I am eleven years old and in fourth grade. This year some little girls came to my school. I heard some people say that they had Down syndrome. On a Saturday I asked my Mom, “Do I have Down syndrome?” Mom said that I do.
I went up to my bedroom and closed the door. I didn’t cry but I shut the door and was mad and upset. I didn’t want to have Down syndrome.
On Monday I went to school and I told my teacher, Mrs. Karr, that I had an announcement to make. She gave me the microphone and I said: “I have two things to say. First, I have Down syndrome and second, I am really scared that none of you will like me anymore.”
My friends were really nice. They said they already knew that and that they still liked me. Some of them cried. I got lots of hugs.
But I am still not happy!
On Wednesday my Dad and I got on an airplane and went to Chicago. On the airplane I listened to my Walk Man. I have a song that goes “Clang, clang, rattle, bing, bang. I make my noise all day.” I thought that is what I can do. Even with Down syndrome I can still make my noise.
We went to the TASH meeting. There were lots of really cool people there. We stayed in a big hotel. In our room there were two bathrooms. One had a shower and one had a bathtub. I made a sign that said “Girls” and put it on the door of the one with the bathtub. I didn’t want my Dad to come in.
I took lots of baths. I thought if I took enough baths I could wash my Down syndrome away. I also thought I would put hairspray on it but my Mom and Dad won’t let me have hairspray. I tried to put sunscreen on it because I thought that maybe then I wouldn’t have to have it all the time. But my Dad said that none of that would work.
I have friends that were at TASH. My really special friend is Tia Nelis. She lives in Illinois. Tia has a disability but when Tia talks people listen. They really listen. Tia is a leader and she really likes me. I told Tia that I have Down syndrome. I was surprised when she said that she had always known that. She said she didn’t care. She said that I am an important person and that Down syndrome is not as important as being a wonderful person. When I grow up I want to be just like Tia.
I have other friends at TASH who told me the same thing. I meant a really nice person named Katie. Katie goes to college. Katie has Down syndrome. I also talked to my other friend Liz Obermayer. Liz has a new job and is moving to Maryland which is a state. Liz has a disability but she is a leader too. She is on the Board of TASH. Liz goes to lots of meetings and people listen to her too.
I got my name from Eleanor Roosevelt. Lots of bad things happened in her life. I have read all about her. She was a leader. I also know about Rosa Parks, Martin Luther King, Nelson Mandela and Robert Kennedy. Lots of bad things happened to them but they were strong and were leaders. My Dad says they made people proud of whom they are and made them free.
I wish I didn’t have Down syndrome. But I do and I am a person with lots of plans.
When I wonder what to do I will remember my song. I will do what it says. I will go ‘Clang, rattle, bing, bang and make my noise all day.’ Even though I am sad I know I can be as tough as anyone. That is what I want to do.
Just be me.
Used with permission of Mouth Magazine: Voice of the Disability Nation