Prader-Willi problem solving & solutions exchange

I have been trying to figure out how to add Prader-Willi problem solving & solutions exchange on my blog as some kind of badge or gadget or whatever the correct word is.  For those of you who don't know about this exchange, let me tell you a little about it.  Prader-Willi problem solving and solutions exchange is a facebook page and I am one of the administrators of this page, along with Ali and Misty.  We have 766 people who follow this page, where anyone in the PWS community can post a question, a solution, a good idea, and get responses from others.  It is a wonderful facebook page.

I have many, many facebook friends who are raising a child with PWS (mostly moms, some dads, some grandparents, recently a great-grandmother, some adults with PWS).  Facebook has been a lifesaver to me.  I was a member of a Yahoo PWS e-support group and one of the members invited me to facebook.  I already had a facebook page but never used it.  I thought it was kind of silly at the time.  But I added Jennifer as a friend and took off from there.  At that time, I barely had 30 friends and  now I have over 600.  Some I know better than others, but I feel like I know them all.  They are my family now. They understand me.  They get it.  When I complain, they know what I am talking about.  When I celebrate an accomplishment, they celebrate with me.  They have wonderful suggestions and I have developed more self-confidence because I am armed with the information I have learned from so many others who have walked this road ahead of me.  I no longer cry at IEP meetings.  The staff actually listen to me now.

Audrianna will be 10 this month and I had never met another family who had a child with PWS until this past summer.  What a life-changing event that was for both of us.  Audrianna and I went to PWS camp here in Oklahoma.  I went as her counselor although that was not required of me.  A family I met on facebook let us spend the night at their house since we had no transportation to get to camp.  We got a ride halfway to their house, they picked us up, we spent the night, they took us to camp and took us all the way home after camp.  We live about 2 hours away from them.  Their daughter is a few years older than Audrianna, her name is Audrie.  The girls had a blast.  I felt like I had known this family for so long even though we just met.

I am rambling now, not sure where I am trying to go with this.  I do want everyone to know about the Prader-Willi problem solving and solutions exchange on Facebook.  I cannot begin to describe how wonderful the sense of community and support is.  I felt so alone for so long, I NEVER want anyone else to feel that way.

I'm off to clean the house, have a great day everyone.


Janis