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Friday, 21 March 2014 03:06 - - {{hitsCtrl.values.hits}}
The United Nations General Assembly has declared 21 March as World Down Syndrome Day (WDSD).This declaration signifies inviting attention of countries, to ensure the welfare and development of intellectual and physical abilities of individuals with Down syndrome in the world. The intention of the day is to raise public awareness and to promote programs that help people with Down syndrome (DS) to enjoy their lives participating in social activities productively and become independent citizens in the civil society.
Countries around the world are planning to mark the ninth anniversary of the day on 21 March, 2014. Prior to getting into details of commemorating the day, it would be useful to define the term DS and its implications over the persons affected. The recognition of Down syndrome dates back to the 19th century when a British Physician called John Langdon Down made a comprehensive description on DS in year 1866. Afterwards it was known as Down’s syndrome or Down syndrome.
Later, 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 his 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 the creation of the abnormal characteristics of Down syndrome obstructing the natural course of mental and physical development of a person.
Researchers are still struggling to learn the exact cause for this chromosomal disorder. There are different arguments such as late marriages, having large number 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. Sri Lanka does not have incorrect information on incidence of Down syndrome. It is observed that there are 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 9 years in 1910 to the range of 50 to 60 years at present. Social stigma attached to these children also has constructively changed over the years. In the past, the children with Syndrome were labelled as imbeciles, mongoloids, and 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 is a result of his past karmic action. During ancient times when the term Down syndrome was not heard of, the Lord Buddha condemned discrimination of powerless and vulnerable segments of society needing others support and care. Helping the feeble members according to Buddhism is a skilful action that can gain enormous benefits.
He admitted that any weak person can make his achievements if he is trained systematically. Organisations and medical researchers working with affected children have proved that children with DS can flourish their lives if opportunities are provided confirming the argument of Lord Buddha.
Diri Daru Piyasa, A School for Children with Special Needs, in Sri Lanka has been in operation nearly for 12 years. This organisation has established the fact that if proper care with patience and affection are given they are likely to improve their skills faster.
Sri Lanka has to mark The World Down Syndrome Day to open up new avenues to provide opportunities helping children with DS to participate social activities fruitfully. The first step should begin at home 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 like dressing, washing, taking meals etc. the rest of the family members need to treat the child dearly and nearly. 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. Preschooling 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 with opportunities for further development of working as a team, making friendships with normal fellow students, attending recreational activities and understanding the world outside home etc.
During teens directing them for vocational training like gardening therapy will improve wide range of skills. Children with Down syndrome are susceptible to heart defects, ear inspections, sleeping problems and thyroid disorders. Parents need to draw attention arranging appropriate medical treatments on time for such ailments. Genetic counselling for couples who postpone parenting is also an important aspect encouraging them to have children at early stage of their life.
Constructive public attitudes towards 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 young age itself, they need to be integrated into the society from preschool to schools, health care systems, 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 them down as feeble ones and a burden to society.
As genuine Buddhists this message 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 can be reached via [email protected])
