National Down Syndrome Congress-always there for us.


I visited the National Down Syndrome Congress offices in Roswell, Georgia, last week and had the privilege of chatting with David Tolleson, Executive Director; Sue Joe, Communication Director; and MaryKate Vandemark, Office Manager.

The visit took me down memory lane, recalling that, beginning some 30 years ago, the NDSC was at the center of our strength and resolve.  In addition to contacting the central office at various times for myriad reasons, we would travel each year to the national convention where we gained information, support, and confidence to come back home and fight for Casey’s rights.

We also made friends from all over the country.  Since this was in the days before ‘social media,’ we would keep in contact by ‘long distance’ phone calls.  Because long distance calls were charged by the minute (think about when you are over your minute plan), our April phone bill would be huge each year as those of us at the tip of the arrow of inclusion would call each other from across the country for ideas and support.

I must say that I am disheartened to find that the fight for inclusion still goes on.  I have recently received calls from several families whose children have been automatically placed in ‘life skills’ kindergarten classes.  In these segregated classrooms, academics are low priority.  Instead, preparing for managing the mundane must  begin at age 5 or 6.  Do these school principals really feel it takes that long for ‘our kids’ to achieve basic life skills?

If you ever feel you are ‘alone’ in trying to advocate for your child’s most basic civil and educational rights, remember you have resources available.  I still credit the workshops we attended at the NDSC conventions with changing Casey’s life—and ours.

Make plans to attend the 2015 Convention in Phoenix.  Look for us!  And until then, contact the national offices for information and support.

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