For our friends and parents: People with Down’s syndrome play six songs in a band during a celebration of World Down’s Syndrome Day, in Ciputat’s Kandank Jurank community in Banten. (JP/Kili Pringgodigdo)
As many as 200 children with Down’s syndrome (DS), from Ciputat’s Kandank Jurank community in Banten, celebrated the World Down syndrome Day with their parents over the weekend.
They took turns singing cheerful songs with their friends and dancing to the melody.
Dodo showed off his drumming to an audience of parents and friends, while 23-year-old Kartika, nicknamed Noni, recited a long poem about having DS.
“If a child with mental deficiency is able to talk about herself, this is what she would say. I am a person with a mental deficiency. My parents told me when I was a fetus in my mother’s womb, they never stop praying that I would grow healthy, strong, and smart...” Kartika recited to the crowd.
With a theme titled “I exist, I can”, the event was held by the Affiliation of Parents of DS children (Potads).
DS is a chromosomal disorder first reported in 1866 by a British doctor, John Langdon Down. DS leads to the impairment of sufferers’ physical and intellectual development.
With one in every 700 people born with DS, Indonesia has about 300,000 people with DS.
Olivia Sitaresmi, head of the event’s committee, said World Down’s syndrome Day was celebrated so that parents of DS children could meet and give each other support.
“We have to be especially patient and support children with DS with loving care. That’s the most important thing,” said Kartika’s mother Henny Tjoa.
She said support from the family and teachers was crucial. When she found it hard to cope with raising her DS child, she asked for the help of experts and other parents who have DS children. A child with DS might need a year to learn something a child without DS would learn in a month.
“But I’m grateful to God. She might be less privileged mentally, but God has given her so many blessings,” Henny said about her daughter who learned English without any mentor.
Dik Doank, a musician whose community facilities were used for the event, said, “These DS children are gifted. Some of us might see them as deficient, but it’s just because we, average humans, cannot see their qualities. They are gifted.”
Dian HP, a musician who prepared the younger DS kids for the percussion show, said it took six months to train them for the six songs.
“They actually love music very much! They follow the rhythm and every beat,” said Dian.
Sriwahyuning, mother of 10-year-old Abil, advised parents with a DS child not to be embarrassed when introducing their child into society. This will help them cope better the situation, she said.
“When you have a special need child, people around you are capable of saying anything about your child, from harassing to supporting words. But when I gave birth to Abil, after three days in the hospital, I wasted no time introducing Abil to my relatives and neighbors,” said Sriwahyuning.
“[We realized] If we were open about it [her special need], then people would also be open to share information and we would receive more help and information when caring for our child,” she said.
She said quit her job when a psychologist advised her that her child needed her care.
She took her now 10-year-old child Abil for monthly physical therapy from when Abil was three months old until she reached her ninth birthday. She said DS children need physical therapy as their muscles were weak.
Later on, her child needed occupational and speech therapy.
“If everything goes well, then bring your child to school, preferably a general school that accepts special need children as it is better for their social life,” she said.
She advised parents not to treat their DS children any different from their other children. For those who had more money, she suggested given their DS children the opportunity to learn any form of art, music or dance.
“Music therapy is good to maintain their emotions in balance,” she said.
“Sometimes these children have high energy levels that they cannot control. Music will help bring sooth those energy levels.” (iwp)