How to Raise a Child with Down Syndrome


This condition was first described by Dr. John Langdon Down in 1866. Although he couldn’t iden­tify the source of the problem, he was able to list a number of common physical and psychological features, and it became known as a “syndrome.”

Almost a hundred years passed before scientists were able to demonstrate that the defect lies in a child’s genetic structure. In 1959, research revealed that Down’s syndrome originates in the baby’s chromosomes, and that the condition can be diagnosed by analyzing a sample of the baby’s blood. With Down’s syn­drome, each parent has normal chromosomes, but their baby has an extra chromosome in pair no. 21, making a total of 47 per cell, instead of the usual 46. This form of the condition is known as standard trisomy and accounts for 96 percent of all children with Down’s syndrome. A small percentage of babies with Down’s syndrome have either translocation, in which one of the no. 21 chromosomes becomes attached to another chro­mosome; or mosaicism, in which some of the cells have 46 chromosomes and some have 47. Since this latter form of the condition involves a mixture of affected and nonaffected cells, children with mosaic Down’s syndrome may look less affected than other babies with Down’s syndrome and may show better development.

Down’s syndrome is present in approximately one in seven hundred babies, and occurs by chance. Research studies have shown that the likelihood of a baby being born with the condi­tion increases significantly when the mother is thirty-five years of age or older at the time of conception. That’s why prebirth screening techniques are targeted at this older age group.

The traditional screening technique for detecting Down’s syndrome in the unborn baby is amniocentesis, in which a fine needle is inserted into the womb so that a small amount of amniotic fluid can be drawn off for analysis. There is a slight chance that this process may stimulate a miscarriage, so the test is restricted to those women in the high-risk category. Other types of screening tests are available, including chorionic villus sampling (CVS), fetal blood sampling, and maternal blood sam­pling. However, none of these techniques are as reliable as amniocentesis for accurately diagnosing Down’s syndrome.

Children with Down’s syndrome share certain physical char­acteristics, although not all features are present in every child. As a result, the condition can often be identified in the first few days of a baby’s life. Common signs include floppy muscles and loose joints, an extra fold of skin at the inner corner of each eye, a low nose bridge, a protruding tongue, and a small, straight mouth. In the first week, a baby with Down’s syndrome may not gain as much weight as would normally be expected.

Health difficulties are associated with the condition. A child with Down’s syndrome is prone to chest and sinus infections. Cardiac problems may occur—varying from a minor murmur to a more serious defect. Therefore, medical specialists always pay close attention to the child’s heart development, especially dur­ing the first year. Difficulties with eyes and ears are common. Speech may be unclear because of poor muscle tone in the child’s mouth. The average life span of someone with Down’s syndrome is shorter than normal, but some people do live beyond the age of seventy.

Virtually all children with Down’s syndrome have some form of learning difficulty, ranging from mild to severe. They need a stimulating environment in the preschool years. Language development is frequently delayed, though useful speech is often acquired eventually. Speech therapy may be helpful, and many attain a purposeful degree of independence that extends into adult life.

At one time it was assumed that children with Down’s syn­drome, whatever their level of development, had such severe prob­lems that they could not benefit from regular primary classroom education. Most pupils with the condition automatically attended segregated special schools with smaller classes and specially trained teachers. Education experts have begun to question the value of segregated special schooling. Many local school boards are ready to accept the principle of integration and are increasingly willing to support pupils with Down’s syndrome in local primary schools. Some local authorities start the process of integration in kindergarten, which makes it easier at the primary school stage. Provision does vary from school board to school board.

Parents may fear that, while integration is acceptable in principle, it doesn’t work. A study that compared the develop­ment of eighteen pupils with Down’s syndrome who attended ordinary schools against the development of eighteen pupils with Down’s syndrome who attended segregated special schools for children with moderate learning difficulties found that the children who were mainstreamed made significantly more progress than those who were segregated, in terms of numerical ability, comprehension, and mental age.

Decisions about schooling of any child with special needs should only be made after detailed consideration of the indi­vidual child’s educational, social, medical, and psychological needs, and of the educational facilities and opportunities pro­vided by the local school board. At least, now more parents are offered a choice.

Not every parent wants their child with Down’s syndrome to attend a local primary school. The attractiveness of a child moving at her own pace, the confidence that special equipment and learning materials are readily available whenever needed, and the knowledge that the child can get the teacher’s individ­ual attention when necessary make many parents still favor seg­regated special schooling.

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About the Author: Alan Kennon lives a very happy life with two kids and a lovely wife. He likes to share his life time experiences with others about how they can improve their lifestyle and personality.

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