TIP of the WEEK: Getting Stuck

November 1, 2013


So many of the more common behavioral challenges we experience with PWS are stemmed from the issue of “getting stuck.” Shut downs, perseveration of thoughts, repetitive questions, concrete thinking and an overall stubborn presentation can all be put into this category. Although these behaviors can be extremely frustrating it can be helpful to remember that they are an attempt to manage their environment and not done to intentionally thwart the days plans. Here are some ways to lessen the frequency and severity of the “stuck” behaviors.
  • 1. Check the environment. Is it too bright, loud, chaotic or not stimulating enough? Often times we see shut downs or repetitive thoughts or actions when children or adults with PWS feel out of control and that more often than not comes from an immediate environment that does not meet their needs.
  • 2. Write down as much as possible. Repetitive question asking is on the top 5 of behaviors that I am asked to help with. This behavior can be extremely frustrating and off putting but is the result of not feeling secure with their schedule, especially if there is a new activity planned. Writing down the answers to questions can be very helpful if there is a known change coming up. Some of our kids ask the same questions regardless of a change in the schedule so these answers can be written down and referred to year round. I suggest laminating the paper to avoid it being ripped or crumpled.
  • 3. Stubborn behavior can be misinterpreted as willful and intentional but that is not often the case. A stubborn presentation is likely the result of feeling overwhelmed and needing to create some control. Our kids can typically do more than we give them credit for, offer as many choices as possible to allow them to have that control and begin to learn effective decision making skills.
This category of behaviors can test the patience of the calmest person but try to remember that the more control the person with PWS has on their environment, schedule and day to day life, the less we see these behaviors. The more predictable the schedule, the less anxiety you will see and ultimately you will experience less unwanted behaviors. As always stay calm, keep your sense of humor and remember to reach out for help when you need it.


Patrice Carroll is Latham Centers’ world-renowned Prader-Willi Syndrome specialist. She works with Latham Centers’ residents with PWS, their families and consultants, continuously learning and teaching about PWS best practices. 

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