Defending Kids with Down Syndrome: A Life Lesson on Vacation
from Time Health & Family by Bonnie Rochman: On vacation last week in Hawaii, my family took a break from snorkeling azure waters to make a run for shave ice. (For the uninitiated, shave ice — Hawaiians drop the “d” — is the Rainbow State’s superior version of snow cones, powdery crystals that savvy foodies douse with exotic fruit syrups like passion fruit and guava.) Then we joined scores of other care-free kids and parents to stroll the main drag of the touristy former whaling town where we’d gone for our dessert fix. The sidewalks were packed. We saw Steven Tyler in a shark-tooth shop (for real!). My husband spotted my older daughter’s first-grade teacher. And my 10-year-old son wandered into a store targeted ingeniously for boys his age, with whoopee cushions and T-shirts featuring silly, inane slogans. As he laughed his way through the shop, I wandered in after him only to come face to face with what can best be described as the section of the store that makes fun of people with intellectual disabilities. One shirt read “No, I’m not retarded.” The other had a cutesie drawing of a schoolbus and was captioned, “My mom tells me I ride the little bus because I’m special.” I froze. I looked around to see if any other adults had read the T-shirts and shared my disbelief. As I was still processing the messages on the shirts, another family ambled in. With them were their children, including a son with Down syndrome.
I felt panicky. As a mother, I wanted to turn those T-shirts around so that the other mom, the one who gave birth to a boy with Down syndrome and is doing her best to raise him in a society that is not always kind, wouldn’t see them and be forced to worry on vacation about the way our culture treats children like hers. But I wasn’t quick enough. The family was heading straight toward those shirts. Flustered, I barked at my son, who hadn’t seen the shirts, to come outside. “We can not stay in this store,” I told him sharply. My son and my daughters, ages 5 and 7, were confused. “This store is making fun of people with Down syndrome,” I told them. What’s Down syndrome? asked my kids. I explained to them that people with Down syndrome are born with an extra chromosome and that chromosomes help determine how people think and act and look, what they like and dislike, what they’re good at and what’s a struggle for them. The extra chromosome that people with Down syndrome carry makes their brains work differently than most people, I told my kids; it also makes it more likely that they’ll have trouble with their hearts. They are slower to learn things so that a 10-year-old with Down syndrome may or may not know how to read. They may grow up and not be able to live on their own and get married. Or, I told them, if they get the right support and help they need, they could also go to college and have their own children.
I didn’t tell them that children born today with Down syndrome enter a world of early interventions and expert medical care that continues to improve the quality of their lives. Nor did I share that this is happening just as a battery of new prenatal tests are increasingly able to detect the condition earlier and earlier in pregnancy, allowing women to potentially terminate affected pregnancies sooner. That was far too sophisticated a conversation to have. Instead, we focused on how to treat people with respect regardless of what they look like. Being different is not a reason for ridicule. It was an important lesson, albeit one I wish I hadn’t had to teach. If you see someone being mistreated, I told my children, you stand up for that person. I wish I’d done that, wish I’d had more presence of mind at the time and marched up to the saleswoman to let her know that messages of disrespect directed toward people with mental retardation are unacceptable. That’s exactly what the mother of the boy with Down syndrome did, her voice trembling, as my family and I watched from the open-air entryway. As one mom to another, I couldn’t help but tear up. I offered a big smile and thanked her for speaking out as she walked toward the sunset with her family, holding her son’s hand tightly.