Down Syndrome

There’s Still a Lot of Work to Do

Sometimes when I’m working on my Down syndrome stories I start to believe that the world has changed more than it actually has. Some moments remind me that my life is just my own personal perception, and that we each have our own.

Perception: a way of regarding, understanding, or interpreting something

When I’m researching, I read stories about Down syndrome people who are truly doing marvelous things in their lives. I read about people who are helping them, accepting them and are inspired by Down syndrome people. It’s easy to find these stories nowadays. Sometimes I wonder why I should even write a book. There are already so many stories about the rise of Down syndrome people and the wonderful gifts of love and acceptance they can give us, more readily than most.

This is why the woman at the basketball court shocked me. My thinking was caught in the loop of my own perception. When I saw with my own eyes that she was afraid of my fourteen-year-old Down syndrome son, I was snapped out of my bubble and saw her very, very different perception of him. And it hurt.

She held a seventeen-month-old baby girl. There are three things that my son is attracted to (well, four if you count the new one: girls): music, dogs, and babies. He can’t resist. He is gentle and kind and sweet with babies. If they are crying, he just wants to fix it. If he can make them laugh, he is delighted. He is protective, nurturing and loving, like a parent or a big brother.

I’m not angry that this mother pulled away. I must always tell my son not to touch babies because some people don’t like it. But, in her pulling away there was something more. And the overwhelming feeling I felt immediately was sadness. She was truly afraid. My perception of the look in her eyes was that she was anticipating that my son was going to physically harm her baby. She turned away and protected her baby with her body. She took steps back from him while keeping her eyes on him.

I was just a few feet away and coming closer, asking him not to touch the baby. He was cooing at the baby and saying hi. As I approached, I told her how much he loves babies. I don’t think she heard.

He lost interest quickly and went back to basketball, and I made some small talk to her. Right now, I’m not sure what I said, because the shock had taken over. But I do remember that inside I was reeling,

“Did that just happen?”

She left. I stood there on the basketball court, my mind racing to perceive and understand the meeting. I quickly concluded that there was no other way to view the interaction than as very sad.

My thought process went something like this.

She was terrified that my son was going to hurt her or her child. She was consumed by fear. AND, I thought we were over that. BUT, there are obviously still people in the U.S. in 2016 who are afraid of Down syndrome people, and likely afraid of anyone who is different. I’m sure this woman is not alone.

My brother and my son were shooting hoops. My son didn’t notice anything. My brother tossed me the ball.

Just like the game where the one holding the token gets to speak, my first words were, “There’s still a lot of work to do.” And, without having to say anything else, he agreed.





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