When a child is born, there are many expectations and much joyful anticipation. Parents often make great plans for their newborn offspring. When parents learn that their baby has a life threatening problem or developmental handicap, their world collapses. A combinations of reactions and emotions are evoked. It is indeed a most traumatic situation for a parent to face.
Rehana (name changed on request) had fears for her baby during her difficult pregnancy. Thirty seven years old and expecting her third child, she felt severe pain on her side for several months. However, her doctor insisted that everything was normal. "He told me to go home, put up my feet and rest. He dismissed my fears as normal fancies women go through during pregnancy," she recalled. Two weeks before the due date, the pain intensified and she could not feel the baby’s movements. She consulted a second opinion. This Consultant ordered a scan. He diagnosed that the baby was in difficulties and ordered an immediate Cesarean Section. The baby was born and had to fight for his life for four agonizing days. There was no movement at all during this time. For ten days, he could not even suckle and had to be fed with a dropper. Rehana and her husband were relieved that baby Ranjan survived the ordeal.
The parents then had to face the fact that their baby was developmentally handicapped. He had suffered brain damage during the pregnancy. "I always feel he would have stood a better chance if the doctor had diagnosed the problem earlier," Rehana said. Ranjan was slow to develop in the normal activities of an infant. He took 2 1/2 years to walk.
Rehana and her husband accepted the problem and took steps to do their best for the child. At 2 1/2 he was taken for an assessment and admitted to the Chithra Lane School for the Special Child. Although he got on well there, after three years, he suddenly refused to go anymore due to a change of teachers. "We did not know what to do next," Rehana said. "We put him in a Montessori school but he did not fit in there. It makes me sad to see him with other children of his age group. They call him to play and he looks blank. He has no real playmates." His mother says Ranjan cycles or plays by himself. He relates well with adults.
When Ranjan was six years old, he was admitted to the Individual Development Education School which was opened recently. Now eight years old, Ranjan is progressing, although very slowly. Rehana is impressed by the concept of education at the IDE School. At home, Ranjan gets the special love and encouragement he needs. "Perhaps we pamper him too much, but it is sometimes difficult not to do so," Rehana said. "I feel it is a combined effort between the home and the school. We are striving to make him independent. As long as he can feed himself, wash and dress himself, we have achieved something.
Seven year old Aravind is diagnosed to be partly autistic. Throughout his infancy, the milestones of development were delayed. He crawled only at one year, and walked four months later. At 2 1/2 years, he was not talking. "He never communicated with us or listened to us," said his mother, Thillai Sethuramalingam. "He was active but never played with other children or toys. His only interest was watching television". Thillai then got worried and they took the boy to a psychiatrist who told them that he had to be five years old to take a full assessment. The worried parents took Aravind to India when he was three years old. The doctors there diagnosed a developmental handicap and put him on medication. Aravind was placed in a special school which provided training for the mothers as well as the children. The mother had to accompany the child daily. After four months Aravind and his parents had to return to Sri Lanka since the father’s business was here.
The Sethuramalingams have tried everything in their power to help their son. He was assessed at the Children’s Resource Centre at Chithra Lane. He was taken to the clinic at Lady Ridgeway Hospital for six months. Still on medication prescribed in India, Aravind now attends IDE School. He also goes weekly to the swimming pool at the Chithra Lane School. Although he cannot swim, he stays in the water and walks around.
Since all her relatives are in India, Thillai often feels lonely. She does not go out very much because she is afraid Aravind would be difficult. "No one in my community has this problem," she said. "It is nice to meet other parents with children with special needs. At the school in India, I used to meet several other mothers. Since all had the same problem, we were able to relax and discuss our problems. Then we don’t feel so much alone."
"When parents learn that their child has a developmental problem, they often feel confused", says Yvonne Nab, Social Worker and Counsellor, attached to IDE School. "There are no set standards for children with special needs. The normal patterns of development do not occur. Parents start feeling insecure and disappointed. Some also feel a sense of shame and try to hide it from others. We are trying to have meetings of parents of similar children so that they do not feel alone in their problems."
"These children need special attention and care," continued Yvonne. "Children learn most from a safe and secure environment where they feel comfortable." Yvonne stressed that early intervention was vital for the child’s well being. It is very important that parents accept it at an early age and feel more comfortable with the situation. Children feel insecure at not being accepted. Yvonne feels that from an early age the children should go out and mix with other kids. They need to get used to others and be accepted by them. At IDE School, they are trying to get the kids to have sports with other kids. They take them shopping or out in buses. "Some of them have no contact with society at all," Yvonne said. "I do not agree with it. They should be integrated as much as possible."
"Parents also need counselling and proper information on day to day activities of the child," Yvonne said. "They should be aware of what to expect so that they would not feel they fail as parents." Yvonne finds that over protection of the children is common among parents of special children. "If you do everything for the child he or she cannot develop," Yvonne said. "I understand their concern, but it does not help the child. The child’s wish for independence has to be respected. On the other hand, one should not expect too much from the children. By being patient and respecting them, they improve in many areas. They need a lot of practice in learning skills and much effort goes into it. It is important to instill self confidence in them and make them feel they are important."
Hema Gunawardena, Principal of the Chithra Lane for the Special Child also stressed the importance of counselling, reassurance and support for the parents. "Many parents are reluctant to accept that the child can never be normal. However, early detection and intervention can prevent it becoming a major handicap", she said.
At the Children’s Resource Centre at Chithra Lane, children are assessed and rehabilitation started right from birth. Parents are counselled on how to stimulate the child and speed up the development process. At the Centre, psychologists assess the child. Physiotherapists and Audiologists attend to the physical defects and hearing defects. Other problems are referred to specialists who are experienced in dealing with the handicap as well.
Parents of special needs children usually worry about their future. At this school monthly awareness meetings are held for parents. Guest speakers are invited to advise on relevant matters such as financial security, social services and so on.
"Counselling centres for parents are very few," says Sr. Anastasia, Directress of Dayamina, which caters to developmentally handicapped over 15 years of age. Sr. Anastasia has long experience working with children with special needs. "The child can be trained from the early days," she said. "It can prevent the degree of slowness. It can also be supportive for the parents who suffer an emotional shock. They know they are not tackling the problem alone."
"The special child has low mental and physical capabilities and thus needs special care," says Dr. Rajaram Subbian, Consultant in Social Work at the National Institute of Social Development. According to Dr. Rajaram we need professional guidance, expertise and involvement to gauge the child’s IQ and potential. However, the family has the major role to play in developing the child’s potential to better his life.
Dr. Rajaram feels that as far as possible training must be in the home. Basic skills of living such as toilet habits, washing, dressing and feeding are always better at home, provided by the family. Additional specialized skills like education and vocational training can be done outside, preferably not leaving the home completely. If the child separates from the family, reintegration is more difficult.
"lt is a life long intervention," Dr. Rajaram said. "Caregivers need much support. Families of children with disabilities go through many difficulties. The child’s disability, their own disappointment and suffering, feelings of guilt or responsibility, non availability of professional advice and the extra care the child needs put more pressure on the families. Their social life may shrink and they may become secluded, which is counter productive to the child’s rehabilitation."
Ms. Jegarasasingham, Additional Secretary, Ministry of Health, Highways and Social Services says that this is a field not given much attention to by the Ministry or any other government institution. "We have realised this," she said. "Last year, an Act was passed for the Protection of the Rights of Persons with Disabilities. A National Council will be set up incorporating members of N.G.O.s working in the field, N.G.O.s of persons with disabilities, experts, consultants parliamentarians and so on." It is intended to create awareness first among the officials and through them and the media to reach the community. The available services will be made use of in a National Program to give maximum services to beneficiaries.
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