Down Syndrome is a "chromosomal anomaly." That means my chromosomes made a mistake when I was being made that caused a "structural" difference in my cells. Structure is the way something is made. The number of my chromosomes is different. The way they are put together in my cells is different from most other people's.
When I was born, the doctors thought I had Down Syndrome. I didn't have enough "traits" or "characteristics" for them to just look at me and tell for sure. They had to conduct a "cytogenetic investigation." That means a scientific study of cells from my blood. The doctors did a special study called a "karotype" of the chromosomes in my cells. Blood was taken from my foot to do the test. The test was done the day after I was born and still in the hospital. It took three weeks for the test answers to come back.
When chromosomes from my mom and dad came together to make me, a normal chromosome broke. The broken piece moved and stuck onto another chromosome. No one knows why. This is rare and doctors called it "spontaneous translocation." So in my cells, I have a short chromosome and the long one with the extra piece stuck on it. That is why I have Down Syndrome.
Besides my cell structure, and a few quirks we all have, I am just like everyone else! I go to school, like sports, have feelings, have different interests and things I like to do, and have lots of friends. I have some things that I need help with. I learn differently than some people do, but I am able to learn many things.
Sometimes it takes me longer to process incoming information, form my thoughts, and communicate with you. If you have introduced yourself and I know you, I don't forget who you are. Sometimes I know you because I have seen you but don't know your name. I have a great memory and will remember you!
So when you see me, don't think that I don't know who you are. Tell me "Hi" and I'll do my best to answer you! I want to be friendly! Sometimes I look away from you so I can concentrate and process what you've said to me. It doesn't mean I'm not interested or don't understand. That kind of frustrates me.
I am bashful, quiet and don't talk much unless I am very comfortable. I have a large tongue because of Down Syndrome. That makes it harder for me, than most people, to breathe and talk clearly. That's probably one reason I don't talk much. I'm afraid you won't understand me, might ask me to repeat what I said, or might make fun of me. It's frustrating, so I just don't talk a lot. Some people confuse "not talking much" with "not knowing very much." That isn't true. I know a lot!
I try to do many different things, so I am very brave. I'm in your class, aren't I? When I'm in regular classes, I learn about the subject. Also, I learn how to fit into the mainstream of life with you.
When I'm learning things or taking directions, it's easier for me if information is broken into basic tasks or chunks. Getting the answer or information back to you takes me a little longer. So sometimes it's helpful if there are different ways for me to do these things. That could mean talking, pointing, drawing, locating and showing things, selecting items or answers, or many other ways.
It frustrates me because some people think that I don't know or understand things when I do. I'm smart, too, but maybe in a different way. We just need to figure out easier ways for us to talk!
Besides my cell structure, and a few quirks we all have, I am just like everyone else!
So remember my report the next time you meet or see someone who isn't like you. Everyone is different. We are all unique individuals. No two are the same. God made us that way so we would have variety and be more interesting!
I Wish They'd Ask
As an itinerant writing consultant, I have the opportunity to teach in many schools. I've observed that students who have special needs often eat their lunches together, stay in the same part of the room when mainstreamed, even remain segregated when there is an assembly or a sports event, seemingly invisible to other students.
One day at the Dolphins' Special Olympic swim practice in Oklahoma City, Michael Arnold proudly handed me a copy of "My Special Chromosomes" and said, "I wrote this with my Mom." After perusing this thought-provoking essay, I explained that I'd like to share it with my writing students. Michael smiled his "okay."
The next day I selected a student to read "My Special Chromosomes" to my first-hour writing workshop.
"Wow, he sounds just like me -- a regular guy who likes sports," a basketball player observed.
"I can really relate," said an 8th grade girl. "When I first got my braces, I didn't talk much or smile. I think some people probably thought that I was not being friendly, but I felt shy."
When someone used the term "mentally retarded" in our discussion, I explained that many people now prefer "special needs" or "differently abled." One student said, "I'm not good at football, but there's no term that labels me. Why do we need to label at all?"
The participants in my next class included Susan and Joey, two students with cerebral palsy, who use wheelchairs and regularly participate in Special Olympics. This time, I read Michael's essay myself. Susan raised her hand and said, "I really understand how Michael feels. I don't like it when people stare at me. If they're curious about why I'm in a wheelchair, I wish they'd ask me."
Joey added, "Lots of people act like I don't exist. They're probably trying not to stare and be rude, but I'd rather they smiled and talked to me."
Another student then explained, "When I don't look at someone in a wheelchair, it's because I don't know what to say."
"Just say what you would to anyone else," Joey explained. "I may not be able to walk or use my hands as easily, but I still have the same interests and feelings and thoughts as you."
After more discussion, the students eagerly wrote in their journals. I then asked them to divide into groups and invited them to share their journal entries. They always have the option to pass, but this time no one did.
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