Clouds, May 2010

Clouds, May 2010

Friday, January 25, 2013


Get up and join me because we're going to advocate our asses off. (I am not yelling, so no exclamation point-- just stating a stern fact.) Maybe advocating is not actually a proven workout technique, but it will result in improvements.

I hope you read this because it's important. The 6th of March is fast approaching & there is work to do.

March is the month that can exhibit big climate changes in more than one respect. That is the crucial month in this country when Congress considers the federal budget for the following year. We all know the
typical weather pattern in March, long ago inspired the saying it comes in like a lion & out like lamb. This is interesting as the same holds true for the "pack" of very driven, tireless advocates who march on Capitol Hill every year & apply their efforts to lead us in a steady direction.

Since 2004, The National Fragile X Foundation has been organizing and hosting Advocacy Day in Washington, D.C. They sponsor this annual event so that the rest of us have a unique & powerful opportunity to take part in legislative efforts.

People who attend Advocacy Day do not audition. There is no application for Advocacy Day, because you simply sign up. You just register, reserve a hotel room, & then you go to Washington. No fragile x experience necessary (for real).

The goal of the Fragile X Caucus is to
promote public policies to enhance the quality of life for people with Fragile X. However, Advocacy Day efforts as a whole are hardly limited to benefiting the fragile x community. The constituents go to Washington to support investment in public health initiatives by means which include, encouraging funding research for both the National Institutes of Health (NIH) & the Department of Defense (DOD).

The research I am referring to will also benefit people with a wide variety of related disorders.

Advocacy Day is not just about Fragile X. Advocacy Day is about dissolving employment barriers & building economic opportunity. It's about all deserving individuals functioning as productive members of society. It's about the right to save & invest without penalties or loss of benefits. And overall, it's about constantly improving education & awareneXs.

The constituents headed to Washington, D.C. on or before March 5th, 2013 have a packed two-day schedule ahead of them. Day One is Training Day. Advocates are presented with a wealth of information covering specific legislative efforts; they will participate in discussions over what they're asking from their Representatives & of course why. They are provided training materials, & even an opportunity to practice specifically what they want to say.

Day Two is Advocacy Day. All advocates head to Capitol Hill; their appointments are already set up for them (at least 3: 2 Senators offices & 1 Congressional Representative office). They are given a schedule & a map so they know which buildings & offices to go to, & when. They are joined by fellow members of the Fragile X community who live in the same state... technically speaking. I prefer to say they are joined by "family" members who carry the same passion.

My sister took me to my first Advocacy Day in 2009. I use the word "took" because she didn't join me-- she brought me there. At times it felt overwhelming & almost too fast-paced (not to mention bitter cold)... but it was also surreal & positively incredible. Keep in mind Jenna was already a NY state resident at the time, so for the most important part of the trip I literally had to separate myself from her. This wasn't helping me & my already-existing anxiety but there were other factors which would soon distract me.

I remember another mom from NJ, from the Princeton area, whose son with Fragile X Syndrome was now a young man. I remember her explaining the process of trying to establish at least some level of independence for him. In addition to whatever money they put aside for this very purpose, they knew he would also need other government benefits. But there exists some very outdated, downright archaic legislation in our country, which still to this day prevents such a person from claiming these types of benefits... 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.

When this mom contacted Social Security to ask what exactly she was supposed to do with this money in her son's name, which he needs, the person she spoke with actually offered suggestions to "get rid of it". Such as buying her son a big flat-screen television. (Just a side note, you can put ABLE Act in any search engine & learn more about one of the many efforts which we've supported over the years.)

The one thought that my mind got completely stuck on, was that I did not want her to pass the torch to me. Nor do I want to pass the torch to anyone else. One day when Hayden is the same age as her son, I do not want to be in her shoes & STILL be doing this. STILL be advocating. We need to achieve our goals so this may become a thing of the past.

Through Advocacy Day I also learned about other Acts I didn't even know there was a need for... such as the Preventing Harmful Restraint & Seclusion in Schools Act. The only thing as scary as the need for this Act, is the fact this was just introduced to Congress in 2009. Roughly half of all states have little or no legal protection against restraint & seclusion in school.

Well back to our personal family history with Advocacy Day, the following year my parents traveled to experience this unbelievable event for themselves. Then the year after that Dan & I finally had the opportunity to advocate together.

As far as this year, just because I am not physically attending Advocacy Day doesn't mean I still can't be there. The same goes for you. Anyone can take part in advocating, without even leaving the comfort of their own home. Through the National Fragile X Foundation site, you can access information on how to help. This is simple, fast, & free :) (This is not NJ-specific)



People who are a consistent part of Hayden's life clearly fill a role to him. This is one of the many ways in which Hayden is just like other kids. In his eyes we each have a part to play & if need be, he reminds us to adhere to this & stay in character.

Of course some of us play the role of multiple characters. For example, I am the Personal Assistant, the Maid, the Crisis Counselor, & the Chauffeur. But my starring role is Chef. Dan is Bedtime Commandant, Bath Time Safety Enforcer, Sunday Breakfast Coordinator, & the Sensory Board. But his starring role is Jungle Gym.

If you don't believe me, you can come over before I get home. When I walk in the door, Hayden will give me an enthusiastic hello & within five seconds he will tell me he's hungry. When Dan walks in the door, Hayden will give him an enthusiastic hello & within five seconds he will pull his own shirt off & tell Gad he wants to fight. (Sort of imagine Scooby-Doo wrestling his sidekick, Scrappy-Doo, but in this scenario Scrabby is a Labrador Retriever.)

Our most important role is one which Hayden would not fully understand. Therefore will never (knowingly) remind us to adhere to this & stay in character. Being Advocates is not our starring role, but is the one we are most proud of.

Constituents who attend Advocacy Day are grouped by state because it's logical & most efficient. Speaking for our home state these advocacy efforts help children & adults with fragile x who live all over Jersey... including Sabir who moved here just last year... including brothers Matty & Benji... including Allison's brother, Louis... Molly's brother, Justin... Jennifer's brother, Eric... I could go county-by-county & continue to introduce you to someone in the fragile x community.

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 ass off. Go ahead & show your stuff. Go on & send this to as many people as you can... let's see if we can inundate Capitol Hill with letters of support.




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