Kerala had made tremendous progress in reducing the incidence of diseases through vaccination and other public health initiatives. Instances of blindness and deafness are fewer now. At the same time, brain-related diseases and disorders are on the rise despite advances in medical technology. Nobody knows why.
A decade ago, 10 out of 10,000 newborns were estimated to have been affected by autism. The latest data from the World Health Organization says one child in every 88 contracts the disease. One explanation for this is the increased instances of detection.
Also read: Young minds snuffed out by diseases and social apathy
However, experts point to environmental, social and psychological factors that contribute to the jump in reported cases of autism. Recent studies in the United States have suggested that even air pollution can make a newborn autistic.
These observations by Dr M.K. Jayaraj are a warning sign. The one-man commission appointed by the Kerala government wants the society and the government to make timely interventions to make this a better place for children suffering from brain-related diseases.
Nowhere to go
Abhin is 12 years old. The inmate of the State Institute for the Mentally Challenged at Pangappara in Thiruvananthapuram has nowhere to go. Abhin’s parents parted ways due to his condition. Neither of them claimed him. His grandmother took charge of him for a while. Even she could not provide him support for long as she herself was at the mercy of her other children. They did not want the mentally challenged boy to grow up in their house. He found refuge in the institute at Pangappara.
Medical science has not proved that autism, cerebral palsy and mental retardation are curable. At the same time, a lot can be done to make the patients’ life bearable. Science can cut down the number of children born with mental disabilities by 80 percent, a WHO study says.
Jayaraj Commission has recommended that genetic diseases should be made a part of the curriculum and students in eighth and ninth standards should be assigned projects to study the lives of their unfortunate counterparts.
Premarital genetic counselling is compulsory in developed countries including the United States. Pregnant women have to receive vaccinations to prevent disabilities in their children. Medical facilities have to be expanded to diagnose genetic defects in the foetal stage and awareness campaigns have to be stepped up.
Inbreeding is a major cause in defects of brain in newborns. A census by the Kerala government found out that 26,901 persons with birth defects were born to parents who were related. As many as 5,016 mentally challenged persons, 8,059 persons with multiple disabilities and 333 children with cerebral palsy were born to parents who had blood relation.
Poverty, isolation
A survey done by Sarva Siksha Abhiyan in Kozhikode district has identified 1,017 children who did not go to a school because of their physical and mental conditions. They were mostly bogged down by cerebral palsy, mental retardation and bone diseases. More than 60 percent of these children had acute disabilities.
As many as 100 of the 178 children who suffered from cerebral palsy were helpless with conditions such as incontinence. About 75 percent of the families identified in the survey lived in abject poverty. They had lost their financial stability to the illness of the children. The treatment placed a huge financial burden on them. Most of them had even lost their livelihood because they had to stay at home to take care of the helpless children.
Even in slightly well-off families, mothers bear the brunt of their children’s illnesses. They are forever bound to their homes, tending to the children. This social isolation leads to heightened levels of stress and associated illnesses. Many families have been shattered by the birth of a child with some kind of a defect. The survey even stumbled on parents who took to drinks to escape the hard realities.
Most of the children are denied proper treatment. The panicked parents go from doctor to doctor and even to quacks for quick gratification. This deprives the children of continuous treatment and better care, hampering the little progress we could have made.
A family’s fortunes change even if one child is born with mental retardation. A major chunk of the income will go on the treatment. One of the parents will have to quit job to be with the child. The situation is many times worse in families with more than one disabled child. They are not provided with medical care for want of money. Even the government is not of much help.
Where are the caregivers?
Another problem is a lack of institutions that can ensure proper treatment for disabled children. The experts and infrastructure we have is no match to the increasing number of children who are in need of care. The lack of facilities coupled with the parents’ ignorance make the children’s life miserable. A child with limited motor skills can do better if his house interiors lack steps. Even that is not assured because the parents are not aware of it.
To avail of the government benefits is more complex than tending to the children. Many of the parents are not aware of any benefits due to them. The local self-government bodies have a duty to ensure that the beneficiaries receive government aid but they are guilty of criminal negligence some times.
The social isolation affects the mental health of the parents as well. They confine the children to the house to avoid the awkward situations in public places. Society is to blame here. Outsiders most often wait for a chance to make fun of the situation. As a result, the parents keep to themselves and lose all hope of future.
Like all children, the disabled kids want to play with others. They are denied of their fundamental right of companionship because the parents are scared to face the world.
Healthy pregnancy in focus
A lack of care during the pregnancy months and the problems arising at the time of the delivery contribute to birth defects that affect the brain. Such incidents are on the rise in Kerala, says Institute for Communicative and Cognitive Neuro Science (ICCONS) director Dr P A Suresh. As many as 21,000 children have sought treatment at the ICCONS campuses in Thiruvananthapuram and Shornur. Almost 1.4 of every 100 children born in Kerala are autistic, a study by ICCONS says. US Autism Society says incidence of autism has gone up to 1 in every 56 children.
Brain diseases such as autism and cerebral palsy cannot be completely cured. The children who suffer from these diseases are not even assured of the treatment for the physical and mental problems associated with them, Dr Suresh says. Thyroid problems, vitamin D deficiency disorders and epilepsy can be treated with proper care.
The social attitude towards these children has to undergo a sea change. When disabled children are treated and rehabilitated to schools, parents of the other students object to their presence, Dr Suresh says.
Even the Jayaraj Commission has pointed out this unfortunate trend. Many parents are ruled by ignorance when they object to the presence of this children in the class room as part of a policy to bring them to the mainstream.
Many parents wish that their disabled child dies before them. They are not cruel but just concerned about the bleak future that awaits the child in their absence. Jibin’s parents have committed suicide, leaving the special child under the care of the aging grandfather. So have the parents of Ganga and Geetha in Thiruvananthapuram. “I am not the only one to thinks like this,” Prabhavathi Amma says. “I know a lot of parents who have three or four children like these,” she adds.
