Living and Thriving with PWS


Being an advocate for individuals with PWS
Prader-Willi Syndrome is very similar to those with Autism in the fact that there is a broad spectrum that individuals fall into. Growing up I’ve received so many services that have given me the ability to thrive in all aspects of my life.  I began to realize entering 2nd grade that I am not the typical PWS individual because I fall on the higher end of the spectrum. Not only was I getting stronger physically but I noticed that I was capable of taking regular education classes. Entering high school I was taking regular classes and I only received extra help and resources twice a week.  I was given an hour to go in the special education department and receive help with assignments or anything else I may have needed for my classes.  I graduated with a high school diploma with a GPA of about 3.25 which put me in the top 30% of my class.
Does that mean that I’ve had no difficulties living with PWS? NO!!!  When I went to college that is where my life had gotten really challenging for me. I was separated from my parents for about a year and a half. I had gained 50lb over that short period of time and it was time to make drastic changes. I withdrew from college and was living with my grandparents for about 4 months.  I happened to gain another 50lb from this experience while I attended a community college. My parents decided it was time to find a residential program for me that could get me on the right track.
By the time we found Latham Centers I had gained another 40 lbs. You may be thinking, why bring this up?  Although I am not happy about the mistakes I’ve made, I have made a goal to improve it!! I was transferred here on Cape Cod into Latham Centers, Inc. Guess what happened? I lost over 142lb over the 3-4 years I’ve been here.  I became healthier but at the same time I was improving socially.  I’ve accomplished leaps and bounds of progress in my life that have given me awesome opportunities.
I became a role model for individuals with PWS, and was therefore handed responsibilities.  I had a job for about 6 months before I fell into a slump. Since then I have been working hard on improving in the areas I struggle with.  Why is this important to mention? I’m proud to say that new doors opened for me and I’ve begun to change my life for the better. I was asked to teach people about what it’s like to live with PWS.  Not only that, but I’ve been doing several other activities that have been promoting my success.  Although I’ve been through a lot, I’m honored to represent the Latham Community as an adult Living and Thriving with PWS!!!


*Living and Thriving with PWS is a monthly blog column by Derek M., a 24 year-old Latham adult resident with Prader-Willi Syndrome (PWS), who has resided on Cape Cod for over three years in a home managed by Latham Adult Services with fellow residents also diagnosed with PWS.

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