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

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