"Do I have Down Syndrome?"
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.
I am a person
with lots of plans.
am 11 years old and in fourth grade. This year some little girls came
to my school. I heard some people say they had Down Syndrome. On a Saturday
I asked my Mom, "Do I have Down Syndrome?" Mom said that I do.
went 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.
Monday I went to school. 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."
friends were really nice. They said they already knew that and they still
liked me. Some of them cried. I got lots of hugs.
I am still not happy!
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.
went to the TASH Convention. 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
took lots of baths. I thought if I took enough baths I could wash my Down
Syndrome away. I also thought I would put hair spray on it but my Mom
and Dad won't let me have hair spray. I tried to put sun screen on it
because I thought that maybe then I wouldn't have to have it all of the
time. But my Dad said that none of that would work.
have friends that were at TASH. My really special friend is Tia Nelis.
She lives in Illinois. Tia has a disability but when she 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 has 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!
have other friends at TASH who told me the same thing. I met a really
nice person named Katie. Katie goes to college. She 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.
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 who they are and made them free.
wish I didn't have Down Syndrome. But I do and I am a person with lots
I wonder what to do I remember my song. I will do what it says. I will
go 'clang, 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
Just be me.
article was compiled from Eleanor's journal entries during
the TASH convention.