Checking Boxes: Beyond Down Syndrome | World Down Syndrome Day

Written By Cristen Reat
To honor World Down Syndrome Day, Cristen is sharing the story of her son Vincent.

Since my son Vincent turned 15, I have been obsessed with labels. Though he was born with Down syndrome, on a day to day basis I don’t remember this diagnosis. In fact, I rarely think about it until I am confronted with a form. As he grows ever closer to the magical legal age of 18 where he suddenly transforms into an adult, the labels evolve.

The label of Down syndrome is one of many that we have acquired along the disability journey. Others include autism, hyperlexic, cortical vision impairment, neurologically different, sensory defensive, immune-compromised, and the list continues.

I once attended a support group meeting where a mother of a child with a disability was asked, “What is your son’s diagnosis?” She answered “It depends on what you are offering.”  I laughed out loud because I knew exactly what she meant!  In the current educational climate, certain diagnoses secure more services over another; in the community setting a particular grant may fund a program that includes a particular disability, but may exclude others.  In a world filled with categories and boxes to check we constantly ask ourselves where we do we fit, where do we belong?

Vincent was eight years old when the United Nations declared March 21st as World Down Syndrome Day to raise public awareness about this condition (third month, 21st day, 3 copies of chromosome 21, get it?) That same year, 2011, saw the launch of the MaterniT21 prenatal test for Down syndrome. In the first context, a label to be honored and celebrated. In the second, a diagnosis that can cause anxiety and fear among expectant mothers and fathers. For families who have a loved one with Down syndrome, we long to look past the label and wish for others to do so – and simply see a human being with strengths and challenges.

In preparation for World Down Syndrome Day, Vincent and I took an inventory of his socks. For the DS community, it has become traditional to wear crazy socks on March 21st. We decided to make a collage of his favorites, since wearing them all at once, I explained to him, is impractical. Since Vincent does not use scissors safely, nor is glue a preferred activity, we approached this task with technology.

Using our smartphone and the free Pic Stitch app, we took pictures together, and he was delighted to create a colorful collage, glorifying the spectrum of his wacky socks. Today and every day, we belong to the Down syndrome community and celebrate Vincent’s life along with thousands of others around the world. Looking at the collage, I realize that each aspect of his being – whether we call it characteristic, label, or attribute – makes up the collage of what makes him unique. Tomorrow, we will see what new boxes we there will be to check.

BridgingApps has updated some of our favorite apps for people with Down Syndrome.

Young Children with Down Syndrome List
Middle & High School with Down Syndrome List
Transition & Independence Down Syndrome

Also, Check out Don’t Stop Me Now – World Down Syndrome Day video by Wouldn’t Change a Thing to help spread awareness.

Leave a Reply

Your email address will not be published. Required fields are marked *