There was something different about Vivek. He ignored people when they called him and was impervious to sounds like an ever-silver utensil falling on the floor. His grandfather thought he was deaf, but when someone turned off his favourite song on the music player, he would run in from a far off corner of the house to turn it back on, and noise from crackers made him dive under the table and shut his ears. It was after a lot of denial and mental trauma that Vaidehi came to accept that her son was autistic.
“Some parents agree that kids can be mentally retarded, but they refuse to believe THEIR children can be that way,” says a teacher from Madhuram Narayanan Centre for Exceptional Children.
Vaidehi had a difficult time teaching Vivek — who is now 24 and can now care for himself — even the basics. She even took him to the toilet when she went, to show him how it’s done. Further, integrating these children into society is really a challenge. “Why can’t you keep your brainless child under lock and key? He just threw a brick from the terrace,” the apartment watchman yelled at her once. Shocked, she went to the terrace, only to find that other kids too were throwing stones and Vivek was just aping them. A hyperactive child, he would suddenly go missing from the house and after making the family go on a wild goose chase, come back home and switch on the computer like nothing happened.
“The thought of the ‘dream first child’ being fractured is unbearable,” says Uma Sridhar, a parent who has now become a special educator. And several parents somehow want to ‘cure’ their children of the condition, and keep seeking out remedies from family members – go to this doctor, try this treatment and so on. “By the time the parents come to terms with the child’s condition, crucial time is lost in the child’s formative years,” she points out. When Vivek’s condition was explained to family members, they reacted with an overdose of sympathy, saying it was hurting that he would be “useless”. But children with mental retardation are all like snowflakes – each one is unique and they have their own abilities.
After assessing each child personally, educators sit down with parents to tell them what comes next.
Many children can be trained for a vocation — for instance, making candles, paper cups and phenyl, mat-weaving and others. “Training the special child, at every single milestone, the parent feels like preparing for an IAS exam,” says Uma. “But when a child achieves something after so much effort, it is an out-of-the-world feeling.” Uma has now adopted a normal child and the familial bond a normal child shares with her special sister – complete with sibling rivalry - is indeed noteworthy. But what if both the siblings are that way?
Sudha and Padmanabhan, a couple with two special children who are dependent on them for the A-Z of day-to-day life, say they have spent their entire lives just being with the children and helping them grow up. “I gave up my career and took voluntary retirement just to care for them,” says Padmanabhan, while Sudha says it’s all about compromise and for parents of special children, their entire lives start revolving around them. Who will care for 32-year-old Srivatsan and 27-year-old Pavithra after their parents are gone? “It’s a scary thought, but we just keep doing our best without expecting anything in return,” says Sudha. There are homes for such children, but the thought of leaving them in someone else’s hands after years is not a good one.
Most parents accompany their children to special schools initially, learning how to tackle their children and also getting reassured by other parents that they too are going through the same thing – an effective support mechanism. “The awareness among parents has definitely improved, thanks to how easily material on the subject is available now online and otherwise,” says Uma.
“My whole life took on a new meaning after Daniel came into our lives,” says his mother, who initially wanted to be a housewife. “It was because of Danny that my life turned better, I got to know the outside world,” she says. She adds that parent organisations have played a major role and that their social lives too have been enriched.
However different they are, these children are still capable of love and affection, and along with them, the parents too go through a rigourous learning experience. “Whenever my husband is out and someone knocks on the door, Pavithra will cry out, ‘Appa?’ thinking he’s back,” says Sudha. Now isn’t that really special?