For the first time this year the Buddy Walk Organizer meeting and the Buddy Walk on Washington were back to back. So this was the first year that I was able to do both, each was it own great experience! Today I wanted to share a little from my Buddy Walk on Washington experience. Let me tell you I was nervous as could be. When Brandon was first born I spent many hours upon hours researching the laws and what was happening in the government. Somewhere between a growing family, a growing Buddy Walk and a growing business I lost track, to the point I had no clue what was happening. A few years ago the NDSS changed their focus to advocacy and each year we give a portion of the proceeds from the Chicagoland Walk to them to help fund this advocacy. Many of you probably aren’t aware of how much they are doing and how much they are looking out for our individuals with Down syndrome. So through the NDSS I have a renewed interested in getting involved to make sure my son will have a better future.
This year’s focus was on the ABLE Act and a new bill about funding for a joint research project on Alzheimer’s and Down syndrome. So we spent a few hours in a conference ballroom learning about the importance of these items and how to relay that importance to our representatives and senators. The next morning they released us all on the hill, all 300+ of us! In our group from Illinois we had about 10, including 3 self advocates! These kids (I say kids since they are younger than me but they were in their 20’s) were amazing in letting the officials know that they were there for a purpose and that they mattered. Even through the nervousness they shined! Just seeing them stand up for their future made this trip worth it….but there is even more!
For those that aren’t familiar the ABLE act, it will allow our individuals have a savings account and still be able to keep their benefits. This is huge! You can learn more about it here.
I am very happy to say that all 4 that we met with agreed to sign onto the ABLE act!! We are so close to getting this passed. Now I need to tell you the best part… our last meeting with the office of Rep Roskam. First thing Steve Conors and I noticed while waiting for this meeting was this awesome sign!! AND we also found out that this office has an intern that has Down syndrome, Evan. HOW COOL IS THAT!! Sadly he wasn’t working when we were there so we didn’t get to meet him. To see this and have this be the man that represents the area that our Buddy Walk takes place in (Wheaton) was beyond heartwarming. Rumor has it that he possibly could stop by the Walk this year, though I think it’s a must that he has to bring Evan with 🙂
I do hope that I am able to do this trip again and that when Brandon is a little older that he can be a self advocate. It’s just so amazing to be a part of making history and making the world better for our loved ones. If you do ever get the chance to go, do it! I know many of us have the fear of thinking we don’t know enough to speak up, but just remember if we don’t speak up and don’t help our advocates do the same then nothing will get changed. When it came for me to me speak it just naturally flowed from the heart and the fact that you are speaking of the future of your loved one just makes it come barreling out. Mom kick butt mode comes out 🙂
Check out the hash tag #bww2014 and #passtheABLEact hash tags on Facebook and twitter for all the postings from everyone.
And if you haven’t already please take action to help get the ABLE Act passed. Information can be found at the bottom of this page.
Hope you guys are ready for a historic 2014 Chicagoland Walk!