THE JUNIOR HIGH DOWN SYNDROME AWARENESS KIT

Provided by: The Manitoba Down Syndrome Society
1999/2000

This kit contains information that can be used by parents and professionals who wish to increase the awareness level of students at the junior high level. Users are encouraged to choose the parts of the presentation guide that best suit their purposes.

Presentation Objectives

To give you information about Down syndrome

To touch your heart and develop your spirit of generosity and caring.

Student Note-taking Guide

The guide on the following pages, or a similar guide, should be given to the students before the actual presentation begins. Students should be given a few minutes to fill in anything they already know (or think they know) and complete the true/false page.

Students should be encouraged to add or change information throughout the presentation. The guide will then become their notes on the topic should any follow-up be initiated by either the students or the teacher.

Be sure to speak to all questions, including the true and false page, during the presentation. If there is time you may want to review the true and false answers at the very end of the presentation.

Student Note-taking Guide

1. What is a syndrome?
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2. What are some common characteristics of people with Down syndrome?
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_______________________________________________________________________________________________ _______________________________________________________________________________________________ _______________________________________________________________________________________________ ___________________

3. Why is this syndrome called 'Down' syndrome?
_______________________________________________________________________________________________ _______________________________________________________________________________________________ ______________________________________

4. What causes Down syndrome?
_______________________________________________________________________________________________ _______________________________________________________________________________________________ _______________________________________________________________________________________________ ___________________

5. Where should people with Down syndrome live, be educated, work, and participate in leisure activities?
_______________________________________________________________________________________________ _______________________________________________________________________________________________ _______________________________________________________________________________________________ ___________________

6. How can I support a person who has Down syndrome?
_______________________________________________________________________________________________ _______________________________________________________________________________________________ _______________________________________________________________________________________________ ___________________

True or False?

___  1. Down syndrome is a disease.

___  2. You can catch Down syndrome.

___  3. Language is often slow to develop in people with Down syndrome.

___  4. The intellectual capabilities of all people with Down syndrome is the same.

___  5. People with Down syndrome can be talented.

___  6. People with Down syndrome have the same feelings that other people do.

___  7. Most babies with Down syndrome are born to older mothers (over 35 years of age).

___  8. People with Down syndrome would rather be alone than with a group of their peers.

___  9. People with Down syndrome cannot learn to read and write.

___ 10. Down syndrome is caused by something the baby’s mother did during her pregnancy.

___ 11. When I see a person with Down syndrome, I don’t know how to react.

___ 12. I have a better understanding of people with Down syndrome than I did yesterday.

Presentation Outline

A) What is a syndrome?

1. Using overhead, outline the goals of the presentation.

2. Ask if anyone can give a definition of the word syndrome?

3. Accept answers, and follow-up with the overhead containing the definition of the word syndrome.
 

B) Common Characteristics of People with Down Syndrome

1. Hold up the book "Be Good to Eddie Lee" by Virginia Fleming, or a large picture of a person with Down syndrome.

2. State that the young person in the picture has Down syndrome. Ask if anyone knows a person with Down syndrome? Take responses if there are any.

3 Ask if anyone knows anything about Down syndrome or people with Down syndrome?

4. Take responses and expand on, explain or refute these as necessary.

5. Give more information on characteristics of people with Down syndrome. See enclosed print resources to ensure the information you give is correct.
 

C) Why the name Down Svndrome?

1. Ask if anyone knows why this syndrome is called Down syndrome?

2. Give the correct explanation about Dr. John Langdon Down.

D) What causes Down syndrome?

1. Give correct information regarding the chromosome error.

2. Ensure that it is stated that the reason the error is made is not known at present -and that any mother could have a baby born with Down syndrome.
 

E) Where should people with Down syndrome live, work, be educated and do leisure activities?

1. Pose the question to the students, asking them to explain their rationale.

2. Present advantages of full inclusion in schools and communities.
 

F) How can I support a person with Down syndrome?

1. Pose the question and field responses.

2. Play the song courage by Bob Blue.

Answer Key for Student Note-taking Guide

1. What is a syndrome?

A syndrome is a set of characteristics or symptoms that indicate a disability or disease.

2. What are some common characteristics of people with Down syndrome?

The foIlowing characteristics are those most commonly associated with Down syndrome,
however, a person with Down syndrome often will not have all of these:

• low muscle tone
• nasal bridge may be flatter, nose may be smaller, smaller nasal passages
• eyes appear to slant upward, epicantal folds at the corners of the eyes
• light spots in the iris of the eye called Brushfield Spots
• small mouth and shallow roof of mouth, tongue may appear large or protrude
• teeth come in late and in an unusual order
• ears smaller, tops of ears may fold over, smaller ear passages
• head may be smaller, back of head may be flatter
• hands may be smaller, fingers may be shorter
• palm of hand may have only one crease across it
• may be a gap between the 1st and 2nd toe, with a deep crease in the sole of the foot
• cognitive disability, language disability

3. Why is this syndrome called “Down” syndrome?

In 1866 a doctor named John Langdon Down described a set of characteristics he observed in a number of patients. The common features he noted set the condition apart from other conditions. Dr. Brown described the syndrome long before the genetic link was established. Down syndrome is named after Dr. Down, the man credited with first describing it. It does not refer to someone who is unhappy.

4. What causes Down syndrome?

Most people have 23 pairs of chromosomes in each of their cells, for a total of 46 chromosomes. One of each pair generally comes from the mother and the other from the father. Down syndrome occurs when there is an error in cell division at conception. For reasons that are as yet unknown, an extra chromosome is present at the 21st pair, giving the individual a total of 47 chromosomes in each cell of their body. This extra genetic material throws off the regular balance resulting in the characteristics associated with Down syndrome.
 

5. Where should people with Down syndrome live, be educated, work. and participate in leisure activities?

There is not a correct answer to this question, because each individual and each situation are unique. The capabilities of people with Down syndrome are becoming increasingly recognized. The value of inclusion of people with Down syndrome in community activities is also becoming increasingly recognized. Keeping in mind that people with Down syndrome experience the same range of emotions that the rest of us do, it would seem that a person with Down syndrome belongs where everyone else belongs to live, be educated, work and play.

True or False?

FALSE 1. Down syndrome is a disease.

• DOWN SYNDROME IS JUST WHAT IT SAYS -- A SYNDROME.
  DOWN SYNDROME DOES NOT MAKE A PERSON ILL OR SICK,
  HOWEVER, PEOPLE WITH DOWN SYNDROME CAN GET THE
  SAME ILLNESSES AS ANYONE ELSE.

• DOWN SYNDROME IS THE RESULT OF AN ERROR IN CELL DIVISION
  AT CONCEPTION. THE ONLY WAY TO GET DOWN SYNDROME IS TO BE
  BORN WITH IT.

• SPEECH AND LANGUAGE PRODUCTION ARE VERY COMPLICATED SKILLS. THIS COMPLEXITY MAKES SPEECH AND LANGUAGE PRODUCTION ONE OF THE MOST DIFFICULT TASKS FOR MANY CHILDREN AND ADULTS WITH DOWN SYNDROME TO LEARN AND USE.

• JUST AS THERE IS A WIDE RANGE OF ABILITY IN THE GENERAL POPULATION, THERE IS A WIDE RANGE OF ABILITY AMONG PEOPLE WITH DOWN SYNDROME. SOME PEOPLE WITH DOWN SYNDROME CAN LEARN TO DO MOST OF THE THINGS OTHER PEOPLE CAN DO. OTHERS WITH DOWN SYNDROME MIGHT NEED A SIGNIFICANT AMOUNT OF SUPPORT THROUGHOUT THEIR LIVES.

• PEOPLE WITH DOWN SYNDROME CAN INDEED BE TALENTED, JUST AS ALL OF US CAN BE. BRAD MAGNUS IS AN EXAMPLE OF A TALENTED DANCER WHO HAPPENS TO HAVE DOWN SYNDROME.

• ALTHOUGH PEOPLE WITH DOWN SYNDROME DO NOT ALWAYS EXPRESS THEMSELVES WELL, MOST ARE ABLE TO UNDERSTAND A GREAT DEAL OF LANGUAGE.
  ACCEPTANCE BY OTHERS CAN LEAD TO HAPPINESS AND JOY; COMMENTS
  AND STARES BY OTHERS CAN LEAD TO FEELINGS OF HURT AND DEPRESSION.

• IT IS TRUE THAT AS A MOTHER AGES SHE HAS A GREATER RISK OF HAVING A BABY WITH DOWN SYNDROME. HOWEVER, ANY MOTHER CAN HAVE A BABY WITH DOWN SYNDROME (IN FACT, I OUT OF EVERY 1500 MOTHERS IN HER TWENTIES WILL HAVE A BABY BORN WITH DOWN SYNDROME. SINCE MANY MORE BABIES ARE BORN TO YOUNGER MOTHERS, MOST BABIES WITH DOWN SYNDROME HAVE YOUNGER MOTHERS.

• NO ONE LIKES TO SPEND A GREAT DEAL OF TIME ALONE. WE ALL NEED OUR FRIENDS. FRIENDS HELP MAKE US FEEL GOOD ABOUT OURSELVES.
  THEY LISTEN TO OUR PROBLEMS, THEY LAUGH AND CRY WITH US.
  PEOPLE WITH DOWN SYNDROME ARE NO DIFFERENT - ESPECIALLY TEENS.
  LIKE YOU, MOST TEENS WITH DOWN SYNDROME WOULD MUCH RATHER SPEND TIME WITH FRIENDS THAN WITH THEIR PARENTS.

• YEARS AGO, WHEN BABIES WITH DOWN SYNDROME WERE PLACED IN INSTITUTIONS, HAD VERY LITTLE CONTACT WITH OTHERS, AND WEREN'T TAUGHT SKILLS SUCH AS READING AND WRITING, THEY DID NOT LEARN TO DO THESE THINGS.
  TODAY, THINGS ARE VERY DIFFERENT. BABIES WITH DOWN SYNDROME GENERALLY LIVE AT HOME, GO TO SCHOOL, AND ARE TAUGHT SKILLS. MANY CHILDREN WITH DOWN SYNDROME ARE NOW LEARNING TO READ AND WRITE.
  THE LEVEL OF READING AND WRITING ACHIEVED WILL VARY FOR EACH PERSON, JUST AS IT DOES AMONG YOU AND YOUR FRIENDS.

• THE CAUSE OF DOWN SYNDROME IS UNKNOWN. A MISTAKE OCCURS IN CELL DIVISION AT CONCEPTION AND RESULTS IN DOWN SYNDROME. NO ONE IS AT FAULT, NOT THE MOTHER OR THE FATHER.

• YOU ARE NOT ALONE. MANY OF US DO NOT KNOW HOW TO REACT IN CERTAIN SITUATIONS. IT IS HARD TO KNOW WHAT TO SAY TO A FRIEND WHOSE PARENTS ARE DIVORCING, OR TO SOMEONE WHOSE MOM JUST DIED. AND IT IS OFTEN HARD TO KNOW HOW TO APPROACH SOMEONE WHO LOOKS OR ACTS DIFFERENTLY FROM OUR EXPECTATIONS.
  THE KEY IS JUST TRY. SAY HELLO, TALK ABOUT YOURSELF,
  ABOUT WHAT YOU LIKE TO DO. SPEAK JUST A LITTLE MORE SLOWLY, AND WAIT A LITTLE LONGER FOR A
  RESPONSE. SOON YOU MIGHT FIND YOURSELF WITH A NEW FRIEND.

Courage
(Words and music by Bob Blue Sung by Alyson Faiwell)

A small thing once happened at school
That brought up a question for me -
And somehow, it forced me to see
The price that I pay to be cool.

Diane is a girl that I know.
She's strange like she doesn't belong.
I don't mean to say that. It’s wrong.
We don't like to be with her though.

And so, when we all made a plan
To have this big party at Sue's,
Most kids in our school got the news,
But no one invited Diane.

The thing about Taft Junior High
Is secrets don't last very long.
I acted like nothing was wrong
When I saw Diane start to cry.

I know you may think that I' m cruel.
It doesn't make me very proud.
I just went along with the crowd.
It's sad, but you have to in school.

You can't pick the friends you prefer.
You fit in as well as you can.
I couldn't be friends with Diane,
'Cause then they would treat me like her.

In one class at Taft Junior High
We study what people have done
With gas chamber, bomber and gun
In Auschwitz, Japan, and My Lai.

I don't understand all I learn.
Sometimes I just sit there and cry.
The whole world stood idly by
To watch as the innocent burned.

Like robots obeying some rule,
Atrocities done by the mob.
All innocent, doing their job.
And what was it for? Was it cool?

The world was aware of this hell.
But nobody cried out in shame.
No heroes, and no one to blame,
A story that no one dared tell.

I promise to do what I can
To not let it happen again
To care for all women and men.
I'll start by inviting Diane.

See Me Beautiful

See me beautiful
Look for the best in me
It's what I really am
And all I hope to be
See me shining through
In everything I do
See me beautiful

See me beautiful
Each and everyday
If you would take a chance
Then you might find a way
To see me shining through
In everything I do
See me beautiful

I may be crippled, I may be slow
There so much more to me
I want you to know

See me beautiful
Look past my outside
See my hopes and dreams
And know that I have tried
To see the best in you
And all I'm asking you
Is see me beautiful

You may have brown skin,
I may have white
But that's no reason for us to fight

See me beautiful
Look for the best in me
It's what I really am
And all I hope to be
See me shining through
In everything I do
See me beautiful
Audio-Visual Resources

See Me Beautiful, produced by the Manitoba Down Syndrome Society, 1997.
This short, four minute video shows snapshots of people with Down syndrome (from newborn to senior citizens) accompanied by the song See Me Beautiful (words enclosed in the resource kit).

It's O.K. to be Different, produced by Ups and Downs, Calgary Down Syndrome Association, 1996. This 12-minute video, narrated by an adolescent, gives information on Down syndrome and on the integration of children with Down syndrome into the regular school setting. Information is presented by a physician, classroom teacher, administrator, parent, and adolescent peer.

Yours to Keep, National Down Syndrome Society. A wonderful portrait of John Taylor, an engaging, ambitious teenager who happens to have Down syndrome. Approximately 72 minutes in length, this video could be previewed to determine the most appropriate parts to show the class.

Starting Small - Songs for Growing People, Bob Blue and Friends, Black Socks Press, 1990. Courage is the song from this audio-tape which lends itself well to this presentation. Words are enclosed in the resource kit.
 

Print Resources

Fleming, Virginia. Be Good to Eddie Lee. New York: Philomel Books, 1993.

Kingsley, Jason and Mitchell Levitz. Count Us In: Growing Up with Down Syndrome. New York: Harcourt Brace and Company, 1994.

Stray-Gundersen, Karen. Babies with Down Syndrome - A New Parents Guide. U.S.A.: Woodbine House, 1986.

Selikowitz, Mark. Down Syndrome: The Facts. New York, Oxford University Press 1990.
 

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