For Jayashree, whose son Anirudh has cerebral palsy and lymphangioma, the first few days of the lockdown in March were difficult. Her son had begun to experience bleeding in the eye and, with restrictions on movement in force, she couldn’t visit her doctor.
“It was a stressful time for me. With proper stimulation, we could control the bleeding in Anirudh’s eye. However, I was unable to meet a doctor in person. We later managed to find a doctor who agreed to visit us and check his eye,” Jayashree said.
Days later, in April, Anirudh’s haemoglobin levels dropped alarmingly. “We needed to take him to a hospital for treatment. My son has tactile dysfunction so we cannot make him wear a mask. And going to the hospital without wearing a mask was fraught with danger. But we risked it as he had to take his injections. We managed to bring his haemoglobin levels to normal,” she said.
Jayashree and Anirudh represent just one of many such families who have had their world turned upside down by the pandemic and the subsequent lockdowns. Even as restrictions have eased, centres that provide therapy and vocational training to children with disabilities in Chennai, continue to remain closed as the Tamil Nadu government is yet to give its nod to reopening educational institutions in the state.
Vidyasagar (formerly Spastics Society of India) in Kotturpuram offers training to children and their primary caregivers (parent(s) and family) during the course of therapy. When the lockdown was announced in March, teachers at the centre shot videos and shared them with parents, via YouTube, to help them with therapy. Caregivers have been using these videos to enable therapy at home, even as teachers conduct a few online sessions for their students.
Speaking to Indianexpress.com, Radha Ramesh, director, Vidyasagar said the lockdown proved to be a challenge for primary caregivers as they juggled work from home and caring for their children in the beginning of the lockdown in March. “We asked parents to weave their child’s routine into theirs, instead of creating a separate routine altogether. We managed to pull together for the past few months through remote teaching,” she said.
While online therapy is not as effective as the in-person one, Radha said the bond between the teachers and their students, as well as caregivers who stepped up in these challenging times, have made the transition easier.
Indira Ravi, director, Vatsalyam Centre for Autism at Adambakkam, said the centre has been closed for therapy since March. As it is impossible to provide therapy for children with disabilities while adhering to social distancing norms, the centre had to bring therapy sessions to a halt. “We tried online therapy and yoga sessions at the beginning but faced a lot of issues since the children did not want to remain in one place and learn. We feel bad about our decision but therapy will stay suspended for now,” Indira said.
The director added that the centre will reopen only when they get the go-ahead from the state government. “At present, a few caregivers visit the centre from time to time to consult with the faculty and get pointers on providing therapy for their children at home,” she added.
Since May, Jayashree has been taking her son to therapy four times a week. “It is a gamble but he needs therapy. Since he cannot wear a mask, I make sure that the parking lot is empty before taking Anirudh outside,” she said.
Despite hiccups, children have been accommodative, say parents
Socialising is one of the key elements of therapy for children with disabilities. However, with COVID-19 keeping everyone indoors, lack of social interaction has left a void in the lives of most children who look forward to these interactions.
“Restricting social interaction was a huge challenge. Earlier, we used to tell parents to socialise their children and now, we are curtailing it. That is confusing for the children. Some of the children have thrown tantrums since they were not allowed to go out. With constant reiteration, the children have learned to adapt,” Radha said.
Recounting an incident during the lockdown, Gopinath Ramakrishnan, co-founder, Special Child Assistance Network (SCAN), said that a child rode his bicycle across Chennai, from morning to evening one day, visiting his father’s office, his training institute and a park that he frequented, among other places, before he was rescued by the police. While the child was unhurt owing to fewer traffic on major roads, Gopinath cautioned caregivers to be wary amid the unlock in the city.
“Most of the children have been very adaptive to life in lockdown. However, with the unlock in progress, the children are getting restless. We have warned parents to be careful as once the noise of traffic gets louder, children would want to go out more and it would be difficult to manage them,” he said.
Jayashree said that her son Anirudh has been very supportive during the pandemic. “Anirudh has been very understanding. The lockdown is very difficult for him since he loves going out. But he understood the situation well even when he was sick and cooperated when I took him to the doctor. He has managed really well so far. He listens to music all day,” she said.
Deepa Vijay, whose son Pranav has cerebral palsy, said he adjusted to quarantine very well after the situation was explained to him. “Pranav is content at home. He is happy wherever he is and wherever I am. He does not insist on going out,” she said. They have been reading together every day to beat lockdown boredom. “We have been reading Indian authors. We read the Ramayana every day, complete with music and drama,” she said.
Tackling hospitalisation amid the pandemic
Hygiene is the most important factor for children amid the pandemic as the primary concern for caregivers is to avoid contracting the virus and boost the immunity of the child. “Since most of them require constant support for their daily activities, social distancing is not possible for the children and their parents. They need to follow proper hygiene consciously”, Radha said.
“Safety for children with disabilities is important, and especially so during the pandemic. It is essential that the hospital staff is on-board to help you take care of your child,” said Deepa, who had to take her son to a hospital thrice amid the pandemic.
“The immunity of our children is compromised if social distancing norms and proper hygiene aren’t followed. It’s important not to let strangers into our homes as we don’t want to become virus carriers,” Deepa said.
She said since her son’s surgeries, she has had an excellent support system at home to help her take care of Pranav. Amid the lockdown, one of Pranav’s nurses and a relative have been staying with the family to care for him, with Deepa filling in as the second nurse at night. “My husband also pitches in whenever he is free,” she said.
Vocational training has taken back seat
Besides therapy, Vidyasagar provides vocational training in five economically viable activities for adults at the institute. Children are taught weaving, lead cup making, carpentry, thread painting and arts and craft, with the machines modified to suit their needs.
The institute has now suspended vocational training. “A few students are able to do thread painting at home and they are pursuing it as a hobby. We might introduce it as a project from January,” Radha said.
Anirudh had been learning to paint at Vidyasagar, with the 22-year-old also being provided with a stipend for his work since last year. With his painting sessions suspended for now, Jayashree said her son now attends yoga classes once a week.
Webinars for caregivers and inclusive living
To help caregivers take care of their wards amid the lockdown, Vidyasagar has been organising monthly webinars for parents and children, addressing topics ranging from immunity and difficulties faced by the children to mental health of parents and government schemes.
“During normal times, parents have time for themselves when their children go to school and therapy. With lockdown keeping everyone at home, this can be a stressful time. Vidyasagar had organised a webinar on mental health of the parents during the lockdown which was helpful,” said Deepa.
Founded in 2015, Special Child Assistance Network (SCAN) is a social network group for parents of children with disabilities. SCAN organises social events for parents and children, including games and cultural events, every Sunday evening, apart from workshops on behaviour, financial planning, etc and non-traditional therapy sessions such as yoga, clay modelling, art therapy and dance, among others. The group also provides advocacy and became a trust in 2017.
Gopinath Ramakrishnan, co-founder of SCAN, said the group has not been conducting any events since the outbreak of COVID-19. “We were not keen on conducting events online since the children are already attending therapy, classes and webinars online. Only yoga classes are being conducted online for now.”
Gopinath has been working on inclusive living since March. “Inclusive living looks at having homes in big apartments that have facilities for children with disabilities and their families to live in. This living set-up will enable families to have a large support system in place, along with the provision to have therapy and vocational training at one place instead of shuttling between centres,” he said.
The SCAN co-founder, who has organised webinars on the project, said he has been speaking to builders in Chennai. “We are in the process of identifying the right partner.”
Inclusive living aims at helping children with disabilities to live on their own, without the support of caregivers or parents, through small group homes. In these homes, two to three children share a flat, with or without a caregiver, where they can cook their own food and manage their daily activities. “Children can avail this small group home facility even when their parents are living within the complex. The idea is to make the child independent and able to care for themselves once their primary caregiver passes on,” said Gopinath.
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