July 1, 2013

There is no way I can ever truly comprehend the constant challenges faced by people with PWS. I imagine every-time families hear “I know just what you mean” from someone not walking in their shoes, no matter how well-meaning, must drive one crazy. I can leave my job after a long day at the office. You can’t leave PWS when it resides in your family unit.

Right now however, I am a mess. I am sensory and environmentally triggered. I have poison ivy all over my face and I want so badly to scratch it for immediate relief that it is all I can think about. I am so itchy and uncomfortable inside of my own skin!  I need to keep my hands busy, my mind engaged in problem-solving and steroids in my system to combat the swelling. This is awful. I tell myself that this too shall pass and in a few more days it will be all done. But it is overwhelming me. For just a brief moment in time, a little window has opened and I try to imagine what this compelling urge must be like to live with on a daily basis. So thank you to all the families and care givers out there who, day in and day out, engage people in experiences and activities that override the small & large urges! Now, pass me the calamine lotion please.

Submitted by:
Chris Gallant

Related Posts:
What to do About Sensory Overload
Tip of the Week: Sensory Integration
Self Injurious Behaviors

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