By Allison Wixted, DSAIA Board Member, Gaps in the Map Chair, DSA of Greater Richmond Executive Director
Does this sound like your story?
When my second child was diagnosed with Down syndrome, I didn’t have anywhere to turn for advice. The only person I knew with DS was my 2nd cousin and he was my mother’s age. Things had changed. My obstetrician was supportive because she lived next door to someone with DS as a child. I went to the internet. I bought literature at every bookstore. I longed for someone to talk to about my child with Down syndrome. What was I to expect? What were the developmental signs to look for? More importantly, I just needed someone to talk to who understood.
You're not alone. I know that when our daughter with DS was born, I had an insatiable desire for accurate and up-to-date information, along with support from other parents. I also know that I'm "one of the lucky ones," in that I was fortunate enough to tap into a supportive local DS affiliate shortly after her birth. It was an incomparable gift and literally saved me from the panicky thoughts flying through my head at the time like "I'm alone," "No one understands," "I have no idea what to do next," and "I don't think I can do this." But what if I hadn't gotten connected to my local affiliate, or if there simply wasn't one in my area?
That's where the "Gaps in the Map" project comes in! For families who don't have access to a local affiliate, we are determined to change that! In partnership with NDSC and NDSS, DSAIA is spearheading the "Gaps in the Map" project to ensure that EVERY family has access to a local DS affiliate! To do that, we need your help! Whether you're a member, board member, or on staff of a local DS affiliate, we need you to help us with the first step in determining where those gaps are! We need you to add your local DS affiliate to our "master list" so that we can determine where the gaps are. Then, over the next 2 years, our "Gaps in the Map" Task Force will be working hard to find solutions to "fill those gaps."
How do you add your local affiliate to our "master list?" Simply complete our BRIEF survey at https://www.surveymonkey.com/s/gapsinthemaps so we'll know which area(s) your local affiliate serves and who you are! Don't assume that "we already have your information," or "someone else from our group will do it;" take just a moment to complete the survey. If you need motivation, just remember how you felt when your child with DS was born and you connected with and were sustained by your local DS affiliate.
Thank you for completing the survey and supporting this important project! We also encourage you to check out all the project in detail at (http://www.dsaia.org/gapsinthemap). Be sure to "Like" the "Gaps in the Map" Facebook page! Most importantly, talk up the project with your friends in the DS community across the country!
If you have any questions about the project, feel free to contact me, Allison Wixted, (DSAIA "Gaps in the Map" Task Force Chair) at firstname.lastname@example.org or Deanna Tharpe, DSAIA Executive Director, at email@example.com.
Together we can ensure that ALL families have access to a local DS affiliate!