What Down Syndrome Can Teach Us Now
by Katie Carper
When I married nearly 20 years ago, I never dreamed I’d be parenting four kids, one with a dual diagnosis of Down syndrome and Autism. I had no intention of managing what feels like a circus most days–not that I was opposed to circus life or extra chromosomes–I just wasn’t thinking about motherhood in any form when it chased me down and caught me.
After birthing my two oldest and struggling with post-partum depression, I waved the proverbial white towel, calling a truce with my mind and body. I needed mental space and rest to find my sanity (and sleep) with two little ones.
But, dear readers, babies just don’t keep. Eventually, onesies morphed into t-shirts, sleepless nights rolled into sweet dreams, and my once helpless cherubs began to feed and dress themselves.
I shed the zombie look (sort of) and my capacity to form coherent thoughts returned at last (still debatable). This was the season in which I sensed a holy nudge, a gentle voice asking, “Are you willing to rethink your own ideas about your family and future?”
As many of you know, that nudge led to prayers and conversations and new dreams and, eventually, a baby boy with Down syndrome–our Sam.
Prior to Sam’s arrival, I read all I could about Ds, sought advice from experienced parents and professionals, and grew in my awareness of potential issues related to this particular diagnosis. I researched possible medical complications, physical care, therapies and education, finances, future work, state and federal policies, and our culture as it relates to people with disabilities. Even with my experience working with people who have Ds, months of personal education, and now 8+ years of parenting Sam, I’m still discovering new truths and learning important lessons.
In a time of divisive politics, hateful rhetoric, and social media outrage, I want to highlight this truth as we celebrate Down Syndrome Awareness Month:
Choosing to believe stereotypes creates distance between ‘us’ and ‘them.’
While Ds is its own culture with a handful of common traits (and a dual diagnosis even more specific), people with Ds are individuals. Each person brings their own genetics, personality, family, life experiences, needs, preferences, education, and more. Just because we might know a few people with Ds with a certain disposition does not mean they all share that disposition.
Like any people group, those with Down syndrome cannot be put into a ‘one-size-fits-all’ category. When we do that, we miss the unique gifts found in each person.
Choosing to believe stereotypes about those who’ve been labeled ‘the other,’ can actually prevent us from connecting with people who differ from us, who have different life experiences, who look at the world through a lens other than our own. We take one conversation or experience or person and craft stories about what we think is true of an entire group and as a result, fail to see the Divine imprint on each human.
In our biases, we may write another narrative, one that pens an incomplete, often negative story. Confident we have the whole truth, we often assign motive and value to groups of people we haven’t taken the time to know. Instead of graciously moving toward individuals, we use our limited knowledge and assumptions to determine whether to engage ‘the other.’
I wonder who we miss when we do this?
I’ve noticed people writing a limited story about Sam. In social settings, I watch as kids and parents determine his physical differences. Most observe that he doesn’t engage like a typical peer, his mannerisms unexpected, his delays perceived as a nuisance. I witness the furrowed brows, rolled eyes, heavy sighs, and the turning away to avoid him–my son, the ‘other.’ With imaginary pen in hand, they seem to hastily note, “I don’t know how to relate to him. I’m uncomfortable. I’m going to find someone who’s more like me.”
I grieve not only for what this incomplete storytelling means for Sam as he begins to understand his differences but also for what those kids and their parents are missing by choosing to ignore him.
I wonder what we might be missing, too, when we don’t acknowledge the divine beauty of others when we refuse to find ways to connect with those who differ from us.
Sam’s life reminds me to resist the easy route of stereotyping, to lean in and listen to those whose perspectives and lifestyles don’t mirror my own. Down syndrome spurs me on to move closer to others so I can more clearly see the image of our creator in each person and love them as I’ve been loved.