By Deanna Tharpe, DSAIA Executive Director
“Do you have a local Down syndrome group in your area?”
If I asked this question one time over the past few days, I must have asked it a thousand. If you walked by the DSAIA booth at the National Down Syndrome Congress Convention, you probably heard it. We were working hard (along with NDSC who handed out surveys at their booth) to get information about existing and non-existing groups in the U.S. I realized it is a “loaded question”.
And here’s the breakdown:
25% - “We have a group in our area.” (After a moment, I find out that the group is a member of DSAIA and has filled out the survey.)
35% - “There’s a group in our area but we’re not very involved.” (I know…this bothers me too. Why are they not involved?)
25% - “There was a group in our area. We were a big part but now our son/daughter is older and I think they kind of fell apart.” (Is this the saddest thing you ever heard? What about the new parents in the area???? )
15% - “There is no group in our area. We wish there was. We kind of thought about starting one but didn’t really know where to start.” (We spent a long time talking after this remark.)
Each time I asked the question, it led to a discussion about their group or lack thereof. I realized this weekend that even though I thought (going in) that the Gaps in the Map Project was wonderful, I had no idea how much it was needed. I realized that it is more important than ever that we spread the word about the project to everyone on our email list, our Facebook page, etc. We have GOT to move forward on this project and the survey is the first step in securing access to support for families from coast to coast.
Won’t you take a moment to complete the survey, share the link and support the project? Need more information? Go to www.dsaia.org/gapsinthemap or find the survey at www.surveymonkey.com/s/gapsinthemaps.