Covid-19: Special children face a challenged world

Seven-year-old Angeleen Kaur has cerebral palsy with cortical vision impairment. Triggered by a suspected hypoglycemic seizure that caused brain damage in the first few days of her birth, Angeleen’s condition has rendered her immobile. Since 2016, she has been undergoing extensive therapy at Tamana, a not-for-profit organisation in Delhi that works with children with disabilities. Every morning at 9, her father, Gurjinder Singh, a government employee, would drop her at the institution where, in sessions of 20 to 30 minutes each, Angeleen would go through speech and occupational therapies, and physiotherapy.

In mid-March, when Covid-19 had started spreading in India, and the national lockdown was announced, Tamana shut its brick-and-mortar centres and moved their sessions online. While that has enabled the family to continue some of Angeleen’s tactile exercises through instructional videos received on WhatsApp and Zoom—like sorting different types of lentils in a bowl—her physiotherapy and occupational therapy have come to a complete stop. “Neither my wife Reetu Kamboz, who looks after her all day, nor me are as well-versed with a child’s anatomy as a professional therapist. For example, my daughter’s ankles are straight. An occupational therapist knows exactly how to massage them the right way without injuring her. I can’t do that well enough,” says Singh.

Like for Angeleen, learning and therapy-based development for a number of special children have gone off the rails thanks to Covid-19. Even under the best of circumstances, there isn’t a one-size-fits-all solution for kids with special learning needs—ranging from those with physical to intellectual and mental challenges. Through individualised plans, an educator formulates strategies based on a child’s level of functioning. By making learning remote, the Covid-19-induced shutdown has imposed a number of roadblocks on the implementation of the strategies.

The pandemic is exacting a higher toll on special children by throwing them off their routine, which helps them learn and respond to situations through a predictable structure. Tanvi Khanna (name changed), 25, an Ahmedabad resident who has high-functioning autism, loves to go for a spin in her father’s car every afternoon, visiting malls and window-shopping. Ever since the lockdown was announced, her level of anxiety has shot up, triggering violent fits. “Initially it was frequent... now after repeated explanations, it has gone down. But every two or three days, she will have a flare-up—from the morning she will snap at noise, shut her ears, make me repeat things and then have an outburst,” says her mother. 

Dipti Gandhi, a low-vision consultant and founder of Muskan Foundation, which offers education and therapy programmes to children with multiple disabilities, says, “It’s difficult for our children to understand why they can’t come to school or even step out. Besides, they have sensory issues—kids with low vision don’t even want to wear spectacles, forget masks. Kids with autism follow the expressions of people around them; if everyone wears masks, the children can’t process emotions. Hearing-challenged kids understand people by reading lips, which can’t be done through face covers. Because of all these, the current world seems far less intelligible for special kids than for regular ones.”

According to the 2011 census, there were 7,864,636 children with disabilities in India (in the 0-19 group), making up for 1.7 percent of the total child population. Of them, about 1 percent (numbering 1,291,637) was aged between 0 and 4, about 1.5 percent between 5 and 9 (numbering 1,418,969) and over 2 percent between 10 and 19 (numbering 4,617,073). With such minuscule proportions, children with disabilities are hardly a part of mainstream conversations or policies. Questions sent by Forbes India to the Union Ministry of Human Resources and Development on a specific roadmap for special education in the post-Covid-19 world went unanswered.

For most educators, bridging the gap for special kids begins with restoring a routine, or a semblance of it, that helps them break through the chaos. The weekend after school shut on March 13, The Gateway School of Mumbai, established in 2012 for children with learning disabilities, returned with online classes and even instructions to attend them in uniform, as they would do in school; Muskan Foundation and Tamana came back within a week. And Mumbai-based Ummeed Child Development Center started to create programmes virtually that would mirror physical classrooms or spaces where they could meet friends or therapists. Like the Fun Club—a leisure activity where kids would just hang out. “We moved this on Zoom every Wednesday and Saturday for an hour at a designated time,” says Raviraj Shetty, an occupational therapist and training lead at Ummeed. 

Such structures helped students like Yuvraj, the elder son of Indira Bodani, the founder of Gateway, to step back into his comfort zone that had gone for a toss in the aftermath of the lockdown. “At school, he was always the first kid to reach. At home too, he is ready in his trackpants for his physical education classes in the morning,” says Indira of the 21-year-old, who has a learning disability.  

Once a pattern was established, the question that educators dabbled with is how much can they stretch the kids? “At Gateway, we said we will only do maintenance—repeat the topics that we already know. There’s no way that new learning can happen this way, we thought,” says Radhika Misquitta, co-principal.

Soamya Srivastava, a 19-year-old student at Delhi’s Tamana, who has moderate to mild mental retardation, is halfway through her class 10 NIOS (The National Institute of Open Schooling)exams with two papers—English and mass communications—pending. But her classes currently focus on functional maths, and English and Hindi comprehension. “From what I understand, these subjects allow more children, who join on Zoom, to connect with them,” says her mother Sangeeta.

Of course, educators innovatively substitute classroom props like clay moulds and flash cards with household items: Onions and potatoes for sorting, or sifting sand from pasta, sharpening balance for a hyperactive child by standing on a chair and jumping, or flour doughs for sensory experiences. Or, for academic concepts like floating and sinking, dunking a pencil in a glass of water, and making presentations through screen-sharing. The idea is to break down tasks into piece meals that would be easy for educators to teach and students to absorb.

Tamana started its classes with the educable group of children—those that could handle functional academics—as five educators worked with students preparing for class 10 NIOS examinations. “This was a group with mild challenges, so it was relatively easy because all we needed to do was give them worksheets. In the next phase, we started with the moderate group and then the activities got a little complicated. We made short videos by therapists that could be done with the help of their parents,” says Blessin Varkey, director, innovation and research, and head of the technology programme at Tamana. Like, an occupational therapist worked on Angeleen’s tongue muscles by smearing a drop of honey on various parts of her lip and asking her to lick it up.

But looping in parents to watch over kids and sort out issues ranging from productivity to connectivity can be a double-edged sword. Particularly working parents with chores to complete at home. As their work expands to shouldering the responsibility of educators as well, are they equipped with the expertise or the time? Angeleen’s father Singh admits that with all five members of his family, including his older son and brother-in-law, at home now, his wife is struggling to keep up with shadowing their daughter like before.

Add to that the financial worries that dogged a number of lower- and lower-middle class families, and mental health started to balloon as a crisis as much as their learning. To help families tide over the crisis, a number of institutions threw open helplines and counselling sessions. At Muskan, where many of its 116 students came from poor families with at least one or both parents losing jobs during the lockdown, counsellors hosted group sessions that helped them bond over shared problems. It also organised games, cooking sessions, fashion shows for students along with their parents to help them let their hair down. One of the lockdown highlights for Aarti Govalkar (who lives in a shanty in Mumbai’s Bandra neighbourhood with her husband, two kids, mother- and brother-in-law) has been the first prize that her daughter Kshitija, a visually impaired seven-year-old, won in a cooking competition with her version of ragda and sherbat.

Ummeed celebrated June as the month for the mental health of caregivers, by conducting workshops with parents, where they cooked, played antakshari, “or even just cried”. “At the end of one workshop, a mother said it feels so good to not talk about Covid-19 or our children for a while. The mental health of children as well as caregivers are inter-linked and you cannot address one without addressing the other,” says Shetty.

Supporting the community and its various stakeholders—be it educators, parents, and even students—has been a recurrent theme in the landscape of special education. At Gateway, psychologist and co-principal Varsha Makhija counselled parents as well as about seven to eight students through May, especially some older ones who were concerned about what the loss of a prolonged academic period would mean for their future. “One asked me, ‘If the world is ending, why should I even continue to study?’ We see them as kids, but these are young adults. They need a lot of reassurance, and sometimes you just need to help them go through it. A lot of our kids go into a loop, and we must help them break the loop,” says Makhija.
 
It hasn’t been easy for educators either, especially bringing about a behavioural change towards technology, and breaking downs its functions to ensure the optimum use of tools. As Varkey of Tamana started with a set of instructions from scratch: Zoom to be used for talking to staff members or more than two students at the same time, while WhatsApp for working one-on-one. “Digital incorporation isn’t easy. That our educators and therapists managed to do it is one beautiful outcome of the crisis,” says Varkey.

For Misquitta of Gateway, one of the key takeaways from the experience is how not to blindly transpose the physical classroom experience into virtual, despite the school relying heavily on technology right from the beginning. The learning came once they broke for vacations earlier than scheduled, in April—“it was exhausting, we were fried”. Once classes resumed in early May, the teachers came back with a new game plan and innovative means to break away from the cookie-cutter approach. For instance, instead of the homerooms in schools where kids were set up for the day, Gateway began doing individual check-ins with students asking them if they had everything to start. “We realised the idea of the homeroom was to orient children and connect with them, so personal phone calls would do. We moved out of what school is to what the purpose of school is,” says Misquitta.

Agreed, engagements on digital platforms don’t match up to face-to-face interactions. But the choice here has been between doing nothing and figuring a way out. And the figuring out has been better than the educators expected. “If the pandemic had happened 10 years ago, we wouldn’t have been able to do any of this,” she adds. “The fact that Zoom is around helps us to use Breakout Rooms and allows us to use the feature to individualise. For example, to use it for paired work.”

That many parents of special kids are turning to technology is evident from the 11,000 page-visits that School WiFi, a repository of 4,500 educational videos built by Zaya Learning Labs, an education consultancy and software development firm, has seen in 40 days. “We used to sell that content for a one-time cost. When this crisis broke out, we took a call to put that out for free,” says Harmik Wilkho, COO, Zaya. Prior to that, Zaya invested time helping its partner schools transition from an offline to an online model, almost overnight. “It was challenging, but the teachers were more receptive than ever.”

Yet, education for special kids remains constrained by limited conversation and advancements, even on the technology front. What most technological tools have managed to achieve till now is to be merely assistive for the students, where a guardian has to take up technology as a support system because children with disabilities need an element of human touch. “Rather than trying to solve the more complicated problems, assistive technology solves the easier one,” says Wilkho.

Does that mean we go back to square one?

Will the lack of a face-to-face interaction with educators and therapists substantially set back the learning curve for children with special needs? “It’s too early to say,” says Preeti Verma, former head, department of special education and associate dean, interdisciplinary studies, SNDT Women’s University, Mumbai. “Usually, the new session starts in May, when online classes started this time. We’ll get to know the quantum of setback only once re-assessment is done. Forgetting takes place really quickly with children with special learning needs. With continuous online classes, we don’t expect a major dip in their performance, but the long-term impact of the lockdown will only be known after a while.”