Top Ten List of What My Kid with Down Syndrome Doesn’t Get Because I Work for the Local DS Group

Tue, July 03, 2012 1:30 PM | Anonymous member (Administrator)

By Amy Van Bergen, DSACF Executive Director and DSAIA Vice-President

People often think that because I work at our local Down Syndrome Association that my family or my child with Ds receives all sorts of perks. Because of that perception, the truth is quite different and our board has set policies to ensure that there is no favoritism for relatives of staff or board members.

Top Ten List of What My Kid with Down Syndrome Doesn’t Get Because I Work for the local DS Group:

  1. His/Her photo on the cover of the Annual Report (or anywhere inside either!)
  2. A starring role in last year’s fundraising fashion show
  3. An opportunity to serve as our Step Up for Down Syndrome or Buddy Walktm Grand Marshal
  4. A chance to win a free laptop (as part of a giveaway to all of our school-age students with DS in a 7-county area)
  5. Free tickets to the local amusement park/children’s museum/nature center
  6. Discounted or free registration to any of our children’s programs (in fact he doesn’t even get to attend them if space is limited and/or I am involved in running the program.)
  7. His/Her photo or quotes in any of our awareness materials (new parent welcome packets, newsletters, website, social media, advertising banners, etc.)
  8. A chance to present at any of our association-sponsored workshops or conferences (even though he prides himself and is quite accomplished as a self-advocate and public speaker.)
  9. A chance to compete in any of our contests for individuals with Down syndrome (such as last year’s art contest, drawings of chance, talent show, etc.)
  10. To serve on our board of directors, self-advocates advisory board, or staff.

(Amy Van Bergen is the Vice-President of Down Syndrome Affiliates in Action as well as the Executive Director of the Down Syndrome Association of Central Florida. We thank her for her tongue-in-cheek –yet honest – portrayal of the endless sacrifices that both parents and children make on a daily basis to serve the larger DS community.)


  • Wed, July 18, 2012 11:05 AM | Anonymous
    Glad you wrote this. I could add that for my family, mom is often not home and misses a lot of sports, plays and other family opportunities because I am at a meeting or DS Event. God bless my family for still loving me, even if I am not Becky-Home-ecky.
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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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