Prathyasa — The Down’s Syndrome Support Group
March 25, 2010
Amrita School of Medicine, Kochi
Down’s syndrome is among the most common genetic cause for mental retardation in children. It is estimated that it affects nearly 1 in every new-born 800 children. Having a child with Down’s syndrome is by no means easy for the parents.
Amrita’s Department of Pediatric Genetics and Human Cytogenetics, recognizing this, instituted Prathyasa, a support group for parents having children with Down’s syndrome. The support group was inaugurated on March 21, the International Down’s Syndrome Day.
“Motivated parents can together embark on ventures like special schools, vocational training centers, physiotherapy centers, counseling centers and job opportunities for these children,” stated the faculty of the department.
“Experiences and reassurances of parents will definitely be useful to a couple having a baby diagnosed with Down’s syndrome. The confidence they can impart to the couple will mean much more than anything the doctors can do.”
MAM General Secretary, Swami Poornamritananda Puri, lit the lamp at the inaugural function. With his benedictory address, Swamiji also released an information booklet on the Down’s syndrome.
Others who also spoke included Dr. Sheela Namputhiri, HOD of Pediatric Genetics, the President and Secretary of Indian Academy of Pediatrics, Kerala Chapter — Dr. Jayakumar and Dr. Ramesh, respectively.
What are some of the characteristics of children with Down’s syndrome?
“Usually they are very lovable children,” the speakers explained. “They love their family members and expect the same in return. Try to make their lives comfortable. They are usually very straight forward.”
“With the help of this support group, get togethers, picnics or sightseeing can be arranged so that the lives of these children and that of their parents can be made happier. These children are very fond of music. They can be taught the use of musical instruments like tabla, guitar, violin, etc.”
And what about the regular, day-to-day things?
“Parents can expect some delay in their child afflicted with Down’s syndrome in attaining various developmental milestones. A normal child is expected to smile by looking at face by the age of 2 months, hold the head erect by 4 months and sit without support by 8 months.”
“Physiotherapy is very important for attainment of various developmental mile stones as early as possible. An expert can train parents so that they can continue the therapy at home. As the child attains one milestone, physiotherapy is modified and child learns sitting, standing, walking etc.”
“The aim is to eventually help these children become capable of independent living. We can teach them how to tell the time, read the calendar date, how to purchase common items from a shop, how to count money, how to cross the road, etc. Most are capable of attaining these skills.”
“As they grow up, they should be given training in some jobs. Usually jobs which involve repetitive tasks are more suited. Making photostat copies, making paper covers, paper plates and cups, stitching buttons on clothes, making candles, binding books, etc., although they may need some form of supervision constantly.”