Friday, November 5, 2010

Conference Eve

Tomorrow is our annual state Prader-Willi conference and this year's speakers are fantastic. Dr Linda Gourash and Dr. Jan Forster are my favorite PWS experts. Their work has formed the basis of our approach to Oscar's food and behavior, and I credit their brilliance for our success so far.  Their work helped us create a food security protocol that keeps Oscar safe at home and at school.  They also helped us realize that telling people that Oscar was always hungry didn't really elicit the desired response. Instead, if we say that "enough is never enough" people won't be tempted to try to placate Oscar with more food...No matter how much you give him he could always eat more. It's a hard concept to grasp, and it applies to more than food.  For years Oscar would try to wear two or more pairs of socks. He would wear layers and layers of pajamas and as many as three shirts to school.  His plastic animal collection is probably worth thousands. (ok, that's an exaggeration).  But we see it across all domains -- enough is never enough.  So simple..but I would have never thought of it myself.

I own four copies of their Food, Behavior, and Beyond DVD. One is on permanent loan to our school district and I brought two more with me to share with local elementary teachers that will be attending tomorrow.  Oscar's two aides are coming, as well as his former preschool teacher and the district behavior specialist.  I just know I'll be sneaking away from my post at the education table to chat with everyone!

I drove down to San Jose tonight to attend the pre-conference "Meet and Greet" and got to talk briefly with both Dr Gourash and Dr Forster. They are so lovely and generous with their time and attention.  I found out in the four plus years since I've seen them present they've revamped their talks to include more up to date material. I thought they were pretty well up to date before so I'm excited to see what tomorrow brings.  I'm hoping it includes another song or two -- they always mix in a couple of duets they've written about PWS into their presentations -- definitely a highlight! I'll be sure to report back here.


  1. Enjoy the conference Mary! Sure wish I could be there with you. I have not attend one of their programs yet. I didn't know they sang!

  2. It sounds fascinating -- and I'm so proud that you have such a leadership role. I passed on information about Prader-Willi and your blog address to some of my colleagues at LEND, so hopefully, more people are exposed.

  3. How uplifting and inspiring to be able to go to a conference and listen to others who understand and share your concerns. And the fact that they do it with music, humor and compassion is a bonus. It's also wonderful that so many in your school community are attending, as well. I'm looking forward to hearing more! I'd say, "Have fun," but I think you already have that covered. =