For people who understand the ramifications of Prader-Willi Syndrome and what this horrible disorder does to families, it is hard to imagine using the words “peace of mind” and “PWS” in the same sentence. They do not go together! But, as parents, peace of mind is exactly what we are now experiencing. We never thought it would happen.
My husband, Dennis, and I are the parents of three biological children with Prader-Willi Syndrome. Yes…I said three. We have been told that we are the only family in the world with three children with PWS. Having one child with Prader-Willi Syndrome can present not only great challenges and great worry, but great heartbreak as well. Multiply those challenges, worry, and heartbreak by three. Perhaps doing so will give you some small clue as to what our family life involved before finding out about Prader-Willi Homes of Oconomowoc.
Right about now you are asking yourself: “How can a family have three children with PWS?” Let me explain. After having two premature children with some physical and neurological problems (yes, we did see two geneticists who did many tests and could not come up with a definitive diagnosis), we decided we would not have any more children. Surprise! Thirteen months after having our second child, I was pregnant with number three. We were worried and anxious about this pregnancy and talked with geneticists, pediatric neurologists and ob-gyn specialists. We were assured by all that chances of having a normal baby and pregnancy were 75%. Great odds I’d say. We took all the precautions, not knowing the disorder we were dealing with, and our third child was born three weeks early.
Long story short: We were tested for Prader-Willi Syndrome in 1989 and 1992, long after all three children were born, and the results were negative. The FISH test was tweaked and perfected in the late 1990’s, so we had the test done again in October of 2000. This time, results were positive: all three of our children had PWS. This was not a surprise to us– in our heart of hearts we knew this to be true. But, finally, we had a definitive diagnosis!
Although all three of our children have PWS, each of them presents unique needs and challenges because of this disorder. Our oldest child, Amanda, is extremely moody and very manipulative. Andrew, our middle child, deals with acute depression and, while a teen in a large high school, attempted suicide three times. Our youngest child, Adam, has anger management issues and oppositional defiant disorder. Challenges that make for an interesting day, don’t you think? Of course, add to these challenges the most commonly discussed PWS symptom, hyperphagia, and you can understand the stress level our family constantly faced!
Life was never dull at our house! During the day, keys to the pantry, fridge and freezer were tucked away safely down my bra. At night the keys went under my pillow. We resorted to a logging chain around our chest-type freezer in the garage because every lock and hasp had been broken. We have pictures of the multiple holes in the freezer to prove it! Sleep was only an option: I stayed awake constantly listening for the sounds of new and inventive ways our children would try to break locks or chains and get to food. Most nights I laid awake praying for strength to get all of us through the next day.
Then, through The Children’s Institute in Pittsburgh, PA., where our Andrew was being treated for PWS, we heard about Prader-Willi Homes of Oconomowoc. We made a visit to Oconomowoc and were amazed at the level of care, love, nurturing and opportunities being given to young people with PWS who were living there.
Andrew was the first of our three children to become a resident of Prader-Willi Homes of Oconomowoc. He was followed a year and a half later by his brother, Adam, and then our Amanda joined them in 2003. Was the transition easy for them and for us? No, lots of tears were shed. Any time children leave home it is difficult for all. Would I do it again, given the choice? Yes, absolutely! The positive changes that have taken place and continue to take place in our children are nothing short of miraculous!
Between the three of them, our children have lost over 460 pounds! I mention this amazing fact first, because it is the one most people are interested in. But there have been so many other significant, positive changes that we are grateful for. Our Andrew has not been hospitalized for depression and self-injurious behavior in over three and a half years. He has shown a greater increase in maturity, making decisions for positive change on his own. The words “mature,” “positive attitude” and “calming” are words used to now describe our Adam–the young man who did not have a short fuse; he had no fuse at all! And Adam is now working in the community and active in a large Lutheran church in town– something he is extremely proud of. Our Amanda has lost 166 pounds and continues to work and improve on her behaviors. She is so proud of the fact that she has gone from a size 32 to a size 14! These wonderful changes have taken place with the help of very experienced social workers, house staff, and medical personnel who understand Prader-Willi Syndrome and how it affects a person both behaviorally and physiologically.
What does peace of mind mean to us? It means that we can sleep at night, knowing that our children are now safe, healthy and happy. To our way of thinking, there is nowhere else our children could have found the health and success they are now experiencing. We truly believe that our children are still alive because of the knowledge and experience found at PWHO. We are so very grateful to the administrators, medical staff and house staff at Prader-Willi Homes of Oconomowoc who have given our children a chance to live long, healthy lives in an atmosphere of support and love. Peace of mind is a wonderful thing!