“Prader-Willi syndrome—what’s that?” I asked, as most people do, when I first met my husband, Al. At that time he was raising his 6-year-old daughter Sarah and 7-year-old son Matt, who has the syndrome. As a social worker who raised three children of my own, I thought I knew a lot about child rearing. However, as my relationship with Al grew, I decided to research PWS before making a commitment to marriage. Although I read some articles dealing with the syndrome’s diagnosis and physical aspects, I discovered that the realities and impact of Prader-Willi syndrome (PWS) could not be comprehended until I actually lived with it. Seven years have gone by and we have survived as individuals and as a family despite the frustrations and tears associated with Matt’s diet restrictions and behavior problems. In fact, we have done more than survive; we have loved and laughed and grown a lot. How have we endured? What have we done? Well, our solutions will not guarantee complete success nor do they “follow the book” on discipline, but they represent our point of view about living with a child with PWS. If some of the commentary seems disjointed, it’s probably because, from time to time, so are our lives.
KeywordsBehavior Problem Dinner Table Christmas Card Local Health Club Survival Tactic
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