One of the most common
questions I heard this time around was, “Do you still learn something when you
come?” Or, “What do you continue to get
out of the conference?” I know exactly
how to answer.
Honestly, I do not even
remember my first conference. It was in
Denver, Colorado, and there were a mere 100 or so people in attendance. I was one of many in a daze. I really had no idea what to expect, and I am
not sure what I learned. I do, however,
remember some of the people that I met. Few
are still present today. Conference #2
through 9 had a different meaning for me each time. As my boys grew, so did my thirst for
knowledge in different areas. When they
were young, I wanted to know what the future held for us as parents. I also wanted to know how I could help my
boys today. I wanted to know how I could
help make their life better and more productive. I wanted to know how to help myself. Little did I imagine that the friendships
that I formed would become one of the most important things that I would take
away. The information I gained from the
many experts has been invaluable (as you know if you saw “Mrs. Rogers’
Neighborhood”), and really could not be learned in a better setting. Having every expert in one place at one time……priceless.
I made a personal decision to
formulate a goal each time I decided to attend a conference. This helped me feel like it had a purpose and
was meaningful to me. Whether it was networking,
learning about adult issues, or toileting training, I set a goal. During the early conferences there weren’t
nearly as many attendees as there are now.
Fragile X Syndrome was just making its way onto the circuit. I have many happy memories of early
conferences and of the people that helped me through those times. Some years ago, the National made a routine
of incorporating young adults with Fragile X into the awards ceremony. These presentations were heartwarming and
always made the entire audience cry. It
also gave me so much hope. I think hope
is the one main thing that I have always come away with and I believe it’s
become an addiction! Now, it is my turn
to provide hope to others that are just making their way down the Fragile X road.
The St. Louis conference was
really the first time that I had the courage to present “Mrs. Rogers’
Neighborhood” in its current form. I spent
many hours rehearsing it and preparing notes to tell the story of my boys. I actually had taken several years off from
conferencing and missed Washington, D.C., but that has all been worth it. I needed that time. I needed to focus on the one thing that is
most important to me---my boys and their happiness. The drive to help them become productive,
happy members of our community is what really keeps me going every day. But, it is the families of Fragile X that
keep me coming to conferences.
While I was in Miami this
time, it warmed my heart to hear stories from other people about those early
years. During the banquet reception, one
Dad came to me and told me a story I had long forgotten. He reminded me of his families first
conference when his 2 children were very young.
He said that he wanted to tell me how much comfort it gave him when we
met one evening by the side of the pool.
His children were swimming and running all over the place, just as most
kids do. Evidently, I took his son and held
him on my lap and calmed him while all along I appeared calm and
collected. It must have been one of my
good days, because as I recall, it took me years to learn calm. He said this still gives him and his wife a
feeling that it will all be ok. He said,
“to see you in 1996 (5 years after our diagnosis) with such calm and
contentment gave us such peace and hope for our future and the journey we were
just embarking on”. Their son is now an
awesome young man that is very productive and happy. This whole conversation and those like it are
the things that keep me motivated to continue to come. Or, another Mom that told me that “You hold
the distinction for being my favorite memory of my first conference.” It is
my hope that I can mentor someone else to be there for those families that are
just starting out. I know I won’t want
to do this forever….but for now, I am content.
So, my answer when I’m asked,
“Do you still learn something when you come?”
Or, “What do you continue to get out of the conference?” I can easily say that I always learn about
the kindness of others, about the need for mentoring others and I always make
new friends. I have some awesome
memories from those conferences and all I can say is….”What happens in Miami,
stays in Miami!” “That’s the life for me….” In 2014, who knows what my goal will be????