We are back home from the 13th International Fragile X Conference in Miami. I was so ridiculously anxious about the trip in advance because I only had one other International Conference experience to refer to which was my first in Detroit. This trip was so, so different.
In Detroit I was a new parent. I had not ever met most of the people at the conference. I’d heard of them, I had exchanged Facebook messages with some but many of them I had not one single clue about. I was, at that time, taking my first tentative steps out into the fragile X community. This time I came as a LINKS leader, I came with hundreds of fragile X parents as friends on Facebook. I knew their kids’ names, where they had vacationed, their pets, their interests and their pet peeves. We had a foundation to build on this time so it was not nearly as hard to reach out and talk to new people.
In Detroit, I attended every possible session, there was not a single moment of my day when I wasn’t supposed to be somewhere taking notes. This time, I went to 3 sessions (4 if you count the 1 I was a presenter for.) I KNOW! I’m at a conference with the world’s leading fragile X experts and what do I do? I hang out at a table in the lobby selling t-shirts and magnets. And I loved nearly every second of it.
I’d be lying if I said there weren’t times when I felt overwhelmed and wanted desperately to crawl into a hole. Then I’d walk away from the crowd for a bit, take a deep breath and just look around. The International Conference is just as much about the people as it is about the information and you need to give yourself time to enjoy the people or you are missing a huge piece of the conference…the human connection.
Let me share a few stories…in Detroit I attended the male panel, it was a group of young men who presented slides describing their schooling and their current lives. They talked about the things that worked for them and helped them learn and grow and they talked about the things that upset them and hold them back. They took questions and answered them. That was a revelation to me.
I approached one of the moms after the session and nearly begged her to tell me how to help my son become like hers…it was the first time I was able to imagine a happy, productive life for my son in a larger community and it’s a gift that literally changed my life. It changed my entire view of living with fragile X. I attended this session again in Miami and it never gets any less powerful. I will never miss this session at any conference.
In Miami, I had more time to enjoy the people. I walked around the exhibitor tables and talked to people. I met a couple of amazing men who live at the Stewart Home School in Kentucky. One of the most terrifying things about fragile X, for me, is what happens when I’m gone? I have spent a lot of nights worrying about this. I won’t lie, thinking about sending my son to live anywhere is torture…thinking about sending him hours and hours away? Not a possibility. Never going to happen. Then I met David and Chuck. I was absolutely in love with them. They told me about the school in such a way that made it very clear that they love it and are thriving there. I even found myself asking how far from an airport they were. Who knows what the future will bring but I can see this as an option at some point. A place for Caleb to ride horses or take yoga or study science and reading…a place to call home.
Also in Miami I had a chance to reconnect with friends. Sure, I could (and do) spend plenty of time skyping, texting or emailing them and even talking on the phone at times but there is something about sitting around a coffee table loaded down with pizza and drunk gummies while we catch up that just can’t be put into words. Having a chance to jump fences and wade knee deep into the ocean under the moon, to pole dance for the Foundation staff, to walk onto the field at the start of a major league baseball game with the most amazing and inspirational people I’ve ever met, to teach my ridiculous “Popcorn Dance” to Tracy (of Tracy & Mouse!!!)…none of this would be possible if I had skipped the conference.
So, while I certainly appreciate the fact that many people go with a plan to take notes until they drop and squeeze every idea and tip possible from the amazing faculty, I don’t want anyone to ever lose sight of the fact that though the “book learning” portion is important…you *can* do that at home. You can read books and scientific journals to your heart’s content…and still miss what makes this truly so amazing in my opinion…it’s the people.