The 2014 NDSC Convention: reuniting & making new friends

Your author presenting at the 2014 NDSC convention

Your author presenting at the 2014 NDSC convention

The National Down Syndrome Congress Annual Convention just concluded this weekend. It was a very cool experience giving and attending presentations and reuniting with and making new friends.

Presentations

The National Down Syndrome Congress’ (NDSC) convention is the only annual national convention for families and individuals with Down syndrome. Each year, the conference committee led by the impressive Colleen Popp selects the best speakers to present on the fields of their expertise.

This year, I attended a presentation by my friend Jo Ann Simons on transitioning from high school to adulthood. While Juliet turned 10 the day Jo Ann presented, and transition is over a decade away, I wanted to start thinking about this important process. It was wonderful hearing Jo Ann speak about the experience that her own son, now 35, is enjoying, but also the tips for all parents to consider for their own children. Jo Ann had an excellent way of discussing some of the difficult steps that are part of transitioning into adult life for individuals with intellectual disabilities, like detailing all the things they cannot do in order to receive the publicly provided supports established to assist them.

I also made a point of attending my friend Dana Halle’s presentation on teaching math to children with Down syndrome. Now, it should first be appreciated that that phrase–teaching math to children with Down syndrome–would have been scoffed at as simply wasting time not that long ago. But, Dana, through her excellent work with the Learning Program, and partnership with Downs Ed International, has developed a proven program. The key point I took away from her presentation was what seems the simplest:

Make learning fun!

That seems sort of obvious, but I know there have been times I’ve become frustrated doing homework with Juliet and that only serves as a demotivator for her to continue trying to figure out the math problems. That simple lesson of making learning fun is one I hope to commit myself to in the coming school year.

I was also honored to have been selected for the fourth time to present on the newest genetic developments in prenatal testing and potential treatment for Down syndrome. I was very gratified to have presented to a sold out room, particularly since my session was a kick-off session on Friday when many attendees were still arriving. I hope the attendees both learned a lot and will commit to doing one of the five steps I suggested for addressing the challenges posed by the current administration of prenatal testing (ranked from least to most intensive):

  1. Add your OB to your holiday card list (HT: Cam Brasington).
  2. Take the recognized resources with you to your annual exam, be it with your Gyn or your general practitioner.
  3. Respond to news reports with letters to the editor/op-ed.
  4. Become trained as a “Down syndrome product rep.”
  5. Pass the Down Syndrome Information Act in your state.

Regarding number 4, I was very pleased to have lunch with a local organization that is committing to be trained to engage their local medical community. And, I very much enjoyed getting to spend time with Kari Jones of the Down Syndrome Association of Central Ohio, who I trained last September and who have gone gangbusters with their program. Regarding number 5, I was also pleased to have breakfast with Rick Kosmalski and his family to discuss his experience getting the Down Syndrome Information Act passed in his home state of Delaware and the steps they are taking to implement it.

Friends

As that last paragraph suggested, the other great thing about the convention is the ability to reconnect with old friends and make new ones. Having presented multiple times and served as a founding board member for Down Syndrome Affiliates in Action, the NDSC convention serves as an annual opportunity to meet up with current and future leaders from around the country. It was great spending each evening with my former board members and leaders of members of DSAIA.

In addition to reuniting with old friends, the convention also provides the opportunity in this internet age to meet people you’ve “known” on-line, sometimes for a very long time. So, herewith, is my run down of fellow bloggers and internet contacts I had the pleasure of either meeting for the first time or getting to see them again after too long had passed:

  • Meriah Nichols of A little Moxie (which was one of the highlights of the convention for me, carrying Moxie on my shoulders as we walked back from dinner);
  • Rebecca Benson-Bates of The Bates Motel and her beautiful daughter Samantha;
  • Sandra McElwee, who I purchased a copy of her book Who’s the Slow Learner, about the struggles and success she had advocating for her son throughout his primary and secondary education;
  • Melissa Stoltz of gardenofmyheart;
  • Missy Skavlem and Sarah Marshall, who are active supporting expectant moms at the babycenter.com Down syndrome board;
  • Jawanda Mast, who blogs at thesassysoutherngal about her life and her amazing daughter Rachel, who I was so glad I got to spend time with;
  • Rob Snow at Stand Up for Downs, a very funny guy who also shares some wisdom with his humor;
  • Michelle Helferich from Big Blueberry Eyes, which they really are having met her children at the banquet on Saturday night;
  • Milan Chakraborty, the Producer of the film Produce, starring my friend and Down Syndrome of Louisville member, David DeSanctis–it was so good to hear all the positive reviews, particularly about David’s performance (which having seen it myself wowed me!);
  • Gail Williamson, founder of Down Syndrome in Arts & Media, and her son Blair; Gail helped facilitate the making of Produce;
  • Maureen Wallace, who writes at SheKnows & allParenting, who graciously hosted me as her guest at Saturday’s banquet;
  • Mark Bradford, executive director for the Lejeune Foundation USA, and who’s recently published article I have printed out and look forward to reviewing;
  • Holly Christensen of WhoopsiePiggle.com;
  • Jennifer Meyers Bekin, of talk-ds (even though she thinks I’m “rotten”);
  • Deborah Tomai, of whatateam (hope you had fun in Chicago!).

And, last but certainly not least as I spent pretty much any spare moment I had visiting with them:

  • 10460778_10152569780348308_8692534123438438143_n

    Jen, Jenny, & Jennifer with Down Syndrome Diagnosis Network

    The awesome moms leading the Down Syndrome Diagnosis Network, who shared our resources at the National Center for Prenatal & Postnatal Down Syndrome Resources and I was glad to hear nearly sold out of the stock they had brought of their books Unexpected and Simply Unexpected–well done!

If by chance we met but I failed to include you on this list, please do not take it as a personal slight, but instead appreciate the significant amount of self-induced sleep deprivation from staying up late visiting with everyone that I subjected myself to. I hope you will leave a comment below with a link to your website or blog.

If you have yet to attend the NDSC convention, or have but missed this year, start making plans for next year. It will be held in Phoenix, which should at least provide the lowest hotel rates of the year, given that it will again be held the last weekend of June! I hope to see you there.

Comments

  1. Rotten in the most endearing way possible. Thanks for all you do!

  2. Kathleen Ferrara says:

    So sorry to have missed this year. The timing was bad. But look Out, Phoenix, here I come!

  3. Thanks, Mark! Just to clarify, next year’s convention will be held the last weekend in June.

  4. Great post and I’m sorry I missed it and missed you all!

  5. Dear Mark, I’m a “reader” of your blog and I enjoy it a lot!
    I live in Sao Paulo, Brazil and my oldest son has DS (he is 19 yo now and this year he was approved to 2 colleges!! – Gastronomy). I’m also a pediatrician and I direct an out patient clinic to DS kids and teens in my city. Last year I attended the NDSC meetting in Denver (I loved it) and I’m very excited to go to Phoenix next 2015. I hope to meet you there! Thanks for your thoughts about pre-natal diagnosis. (and sorry for my English…)

    • Congratulations on your son’s acceptance to college–two no less, very impressive. The NDSC convention is a great place for families to meet and I hope we will meet at next year’s convention. Thank you for reading the blog!

Trackbacks

  1. […] had seen only a bit of the film when it was shown at this summer’s National Down Syndrome Congress’ convention. I was surprised by much […]

Leave a Reply

%d bloggers like this: