TIP of the WEEK: Getting Stuck

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.

Submitted by:
Patrice Carroll
Manager of PWS Services

Related Posts: 
Tip of the Week: Rumination
Sensory Integration 
Reasons Behind the Behavior 

 

“He that can have patience can have what he will.” 

 ~Benjamin Franklin

TIP of the WEEK: At the End of the Day

As staff people, teachers, medical professionals and family members we know that working and living with a person diagnosed with PWS can be challenging. We hit our pillows every night exhausted, not knowing if our interventions are helping as much as we would like them to, confused by behaviors and reactions that seem to change so frequently. But imagine being the person with PWS. Imagine not just the hunger,  but the fear and confusion that they feel everyday. Poor executive function does not allow them to organize their environment, let alone their thoughts; underdeveloped social skills make every new encounter a mystery, and lack of sensory integration makes them unsteady, uncomfortable and hyper sensitive to sound, touch, light and balance. So when we see these kids smiling, having fun and making friends, just imagine the strength and courage that takes. It is far more than I myself have. Their willingness to take risks, despite the challenges they face, has always been something that I have had endless respect for. The great successes that I have seen have been the fuel that has kept me searching for ways to improve their quality of life.

I have worked with a number of syndromes and disorders throughout my career but none have touched me in the way that PWS has. These kids are worth fighting for. So at the end of a long day, a day of tantrums and fighting, picking and shut downs- remind yourself what these kids face when they wake up in the morning. Try to think about how, even with everything that is stacked against them, that they try hard, they make us laugh, they care deeply for their friends and family, they are smart and sweet and loving, creative, courageous and ever so observant. To me, that is worth every long day, and at the end of that long day, if I am not exhausted, then I believe I am not working hard enough for the kids who give us so much in return.

Submitted by:
Patrice Carroll