Don’t ask what’s ‘wrong’ with my son with Down syndrome

I’ve parented a child with Down syndrome — the most commonly occurring genetic condition — for almost six years. Despite a lot of practice, I still find myself caught off guard by strangers’ questions, and I have done a physical and emotional double take if someone asks what’s “wrong” with Charlie.

Because my husband and I knew almost nothing about Down syndrome, learning Charlie had an extra chromosome was scary and, in retrospect, an unnecessarily worrisome time during my pregnancy. The truth is that Charlie is exactly the person he is supposed to be, just like you and I are exactly the way we are supposed to be. We all come to the table with different abilities and different levels of capabilities — isn’t that what makes life interesting?

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Charlie’s different abilities happen to come with certain visible markers, such as his almond-shaped eyes, small ears and small hands. His gait is affected by low muscle tone, and he communicates with a combination of signs and word approximations. These facts make his differences more evident to some people, and inevitably curiosity kicks in.

Truly, I welcome every question as an opportunity to educate, because greater understanding leads to greater empathy. But please choose any of these alternatives to “what’s wrong?” in the interest of my sanity and possibly your nose bone. Each of these can be followed by a straightforward “do you mind if I ask you some questions?” but these are much softer kickers.

1. “What a beautiful child! Is he in school? Where does he go to school?”

Asking about my child’s education after complimenting my husband’s and my genes shows me you have great taste and that you’re interested. I’m also always happy to talk about the tremendous benefits of inclusion, which means teaching children of all abilities with their same-age peers. (Charlie is in kindergarten at our home school!)

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2. “My son loves those swings too!”

Commenting on a similarity between our children is almost a surefire way to get me to open up. But please, check your surroundings, and consider this formula: calm = questions; zoo = move along. What’s going on? If we’re at a playground and making small talk while my children run around, then by all means, broach the topic. If we’re in the checkout line at the grocery store and I’m juggling $232 worth of macaroni and cheese and three screaming, whining children, please tuck your well-intended curiosity behind your ear and move along.

More: Teach kids it’s OK to ask about disability and illness

3. “Happy Down Syndrome Awareness Month! Happy World Down Syndrome Day!”

Are we already friends on Facebook, but my oversharing hasn’t already answered every possible question? Two times of year provide the perfect opportunity for inquiring: October is World Down Syndrome Awareness Month, and March 21 is World Down Syndrome Awareness Day. Showing you’ve been paying attention and know how much these days mean to many in our community can be so impactful.

4. “Would you mind if I asked about Charlie?”

Kindness counts, and so does honesty. I am much more amenable to answering questions from someone who clearly means well and asks permission to broach the topic. But please, before you ask me if we had prenatal testing, show me that you recognize my child is a human being. A simple “look at that beautiful smile!” goes a long way for this mama.

5. “I love to see a child with Down syndrome, because I have such fond memories of [insert name here].”

Sincerity helps. I usually can tell when someone has a genuine personal reason for wanting to connect with me about my child — and I can tell when you’re just being nosy. Maybe your uncle had Down syndrome, or your neighbor’s sister’s college roommate. It can be both endearing and disconcerting when strangers see my child and immediately feel compelled to share their connection to his genetic condition. Mostly it touches me. Sometimes it annoys the bajeepers out of me, because it feels like you just lumped my child into a “them” category. (I’ve often thought the Down syndrome community needs a hand signal to indicate our allegiance. Maybe three fingers in the air, like the Girl Scout pledge but with an extra finger.)

6. “So what’s it like to have two brothers?”

Engaging my other children means the world, because strangers often flock to Charlie first and sometimes outright ignore his younger sister, Emma, and his younger brother, Liam. Please consider all my children. I’ve long dreaded the day my daughter comes home from school crying because someone called her older brother a bad word, but I know the day is coming. Right now, she and my younger son are too young to understand and are rarely interested in adult chatter. But someday soon that’s going to change. Please tread carefully in front of my children — and please don’t assume a child doesn’t understand.

More: Why I didn’t terminate my pregnancy after a Down syndrome diagnosis

7. “Thank you for helping me understand.”

It’s OK to not know the first thing about Charlie’s condition, and it actually helps me want to educate you when you are up front about your lack of knowledge. I know that if you are genuinely interested and willing to learn, then my child is about to turn you into an advocate. Be honest. I promise to reciprocate.

8. “You are an awesome gymnast!”

I adore when someone remarks on Charlie’s abilities. You may have preconceived ideas about what Down syndrome means, but if you get to know my son, you will never underestimate him again. And if I gently correct you, trust that I know what I’m talking about. I’ll never be an expert on Down syndrome or any other condition, but I will always be the most knowledgeable person on the planet when it comes to my children. So go ahead. Ask away!

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