Overview of the Conference (Part 1)

For anyone that wanted to know more about what things we learned or experienced at the Angelman Syndrome Conference (thinking of you Paula!), I will be providing my feelings and insights to the highlights of some of the sessions we attended.

First off, it was really neat to see how we families seemed to gravitate to one another. On one of first days there, we went down to the pool and immediately started talking to another family who had a son with AS. Before we knew it we were surrounded by several families all eager to ask one another questions about sleep, therapies, and anything else that came to mind. I think it was definitely the first place I have been where I knew my concerns or feelings wouldn't be brushed off so quickly. For example, a concern about throwing objects so forcefully was not immediately dismissed by someone that doesn't know about AS saying, "Oh, she'll grow out of it!" Instead it was met with different ideas to avoid those issues by other parents that have had the same problems. One parent, told me that her 16 year old still would throw objects continuously which is why her child still drank from a sippy cup.

We attended the "First Timer's Session" and it was a great beginning session for parents that had never attended the conference before. Most parents there were fairly young, like me and James, seeking to learn anything and everything about AS. One of the first exercises we did was to write down one emotion that we were feeling at that particular moment down on a post it note. When we wrote down our word we went and stuck it to the wall. My word was "anxious". At the end of the session, we took the time to walk down the wall to read other peoples emotions. I counted three other "anxious" on the wall. I thought it was a great example to show that even though we sometimes feel alone, there are people out there that are walking in our shoes and know the same feelings or frustrations that we are living through. The main point of the class was to familiarize new participates of the different conference sessions and show us the importance of networking with other families. It started out the conference on a very high note.

James attended a "Just for Dad's" session and I attended a "Just for Mom's" session. James seemed to get a lot of out the session by talking in small groups with other fathers dealing with everything from marital issues to behavioral issues in AS. I enjoyed my session because we just got a chance to talk in an open forum by asking other moms questions. The speakers kept telling us we had the best resources right there - not necessarily the doctors, but all the moms!

Got to close on this now, but my next post will detail out Dr. Calculator's Session on Best Communication Practices, Dr. Oliver's Session on Understanding and Changing Difficult Behaviors, and Dr. Weeber's Session on the Most Recent Research Advancements.

Stay Tuned!