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'My
child is autistic'
A handsome youth, he sits near the dining table close to his grandfather. There are no outward signs that anything is amiss. Suddenly he lets out a sound.......eeeeeeeeeeee, swaying back and forth in his chair. Sahan, 21, is autistic, but that is not the problem. His father and mother, both professionals, accepted that when he was a little boy. They were living in England when he was born and it took some time for his mother to notice that all was not right with their baby. "He is our first-born and I was inexperienced. So it took awhile to realise that the baby was not doing the things he should be doing at a particular age. He was hyperactive and there were repetitive mannerisms. He also found it very difficult to adapt to new environments. His father accepted that he was autistic before I did. It took a little bit longer for me, for I kept questioning - why me? Now that is history. Sahan is loved for what he is, unconditionally," says his mother.
Their love for Sahan is unconditional but tinged with many fears. Fears which will simply not go away. Worries that will not let them rest, that keep nagging at them. Worries and fears shared by many parents who have autistic children. The most persistent concern is: What will happen to these special children after their parents are no more? The same thoughts are echoed by another professional who is the mother of a pretty six-year-old girl. The girl plays with two Pomeranians and a cat, while her mother relives the time she was born and the arduous task of getting information and a diagnosis on autism. "My daughter was born prematurely, but until she was two years she was okay. She was just starting to speak and played like any other child. Then there was a sudden behavioural change. A gradual reduction in speech and expression, a growing attachment to inanimate objects and inappropriate play," says her mother citing the example of a bicycle. "She would not ride it, but would keep it on its side and rotate the wheel." She was devastated. "I felt as if my life had ended. No one, not even the doctors tell you what to do. Was it my fault that my daughter was autistic? Should I give up my career? These were a few of the questions which caused mental agony," she says, with the hint of a tear on her cheek. She is a fighter and would not give up. She read up on autism and found that there was no cure. "But autistic children could be trained to lead a reasonable life. The child needs a lot of stimulation," she explains. "Even the parents, especially the mothers, need counselling to understand that they are not to blame or not responsible for their children being autistic. The children need good paediatricians who can diagnose the problem early and then psychologists and speech therapists." In Sri Lanka these are distant dreams for parents with autistic children. And it comes sharply into focus when we try to find out the numbers. There are no statistics. Says Sahan's mother, "Most doctors lump the mentally handicapped with the mentally ill, including those with schizophrenia, depression and drug addiction. There are no proper facilities for those like Sahan. What we hope for are residential facilities where children like Sahan can be kept in case anything happens to us. As long as we live, we will look after him, but what thereafter?" Sahan has a sister, eight years his junior. "But we cannot and will not expect her to make the sacrifices that we have made for him. It is not right. She has to get on with her life, do the things she wants to do and not be burdened at any age with looking after her special brother," the mother stresses. When you have a child the parents' hopes are high. Normal children grow out of their childhood - baby, toddler, child, adolescent, youth and adult. Each age brings with it joy and sorrow, pain and pleasure for the parents. Fathers and mothers have visions of their offspring achieving greatness, becoming doctors, engineers. But in the cases of special children, though they become adults they don't grow out of their chidlhood. They have to be helped even with their daily tasks. Sahan does not communicate or talk but takes his mother by the hand and shows her what he wants. There are also the temper tantrums when he cannot express himself. "The frustration boils over and he flies into a temper. But there is also the tender Sahan who comes out of his world and hugs me and kisses my hair," she says. We get a quick glimpse of that Sahan who gives his mother a gentle smile when she calls him for the photograph, acknowledging her explanation. In a sense, Sahan is a lucky youth, because his parents love him dearly and do not shut out the fact that he is autistic. They take him on holiday and try to get him involved in all activities. For a country which pays lip service to ensuring and safeguarding children's rights, what have we to boast of? There are no proper schools, except a handful for special children and no facilities at all. The parents are on their own and the tragedy is that most parents prefer to close their eyes to the reality and hide their children in their homes. Says the little girl's mother, "The government claims they have classes for special children, but who has evaluated them? The conditions are unsatisfactory. They are put together with children who have other difficulties and the teachers cannot cope. These teachers are just volunteers, not trained. They are doing a wonderful job, but is it enough?" The urgent need
is for: The need is
to have "respite" care because the best stimulation comes
from within the family. Knowledge and skills should be given within
the family, an expert said. |
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