Awareness Pack for Primary Schools

Information for Teachers, questions frequently asked by Students, awareness activities for the classroom.

What is Down syndrome?

Down syndrome is a congenital defect which can result in intellectual and physical delay.  It occurs more frequently than any other specific kind of intellectual disability, and occurs in one in every 600 babies born in Australia.  The syndrome was described more than 100 years ago by Dr. Langdon Down - hence the name.

Babies with Down syndrome can look slightly different from other babies, and this is why they can often be recognised at birth.  There may be some small changes in their facial appearance, such as slanted eyes, tiny folds covering the inner corners of the eyes, and small ears.  The hands and fingers tend to be shorter than usual, especially the little finger.  The back of the head is less prominent than usual, and the profile is rather flat.  Muscle tone is often poor, so that when you pick up the baby he feels floppy.  Not every baby with Down syndrome has all these signs.  The diagnosis should be confirmed by chromosomal analysis.

Babies with Down syndrome do not look just like each other.  They are individuals with an individual appearance and will resemble their parents, like other children.  When they grow up they will have the typical features of Down syndrome but will also look just like themselves, marked as every person is with lines of their own experiences, good and bad.  Down syndrome knows no barriers to race, creed or colour.

What Does the Future Hold?

Each child is different and has a future.  For most, that future is probably better now than it might have been even just a short time ago.

Today, educational and medical techniques have made, and are continuing to make great advances in helping children with Down syndrome towards a life of dignity, meaning and independence.

What causes Down syndrome?  How did it happen? Will it happen again

The child with Down syndrome has 47 chromosomes instead of the usual 46.  The extra chromosome is number 21: this condition is sometimes called Trisomy 21.  All cells contain chromosomes - tiny particles in the cell nucleus which provide the blueprints for growth and development.  Normally, each cell contains 46 chromosomes.  Occasionally, when a cell divides to form an ovum or sperm, or after fertilisation, the division is not quite accurate, so that too many or too few chromosomes are present.  If a pregnancy results from one of these cells, the blueprint does not work effectively, and the development of the baby is altered.  Usually such a pregnancy miscarries, but sometimes the foetus continues to grow.  This is especially likely if the extra chromosome is one of the small ones.  One of the reasons why Down syndrome is quite common, occuring once in every 600 births, is because the extra chromosome is one of the smallest ones - number 21.

The reason why the cells divide inaccurately is not known, but it is known that this happens increasingly as the mother grows older.  The risk of a mother in her twenties having a child with Down syndrome is only one in 2,000, but the risk rises to one in 350 at 35 years, one in 100 at 40 years, and one in 30 at 45 years.  It has been found that, having had one baby with Down syndrome, the risk of another is increased, whatever the age of the mother.  It seems that some women have a tendency for their cells to divide inaccurately.  Even if you are under 35, there is one chance in 100 of its happening again.

In cases of classical Trisomy 21, there is no more risk for other members of the family having children with Down syndrome than for the rest of the population.

In about 4% of cases, Down syndrome occurs because two chromosomes, number 21 and another, are stuck together.  In this form the risk of recurrence is increased.  This is one reason why all babies with Down syndrome should have their chromosomes examined.  A small amount of blood is taken from the baby and the cells in it are grown in order to examine the chromosomes - the blood will be sent to a city laboratory if you live in the country.

Doctors, paediatricians or special genetic counselling clinics should be able to give parent advice about the risks of having other babies once the result of the chromosome test is known.  Genetic counselling is available to all members of the family.

There is a way to tell whether a pregnancy wil result in Down syndrome.  This is by amniocentesis, or pre-birth detection.  Amniocentesis is a special test done when the mother is between the 14th and 16th weeks of pregnancy by withdrawing some fluid from the liquid-filled space surrounding the developing baby.  Chromosomal studies done on the cells contained in the fluid, after culturing them for two or three weeks, will show whether or not the child has the normal number of chromosomes.  For the remainder of the pregnancy, the mother will not need to worry if, as usually happens, the result of the test is normal.

Several centres also offer a test which samples tissue, called Chorion Villus Sampling.  This is carried out at 8-10 weeks' gestation and allows more rapid (2-10 days) chromosomal analysis.

Health Issues

The child will have reasonably good health.  However, one of the more common health problems is congenital heart disease - about two in five children have defects in heart development.  The heart can be abnormal in different ways.  The mildest forms may correct themselves in time or cause little trouble to the child, and other heart problems need an operation if the child is to survive; the most severe will shorten life.

Also common are hearing and vision problems, especially squints.  All children with Down syndrome should have both hearing and vision checked regularly by a specialist, if possible, because visual and hearing defects may impede development if undetected.

Children with Down syndrome are also more prone to minor infections of the ear, eye (such as inflammations of the eyes or eyelids) or respiratory tract; they may have more common colds, more skin problems (such as rashes or sore lips) and suffer more stomach upsets and feeding problems than other babies, so that everyday infections may require more than average medical attention to clear up.  However, the conditions normally respond well to treatment.  It is worth noting that, when these children have common colds, because of the small passages in their ears, they are more prone to a temporary hearing loss.  Thanks to antibiotics and better medical care, the serious illnesses like pneumonia and gastro-enteritis no longer threaten the lives of these children.

Children with Down syndrome are usually slow to develop their motor skills - sitting, crawling and walking.  Physiotherapy from the earliest days can be a great help.

To sum up: if the baby with Down syndrome has no serious physical problems such as heart disease, and gets adequate attention for childhood ailments, he is less likely to have prolonged periods of sickness.

Educational Issues

Children with Down syndrome have a wide range of abilities which are determined by heredity and may be influenced by early stimulation.  The degree of intellectual disability may vary from mild to severe.  Most people with Down syndrome have difficulty with abstract thinking (e.g. complicated planning), but understand and manage everyday life adequately.

It is extremely important that teachers adopt a realistic attitude towards children with an intellectual disability.  While every effort should be made to extend and challenge these students to develop, at their own pace, to their maximum potential, there is no point in a teacher feeling guilty if the intellectually disabled child does not reach the standard of the other standards.

A great deal of progress has been made in recent years, and it is now realised that people with Down syndrome can reach much higher levels of personal development than was previously thought possible.

Common Questions and Answers in Relation to Down Syndrome

Q.   Are they born with it or do they catch it?

A.   No, children are born with it.  It is nothing you can catch - like a cold.

Q.   Will it go away when he grows up?

A.   No.  It does not go away.  There is no cure.

Q.   Do their other brothers or sisters have Down syndrome?

A.   Maybe if they have translocation Down syndrome; or children who are members of a family who have adopted more than one child with Down syndrome

Q.   Can they understand us when we talk to them?

A.   Yes, but you must speak in short sentences.  Some children with Down syndrome may use sign language.

Q.   Is it a lot of extra work having a child with Down syndrome?

A.   Not a lot, but it is extra work.  For example, they may go to an early intervention programme when they are quite young and need extra help later when they go to kindergarten and school, speech therapy to help them learn to speak, and physiotherapy to help them learn to run, walk, skip and play like you do.  Then we need to attend regular meetings with teachers and have extra doctors' appointments.

Q.   Why do they not speak properly?

A.   The child with Down syndrome may have frequent ear problems, which means he often can not hear as well as other children.  Your ability to hear can influence your ability to learn to talk.  Children with poor muscle tone will often have poor muscle tone of the tongue, lips and jaw.  This means they can not make the sounds/words as quickly as other children.

Q.   Can they learn things properly?

A.   Yes, but they may need extra help and it takes longer than it does for us to learn the same things.  They may not want to learn something or have individual preferences, just like us.  They may do some things well and some things not so well.

Q.   Can they play football, cricket, and basketball, and can they learn to swim?

A.   Certainly.  They can do all of those things, but some of the children may have heart problems, which means that they cannot run around as much because they get tired very quickly.

Q.   Can two people with Down syndrome get married and have babies?

A.   Yes.  They can get married, but they can't normally have babies because, in the majority of cases, the man is not able to become a father.

Q.   Can they work and earn money?

A.   Yes they can.  There are many jobs in the regular workforce that they are able to do.

Q.   How do they get on with their brothers and sisters?

A.   The same as anyone else does.  They are members of the family and they take part in all family activities.  Like all brothers and sisters,   

      they also argue with each other.

Q.   Can they ride bikes?

A.   Yes, but they need to be taught, just like you did.  They probably need to start with a three-wheeler bike, and it is often hard to learn how to push down on the pedals.

Q.   Will they always have to live at home?

A.   No.  When they are older, they will be able to leave home.  Either they can live in a unit or share with someone else.  They may need some help in some areas - for example with cooking and handling their money.

Q.   Why did you have a baby with Down syndrome?

A.   I don't know.  It just happened.  Sometimes it just  happens in nature.  It can happen to anyone.

Q.   Why do children with Down syndrome keep their mouths open and have their tongues hanging out?

A.   They may have poor muscle tone, and also their tongues may be set forward in their mouths.  Their mouths are open because, when they are young, they have small bones around their noses and cheeks abnd therefore it is easier for them to breathe through their mouths.  They may also get colds more often, and when you have a blocked nose you have to breathe through your mouth.  However, as children with Down syndrome grow older, their bones grow, and it becomes less difficult for them to breathe through their noses.  They need to be taught at a very early age to close their mouths and keep their tongues in, otherwise it becomes a habit which is hard to break. 

Guidelines for Awareness Activity Sheets

Intellectual Disability Fact Sheet

Facts

People who have an intellectual disability learn things slowly.  It may take them a long time to learn things that are easy for other people.

Some people who have an intellectual disability can learn almost everything you can learn when they receive special instruction and just a little extra help.

Special Needs

1. Activities designed in short steps or stages so that the person can complete the task successfully.
2. When communicating an idea, use as many concrete means of input as you can.  For example, use vision, hearing, touch, or personal "hands-on" experience whenever possible.
3. Education has proven to be the single most important intervention for persons labelled "intellectually disabled".  In it, there is a crucial role for individualised programs, appropriate teacher expectations, and a variety of suitable role models in the least restrictive setting.  There is no doubt that children and youth labelled "intellectually disabled" can be successfully integrated into a range of educational settings.

Skills for Relating

1. Keep conversation concrete and simple.  Use short, clear sentences.
2. Relate to the intellectually disabled person just as you would to any other person finding out his/her name, interests, etc

Stand Up - Sit Down 

Objective

This activity is designed to show the frustration experienced by some people with an intellectual disabiltiy when given a new task to learn.

Procedure

• Tell the children that you are going to give them a long list of things to do.  You will tell them ONLY ONE TIME.  They may begin the activity only after you have read the entire list.  They will not be allowed to ask any questions.
• Read (briskly): Stand up, sit down, stand up again, touch your toes, turn around three times, put your right foot up, put it down, pat your head twice, clap your hands four times, look over your right shoulder, sit down, stand up, stamp your feet three times, smile frown, cough, wave, sit down and fold your arms.

Discussion

• Observe the children's reaction.  Notice those who persevere and those who give up in frustration.
• Explain to them that this is what it feels like to some people with intellectual disability when they must learn something new.
• Ask them what could be done to make the task easier.
• Repeat the list of directions slowly and clearly, allowing the children to succeed at the activity.
• After they have finished, explain to them that people with intellectual disabilty need to be given directions one by one, in order.  They feel confused when they have to do many things together at once.  They are not "stupid".  It is simply that it takes them longer to learn.

Step-By-Step

Objective

This activity is designed to allow students to experience the process of breaking a learning task into smaller steps, such as is used to teach a person with an intellectual disability a new task.

Activity

1. Ask students to form pairs.
2. Ask the class to pretend they are going to teach their partners how to tie shoelaces and describe each step without showing them.
3. The other students are to do only what they have been told to do to complete the task.
4. After 10 minutes of frustration each pair should change over roles.

Discussion

• What was difficult about breaking down the task?
• What would it be like to have to break down everyday tasks into smaller steps?
• Explain to them that this is why it takes a person with intellectual disability a longer time to learn new things.

Complete the Story - Sally and Toby

Objective

Students will think about how they would react to a fellow student who has an intellectual disability.

Activity

Complete the story.

Sally was waiting at the bus stop with her younger brother, Toby, who went to the same school as Sally, but took longer to learn things.

Toby was throwing stones along the gutter while he was waiting for the bus and some bigger Year 9 students thought they would start throwing stones at Toby.  Sally protested but then the boys started calling them both names.

You came along to the bus stop to see that one of your best friends was calling Toby and Sally names and Sally was crying.  You tell your friend not to throw stones at Toby but he says Toby was throwing stones first.

Discussion

• What do you do now?
• How would you feel if Toby was your brother?
• What would you do so that it didn't happen next time?

Complete the Story - John and Stuart

John and Stuart always walk home together after school.  Today they decided to stop at the shop and buy chewing gum.

While John picked out a packet of gum, Stuart waited in line to pay.  He watched the lady in front of him while he waited.  The woman seemed to move very slowly.  She sometimes stared at people as they walked past.

When it was her turn to pay, she took all her money out of her purse very slowly and counted out each piece separately as she placed it on the counter.  Then the check-out girl had to help her find the right money.

John came up and stood beside Stuart.  When he saw the woman, he started laughing and said in a fairly loud voice, "Look at that dumb lady!"

The woman turned around and looked right at Stuart in rather a sad way.

Discussion

• How would you feel if you were Stuart?  What would you say to John?
• What would you do if you were Stuart?
• How would you feel if you were the woman?