How support groups run by parents of children with intellectual disabilities draw strength from the community during a pandemic

At a musical evening organised by SCAN in 2019. Photo: Special Arrangement  

After three days punctuated with false starts, there is finally some uninterrupted conversation with Mano Ranjani, one that lasts five minutes.

On the first occasion, a bawling two-year-old intruded upon the call, leading Ranjani to abruptly disconnect it to attend to the crisis at hand. Later, Ranjani texts to explain why a complete chat would have to wait still: she was shifting home, had to take her father to the hospital; and a mother of three, her eldest child is 11-years-old and autistic.

Every evening, Ranjani has a volunteer coming home to engage with her older child.

“That is the only time I manage to find some rest,” she says.

Despite the challenges thrown up by the pandemic — which requires her to play teacher and therapist at home — Ranjani continues to moderate seven WhatsApp groups under what is known as VOICE (Voice of Parents for Inclusion, Care and Empowerment of Children with Special Needs).

The four-year-old support group for parents of children having intellectual disabilities was started with 10 other parents. Now VOICE has grown to nearly 2,000 parents. Before the pandemic, parents would meet once in two months at Loyola College for a discussion, which was made possible by volunteers who would look after the children.

“There are days when the interactions never seem to cease, but that is the best aspect of being in a support group,” says Ranjani, adding that one comes across many other parents who face challenges that are so similar yet distinctly unique.

“Through these interactions, we draw strength from the community,” adds Ranjani.

Vimal Balachander, an active member of the parent support group SCAN (Special Child Assistance Network), which has over 3000 members on its Facebook page, points out that everybody is feeling emotionally vulnerable due to the pandemic, but the activities and live calls, made possible by support groups enable them to brave through the challenging times.

“We don’t do everything ourselves, by encouraging others it becomes a mood booster,” says Vimal.

Vimal explains how a monthly conversation series started by a parent, Suja Shyamsundar, is helping members cope with the situation.

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She adds that the responsibilities of keeping the series going are shared, with some offering tech support, and others preparing posters and circulating them among groups. There are other activities like quizzes and antakshari organised by other members.

Vimal cites the example of how parents of special children have benefited from Delhi-based Shalu Sharma.

“During the lockdown, Shalu Sharma engaged many special children with easy-to-do activities,” she says.

A common question

One question that most support groups has been trying to answer now: ‘How to enable the child and the caregiver to keep up the motivation level during these challenging times?’

Ranjani points out that without a support system at home, continually monitoring children can be tiresome. VOICE has been receiving many requests from parents looking for volunteers who can come home and keep the child engaged.

There are groups that see how best children can be engaged online.

Since the lockdown began, Mala Chinnappa, who conducts ‘A Brush With Art (ABWA)’ along with Jyotsna Srinivasan and Priya Badri at Cholamandal Artists Village, has moved the programme online.

Mala with a participant of ‘A Brush With Art’ organised at Cholamandal Artists Village. Photo: Special Arrangement

Mala with a participant of ‘A Brush With Art’ organised at Cholamandal Artists Village. Photo: Special Arrangement  

“We kept the format the same: one-on-one class, 40 minutes and very gentle guidance, and were surprised to find our children work independently and were joyfully engaged. The moms gently assisting without getting in the way of the free exploration was another beautiful development. The art of stepping back, letting go is difficult to practise, the moms are definitely getting there,” says Mala, a resident of ECR.

Mala and Chinnappa, who run aSPECIALworld, a forum for children with special needs that they started in 2015, feels sustaining online interactions is less challenging now than that they were before the pandemic.

“Previously, there was the difficulty of sending the child to school; and the challenge of getting the child to take up any online activity that is offered. Now, the parent and the child have more time at their disposal, and there is also the greater choice in terms of finding the activities that best suit the child. It is like a fog has lifted off from them,” says Mala, an advertisement professional and the mother of a special child.

The challenges

Keeping an online support group active takes some doing.

Mala underlines the work that goes on silently behind the scenes to keep the support group running.

“My husband Chinna moderates the Facebook group. On an average, we get 15 posts every day, which he clears before posting. We focus considerably on checking the facts and claims in a post. During the lockdown, we have been ruthless in hacking down posts that may start with good intention, but their suggestions may not be scientifically proven. Sometimes, we even have a discussion with the practitioners before promoting their content,” says Mala.

The Facebook group has been growing. Says Mala, “As you get larger, your visibility increases, and along with it, the level of responsibility and accountability.”

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Printable version | Jan 17, 2021 4:00:40 AM |

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