My Trip to Indy and NDSC2014

Community Updates Down syndrome organizations

My Trip to Indy and NDSC2014

By Stephanie
On
Josh at NDSC

We all made buttons with our kids’ pictures on them and wore them at the NDSC conference in 1990.

The Emotions Involved

My experience with “the nationals” started with my first NDSC conference in Memphis, TN, in 1990.  When I was able to return this past weekend, after an almost 20 year hiatus, the feelings I had on that first trip came flooding back.  After the first half-hour my teeth actually hurt from smiling so much.  I simply can not explain the emotions involved with seeing so many beautiful faces, of every age, gathered in one place.
I had the chance to chat with several parents for whom this was their first conference.  You could actually see the those feelings written all over their faces.  It truly is amazing.   

The sessions are always well planned and informative.  There’s a variety of topics discussed that interest parents and caregivers of children of all ages.  This year, my main focus was on supporting Patti and #Justice For Ethan and introducing The Road We’ve Shared to the wider community.  The exhibit hall was buzzing with activity from beginning to end.  

Discovering the Exhibit Hall

Our table may not have been elaborate like some of the displays, but it represented a true team effort.   
The Road We've Shared at NDSC2014

The feeling of being among friends and family was never more evident to me than during those precious moments when people would stop at our table, or in the hallways, sessions, and restaurants, to ask about JusticeForEthan and give their condolences to Patti.  I lost track of the number of times when parents were so overcome with emotion when they saw her that they could not hold back the tears.  Men and women from all over the country were so touched by the story, and the strength Patti continues to show by being there and fighting for justice that they had to reach out to her and say things like, “that could have been my child” and “thank you for making sure it never happens again.” 
It was bittersweet for me to watch Patti in action.  I was so proud of the way she handled herself  the entire weekend.   She is a true advocate and for three days she was surrounded by people who “get it.”  She graciously gave updates on her progress with training first responders and allowed  others to express their grief to her.  In this environment she was obviously empowered by the outpouring of love and support from her extended family.  
A rough cut of the Justice For Ethan documentary was shown and director Ed Rhodes got lots of new footage for the project over the weekend.
There wasn’t a dry eye in the house as Patti took the stage to receive a President’s Award for her advocacy.  She cried, I cried, and the entire banquet hall full of people stood to their feet to celebrate her amazing efforts.  
Ethan’s legacy continues to grow in amazing, and sometimes unseen, ways!

Being Creative

There were lots of adults who have Down syndrome who were selling items that  they made themselves.  
Sarah's Sewical Lounge at NDSC2014

Sarah and her mother Joyce were busy making quilts and pillow cases for Sarah’s Sewical Lounge.

A huge selection of clothing by Ashley DeRamus was available from Ashley By Design.

Kaylene displayed her beautiful bracelets while Gabe and KK sold their beautiful glass creations.

Todd did an awesome job explaining and selling his greeting cards.

It was truly amazing to see all of these young adults with creative enterprises.  

Celebrity Spottings

The exhibit hall was also the place to find the celebrities in our community.
DeOndra Dixon at NDSC2014

I got to meet DeOndra Dixon  (Also knows and Jamie Foxx’s sister) at the Global Down Syndrome Foundation table!

I also saw TIm Harris from Tim’s Place.    Did you know that he’s going to have his own reality TV show, Everybody Loves Tim?

Meeting New Friends

Another highlight for me was getting to finally meet some of the people I’ve become friends with online in the past year and a half.  

I finally got to meet Marianne!  The Joey’s Ups with Downs table was right next to ours (by design) and I got to spend some quality time with her and her super supportive husband Karl.
Talk about inspiring!  She’s not only taught me so much about the importance of planning, she’s also a fantastic and dedicated voice for adult siblings!  
I also got to meet some of the great people from IDSC, NDSC, and NIH.  It was an alphabet soup of fantastic, passionate people all working together for a common cause and I felt honored to be among them.

More Important Work

I could go on and on about the conference, but I’ll try to wrap it up by telling you what I learned.  Our work here on The Road is unique, and needed.  As I explained our mission to people I received a great deal of validation that our community is important.  Parents and caregivers do feel the need for a central location that they can turn to for information about adults with Down syndrome.  

I also learned that the existing groups are working together for the common good.  It may seem, from the outside, that our community is divided and thus not as strong as it could be.  As I got to meet some of the leaders from each group I learned that’s not true.  There is a respect and comradarie that exists which may not always be visible from my couch, but from now on I’ll know it’s there.   I was encouraged by not only how well the groups worked together, but also by how supportive they were of me and our efforts here at The Road.  

I look forward to building on all of the relationships that were strengthened this past weekend, both professional and personal. 

Together we can do so much!

I’d like to extend my heartfelt gratitude to all of the people who bought t-shirts and contributed to our travel fund.  The NDSC conference is a one of a kind experience and I’m so glad that I was able to attend.  

See you next year in Phoenix!