Some mom friends and I were discussing our plans to bring World Down Syndrome Day into our children’s schools this year, and I just had to take a step back from the conversation because the love that was mounting was about to break through an emotional boundary I’d unknowingly imposed on myself.
Every year we go through this, figuring out what’s an appropriate activity or discussion for our children’s current ages, including whether or not it’s even appropriate to discuss a Down syndrome diagnosis with their peers. Then of course we need to get clearance from our schools, which has proven trickier throughout the pandemic.
The pressure we experience comes from outside expectations. Pressure comes from trying to understand where our children’s peers are developmentally, a gap which widens as time goes on. Pressure comes from feeling like we have to have all the answers. Pressure comes from within as we strive to build as sturdy a bridge as possible between our children and their school communities, which are often populated with well-meaning people operating within systems that are both exclusionary and rampant with bias.
“What is most important to us for our son, James, is for him to be fully included in his community, to live a productive, fulfilling, and connected life,” shares Courtney Randazzo of Upper Saddle River. “We want this full inclusion to start at school. I hope that inclusion of all learners will become the norm so as to prepare all children for the beautifully diverse community they will enter after school.”
Regardless of what each of us has planned for our children and their classmates on Monday, March 21st, one thing is certain: We are celebrating the magic that comes from within our children who have been blessed with Down syndrome.
“When you have a child with Down syndrome, your family grows in ways you can’t imagine,” shares Romeena Longazel of Waldwick. “The outpouring of love and support from the Down syndrome community, our family and friends makes our journey a little ‘easier’ on the harder days.”
That mounting love I mentioned? The pressure caused when the love meets a boundary? This is the blessed part: The love bursts through. A new boundary is created further off, love having more and more room to grow. The love blends with knowledge and understanding and radiates out to anyone brave enough to observe it. Minds grow and hearts change. This is what World Down Syndrome Day is—a day to challenge the norms that have led to barriers we must chip away at year after year. A day to interrogate whether Down syndrome should even be considered a birth defect, as the World Health Organization says it is, or what we have come to understand, which is simply that Down syndrome provides a different and perfectly wonderful way to exist. As parents of these beautiful children, we understand something that isn’t always so evident from the outside: Down syndrome is a blessing.
So let these kids into your classrooms, your studios, your camps, your programs, your sanctuaries, and if you’re lucky, you might just catch a glimpse of the magic. But you’ll never know if you don’t try.
Happy World Down Syndrome Day!
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 an upper limb difference, in Ridgewood. Elena is taking a break from social media and can be found chasing her little ones around such exotic locations as the Ridgewood Duck Pond and Raymond’s restaurant downtown. She continues to chronicle their challenges, triumphs, and goofiness at AtHerOwnPace.com.