Monday, March 5, 2012

Advocacy and Stupidity

March wow it's here already. March has always been one of our busiest months. Those of you who follow my blog regularly know that not only is March Hayden's birthday month but its also the month that we recognize Fragile X Advocacy Day and Spread the word to end the Word day.
So on the same day, March 7th, we advocate for Fragile X and we advocate against stupidity.

Fragile X Advocacy Day: March 7th
On this day 150 Fragile X advocates from all around the country are meeting with Congress to help secure funding, advance research, and spread the word about Fragile X Syndrome. Mike is one of those advocates again this year. I think this makes 3 years in a row that he has traveled to D.C. with our fragile X family to advocate for our little man and many others just like him. I cannot tell you how proud I am to be his wife. I cannot tell you how awesome it is to be part of this amazing and supportive FX family. How cool it is to think that today in Washington D.C. our stories will be heard, our pictures will be seen, our letters will be delivered. Our representatives will see a picture of Hayden and our family. How cool is that? How great is it that these amazing advocates spend their own time and money to make sure our voices are heard. From the bottom of my heart I thank each and everyone of you for being such amazing people.

Spread the word to end the word day: March 7th
Some day I hope that we will live in a society that no longer needs a day like this. Someday I hope everyone realizes that when you say something is "retarded" no matter how you are using it, it's painful to someone. I don't like it when it's used as a medical term. I don't like it when it's used to create awareness and I especially don't like it when its used as slang. I signed a petition years ago to never use it and to call people out when I heard it. I NEVER use it and you most definitely would never hear me use it to describe Hayden in any way. Not to create awareness and not to describe his disability. Stop using it! Because what you are are loosely referring to as retarded will never come close to what my little boy is. It will never describe the goodness that radiates from him. I am thrilled to say that our school district no longer uses the term. For the first IEP in two years I did not have to hear the word uttered once. I did not have to ask them to not say it. I cannot tell you how awesome it was. I want to say thank you to our family and friends who no longer use the word around us. I REALLY want to say thank you to our family and friends who have stopped using the word all together. It means an awful lot to our family to be respected in this way. Those of you out there that continue to use it as slang; grow up and STOP. Show some respect for the people around you. If you need a list of other words you could insert in place of it let me know. I will be happy to send you one.

Happy Fragile X Advocacy Day,
Tina and Hayden

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