What If Your Down Syndrome Organization Didn't Exist?

Tue, May 28, 2019 10:12 AM | Anonymous member (Administrator)

By Deanna Tharpe, DSAIA Executive Director

Some people only know me as the executive director of DSAIA. But once upon a time, I founded a Down syndrome association in Paris, Texas. I resigned in 2010, moved to North Dakota and was able to continue my journey in the DS community by becoming part of DSAIA.

Two years ago, I moved back to Texas. Hanging out after a golf scramble, I had someone come up to me and ask “You probably don’t remember me, but I remember you.” After a little hesitation (I mean, I wasn’t sure where this was going), I asked her name. She related that she had a daughter with Down syndrome and 7 years before, I had come to her house for a new parent visit.  Whew… 

I instantly remembered her and her daughter because that was the very last new parent visit I did before leaving Texas for North Dakota. She told me that she was struggling back then…very young with a baby, not to mention that the baby had Down syndrome. She said I stayed a long time and she appreciated it.  (Actually, it was my last visit so that was probably me being selfish.)

She told the person next to me that I held the baby, fed the baby, and so on.  She looked at me and told me that the visit CHANGED HER PERSPECTIVE.  She showed me pictures of her now 7 year old daughter who is doing well and told me that I put Down syndrome on the back burner and helped her understand that this sweet little baby was a baby first.

Now, about this time, I am tearing up (I am tearing up right now as I write this) and I am pretty sure a few others were around me. I don’t remember everything she said to me that night, but I walked away with the realization that even one interaction (a few hours or a few minutes) can make a world of difference in the life of another person.

It also reminded me that not every area in the country has an active Down syndrome association to be able to make that difference in someone’s life. To be fair, it’s more than just existing…  Being a professional organization with proven programs and top-notch training is so important and that is why I LOVE what DSAIA does for organizations.

But as you read this and think back about the many lives your DS organization has touched, think about what would happen if your organization didn’t exist. And I think I’ll leave that right here for you to ponder.

(If you have a story to share, send it to We want to hear it!)

I want to tell you what WONDERFUL time I had at the conference. I learned so much and came away with lots of ideas for our organization. -Barb Waddle, The Upside of Downs of Northeast Ohio


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