World Down Syndrome Day

Before our daughter Julia blessed our family in 2010, I had limited experience with individuals with Down syndrome. I did not know anyone with Down syndrome at that time and only had limited memories of interacting with someone with Down syndrome throughout my life. Now as a member of this special community, I understand the importance of World Down Syndrome Day and am honored to have this opportunity to sharewith you.

Let’s start with what it is. 

World Down Syndrome Day was established by the United Nations in 2012, just over a year after our daughter was born, but it has been celebrated unofficially since 2006. It is March 21 every year, which signifies 3/21 – or three copies of the 21st chromosome, which is the cause of trisomy-21 or Down syndrome.

Why is it important to have a global day to recognize and celebrate individuals with Down syndrome? 

The short answer – individuals with Down syndrome continue to be marginalized and face discrimination – both before and after they are born.

The sobering reality is that the majority of babies who are prenatally diagnosed with Down syndrome are terminated before they are born. This is mostly due to outdated and negative perceptions by both the medical community and our society as a whole. Parents often only receive “bad news” about their baby. They aren’t given information on the great resources available. And many may struggle to envision the wonderful gift their child can be to their lives.

Don’t get me wrong, when we received Julia’s diagnosis when I was around 18 weeks pregnant, we grieved over what we had expected for our unborn baby. But we also knew that God was with us through this new path in our parenting journey.

For babies who are born with Down syndrome, unfortunatelythey continue to face discrimination through their lives in access to medical care, in school, in their communities, and in the workplace.

In regard to school, it’s still widely accepted to separate students with Down syndrome from their typical peers in school, even though the Individuals with Disabilities Education Act (IDEA) states students with disabilities should be educated alongside their typical peers to the maximum extent possible with all necessary supports and services.

Decades of research supports the benefits of inclusion in school. Students with Down syndrome who are educated in inclusive environments often have higher reading and math skills than those who are taught in segregated classrooms. And it’s important to note that typical students often also achieve more when educated alongside students with disabilities, while also learning critical life skills like empathy, patience, acceptance and compassion toward those who are different.

Our daughter has experienced the benefits of inclusion in school. And we have had parents of her typical classmates, teachers and paraprofessionals express how grateful they are for Julia’s presence in their lives.

As adults, there are still outdated policies that limit individuals with Down syndrome from living full, thriving lives.Thankfully, policies like sub-minimum wage are slowly being banned. However, for a couple with Down syndrome who wantto marry, it could impact the benefits they receive. It is also common for individuals with Down syndrome to not get the same medical care as a typical person. For example, they are often denied access to an organ transplant.

This is also an opportunity to become an advocate beyond March 21st. You can do this in simple ways:

• Acknowledge them when you’re out and about
• Speak up for them if you see discrimination happening
• Teach your kids about differences and how they make our world a more beautiful place
• Model kindness and friendship to a neighbor or classmate with Down syndrome.
• Volunteer with a Down syndrome organization like GiGi’s Playhouse Detroit Down Syndrome Achievement Center.

As a parent of a child with Down syndrome, I believe Julia and her friends are uniquely created by our Heavenly Father. The joy, empathy, love and acceptance they show others is an example for all of us. They teach us to be better, kinder and more accepting humans if we open our hearts and lives to them.

Jocelyn Cook (Abide Board Member)

Photos by Chris Cook