Guest blog author: Kari Jones, President/CEO of Down Syndrome Association of Central Ohio, DSAIA board member, and sibling
Today, over lunch, I drove by my brother’s house as I was heading to a meeting. Sometimes I just want to make sure everything looks “right” and it’s just kind of a habit since he lives so close now. When I passed by, a blue paper on the front door caught my eye. I immediately jumped to “protective mode” and had already made up my mind that whatever it was, it was probably bad because I didn’t see any similar notes on other houses on the block.
As I parked my car and ran up the steps, lots of things were flashing through my head. Is it a mean note? Someone “marking” his house somehow? Someone trying to take advantage of him somehow? A neighbor writing that he needs to close his blinds?! (Note: If that letter hasn’t actually come yet, it’s undoubtedly on the way... )
I got to the door, looked closely, and realized it was an invitation to the neighborhood block party.
I immediately felt several emotions, but mostly I just felt overwhelming happiness. All my life, all I have ever wanted for Alex is for him to have a community around him that makes sure to have him be a part of it. Not one that lives around him, but one that lives with him. One that includes. Today, in the neighborhood I hope he grows old in, it officially happened.
Over his lifetime, Alex has had countless pieces of paper that meant something to him and to us as his family. Report cards, IEP’s, ISP’s, diplomas, paychecks... and many other things that represented the milestones in his life. It’s more than just milestones, though. These papers represent inclusion.
It hasn’t always been glamorous, but I firmly believe that all of the years of hard work (my parents’ mostly) and pushing (I’ll take credit there... I’m the oldest! Isn’t that my job?!) which led to this blue paper being taped to the door today.
Inclusion isn’t just a one-time decision. It isn’t just about school, or sports, or work. It’s raising awareness so others think “Hey, I should make sure to give him a note since he may not see it on Facebook like many of the other neighbors.” It’s a lifetime of choices that lead to someone’s acceptance. If we all do it, eventually maybe there won’t be overbearing sisters pouring their hearts out about what a big deal it was to have their brother with Down syndrome invited to the neighborhood block party. Wouldn’t that be awesome?