Poems and Stories

"Like Me"

By Emily Perl Kingsley

I went to my dad and said to him,
There's a new kid who's come to my school.
He's different from me and he isn't too cool.
No, he's nothing at all like me, like me,
No, he's nothing at all like me.

He runs in a funnyish jerkyish way
And he never comes first in a race
Sometimes he forgets which way is first base,
And he's nothing at all like me, like me,
No, he's nothing at all like me.

He studies all day in a separate class
And they say that it's called "Special Ed."
And sometimes I don't understand what he's said,
And he's nothing at all like me, like me,
No, he's nothing at all like me.

His face looks kind of different from mine,
And his talking is sometimes so slow
And it makes me feel funny and there's one thing I know;
He is nothing at all like me, like me,
No, he's nothing at all like me!

And my father said, "Son, I want you to think
When you meet some one different and new

That he may seem a little bit strange, it's true,
But he's not very different from you, from you,
No, he's not very different from you,"

Well I guess, I admitted, I've looked at his face;
When he's left out of games, he feels bad.
And when other kids tease him, I can see he's so sad.
I guess that's not so different from me, from me,
No, that's not very different from me.

And when we're in Music, he sure loves to sing,
And he sings just like me, right out loud.
When he gets his report card, I can tell he feels proud,
And that's not very different from me, from me,
No, that's not very different from me.

And I know in the lunchroom he has lots of fun;
He loves hot dogs and ice cream and fries.
And he hates to eat spinach and that's not a surprise,
'Cause that's not very different from me, from me,

No, that's not very different from me.

And he's always so friendly, he always says hi,
And he waves and he calls out my name.
And he'd like to be friends and get into a game,
Which is not very different from me, from me,
No, I guess that's not different from me.

And his folks really love him. I saw them at school,
I remember on Open School Night --
They were smiling and proud and they hugged him real tight,
And that's not very different from me, from me,
No, that's not very different from me.

So I said to my dad, Hey, you know that new kid?
well, I've really been thinking a lot.
Some things are different . . . and some things are not . . .
But mostly he's really like me, like me,
Yes, my new friend's . . . a lot . . . like me

© by Emily Perl Kingsley. All rights reserved.

Two Words

By Cheryl Ward

Your birth brought us closer
As death lingered near
Your strength as you struggled
Gave flight to our fear

Down syndrome they whispered
Days after your birth
Two words that portrayed
A false image of your worth

Those words did not tell us
Of the love you would bring
Or the power your smile has
To make our hearts sing

Down syndrome didn't tell us
What kind of child you would be
Filled with amazing surprises
Shared with your father and me

Hard work, determination,
teaching and learning, it's true
Down syndrome means much of this
For each of us, not just you

Wonder child, spirited child
You've grown and you've thrived
Your every achievement
Still fills us with pride

No matter the voice used
Two words can't describe
The fullness you've added
To so many lives

Down syndrome, those frightening words
Whispered so long ago
Never did they prepare me
For the person I now know

Heaven's Very Special Child
by Edna Massimilla

A meeting was held, quite far from earth
"It's time again for another birth"
Said the Angels to the Lord above,
"This special child will need much love"

Her progress may seem very slow,
Accomplishments she may not show
And she'll require extra care
From all the folks she meets down there.

She may not run or laugh or play
Her thoughts may seem quite far away
In many ways she won't adapt,
And she'll be known as handicapped.

So let's be careful where she's sent
We want her life to be content

Please, Lord, find the right parents who
Will do this special job for You.

They will not realize right away
The leading role they're asked to play
But with this child sent from above
Comes stronger faith and richer love.

And soon they'll know the privilege given
In caring for this gift from Heaven.
Their precious charge, so meek and mild
Is heaven's very special child.

Copyright © 1981 by Edna Massimilla
Published in The Optimist - newsletter for PROUD
Parents Regional Outreach for Understanding Down's Inc.

My Perfect Child by Anonymous As my children were born,
I wanted them to be perfect.

When they were babies,
I wanted them to smile and be content playing with their toys.
I wanted them to be happy and to laugh continually
instead of crying and being demanding.
I wanted them to see the beautiful side of life.

As they grew older,
I wanted them to be giving instead of selfish.
I wanted them to skip the terrible twos.
I wanted them to stay innocent forever.

As they became teen-agers,
I wanted them to be obedient and not rebellious, mannerly and not mouthy.
I wanted them to be full of love, gentle and kind-hearted.
"Oh, God, give me a child like this" was often my prayer.
One day He did. Some call him handicapped... I call him Perfect!!

Siblings

Every brother is a dork sometimes, even if he has a disability.

-Rob, age six, whose older brother is deaf

John, a nine-year-old boy, is asked to describe life with his brother Brad, twelve, who has Down syndrome. "Sometimes good and sometimes horrible," he says. "It is good because I can con him easily. Sometimes he shares his toys, and sometimes he's understanding." Then he goes on to enumerate a much longer list of the horrible things: "He screams when I take something of his. He's not a good sport at games sometimes. He gets up early in the morning and hogs the leftover pizza so no one else can get it. We go to the same school, and people always come up to me and say Brad did this or Brad did that. I'm having a great time and they come up to me and say are you Brad's brother. I tell them to work it out themselves. I'm way better at Nintendo than he is."

How much simpler life would be if your big brother were just a dork. How confusing for a child to have to figure out what is dorkiness and what behavior is the result of the disability. How troubling to be asked to be responsible for your big brother, or to mediate the issues between him and other schoolmates. How hard to be the little brother and be "way better."

We don't need to deny the horrible side, or try to talk our child out of his anger or embarrassment. We just need to tell him we hear him, and though we try to understand, we don't know exactly what it's like to have a brother who is different from the other kids. We do know there are a lot of hard parts, and we are there to help him through them. We can tell him we know he loves his brother even when he hates him, and that we love them both, more than anything. And, yes, sometimes a brother is just a dork, plain and simple.

PARENT STRATEGIES: DEALING WITH THE SIBLINGS OF A SPECIAL NEEDS CHILD

BE HOPE AND HONEST

If you don't know the answer to your children's questions about the disability...say so and try to find the answer.

VALUE EACH CHILD INDIVIDUALLY

Point out each child's strengths and weaknesses; don't compare one with the other.

LIMIT CAREGIVING/BABYSITTING RESPONSIBILITIES

Give recognition when siblings help the special needs child. Don't choose just certain children in the family to help (i.e., the oldest girl.) Everyone can do something. Explain why you are asking for their help (i.e., "if you do this it will give me more time to do other things as well as be with you.")

BE FAIR

Treat the special needs child as normally as possible in terms of attention, discipline and resources.

ACCEPT THE DISABILITY

Others won't accept the disability if you don't. Denying it hinders siblings from being able to deal with it or adjust to it.

GET BOOKS FROM THE LIBRARY

Books are available to explain disabilities. These resources are especially helpful in explaining this subject to young children.

SOME SIBLINGS DISAGREEMENTS ARE NORMAL AND NEED TO HAPPEN

Stopping every disagreement denies the brothers and sisters the opportunity to learn to solve their own problems.

WELCOME OTHER CHILDREN AND FRIENDS INTO THE HOME

Your welcome attitude gives a model of acceptance to the siblings and friends.

PRAISE THE SIBLINGS WHEN THEY HAVE BEEN PATIENT WITH THE SPECIAL NEEDS CHILD OR SACRIFICED, OR BEEN ESPECIALLY HELPFUL.

Twenty goals to grow with!

I have a realistic view of my child's abilities and limitations and clearly value my child as a total person.

I do not allow myself to live with unrealistic expectations and therefore repeated disappointments about what my child cannot do or may never do.

I plan what I can for the future, but live a day at a time with a sense of trust that I will handle what hapens tomorrow, next year, or in ten years.

I have the knowledge and skills to seek out information and resources in assertive, creative ways.

I have hope without expecting miracles.

My self-esteem is intact. I do not measure my worth by my child's abilites or limitations.

I try to see the world from my child's point of view.

I am able to empathize with others, to be sensitive to other viewpoints, while maintaining my own sense of priorities.

I have freed myself from unproductive feelings of guilt, anger, shame, blame, and self-criticism.

I generally see the glass as half full instead of half empty, and am able to live each moment to the fullest.

I have a sense of perspective about my life, my problems, and my daily hassles.

I have a sense of humor and can laugh at myself.

I have an understanding of and appreciation of individual differences.

I have maintained a support network of family and friends.

I do the best I can within the context of my total family's needs.

I realize I will not be able to do everything - and I will not feel guilty about that.

I will not spend every moment trying to teach, stimulate, and cure my child. I will have times with her that are totally for fun.

I will not blame myself for any areas in which my child is unable to make progress.

I do not need to eplain myself and/or my child to everyone.

I cannot control what other people think.

- from Nobody' Perfect: Living and Growing with Children Who Have Special Needs., Nancy Miller, M.S.W., Ph.D.

Stereotypes!

Stereotypes are everywhere. There will always be stereotypes because this is the way our society views people that don't fall within the "norm". But what is considered "normal"?

If we see a teen mother, she is stereotyped.

If we see a mother on welfare, she is stereotyped.

If we see a homeless person on the street, they are stereotyped.

If we see a person who has MR or who is in a wheelchair or talks differently, they are stereotyped.

It doesn't matter what brought any of these people to the circumstances that they are currently in. Whether by birth, choice or accident, the immediate reaction of society is to judge them based on the visual that is there. So what can we do when someone stereotypes an individual with Down syndrome? There are some things that you can do: Most important.... Ignorance isn't always being rude. Most of the time ignorance means "not knowing" or to be "uninformed about something".

1. Take time to educate the person who stereotypes your child. Turn that negative comment into something positive by explaining to them that while your child "has" DS, they "are" not DS. DS is merely having an extra chromosome and causes differences in appearance and cognitive ability. Tell them that your child does the same things as everyone else, they just do it differently and there's nothing wrong with that.

2. Tell them that there are people in this world that are far worse off in their lives than your child having DS. DS isn't the "be all" and the "end all" to your child's life.

3. Give them something positive to think about. Share a story or experience that changed your life for the better.

4. Tell them about what DS is. Maybe they don't understand. It is a fluke of nature and it's NOT caused by ANYTHING that the mom or the dad did.

5. Start lecturing at high schools, universities and hospitals about the positives, successes, trials and obstacles that your child has dealt with because of having DS. You would be surprised how many people just "don't know".

We are in our own special little world. Every person with a child or family member who has DS is living a truly unique life in that as our children get older, we realize the special and unique personalities are just as wonderful as our family members who DON'T have DS. I focus not on what my daughter can't do, but on what she can. I try to emphasize that when dealing with an otherwise ignorant person. We can't change everyone, but we can change the stereotype.

-Judi Scarpelli