AS News

It's always great to see local news reporting on Angelman Syndrome. The more awareness we spread, the more help we can get to individuals with AS. Please see the link below from a local TV Station.

http://www.wkrn.com/Global/story.asp?S=10817597

Swimming with Nana

I haven't posted any videos in forever, so here's one from our recent vacation. Nana was great to go swimming with Kendal while I got the chance to lay out in the sun with no worries.

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!

Angelman Syndrome Conference

This year we were able to attend the Angelman Syndrome Conference in Orlando, FL. Much thanks to my parents who were able to travel with us at their own expense. We stayed at the Hilton Resort at Walt Disney World because this was the hotel where the conference was held. We arrived on Monday morning (7-27). It was Kendal's first flight and she did really well. Tuesday we had the opportunity to visit Magic Kingdom with Kendal. She really seemed to enjoy it. She always seemed to have a curious look at all that was going on around her.

Staying in a small hotel room with an extremely hyperactive child is not a good thing, we have learned. We tried to stay out of our room as much as possible because she totally wrecked havoc on everything. From pulling out the mini fridge from the cabinet, to turning the radio alarm on full blast, Kendal was into everything. Me and James received little rest during the week but that is to be expected with Kendal's sleep issues and the fact that she was in a new place. When we would come down for breakfast we would look around to all the other parents who were up most of the night with their angels. No explanations were needed.

Although we attended many classes that were offered as part of the conference; such as: Just for Moms/Just for Dads, Communication Practices, Latest Research Findings, Sleep Issues, Assisted Technology, Benefit Planning, and Behavior Issues - we still found the most important thing to be meeting so many other families/angels that have or are currently walking in our shoes. We of course felt extremely blessed when we saw the magnitude of other children's disabilities compared to Kendal, but we still know that we have our own battles to face. We met so many wonderful people from all over the country and even in Brazil. I am eagerly awaiting some emails from other families and hope to stay in contact with them through the years. Most importantly, it was nice to see people be where we are now and continue to encourage us that things will get better in many ways and our obstacles will change as Kendal grows but no matter what we will be OK.

I really hope we can go to more of these conferences that are held every other year. I know that I have made some lasting friendships and I am so grateful for being able to attend.