Children with Down's Syndrome can turn useful citizens

by Mohan Lal Grero

March 21 has been declared as World Down Syndrome Day (WDSD) by the United Nations General Assembly. This declaration signifies inviting attention of countries, to ensure welfare and development of intellectual and physical abilities of individuals with Down's Syndrome (DS).

The recognition of Down's Syndrome dates back to the 19th century when a British Physician called John Langdon Down made a comprehensive description on DS in year 1866.

Later it was known as Down's Syndrome or Down Syndrome.

Medical scientists and organisations working with those affected by DS elaborated different aspects of Down Syndrome emphasising the areas needing attention. John Langdon Down explains that Down Syndrome is a chromosomal disorder in the human body.

The body of a normal human being consists of 23 pairs of chromosomes which contain genetic materials determining inherited characteristics from parents. Down Syndrome occurs when a child has a partial or full extra copy of chromosome 21 from his mother or father.

This additional material causes to create the abnormal characteristics of Down Syndrome obstructing the natural course of mental and physical development of a person.

Chromosomes

Researchers are still struggling to learn the exact cause for this chromosomal disorder.

There are different arguments such as late marriages, having a large number of children, marriages between cousins and postponing parenting.

There is no firm conclusion agreed by scientists on the exact cause of this genetic disorder. It is estimated that there are about seven million people with DS at present around the world.

The incidence of DS varies from country to country, but the average figure is one child with DS for every 850 births.

It is observed that there is a fair number of children with DS in Sri Lanka as well.

The common physical appearances of children associated with DS are flat face, small ears, and upward slanting eyes, protruding tongue, short limbs, weak muscles and loose joints. These children are slow in performing physical activities, developing motor skills, mental behaviour and personality development.

Physical features and behavioural characteristics vary from child to child. Due to development of medical technology and clinical treatments the life expectancy rate of persons with DS has increased from nine years in 1910 to the range of 50-60 years at present. Social stigma attached to these children also has constructively changed over the years.

In the past, the children with Down Syndrome were labelled as imbeciles, mongo lids, handicapped and mentally retarded. Instead, the term “differently able” came to be used widely.

The Buddhist interpretation is that a person is born with weak physical characteristics as a result of his past karmic action. During ancient times when the term Down Syndrome was not heard, the Buddha condemned the discrimination of powerless and vulnerable segments of society needing others' support and care.

Helping the feeble members according to Buddhism is a skillful action that can gain enormous benefits. He said that any weak person can achieve his targets if he is trained systematically. Organisations and medical researchers working with affected children have proved that children with DS can flourish if opportunities are provided, confirming the argument of the Buddha.

We have to help children with DS to participate in social activities fruitfully. The first step should begin at home by creating a conducive environment with good parenting practices. Children with DS expect love and care from parents and family members. Parents need to understand this and provide affection and extra care for the child and get him to learn self care skills such as dressing, washing, taking meals.

The rest of the family members need to look after the child. Intervention programs since early stages of the infant creating access to speech, occupational and physical therapy have proved effective.

Early intervention programs focusing developmental delays of children provide the basis and develop prerequisites for reaching next steps when the child grows old. Pre-schooling is another element that can play a vital role after early intervention programs.

Children with Down Syndrome are fond of developing relationships with those of the same age. At the preschool the child would develop language skills, motor skills and making friends.

The next stage is inclusive education that would give them opportunities for further development of working as a team making friendship with normal fellow students, attending recreational activities and understanding the world outside home. During their teens directing them for vocational training such as gardening therapy will improve a wide range of skills.

Children with Down Syndrome are susceptible to heart defects, sleeping problems and thyroid disorders. Parents need to draw attention arranging appropriate medical treatment in time for such ailments.

Genetic counselling for couples who postpone parenting is also an important aspect, encouraging them to have children at an early stage of their life. Constructive public attitudes towards the individuals with DS will also help these children involve in social activities with self esteem. Physical isolation from the rest of the society obstructs them improving their impairments of cognitive abilities and physical growth. Since a young age itself, they need to be integrated into the society from preschool to schools, healthcare system, recreational clubs, and social and community organisations, stage by stage, so that they reach targets and develop their full potentials into adulthood. We should not look down on them as feeble persons and a burden to society. As genuine Buddhists this message has to be passed on to the society. Children with DS have abilities to undertake challenges. They have a special light within them and let it shine.

The writer is Deputy Minister of Education