October is Down Syndrome Awareness Month, a chance to spread awareness. During the month of October, we celebrate people with Down syndrome and make people aware of their abilities and accomplishments. It’s not about celebrating disabilities, it’s about celebrating abilities.
A Very Special Brother
By Ken Bradbury
When my little brother Jacob was six months old my mother said she was going to write a book. She was going to call it, “One Hundred Things That Can Be Flushed Down a Toilet.” Jacob loved pulling handles and watching things disappear. We’d be missing a book or a credit card or a goldfish and we’d say, “Jacob!” He’d smile and say, “Woosh! Woosh!” Jacob didn’t have much a vocabulary until he was four or five years old so words were a big deal to him when he finally learned to talk. Words can do that. They can be a big deal.
Here’s how it happens. . . the nucleus of every cell has 23 sets of chromosomes and there’s this little rascal called chromosome 21. If you have an extra pair of 21’s we call it Down syndrome. Not “Downs.” Down. One out of every 691 babies born in our country this year will have it. . . That means about 6000 this year. And Jacob is one of them.
Jacob is probably the most . . . how do I put this? . . . amazing thing that’s ever happened to our family. Just when we thought we had life figured out, along came Jacob and our world sort of got turned upside down. . . or flushed away. Whoosh! Woosh!
It was funny….Mom was so worried about how to tell us that we were about to have a brother with a disability. She’d read about the proper way to break it to the family without causing too much heartache. And here’s the part we still laugh about: My big brother said, “Lots of people with disabilities use dogs to help them get around. Does this mean we can get a dog?” And I said….now remember, I was much younger. . .I said, “Does this mean we can park in the handicapped spaces?” Jacob has provided us with a lot of laughs.
When he started to school he got in trouble . . . a lot. Kids on the bus would tell him to do things and Jacob would do them. And not all of these things were good. The bus driver would get mad and he’d report it to the principal then the principal would call Mom and Dad. The kids would say, “Hey Jacob, go up and kiss that girl,” and Jacob would go up and kiss that girl. They’d say, “Jacob, call the driver stupid,” and Jacob would do it. Just words, but words can be a big deal.
And I hate to bring this up, but one of our major jobs was to convince Jacob that wearing clothing was a good thing. If he didn’t like what he was wearing he’d just take it off. . . no matter where he was. I think I’ll skip the details, but Mom had to do a lot of explaining in shopping malls when he was young. . . .and thank goodness that the people in church were understanding.
But the thing that got Jacob in the most trouble was his hugging. He hugs everybody. Everywhere. At any time. And when Jacob hugs you he closes his eyes, wraps his arms around and you sort have to hold your breath until he lets go. Sometimes you have to tell him to let go. . . .especially if it’s a stranger at the supermarket or a lady walking down a sidewalk. Did I mention that Jacob’s strong? I’ll have to shout, “Enough, Jacob! Enough!” He understands that. Words are a big deal to Jacob.
Jacob is musical, too. . . .I mean for a kid who can’t carry a tune. He’ll listen a song he likes and that’s all we’ll hear for hours. . . for days. . . sometimes for weeks. Nothing can ruin a song like letting Jacob fall in love with it.
Oh. . . and I’ve got to mention. Jacob’s an addict. Ketchup. He’s a ketchup addict. You name it and my little brother will slather it with ketchup and if he ever has to be punished all you have to do it threaten to take it away. Actually, he’s opened up a whole new world of possibilities. It never occurred to me to put ketchup on cornflakes. . . . or peanut butter. . . and unless you’ve tasted ketchup-flavored ice cream you just haven’t lived. We won’t let him do this at school or in restaurants because it sort of grosses people out, but at home I just try to look the other way.
When you have a brother like Jacob you sort of want to be with him all the time to protect him, but of course you know that’s impossible. You want to be there when other kids tease him and call him names. And yes . . . he’s cute and he’s lovable and he loves everybody and kids still call him names. Sometimes he doesn’t even know what the names mean and he’ll come home calling himself that. The worst was the night he said, “Hey Dad! I’m a retard!” We all just sat there. It wasn’t something he read and he probably didn’t hear it on television. Someone had called him that and they’d thought it was pretty funny when he took up the name himself. Jacob really likes it when he can get a reaction out of people so when we were all so shocked he knew he’d had an affect on us and it really hard to get him to quit using the word. Retard. Because you see . . . someday Jacob will know what the word means. I know what it does to my mom when she hears the word. I can see the look in Dad’s face when one of his friends casually calls someone a retard in conversation. It hurts, okay? No matter what you’ve heard, words count.
Some people even defend saying it. They say, “When I was growing up that’s what we called it.” Well, that was then and this is now. It’s offensive. Grow up. Learn something. Deal with it. What it means today is, “You are an outsider. You’re not a part of the group.” It’s really not that hard to figure out. Imagine your own child with a learning disability standing in the lunch line. The boy behind him says, “Hurry up, you retard.” Is that okay with you just because your grandpa once used the word? Words matter.
Some say, “But the problem is called ‘mental retardation isn’t it?” No. In fact it isn’t. Words matter. Use the right ones, please. “But I’d never call your brother that name.” It doesn’t matter. As long as you use the word then you spread the problem. . . you keep it going.
“But it’s just a word.” Yes. Yes, it is. And words matter.
There’s an old saying, “Sticks and stones can break my bones, but words will never hurt me.” Whoever came up with that has obviously never been called a name because of the way she looks, the way he talks, or the way they act. Of course words hurt. That’s why some people use them.
So what word do you use instead? How about… “funny?” Have you ever been awakened by someone standing on your bed in his underwear singing, “Mama, Don’t Let Your Babies Grow Up to Be Cowboys?” Want another word? Try “determined.” Tell Jacob that he can’t put ketchup on the communion wafers at church. How about “sympathetic?” When Jacob sees someone crying his own tears begin to flow.
There’s lots of other words you can use . . loving. . bright. . . inquisitive… extremely inquisitive. . .I mean really inquisitive. “No Jacob, you do not ask my boy/girl friend how he/she smells.” You want words? There are a lot of wonderful, beautiful words to describe my brother.
One night as I was tucking Jacob in to bed I said, “Jacob, you’re a handsome young man.” He said, “What’s that mean?” I said, “You’re good looking.” “What’s that?” he asked. “You’re a pretty boy, Jacob.” He smiled. He closed his eyes tightly and said, “I’m a pretty boy.” And the next day at school he announced to everyone that he was a pretty boy. He told his teacher, he told the lunchroom cooks, he told the janitor, he told the water fountain. We often believe what people tell us, because words. . . yeah. . . words matter.
