- Fragile X
- Treatment & Intervention
- Support the NFXF
My sister Jenna took me to my first Advocacy Day in 2009. I use the word “took” because she didn’t join me — she brought me there. Jenna was a New York state resident, so she wouldn’t be coming with me to the actual visits with my New Jersey representatives. Without her, I was overwhelmed by the fast pace of the Capitol — but the experience was incredible! And then there was the reminder of my son Hayden’s future.
See, there was another mom from NJ whose son with Fragile X syndrome had grown into a young man. I remember her explaining the process of trying to establish at least some level of independence for him. But some very outdated, downright archaic legislation in our country prevents such a person from claiming the government benefits he needs… if they have other assets in their name. When I say “assets”, I mean an unrealistically low amount of funds to support a modern-day lifestyle.
I kept thinking that I did not want her to pass that torch to me. Nor do I want to pass the torch to anyone else. One day when my son Hayden is the same age as her son, I do not want to be in her shoes and still be doing this— still be advocating. We need to achieve our goals so this can become a thing of the past, and that is what inspires me.
Since then, I’ve returned as often as I can with my family to Advocacy Day.
People who are a consistent part of Hayden’s life clearly fill a role to him. In his eyes, we each have a part to play and if need be, he reminds us to adhere to this and stay in character.
Of course, some of us play the role of multiple characters. I am the Personal Assistant, Maid, Crisis Counselor, and Chauffeur. But my starring role is Chef. Dan is Bedtime Commandant, Bath Time Safety Enforcer, Sunday Breakfast Coordinator, and the Sensory Board. But his starring role is Jungle Gym.
When I walk in the door, Hayden will give me an enthusiastic hello and, within five seconds, he will tell me he’s hungry. When Dan walks in the door, Hayden will give him an enthusiastic hello and, within five seconds, he will pull his own shirt off and tell Dan he wants to fight.
But our most important role is one which Hayden would not fully understand. For this role, he won’t remind us to adhere and stay in character. Being Advocates is not our starring role, but it is the one we are most proud of.
Wherever you live right now, the truth is you do have the power to make a difference. Think of this as a good deed, an act of kindness or a mitzvah. Or join me in thinking of this as advocating your butt off. Go ahead and show your stuff. Share this with as many people as you can, and join me at Washington… let’s see if we can inundate Capitol Hill with crowds of advocates.