March 21st was World Down Syndrome Day, as I’m sure your social media scrolling made obvious, and this year’s theme was “End the Stereotypes.” It’s human nature to make quick judgments on people and situations, but it’s what we do with those judgments that shift our society closer to or further from equity.
Federal Advocacy
My 8-year-old daughter, Hope, and I had the privilege of lobbying on Capitol Hill this week on legislative priorities that directly impact the Down syndrome community. Organized by the National Down Syndrome Society, we spent one day training on four separate bills in various stages in Congress and the next day taking meetings with our New Jersey delegation of about 10 people, depending on the meeting, with congressional representatives, senators, and/or their staff.
Among our group of 10, we had three self-advocates. A man who is 30 years old spoke passionately about holding competitive employment, despite his friends who are stuck in “training workshops” that never actually place the individuals in paying jobs, as well as his fear of early early-onset Alzheimer's disease, which plagues the Down syndrome community at horrifyingly increased rates compared with the general population.
A young woman who is 19 years old spoke to her desire to earn and save money and get married one day, two things that are at odds with one another for those on social security income, which caps assets at $2,000 for an individual and $3,000 for a couple, commonly referred to as the “marriage penalty.”
Imagine that!
Local Advocacy
What was meant to be a simple playdate at an incredible art studio in Westwood, Yellow Door Art Studio, grew into a community-wide celebration and Ridgewood Village Council presentation of a Proclamation for World Down Syndrome Day. Inspired by the new children’s picture book I am a Masterpiece! by Mia Armstrong, we ended up with 21 children with Down syndrome and their siblings creating self-portraits on canvas, which are currently hanging for a limited time in Ridgewood’s Village Hall.
Families also passionately embraced the “Rock Your Socks” campaign, which encourages wearing mismatched, silly socks to raise awareness and open the conversation about the extra copy of the 21st chromosome that causes Down syndrome. Others had the opportunity to go into their children’s schools and read stories with characters who have Down syndrome or lead hands-on activities with the students.
I am disappointed to hear that some schools in our area resisted participating in World Down Syndrome Day, which comes to us through the United Nations, but I’m not discouraged. Our community grows stronger year after year, and we’re not going anywhere. One person, one administrator, one principal, one leader cannot change what we know: Our children are EXTRAordinary!! And it is our deepest pleasure to know and love them, and to accept their love in return.
Please enjoy clicking around and sharing some of these resources with your families. And as always, thank you for your support.
Happy (belated) World Down Syndrome Day!!
Resources
Picture books:
-Different: A Great Thing to Be by Heather Avis
-You Are Enough: A Book About Kindness by Margaret O’Hair
-Born to Sparkle: A Story About Achieving Your Dreams by Megan Bomgaars
Movies and documentaries:
Elena Croy is an ordinary mom learning life’s lessons from her two extraordinary children. She and her husband are raising their little girl, who has Down syndrome, and their son, who was born with upper limb differences, in Ridgewood. Elena chronicles their challenges, triumphs, and goofiness at AtHerOwnPace.com. Elena is proud to serve as a grassroots Down syndrome advocate for the National Down Syndrome Society.