr. Libman presents ACTing in Prader‑Willi Syndrome: Acceptance and Commitment Training for Enhancing Parental Skills

About ACT:

  • Introduction and practice learning of the ACT Matrix, a tool which can be used for training our abilities to parent with increasing Psychological flexibility, which in turn consists of three main skills sets: awareness, engagement and openness.
  • Psychological flexibility is a behavioral process of determining, implementing and making warranted changes to sustain a valued course of action, especially under challenging circumstances. It’s been successfully used in a variety of settings such as sports and business, but in this session, it’ll be focused on developing skills we have and can improve as parents.
  • FPWR is currently carrying out a pilot project, Parenting with Psychological Flexibility, which has a four‑online‑session sequence.

12:20 The ACT Matrix is placed on two aspects: behavior and direction.

  • The behavior axis: ranges from outer behavior on one side to “inner” behavior on the other side of the spectrum. The direction axis ranges from “towards” to “away.”
  • Parents care about things in life that are important to them (VALUING), and they also find that there are things that show up and get in the way of caring (DISTRESSING) such as feelings, judgements, and stories.
  • The things that parents do to move away from their distress (AVOIDING) are coping mechanisms such as procrastination, yelling, blame, punish, etc. 
  • Parents can spend time together, attend to health issues, and provide support in order to move towards who or what matters to them—even with distress (ENGAGING).

20:00 Parenting with psychological flexibility

  • When recalling a memorable event or memory from a previous year, it can be helpful to use the ACT Matrix.
  • Dr. Libman shows a video of the ACT Matrix created for a business setting.
  • Awareness is one of the three main skill sets of psychological flexibility, which is placed in the middle of the ACT Matrix. Awareness is to notice what is happening in our inner and outer worlds, and to be mindful of them. Two ways to practice awareness are through breathing and listening exercises; here is a live example of how to do these. 
  • The second skill of psychological flexibility is openness, which is our increasing ability to weather thoughts and feelings and to be open to external challenges and internal distress. It’s located on the left side of the ACT Matrix.
  • The final skill is engagement, which is the ability to do what matters, even when we’re being challenged externally and internally. It’s located on the right side of the ACT Matrix.

52:00 Dr. Libman gives an example of parenting with psychological flexibility

  • Thought traps can start when something happens and we react and tell ourselves a story, leaving us stuck in our lower left quadrants of the ACT Matrix.
  • After noticing an issue that gets you “hooked” in this thought trap, 
    • Assess: What are your emotional and physical reactions? (lower left quarter)
    • Behave: What are your favorite “away” moves? (upper left quarter)
    • Consider: How you might effectively “engage” the issue? (upper right quarter)
    • Determine: “Who/what matters to you about this?” (lower right quarter)

1:13:00  Q&A

FPWR Enewsletter

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.