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Parenting special children
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After getting over the trauma of accepting a child's disability, parents of special children go through innumerable hurdles, societal and otherwise, in their efforts to make the kids independent, write SUBHA J RAO AND M. ALLIRAJAN.
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WHEN ANDAL Vijayaraghavan speaks, her voice brimming over with emotion, you are forced to listen. After raising three special needs children, she knows what it takes to instil some sense of discipline in them. Her tears long dried, she talks with the understanding of someone who has accepted her lot.
Many parents go through hell before they reach that stage. Though the need for integrating special children into the mainstream is spoken about, the travails parents undergo to put them on the path of independence is not oft discussed.
Societal pressure is enough to put brakes on the parents' desire to allow their children to leave as normal a life as possible. "We even have trouble fixing houses for rent. People are reluctant to have us for tenants and neighbours are scared to let their children mingle with ours," agonises Susheela, the mother of a special child, at a meeting organised by Saarathy-PAMMAC — Parents Association for persons with Mental Retardation, Multiple Disabilities, Autism and Cerebral Palsy, Coimbatore.
Talk to these parents about their children and you touch a raw nerve. Though they have managed to accept their children's condition, many break down at the mere mention of the future. Even after the constitution of a National Trust to look after the welfare of these children, they wonder: "After us, whom?"
And, such parents have to work doubly hard at creating a bond with their children.
Says A. K. Bhaskar, the father of an 18-year-old special child: "They are always suspicious when they are the topic of discussion, wondering if we are talking ill about them." Even as he talks, his son walks in and gestures to his father to keep quiet. "When we get back home, he will ask me what I told you."
His countenance belies the strain he goes through in bringing up his son, who studies at the Vidya Vikasini Opportunity School (VVOS), Thudiyalur. His wife, who is in a government job, was transferred to Karur a year-and-a-half ago. Despite many pleas to officials, supported by medical documents, nothing has been done.
PAMMAC was started in September 1999 in a bid to enlighten parents about the avenues for such children and was registered in 2001. Its Secretary, K. Sankararaman, says no two kids suffer from the same problems, so each one has to be handled individually.
Talking about the acceptance process, he says: "We used to fight with doctors and anyone else who told us our child was not normal. It took many years for us to realise rehabilitation was the only option. You tend to believe in astrology and hold on to any straw of hope."
Ms. Vijayaraghavan is a role model for other parents, for she stands as proof that they can cope with the situation. "Be very, very patient. Don't compare your child with others. Only then will your child get confidence. Handle them like you are treading on glass," she says.
Her husband agrees. He wants parents to be realistic in their expectations. "My daughters are aged 32, 31 and 28. The first also suffers from physical disability. The other two have been attending school for more than 20 years. When my daughters chop vegetables, I am happy if they do it without cutting their hands. I don't expect them to cut it in the same size," he remarks. "Don't lose heart", he says. "After joining school, they tend to become more disciplined."
Parents are usually forced to stay at home to look after the children. This leads to frustration and stress build-up over the years. Filling this vital gap is The St. Annes Rehabilitation Centre for the Handicapped (STAR), Singanallur, which, besides educating children, also trains women to handle kids with special needs. They then go on to stay with the employers.
"We brought in a caregiver just a month ago. Now, I move out when I want to. She handles my daughters once they return from school," Ms. Vijayaraghavan says.
Also, special children don't take kindly to any change. Their environment must be the same. Minor changes can trigger mood swings, a parent says.
And, they are perfectionists. It comes naturally to them. "At times, you have them telling normal children how to behave," a parent says with a chuckle.
A caregiver in STAR, whose daughter has a recognition problem, says she has started identifying him partially only now. Kadher Sultan, a parent, says that when raised with normal children, special kids too learn. The normal sibling acts as a protective cover, he feels.
Akilandeshwari says it took her a lot of time to come to accept the fact that her child was not normal. Bhuvaneshwari, a fellow parent, breaks down when narrating how terrible she feels when relatives put down her child. "No one realises how different these children are. You cannot make them sit in one place for more than an hour," she adds.
C. Premaltha talks about how difficult it was to get admission for her daughter. That is a problem most parents face.
The schools either don't know how to cope with these children or they let them sit in the same class year after year. In some institutions, the trouble comes from other parents who are afraid to let their wards study with special children, the parents say.
The VVOS, started in 1981, now has 88 students. Its Director S S Jayalakshmi, observes that the children are not scared of authority. "They learn to take responsibility over a period of time."
In a bid to help parents of special children, the Swarnajayanthi Gram Swarozgar Yojana (SGSY) has been slightly modified to make it easier to sell products made by the children. In the vocational school, the kids learn printing and binding, candle making, chalk making, tailoring and the like.
Mr. Sankararaman says PAMMAC's aim is to increase the number of school-going special children.
Also, to help parents cope with the situation, fight for benefits, prevent exploitation and arrange for guardianship for those above 18 years.
Though special and normal children attend classes together in some institutions, integration as a concept is not very successful in India, he feels.
How does the forum help parents? For one, it enables them to meet others who are experiencing the same problems.
And, when they get together, it lets them give vent to their feelings. "Even if we meet 100 times, you cannot avoid not getting emotional," he says.
Due to the limited number of schools for such children, parents are sometimes forced to shift houses to stay closer to the schools.
Sukanya Devi from Tirupur is the mother of a six-and-a-half year old special child and a normal child who has just crossed one.
She defied the doctor's advice to confine her child at home and moved to Coimbatore to provide her daughter good education.
The teachers handling these children are exposed to both their affection and mood swings.
"Any fight at home and they take it out on us. At the same time, if a teacher misses out on a day, they rush to ask if he or she is unwell," the instructors say. Parents also say the children behave themselves in school. That is not the case at home.
Matilda, who has been teaching the severely challenged in the STAR for more than 10 years, says: "If we think of three goals in five months, it takes up to two years to fulfil them."
Indrani, who was teaching in a normal school, quit her job to look after a child with mild retardation after she evinced interest in learning.
"Now, she shows slight improvement," she remarks.
The parents of girls also worry about the physical safety of their children.
Mr. Vijayaraghavan says that despite many people suggesting that their daughters undergo hysterectomy, they have chosen not to subject them to that.
"A teacher from school brings them home and we take over from there," they say.
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