The Kerala government on Wednesday, 10 May, announced relaxations in working hours for its employees who have children with autistic disorders, cerebral palsy, multiple disabilities, and mental retardation.
The government, in its order, said that one of the government employees who is a parent of a child with 40 percent or more such disabilities, will be given a relaxation in working hours.
A maximum of 16 hours out of the total working hours in a month will be allowed to such employees, it stated. This is in addition to the concessions currently granted to government staff.
‘Good, but a long way to go’
However, speaking to South First, parents of special-needs children said that the government still has to go the extra mile to ensure that parents are able to provide better care to such children while being employed.
“It’s a progressive decision by the Kerala government, but it has a long way to go. It will be helpful for parents who are near their children, but for the parents who are posted a distance away, it will be difficult,” Sivadas AK, a Kerala resident who runs an initiative — Parents of Autism Challenged Children — told South First.
He added that as a government employee, many of the parents lose all their leaves in just travelling from one place to another.
“I was employed with the central government and was posted in Patna, and my autistic kid was in Kerala. I had to exhaust all my leaves granted by the government, along with medical leave, to come back and take care of my child, which included taking my child to therapies and medical treatment,” said Sivadas.
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Communication and routine are key
Autistic children often require unique forms of support and understanding, and parents learn to navigate these needs while also nurturing a loving and supportive relationship.
“Autistic children struggle with verbal communication and parents find alternative ways to connect and communicate. This involves using visual aids or gestures to convey meaning, or finding alternative forms of communication such as sign language or picture cards. The process of learning to communicate effectively can be time-consuming and challenging, but it is an essential component of building a strong relationship,” Rajesh Ninan, a parent of a child with autism, told South First.
He added that when this communications starts, it’s the parents with whom the child tries to communicate and, most often, only the parents understand what their child is trying to say.
Another important aspect of the parent-autistic child relationship is establishing a routine. This might involve setting specific times for meals, playtime, and bedtime, or creating visual schedules that help the child understand what to expect throughout the day.
“You cannot go out of the routine. For my 19-year-old son, whenever the routine changes, it scares him,” said Ninan. He added that to maintain the routine, parents need to be present on time and this requires compromising at work.
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‘What about the private sector?’
Ninan, who works in the private sector, mentions that it’s not always easy to balance work with taking care of his son.
“After my son reached puberty, my wife left her job and took full-time responsibility of taking care of him. A few years back, my wife fell sick and was unable to take care of him, so I had asked for a day off from work. But I didn’t get it.
“Even today, when I reach the office late, my managers — in a humiliating tone — say that ‘you might be taking care of your son’. It’s not the fault of the manager, he also has deadlines, but it’s the private sector that forces us to work for hours without realising we have something important to do,” said Ninan.
He appreciated the Kerala government’s decision to provide relaxations to their employees. “However, the government should also think about parents who works in the private sector and the Rights of Persons with Disabilities Act, 2016, empowers the government to make rules regarding this,” said Ninan.
Sivadas said that, most of the time, government employees have to run from one office to another to get transferred to some place near where their child stays.
He added that during these transfers, even when a government employee takes their special-needs child with them, it breaks the child’s routine, along with a change in the environment and disrupted medical care.
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Sunder Rajan, who is the president of the Autism Society of India, told South First that taking care of autistic children is quite exhausting.
“The burden mostly falls on the mother, with the father taking care of the financial side of the treatment and the household. At a certain point of time, it becomes hard for both the parents and, in many cases, the father abandons the family,” said Sunder Rajan.
Sunder Rajan added that the Kerala government’s decision to relax the working hours of their employees is commendable, but there are many more aspects that the government has to consider.