Eleanor Helps Herself
by Eleanor Bailey
Mom, "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.
I
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.
I
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.
On
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."
My
friends were really nice. They said they already knew that
and 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 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
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 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.
I
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!
I
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.
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 who 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 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 to do.
Just be me.
This article was compiled from Eleanor's journal entries during the TASH convention.
photo credit: the photo is Ms. Bailey's 1999 school photo
Eleanor is the daugher of Michael Bailey, who also writes for Mouth. They live in Portland, Oregon. To send Eleanor or Michael an email, click here.
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