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Cousins at Christmas: Opening the Conversation of Your Child’s Special Needs

The holidays are almost upon us! For a lot of us, that means spending extra time with extended family. In my case, my three siblings, their families and my family are all converging upon my parents’ house in Colorado. This should be a point of excitement and joy. And, for the most part, it is! […]

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Oklahoma 22nd Annual State Conference

This 22nd annual conference is an opportunity for our PWS community to come together for fellowship, education and fun. Topics include IEPs, Guardianship/Trusts/Wills, Department of Human Services resources and a panel of PW moms. Volunteers with the Bricktown Rotary will escort our PWS individuals through the Orr Family Farm during the conference. Please Click Here […]

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He’s Still Henry- Our Prader-Willi Syndrome Story

One night last week, I had a moment where, for the first time in his 18 months of life, I thought, “I wish Henry didn’t have to have Prader-Willi Syndrome.” It was a guilty thought, and was accompanied by more than a few tears. I’m not sure if they were tired tears, third-trimester tears or […]

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Diagnoses and characteristics of autism spectrum disorders in children with Prader-Willi syndrome

Many individuals with PWS have behaviors and tendencies that are like those seen in autism spectrum disorders (ASD). Repeating questions, the need for “sameness”, and repetitive behaviors – these things are so common in PWS and in autism.  The relationship between PWS and autism was researched recently by the PWS experts at the Vanderbilt Kennedy […]

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Who’s Harder To Raise Boys or Girls?

By Diane Seely, New Parent Support Coordinator Snips and snails and puppy dog tails… sugar and spice and everything nice… Parenting is hard work. It’s heart wrenching, overwhelming and joyful all at once. Lately I’ve been pondering whether raising a son with Prader-Willi Syndrome is more difficult than raising a daughter with PWS? The frustration […]

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Grandparents of Prader-Willi Syndrome Children

I came to be the grandmother of a child with Prader-Willi Syndrome through marriage, and little did I know at the time what a special grandson Reagan was going to be.  When I look at him, I do not see a child with PWS, but rather I see Reagan, a very special young man. I […]

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TOO DARN HOT!

by Kathy Clark, Medical Coordinator Body temperature regulation is a challenge for people with PWS. They can easily become overheated, especially during infancy and childhood. Here are some great ideas to help you be safe when the thermometer rises. Outdoor activities should be planned for the cooler mornings, rather than sunny afternoons or the heat […]

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Ask The Dietitian

Announcing the very first installment in our “Ask the Dietitian” series!! In this blog series, Hannah Stahmer, Registered dietitian at the University of Florida answers your questions about feeding your child with PWS! Would you like to see your question answered in an upcoming installment? Log into Facebook ,visit https://www.facebook.com/Prader-Willi-Syndrome-Association-Ask-the-Dietitian-343199949408216/ , and ask your question […]

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