Posts Tagged ‘Understanding Prader-Willi Syndrome’
Tip of the Week: In his words
Dylan asked to be featured in this week’s tip so he could help other students living with PWS who may be struggling. Dylan is a student who has grown more than I had ever hoped in the past few years. He is compassionate, loving, full of life, and always willing to help out a friend.…
Read MoreTip of the Week: More about gastroparesis
Last week’s tip on gastroparesis touched upon a particularly important topic for the PWS community. Gastroparesis causes your stomach to empty much more slowly than it should. Once diagnosed, it is important to stay vigilant so that it does not reoccur. Some ways to help your child’s GI system stay on track include: 1. Eat…
Read MoreTip of the Week: Gastroparesis
People with Prader-Willi syndrome have different GI systems than a typical person. Where food that we eat is processed and moved through our stomach in a matter of a few hours, sometimes in the person with PWS this process takes far longer. This is called slow gastric motility. When someone has slow gastric motility, it can cause…
Read MoreTip of the Week: Turn off the news
This week has been difficult for many people in our country. You cannot escape the news, video clips, and sound bites that have taken over our televisions and social media. Individuals with PWS pay close attention to what we say, what we listen to, and are keenly tuned in to the feelings and stress levels…
Read MoreTip of the Week: Don’t tell me no
Andy is a 16-year-old boy in our Children’s Services program. When he was asked what advice he would give to people working with him, he said,“Don’t tell me no.” There are so many restrictions placed on people with Prader-Willi syndrome in the name of safety that sometimes we forget how often we say – either…
Read MoreTip of the Week: Difficult decisions: considering a residential placement
For parents of a child with Prader-Willi syndrome and other diagnoses, the decision to place the child in a residential setting can be a heart wrenching and confusing process. No one wants to have to make the decision, but when your child is struggling at home or at school to the point where their quality…
Read MoreTIP of the WEEK: Summertime fruity recipes
Warmer temperatures are expected this week – these cool, tasty summer treats will help to beat the heat. Frozen Fruit Tart: A light but refreshing treat Buy or make a graham cracker crust. In a 9-inch pan, bake crust for 10 minutes. While the crust is baking, let light or sugar-free vanilla ice cream…
Read MoreTIP of the WEEK: Pick Sites
Living with pick sites is a way of life for many families of children with PWS. We all feel the same dread when we see a new bug bite, rash, or cut because we know what is to come. Once a pick site begins the only way for it to heal is by leaving it…
Read MoreTIP of the WEEK: Through Their Eyes
Matt has been in our adult program for several years. He tells me: “If something in my schedule needs to change tell me as soon as you can… I might still get upset but if I have time to get used to it then it won’t be as bad. If you tell me right before…
Read MoreTIP of the WEEK: Through Their Eyes
This week’s tip is brought to you by Evan, age 21. “When I’m upset don’t tell me that I’m ok because I’m not. Talk to me about things that I like. Let me be upset and don’t talk to me a lot.” What Evan is describing is exactly right! Validate, attempt to distract, and honor…
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