By Deanna Tharpe, DSAIA Executive Director
Like many of you over the last couple of weeks, I have spent some time reflecting on 2011 and planning ahead for 2012. Just after Christmas, we lost a family member. My cousin Michael, who was 55 and had Down syndrome, lost his battle with leukemia. I wish I had been able to spend more time with him, but it was always great to hear childhood stories from my mother.
In reflection, I can’t help but compare Michael’s life to my own son’s and how their opportunities and experiences will be different. Fifty-five years ago, it was unusual to choose to keep a child at home rather than place him in a state “home”. Except for a brief time in a specialized assisted-living community, Michael lived at home with his parents. I can’t help but wonder how their “choices” were presented to them at Michael’s birth. When I last saw Michael back in 2010 before I moved from Texas, his dad commented on how great Joel was doing and how much progress the world had made since Michael was Joel’s age.
He was certainly on target there: medical advances, educational advances, inclusion, awareness. Although professionals have helped us make leaps and bounds, it’s the creation and the evolution of the local Down syndrome parent group that I find the most fascinating. Groups are celebrating thirty and forty years serving their community, and yet new groups are still forming every day because of the need in their area. Where would the greater DS community be without the contributions of these local organizations? Would we have successful programs like prenatal/new parent outreach, medical outreach, educator support, teen/adult services, employment support and the like?
The DS community is lucky to have such great leaders at the national (and international) level, but even more fortunate to have such great leaders in each and every local organization across the country. So, as we reflect together, let’s remember that your group plays an important part in the life of a parent who is making big (and life-altering) decisions every day. Yes, it is a heavy responsibility to carry as a group leader, but DSAIA knows that you are up to the challenge. And so are we.
And that is where the planning comes in. DSAIA is comprised of groups who are facing (or who have already faced) the same challenges as you are currently. Some leaders are parents, some are not, but all are working toward the same goal. As you play a role in the lives of individuals with Down syndrome, we hope that you will allow us to provide a different type of support to you as group leaders. In 2012, let’s not forget where we were as little as fifty years ago when Michael was a child. We’ve come a long way but we have a long way still to go. DSAIA is excited to be on that journey with you, as I am personally. Happy New Year!