The PWS Playroom
In March of 2000 we were blessed with the birth of our beautiful son, Nicholas. At 7 weeks old Nicholas was diagnosed with Prader-Willi Syndrome (PWS). After learning the hows and whys of this complex syndrome (www.pwsausa.org) our first question was "What can we do to help him?" How I wish that while he was being fed through a g-tube, waking for only brief periods and missing those early milestones of reaching and smiling, that someone could have handed me a video of this very moment... Nick running around the backyard chasing grasshoppers and squealing with delight while his superman cape and pirate hat hold on for dear life! Getting from that day of diagnosis to now was not an easy journey but it has been filled with more wonderful moments than difficult ones and we have every reason to believe that many more bright moments of happiness and success are in Nick's future.
Nicholas Paige
In talking to families of newly diagnosed babies, I hear the same questions we were asking three and a half years ago. What do all of these new therapy terms mean? What books can I read? What can we do???? This website is aimed at bringing into one location some of the wonderful information we have come across for helping Nicholas's early development. We hope that by sharing this information you will feel as empowered as we have in helping our child realize his talents while strengthening his weaknesses.
This diagnosis finds us all at different stages in our lives. Early days and weeks can be a rollercoaster of emotions with tears of sadness mixing with what should have been only tears of joy. There were times when we felt overwhelmed and overpowered by the information, therapies, doctors appointments, explanations, and questions about the future. Then there were the times where a deep breath and good hug from Nick kept everything running smoothly. They are calling our children the 'second generation' of children with PWS for good reason. Early intervention and stimulation along with good medical care, growth hormone and early dietary management are combining to give our children wonderful childhoods and great hope for the future. While none of us would wish the extra doctor and therapy appointments on a young child, it is clear that our special little ones are meeting those challenges with smiles and milestones that scream 'just watch me world!'
Oscar Hill
If you are in need of parent to parent support, please contact the National Organization for information on the Parent Mentoring Program. Also, consider joining the Yahoo Group for parents of children 0-5 hosted through National. State Chapters may have local support groups or families that you can meet with in person. Early connections with other families can be very supportive and empowering. If you need help making a parent to parent connection, please email us at pwsplayroom@hotmail.com
Site Map
PWS
Playroom Intro Page
Therapy Dictionary
*Pre-Speech
ideas
*Sensory Integration
Medical and
Dietary Issues
*Feeding and diet issues
*g-tubes
*Efa's
*Meal Management: portion size and
frequency
*Sleep
Apnea
Book recommendations for both adults and children
Learning Styles
Therapy play and art ideas
Slings
Hope for the Future
Family Stories
**Although some of our contributors work in the medical field, none of the information contained herein is intended as medical advice. As with any treatment that effects the health of a child, we recommend you talk to your child's doctors and therapists to determine if our ideas are appropriate, and to decide the best courses of treatment and therapy for your child.
***Please consider taking the time to share your family story, book recommendations and therplay ideas with us! Email your article (pictures a plus!) to pwsplayroom@hotmail.com
This page was last updated on 12/15/03.
The web space for this non-profit site, aimed at helping our little ones with PWS, has been generously donated by www.ithium.net.