Wednesday, June 3, 2020
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Children with special needs play at a school for autism in Yemen. Photo by Dana Smillie World Bank

Lockdown is causing frequent meltdowns even as parents and counsellors try to fill the gaps

Nisha (13)* enjoyed the routine and activities at her school. Every morning, her father, who drives an auto rickshaw, would drop her at the special education school.

But now he leaves without her. She screams, hits and even bites others to vent out her anxiety and frustration. “I watch helplessly as she cries for hours every morning. We requested the school to have a class at least once a week but they refused,” says her mother Ishara, hoping for things to ease down.

Staying cooped up indoors with a very uncertain future hasn't been easy on anyone, but it has been especially difficult on children with mental health issues.

The scenario for special children from poorer households is worse as they stay in slums and high density localities which have a heavy load of Covid-19 cases and are under the strictest movement restrictions. 

India stepped into the first phase of lockdown due to Covid-19 pandemic on March 25, 2020. The country has gone through phases of restrictions with the latest easing of norms effective from June 1, except in containment zones with high case load.

Schools are still out of bounds and state governments and local administrations are restricting movements based on local scenarios. Many recreational activities are off limits.

Autistic children face a lot of distress due to sudden change in routines. Abrupt closure of schools, playgrounds and other recreational outlets is resulting in more frequent meltdowns

Living in a Shrinking World

Children on autism spectrum face a lot of distress due to sudden change in routines. Abrupt closure of schools, playgrounds and other recreational outlets is resulting in more frequent meltdowns.

“Children unable to go outdoors have a lot of pent up energy which leads to aggression. Their schedules have been altered and they are also unable to visit the intervention centres.,” said Dr Pavana Rao, a clinical psychologist based in Bengaluru. “It is a tough situation for both the child and the caregiver.”

Ishan (6) has mild autism. He does not like social interaction and is comfortable confined to home, indulging in self play. His mother, however, is stressed because the child is losing the communication skills gained through two years of speech therapy. “Ishan needs stimulus and consistency to be able to sustain interest in social interaction. Otherwise he lapses into his own world of imaginary play,” his mother, Swati says. “We hope the learning centre where he was going for speech and occupational therapy starts functioning soon with safety measures in place.”

CC Image from FlickrA few countries have relaxed norms for those living with mental health issues. In United Kingdom, lawyers challenged the 'discriminatory' restrictions on physical movement for people with learning disabilities or autism.

The petition led to the government allowing such individuals to leave the house for exercise more than once a day, travel outside their local area in company of their carers, who may not reside with them.

WHO has also stressed on importance of uninterrupted in-person care for severe mental health conditions. This can be done by formally defining such care as “essential services” throughout the pandemic.

“Certain relaxations need to be made by the government to accommodate such children in India. They can be allowed to play under adult supervision while following the norms of physical distancing,” says Kunti Suryawanshi, a clinical psychologist from Mumbai. “A recommendation from medical practitioner can come in handy in such a scenario.”

But for this to succeed the law enforcers also need to be sensitised to special needs of those with learning disabilities. A youth with Asperger’s Syndrome, for instance, was roughed up by the police personnel in Chandigarh on April 26 while taking a walk. The incident led to a prolonged meltdown and trauma for the boy at the police station.

Children from poorer families are the most affected by closing in of the space. Poorest 20% of the country have access to per capita living space of just around 7 sq metres

Most of the slums and high density localities have high load of Covid 19 cases which means they are under strictest movement restrictions in India 

Poor are most likely to be affected by closing-in of the space. Chitra stays in a one room kitchen house with her family in a slum in Chennai. The area is a containment zone but her two sons are hyperactive. “They want to run about and it’s a struggle to keep them indoors,” she says. 

The poorest 20 percent of the country have access to per person living space of just around 7 sq metres. A jail cell requires a ground area of 8.9 sq metres. Pandemics and emergency situations pose unique challenges to providing them proper health care.

Online and Home Therapy

Several psychologists have started taking online sessions, offering simple activities to be done at home through videos carefully curated for each child's needs.

These are still, however, a poor substitute to personal therapy, especially because most of the special children have attention deficit and can’t sit at one place for a long time. “It is important to not pressurise the child but slowly work into building their sitting tolerance,” says Suryawanshi. Unlike conventional schools where a single Zoom call can address all the children in a class, special schools have to create specific plans for each child.

Psychologists are also trying to overcome the barrier of medium. “We have reinvented our working style to deal with lack of attention. For instance, we broke down reading sessions to include origami activities to engage the child,” says Sima Bhushan, the founder of Learning Arc, a centre for children with learning disabilities in Bengaluru.  

Video sessions are a poor substitute to personal therapy, especially because most of the special children have attention deficit and can’t sit at one place for a long time.

Poor families lose out in access to such services

Parents or caregivers can also be trained online who can then work with the children at their own pace. "We started training parents two months back. Many of them have reported remarkable independence from the child without much intervention,” says Dr Kannika, an art therapist who works with special children. “We encourage parents to continue such work while the therapists monitor and give feedback as necessary. It’s wonderful to see that minimal guidance is required from the professionals. I hope this lockdown learning helps parents play greater role in therapy."

The grind, however, is daunting. Before the lockdown, a typical day for a parent used to be compartmentalised into work and home, with separate time and space. Now the stress of managing the household work without maids, meeting office deadlines while pitching in as in-situ therapists for the child can be overwhelming. The psychologists suggest that the parents initially try just 30 minutes to one hour therapy and not get worked up over completing the tasks. 

The New Normal

Over time, some parents have succeeded in creating a new routine with help of devices and altered living spaces to accommodate needs of their children. “We try to bring structure through lots of visual schedules and also working hard to minimise power struggles,” says Pavithra Raman, mother to a nine-year-old autistic child. “We are sharing control where possible, to keep things easy and predictable for him. Screen time with educational mobile apps and calming music also makes his day go smoother.”

Parents or caregivers need to be trained on how to work with children in such emergency situations. They can play a far greater role in therapy

Though there is increased focus on digital mental health services and parenting programmes, under privileged, unlettered and older caregivers may have no access to these tools. “The poor are challenged on many fronts”, explains Dr. Kannika. “Without access to smartphones or laptops, they use normal phone calls to reach out to therapists. It's very difficult to explain activities to the parent without visual aids. Often the mother doesn't have access to a phone and is at the mercy of other family members to make these calls. The cost of the calls, under already strained finances, leads often to stress and verbal abuse. ”

“Therapists try their best to give 30-45 minutes sessions on the phone. But children who have been working with therapists often refuse to listen to parents,” says Poonam Natarajan, the founder of Vidya Sagar, a special education centre in Chennai.

Offline trainings for parents or caregivers of children from poorer families could have helped them cope with this emergency situation as well. Emergencies like the current pandemic, while devastating, can provide opportunities to strengthen the systems, including legal reforms, policies, and capacity building.  It has underscored the need for increased investment of money and effort in better mental health care system. 

*Names of parents and children have been changed to protect identities

A chemical engineer by qualification, Puja Uchil has also completed her Fellowship in Holistic education at Bhoomi College.  After acquiring over a decade of corporate experience at Larsen & Toubro, she followed her passion for education by helping run a non profit school in Sikkim. You can contact her at puja.uchil@gmail.com

Here are a few helpline numbers for mental health counselling

NIMHANS: 08046110007

Mumbai-based mental health organisation mPower and the government of Maharasthra and BMC: 1800-120-820050

Poddar Foundation and Rotary Club of Bombay: 1800-121-0980

Assam Police and the Department of Psychiatry, GMCH and Clinical Psychologists/psychiatric Social Workers: 6026901053/54/55 or 6026901056/57/58.

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