Dear Down Syndrome, Stop Trying to Take Credit for My Son’s Personality

Dear Down syndrome,

I realize letters don’t usually have headlines, and this one has already cut right to the point, but there it is — stop trying to take the credit for who my son is.

Here’s the deal, we all know when you’re involved there are often well-documented and usually treatable medical issues, like the fact that about half of the people with Down syndrome are born with a heart defect. My son, as an example, had surgery as a baby, and now he’s a strong, healthy young man. I give you full credit for this medical complication.

There are also other non-medical characteristics considered common in people with Down syndrome. For example, recently I received a note on one of my articles about Marcus: “You should mention how loving ‘they all are.’” That, in my opinion, is a generalization that you, Down syndrome, take credit for, and frankly, I’m not going to give it to you.

Number one — any statement that includes, ‘they all are’ is dehumanizing, so stop encouraging people to say it.

Number two – is this a self-fulfilling prophecy? I see strangers approach my son with open hearts and open smiles all the time. I’m a good person, and I try to be pretty nice, but strangers don’t generally approach me in this way. Much more to him. Those strangers and their families were taught the social norms to hold back — to evaluate and to discern. Yet, they see Marcus and openly pursue interaction and validation. Only with Marcus do they give themselves permission to be loving and open. How do you think he responds?

Number three — my son is loved and returns love. He shares encouragement because he’s encouraged. He’s also an introvert and doesn’t go out of his way to hug or high five every stranger, and he prefers for people to respect his personal space. That said, like any other young man, if he meets a lovely celebrity, he may then suggest, “What about a hug?” But come on! Who wouldn’t?

Here’s another thing, Down syndrome. Stop claiming you’re responsible for Marcus’ amazing storytelling skills. You’re involved in every cell in his body, but don’t forget — so am I. I like to think I’m creative. I love theater. In our house there is art, there is music, there is role playing and characterizations, and there is improv. Yes, I know that John Langdon Down documented the amazing dramatic caricatures his patients could create with their facial expressions and body movement. And yes, I know people with Down syndrome can have strong memories, thus enabling them to enjoy and recreate their favorite show or film with ease.  These things don’t account, however, for the many original story lines, twists and complexities Marcus invents, and they are his, not yours.

Also, there are still many things we don’t know about genetics and how our cells work together to make us who we are. We don’t yet know where the balance lies between what we’ve been exposed to and what comes from within us to drive our dreams and ambitions. Seriously, Down syndrome, is it really that you enhance creativity or is it that you’ve actually just muted the fear of failure? Is this triplicate really responsible for quieting the internal editor, that nagging sense that holds so many people back? Maybe with this doubt quieted, more of us would allow our creative spirits free reign.

Marcus’ busy brain creates unique and expansive stories because he’s creative with every fiber, not just because of Down syndrome, not just because of me, and not just because of any one story, film or class. The magic something that makes every person their own, that slips between each cell, through our genes, under our skin: That’s what makes Marcus… Marcus. Only he deserves the credit for that.

Follow this journey on GrownUpsAndDowns.com.

The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post to community@themighty.com. Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.