Just a few nights ago, I was consumed with the bath-and-bed routine, like I am every evening at about 6 p.m. I was holding a bottle of Dove body wash and Yaakov wanted me to pour some for him. He communicated it very clearly: He extended his hand and told me “maw.”
As he extended his palm, I noticed his simian crease and I remembered that he had Down syndrome. I remembered because sometimes I forget.
I don’t forget because he’s advanced so much. I don’t forget because he knows how to blow his nose and throw out his tissue. I don’t forget because he can ride on a scooter, balancing and propelling with his legs.
I forget because he’s Yaakov and he’s my child, and he goes to school. And, oh right, he has Down syndrome.
But some people do the opposite. They remember Down syndrome but they forget Yaakov. Whenever I go places with Yaakov, people are always telling me, “Oh, I love Down’s kids. They’re so cute,” or “I work with Down’s kids. They’re my favorite! Can I play with him?” It’s as if Down syndrome is a brand name and everyone wants to take photos with “it.”
I read a letter once that really brought my message home. A magazine published an advertisement for a grocery with an adult who had Down Syndrome posing as the manager. A mother of a child with Down Syndrome wrote in explaining that the ad did not impress her as it seemed like “contrived equality.”
Exactly. In an effort to neutralize Down syndrome, everyone begins to overcompensate.
When people start saying, “Kids with Down’s are so (fill in the blank: special, angelic, holy, friendly, smart…)” I stop listening. The extra genetic material of chromosome 21 doesn’t contain any of those qualities. In my opinion, many of the qualities that kids with Down syndrome share are merely a result of their limited cognition. Individuals with Down Syndrome are particularly nice and sensitive because they don’t have the smarts to beguile and deceive. They’re caring because they are genuine. They don’t share a mystical “nice” gene.
What is true is that kids with Down syndrome are part of a family — their family. Their personalities, likes, and dislikes are influenced by Down Syndrome, but they also strongly resemble their parents and siblings. When I see Yaakov say “Hi!” to everyone in the street, I’m not thinking about Down syndrome. I’m thinking that maybe he’s outgoing like me, his mother.
Don’t get me wrong. I love compliments and so does Yaakov. Notice his accomplishments that are so hard-won. Tell me and my husband how delightfully cute he is. Ask about his life and all the special learning techniques and therapies. That’s what you do when you talk to anyone — you show interest in their life and in their unique circumstances and challenges.
In short, don’t love Down syndrome. Love Yaakov.
(Originally featured in Family First, Issue 612)
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