When a child with Down syndrome outgrows ‘cute’ — a dad’s fears

By Charles Moss

Special to the Washington Post

My 4-year-old son Emmett is adorable. I know, parents say that about their children all the time. But in Emmett’s case, he really is. Strangers attest to it at Costco and Publix and at our local children’s museum. Even Mayim Bialik, of “Blossom” and “The Big Bang Theory,” risked her anonymity at a Legoland in Atlanta to tell us how cute Emmett is.

Of course, they are right.

Emmett also has Down syndrome.

Because of the extra copy of chromosome 21, he has a few physical characteristics that define his condition. He has an enlarged tongue, which, in turn, forces him to keep his mouth open in a resting position most of the time. A lot of the photos we have of Emmett capture him in this position, with his tongue sticking out ever so slightly. This, in combination with his flattened facial features, low muscle tone, small stature and large, upward-slanted eyes are what make people notice him.

His outgoing, energetic and strong-willed personality, however, are what endear him to people.

He smiles more than any person I’ve ever met. And these aren’t just your average small smiles — half-curled, closed lips. In fact, to call them smiles would be wrong because they are much more than that. They are, by all accounts, insanely huge, contagious bouts of laughter and screams of joy that are unable to be contained in just the shell of a smile.

But it won’t always be like this.

What people see right now — myself included — is an adorable little boy with Down syndrome. He knows no strangers, is affectionate (sometimes overly so), and his inability to enunciate properly is cute and sometimes encouraged.

But what happens when he grows up, when he becomes a man? What happens when he still has trouble speaking, when his looks are no longer considered adorable but are seen as ugly, because he may not look like everyone else?

What happens when Emmett has trouble holding down a job or finishing school or living independently from us? What happens when he becomes an adult and he still has a personality equivalent to that of an 8- or 9-year-old?

This is my fear.

When he is an adult, Emmett will no longer be able to play the cute card. His world will be a much more difficult place. He will be looked down on, made fun of and bullied. At the same time, he will be coddled, felt sorry for and allowed to take shortcuts because of his looks and lower-than-average-intelligence.

And he may allow his Down syndrome to define who he is.

Sometimes, as I watch Emmett struggle to communicate with us, trying to find a way to express what he’s saying in sign language or with other physical movements, or trying over and over again to pronounce the word he’s trying to say, but we’re left clueless, I’ve felt my eyes well up because we are just starting to experience what life might be like for him as he gets older.

A few weeks ago, I picked Emmett’s older brother up from after-school care and I saw a girl, no older than 11 or 12, sitting by herself in the cafeteria, among throngs of other children playing in groups — joking, laughing and enjoying each other’s company.

Although this girl seemed to be perfectly fine sitting by herself, I thought about Emmett and how one day, most likely soon, this might be him.

I think about scenarios like this all the time. My wife, Vanessa, thinks I worry too much. She’s right. But whether we want to think about it or not, Emmett has a rough road ahead.

A geneticist’s stats

When we were first told that our soon-to-be-born baby had soft markers that indicated a risk for Down syndrome, Vanessa was a little more than halfway through her pregnancy. We were advised by doctors, friends and family to read all we could about the condition. And at first, we did. But the more I read, the bleaker Emmett’s future seemed.

We were also advised to see a geneticist, so we did.

I remember the woman telling us very coldly what to expect from Emmett’s future. In her tiny, windowless office, and again in a formal letter, she told us, “People with Down syndrome have an I.Q. ranging from 20 to 70 and sometimes slightly above this, with the average being 50 to 60. Most are moderately retarded. This means that as adults, they will probably not be fully capable of complete self-support. This also means that individuals with Down syndrome are generally capable of schoolwork in a special setting.”

She was managing our expectations.

Understandably, it was her job to give us the facts. But we felt like she was reducing Emmett to a bunch of statistics. She was telling us all of the things Emmett would not be able to do in his life, and he wasn’t even born yet.

She did her due diligence and gave us some literature to read. And over the following months, Vanessa and I began our research. But when Emmett was born, we stopped researching. We never started back.

Vanessa and I made a conscious decision not to pursue further research. Because Emmett was a healthy, happy baby and the issues we might eventually struggle with were a few years down the road, we felt there was no reason to worry ourselves at the time.

We also didn’t want to limit Emmett’s abilities as he grew older. We didn’t want to be constrained by what the research said he would or wouldn’t be able to do.

Just like my other son Noah, I don’t know what to expect regarding Emmett’s future. But I know that the more research I do, the more his future will begin to be defined. Because, subconsciously, I will start treating him accordingly, letting the books and articles I read dictate what his future will look like.

Instead of treating him like his older brother, I will begin to treat him like someone who can’t do the things other kids can do.

I will start to treat him as someone with Down syndrome. And that scares me to death.

Relying on himself

A few weeks ago, I watched Emmett climb up the ladder of a bouncy house. At first, he struggled with how to tackle it because he was too small. He reached his hand out for my help, pleading, “Daddy, Daddy.”

Initially, I reacted. I tried to climb into the bouncy house to help him, to push him up from his little behind, so the kids lined up behind him wouldn’t have to wait any longer.

But then I noticed he was climbing the ladder on his own. He had discovered another way to climb it, his own way. And once he found his traction, boy, was he fast!

I know Emmett will always have a little extra help in his life. I know there will be things that he just won’t be able to do because, well, he’s human. His Down syndrome will play into how he’s treated as an adult, what kinds of jobs he’ll have and his relationships. His quality of life will be different from his brother’s.

But as I think about little Emmett climbing up that bouncy house ladder, it gives me comfort to know that he won’t allow his Down syndrome to define who he is as a person and how he lives his life.

He’ll find a way to get around it.

Charles Moss is a writer and father based in Chattanooga, Tennessee.