Talking About Down syndrome by Madeleine Greey
About nine years ago, I attended a Down syndrome conference featuring a panel of adults with Down syndrome. At the time, my daughter Krystal was just a baby and I was intrigued to find out what adults with Down syndrome had to say.
I listened intently as they spoke of their different challenges and waved my hand eagerly when the question-period started.
“Should I tell my child she has Down syndrome?” I asked naively. “Of course, ” said one of the panel members. “You must! She needs to know that.”
In hindsight, what I really should have asked is “How and when should I tell my child she has Down syndrome?” I’ve felt for years that Krystal (who will be 10 this summer) knew in her heart of hearts that something about her was “different” but she couldn’t express it. So I waited. It was easier to wait than not, for the task of talking about it seemed a little too formidable.
How could I break this news to her? How could I make it sound better than it was? Up until recently, I didn’t feel compelled to talk to Krystal about Down syndrome or bring up the topic of Down syndrome formally in her classroom. I felt that Krystal was teaching everyone a lot about Down syndrome just by being herself and being part of our community. But when Krystal entered Grade 3 last fall at our local school, I felt the time had come to “let Down syndrome out of the bag”. That’s not to say that the children in her class (or their parents) didn’t know Krystal had Down syndrome. They knew something. But what exactly did they know?
I felt they needed more information from us, Krystal’s family, the experts. I was concerned that by saying nothing, many of these children were starting to develop their own myths and misunderstandings about Down syndrome. And I wasn’t sure if their parents could really answer any questions these kids might have about Down syndrome. So I wrote a letter to the classroom and asked the teacher to read it to Krystal’s class on a day when she was absent.
My purpose in writing this letter was not to single out Krystal as unacceptable, yet I did want to acknowledge her “differentness”. Just because she is different, doesn’t mean she’s bad. But when we don’t communicate openly about differences, children (and adults) some-times conclude that silence on a topic means it is “bad”. My purpose in writing the letter was to get the kids talking about Down syndrome, because the more we communicate the less “scary” it becomes.
The same can be said about our household. It hasn’t been easy for my family to start talking more freely about Down syndrome, but the more we do, the less difficult it becomes. The first time we talked about Down syndrome was about a ago. It wasn’t planned. Krystal’s younger brother was starting to notice something different about his sister. We had watched a family video and later, at dinnertime, he asked why Krystal was four years old in the video, yet was talking “like a two-year-old”.
Krystal immediately piped up, saying, “I wasn’t talking like a two-year-old, I had a cold that day!”
Obviously, Krystal doesn’t want to feel criticized and has enough self-esteem to defend herself. We don’t want her to feel left out or ostracized, but at the same time, we can’t pretend she doesn’t have Down syndrome… I saw a window for conversation. I tried this: “Krystal has some-thing called Down syndrome and that means that she learns how to do things slower than most children. It took her longer to learn to walk than other kids… and it took her longer to learn to talk, too. But Krystal tries harder than all of us to do these things, and we are so proud of her when she is able to learn something new.”
Just prior to sending the letter to her classroom, Krystal and I talked about DS again. I reiterated much of what I had said to her and Nicholas earlier, adding: “That’s why Joanna (the educational assistant) comes to your classroom and helps you everyday.”
“Joanna helps the other kids, too,” said Krystal, quickly. Then she added, “I don’t like this. I don’t want to be slow!”
I realized I had left her with a really negative image of herself… but I didn’t know what else to say. After thinking about it for several weeks, I brought up the topic again with her.
This is what I said: “Down syndrome means you have to try harder. It doesn’t mean you can’t do things. You are able to do a lot of amazing things and you can do whatever you set your mind to. But you will have to try really hard. And sometimes you’ll get really frustrated and it will make you really angry. That’s okay. Remember, it’s not your fault. You didn’t do anything wrong. But, there isn’t anything we can do to take the Down syndrome away. It is the way you were born, and Mommy and Daddy love you just the way you are. You are the best Krystal in the whole wide world and we are really proud of everything you do.”
A few weeks later, after the letter was read to her classroom, Krystal came home and asked me what a word meant.
This was an amazing event, since Krystal rarely asks me what words mean.
“What’s handicapped mean, Mom?” she asked innocently.
I told her it meant the same thing as having Down syndrome.
She groaned. Then she added: “My friend says I’m the only handicapped person in the school.”
Naturally, she was feeling really left out. I told her of the different kind of handicaps people can have. I also pointed out that we know several people who have handicaps. That made her feel better.
A few months later, brother Nicholas was badgering Krystal about her pronunciation. She usually takes this in its stride, but he was really bugging her that day. Finally, after he corrected the way she said “Fruit Roll-Up” for the umpteenth time, she looked at him sternly and shouted, “I’m handicapped, okay?!!”
I felt so proud of her for sticking up for herself. I applauded her, saying ,”That’s right, Krystal, you can say that if you feel someone is asking too much of you.”
But of course, this confused her five-year-old brother, who instantly interpreted my enthusiastic appreciation of his sister’s assertiveness as a personal slight. In defense, he said “I don’t want to have a handicapped sister!”.
“Why not?” I tried. “Because I never understand what she is saying!” he screamed.
“That’s funny- Daddy and I always ask you first when we don’t under-stand what Krystal is saying and you always seem to know what it is immediately,” I said.
“Yeah, “ he said.
“And you are always teaching her how to say her words better,” I said.
“Yeah, I am really good at that,” he said, chest puffed out. He left the room smiling and went to play with his toys. Krystal was happy, too, because she got to eat her Fruit Roll-Up in peace.