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Parenting my kid who has Down syndrome isn’t all rainbows and unicorns

When a mom writes a letter to the doctor who kept telling her to abort her baby with Down syndrome, telling him how wrong he was, chances are good it will go viral.

“Oh my God!” we think indignantly. “The nerve! That baby is beautiful! All life is precious!”

Then we share the post along with pink twirling hearts and gaping-mouthed smileys to show our support for this beautiful almost-aborted baby. Maybe toss in a unicorn or a rainbow.

But what are we really accomplishing?

Let’s get past sharing it with all the smiley faces and unicorns and rainbows, because that pedestal message is actually part of the problem. Pretending that having a child with Down syndrome is one rainbow fart after another does a serious disservice to people living with — thriving with — Down syndrome.

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My eldest son has Down syndrome and is in a general education kindergarten class. He is the only child in his school with Down syndrome, and the school district has given him the fancy title of Exceptional Child.

I also have a daughter and another son. I see a scenario happening in our future when one of them catches wind of Charlie’s Exceptional Child status. I mean, are Emma and Liam truly less exceptional? Why do we feel the need to compensate for a child’s difference by putting them on a pedestal with words like “exceptional” and “special”?

And why do so many people indignantly share the message that a child with Down syndrome deserves to live when around the world most women abort a child with Down syndrome?

The reason comes down to one primary truth: Most members of the medical community don’t receive education and training about what life with Down syndrome can be like today. Many were raised in a time when children with Down syndrome were institutionalized and deemed worthless. Not that long ago, people with Down syndrome were considered incapable of contributing to society. Heck, I’ve encountered people today with that view.

Emmy’s mom’s touching letter can help change that.

Let’s share the message that this family can’t imagine life without Emmy, but let’s not sugarcoat the experience. Let’s be real. Let’s tell the truth. Parenting a child with an extra chromosome may not be the easiest, but it won’t be the hardest, and it can be amazing and filled with so much love.

Sound like parenthood in general? Exactly.

Because as much as I sometimes feel an almost panicked need for the world to see my child as amazing, I will be more trusted and respected if I share the truth. We need to balance the message that a person with Down syndrome is amazing with facts about the challenges that can face someone with Down syndrome, all with the goal of minimizing those obstacles to give every person the best chance at a happy, productive life.

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It’s OK to be honest. The story in Emmy’s mom’s letter is right: Every child is perfect.

But every child is also imperfect. Do we see imperfections only in the womb, or in third grade with a dyslexia diagnosis? (Or in preschool, when our little one’s emotions become too much for him to manage and he communicates his dismay to a buddy via a whack in the noggin with a dump truck? Hypothetically, of course.)

When a child becomes disabled at the age of 8 or 10 or 12, do we see that disability as an imperfection, or as a challenge to overcome? Does an adult injured in a car accident become less of a human because she now moves via wheelchair?

It’s all about perspective, and Emmy’s letter’s popularity gives us a tremendous opportunity to change the outlook of people you know in the medical community. The fact is, every medical provider has the obligation to inform an expectant mother about all her choices if any issue arises during her pregnancy. Those choices include abortion. But instead of railing against the idea of abortion, what if we poured our energy into ensuring that every member of the medical community is accurately educated through unbiased, balanced information?

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Push for education. Demand that every medical school make that letter mandatory reading for every student, but also demand balanced information to accompany it.

The Joseph P. Kennedy, Jr. Foundation’s Understanding a Down Syndrome Diagnosis is an accurate, balanced and up-to-date booklet for use when delivering a diagnosis of Down syndrome. It’s part of the National Center for Prenatal and Postnatal Resources at the University of Kentucky’s Human Development Institute. The booklet is the only prenatal resource to have been reviewed by representatives of the national medical and Down syndrome organizations and is available in both print and digital formats, and some in the medical community refer to it as the gold standard for delivering a diagnosis.

Printed copies are free for medical professionals and expectant parents; digital books are free to everyone. Printed copies may be requested through a medical provider, or anyone can download an ePub via smartphone, tablet or desktop computer.

Stephanie Meredith created the materials when her son Andy was young. Today Andy is like every teenager I’ve ever known, who would like to be Batman and also wants his mom to quit talking about him. Sorry, Andy. We moms can be like that — we’re just so damn proud of every one of our kids. You are all exceptional. You are all flawed — just like your mamas, but that’s an article for another day.

My eldest son, Charlie, has opened my eyes to what it means to be viewed as disabled in our society, and just like Stephanie, I will fight every day to change the response from one of pity to one of optimism. One of truth.

Rail against abortion, but push for education. Don’t just say, “Yes, Emmy, Charlie and Andy deserve to live.” Show us by advocating inclusion in classrooms, workplaces, soccer fields and church. Show us by ordering Lettercase materials for your OB’s office today.

Fewer rainbows. More action.

Before you go, check out our slideshow below:

potty training tweets
Image: redaramirez86/Twitter

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