It is common knowledge that COVID-19 has thrown normal life off gear across the globe. From lockdowns that restricted free movement of people to strict guidelines on wearing masks and adhering to government-imposed curfews, people across all walks of life are bearing the brunt of the pandemic.
Parents of children with disabilities like autism, cerebral palsy and so on are among those worst affected by these developments. While children in mainstream schools have been attending online classes, many schools for children with disabilities have not provided any support for the parents to bridge the gap in education. There are, however, a few exceptions.
Instant messaging platforms like WhatsApp have played a major role in providing the much-needed support that the parents need in these testing times. While a few school teachers have been sharing their tips to keep the children engaged, it's the community of parents which has really come together to ideate and soldier on.
Santhi's son Iraiyanban was diagnosed with autism early on and she tried sending him to a mainstream school. However, this didn’t work out well and she switched him to Satya Special School in Puducherry a few years ago.
“After the lockdown happened, we parents started feeling restless because we didn't know how to keep our children occupied and support them, to make them feel comfortable at home. My son used to bring me the bag, the vehicle keys etc., to indicate that it is time to go to school every day,” Santhi says. But with a WhatsApp group already in place with a few teachers from the school, it was just a matter of time before the parents started interacting more with each other.
“For example, nowadays when I narrate a story for my son, I also record it and send it to the group so that it can be narrated to other children who also like stories. Similarly, my son loves colouring. Other parents hence share nice pictures or colouring tips to make the activity engaging for my son. It is a collaborative effort and it is very useful for us as a group,” she explains.
When the government announced the lockdown first in the end of March, Manonmani was crestfallen. A mother of 12-year-old Rohan, a child with autism, she did not know how she would be able to manage him the entire day at home. School was usually a good and safe place for him to do a lot of activities and also learn, she tells TNM, adding that it gave her peace of mind to focus on household chores.
“My son has learnt to settle in comfortably due to timely intervention (by the school in providing online support),” she says. Pointing out that children do adapt well if the schools are proactive in their intention to support them, Manonmani says, “My son is an example. He didn't know how to open a closed bottle before the lockdown, but now he is able to unscrew the bottle, open taps etc. So I think it is important to provide constant support to these children.”
However, not everything can be done online. Chennai-based Ramya is struggling to keep her 20-year-old son occupied with all the open spaces that he used to frequent barred for entry. A working professional, Ramya’s son Prabhu was diagnosed with autism when he was a little over two years old. While she agrees that support groups online might help younger children, they might not be of great use for individuals with disabilities who are over 15 years of age.
"I used to put him in a lot of physical activities because that helped him burn out all the energy he had and helped him sleep well. But now, that's not possible since everything is closed. We unfortunately don't have any space for these children to go out and be on their own safely. We don't have that kind of support system," she explains.
Adding that parks and swimming pools used to be the safest spaces for her to let her son exercise for a while every day, Ramya says that these are probably among the few places where she can let her son move freely without the fear of him getting run over by vehicles.
"The government should open up these exercise spaces for them. The children are all accustomed to burning out their energy and now they feel tied down without any place to go to. Most of the children are non-verbal and high on energy. So generally we take them swimming or horse-riding or to the beach so that they can exhaust that energy," she says. She also points out that most mothers worry about the lack of physical exercises for their children above the age of 15 because of the looming risk of the pent up energy causing seizures in them.
"Swimming pools have special slots for children with special needs. The government can at least open those up with SOPs (Standard Operating Procedures). I don't think they (the government) understand the gravity of our issues. The children’s health is going for a toss," she adds.
Speaking to TNM, Johny Tom Varghese, Director for the Welfare of Differently Abled, Tamil Nadu, said that the state government is providing support online for persons with such disabilities. “We understand the concerns of the parents in these times, especially with children with autism and other disabilities. Support is being provided online because the pandemic is still going on around us. Parents can send a representation to the Commissionerate and we can take it up with the respective local authorities to see what alternative arrangements can be made available for the children,” he said.