Margaret's Guide to Down Syndrome

[Guest guest]

Margaret’s

guide to Down syndrome

May 12th, 2007

Here’s Margaret’s essay, which she wrote laboriously and with

assistance over a period of weeks. She did research, including interviewing her

pediatrician. All the opinions expressed are hers, although she did need help

figuring out how to get her ideas down on paper.

Margaret’s essay came to the attention of the Washington Post health

section, and was printed there in in 1999. It is available through the Post

archives.

By Margaret Muller

Today I’d like to tell you about Down syndrome. My purpose for talking

about this is to be able to say, “Yes, I have Down Syndrome. Sometimes I

have to work harder to learn things, but in many ways I am just like everyone

else.” I would like to tell people that having Down syndrome does not

keep me from doing the things I need to do or want to do. I just have to work

harder.

Down syndrome is a condition and not a disease. You cannot catch Down

syndrome like you can catch a cold or virus. It is something you are just born

with–like blond hair and blue eyes. If you have Down syndrome when you

are born, you will have it your whole life.

People without Down syndrome have 46 chromosomes, which carry all the

genetic information about a person, in each of their cells. People with Down

syndrome have one extra chromosome. So a person with Down syndrome has a total

of 47 chromosomes in each cell. Doctors and experts are not really sure what causes

it, but they say it occurs in about one of every 700 babies. This happens

randomly, like flipping a coin or winning the lottery.

Everyone with Down syndrome is a totally unique person. The extra chromosome

makes it harder for me to learn. Sometimes I need someone to say, “Settle

down and get busy!” Also, it’s really easy for me to be stubborn,

so I don’t mind if you say, “Hey, Margaret, please stop.”

Even though I have one extra chromosome, the rest of my chromosomes carry

information from generation to generation just like yours. Chromosomes control

certain genetic characteristics, like eye color, skin color, height and some

abilities like music, art or math.

For example, I get my blue eyes from my father, my fair skin and freckles

from my mother, my blond hair from my grandmother, my long thin feet from both

my mom and my dad, and my need to wear glasses from both my grandparents and my

parents. I like to concentrate on the ways that I am like everyone else.

I am very lucky to be alive today rather than 50 years or even 20 years ago,

because back then the doctors and experts believed that people with Down

syndrome were not capable of learning. But now we know that people with Down

syndrome are capable of doing many different things.

I personally am doing things that some people didn’t think I could do.

When I was born, somebody told my mom that it was too bad that I was named

“Margaret” because I would never even be able to say my name. That

person might never have expected that I could win four medals in Special

Olympics swimming, be a green belt in karate, cook a pizza, read a novel, run

half a mile or get up in front of the class and give a speech! With a lot of

hard work and encouragement, I have been able to do all these things.

I am not sad about the fact that I have Down syndrome. It is just part of

me. I have a great brother (most of the time), and parents who love me a lot. I

have wonderful friends who enjoy hanging out and having fun with me. I have

teachers who help me keep on learning new things. I am glad to be a student at

Lincoln Middle School, because it is a great school and almost everyone is

really nice. Down syndrome has not stopped me from having a worthwhile life.

http://www.patriciaebauer.com/2007/05/12/margarets-guide-to-down-syndrome

[Guest guest]

Thank you. I'm going to print this and share it with my family.

Thanks,Pat Troutt (Neil's mom, 14 months, ds, av canal repaired June 25, 2006)