Rishabh’s (name changed) parents have been glad of the progress their child has made over the years. A child on the autism spectrum, Rishabh had developed a calm and composed nature, happy to sit in classes, meet his teachers and friends at school; thanks to the back-to-back therapies and continuous interventional sessions his parents had ensured to follow up. But a week ago, Rishabh’s mother came home from office to find her son bleeding after he removed a bulb from the holder and crushed it while his dad was taking a nap. The parents were shocked by the unusual behaviour displayed by Rishabh who seemed very upset and couldn’t be pacified for some time.
Home-bound for four months now, the children with special needs and their parents are facing huge stress and behavioural changes. While the education system for the rest of the children in the state has been restored through online classes, doors remain shut for those who fall under the inclusive education system. Last month, Chief Minister Pinarayi Vijayan had launched ‘White Board’, a project in association with Samagra Shiksha, Kerala, where online classes would be offered for children who are visually, aurally and mentally challenged and those with learning disabilities, autism or cerebral palsy. The programme, aimed at reaching out to those children with special needs who are unable to follow regular classes under the ‘First Bell’ scheme, is, however, not serving the purpose as it lacks the required homogeneity and excludes visually-impaired kids.
“Rishabh’s is not the only case. We have been receiving complaints from several parents who are worried about the problematic behaviour their wards display. Aggression, self-talk and stimming are on the rise among these children who have lost their routine and missed their training and therapy all these days. The parents too are worried about deterioration of their children's milestones achieved over several years, contributing to their immense stress,” says Indu Suresh, Ernakulam district secretary of Parivar, an organisation of parents of special children.
Special online classes
Amid these concerns, many special schools are attempting to train the students by connecting to the parents through phone calls and real-time interactions, offering them training tips to follow and checking on the progress of the kids. Using apps and videos, the professional trainers direct the parents to follow the instructions and try to continue therapies and activities to improve social, occupational and physical functioning.
Kochi-based Seena Ashok is delighted that her 15-year-old son is enjoying the classes offered by his school run by Adarsh Charitable Trust. “The teachers communicate to parents in a WhatsApp group where the concepts to be trained, assignments and schedule are shared. During weekly hour-long live classes, study materials are shared and the work for the week is assigned. There are two individual speech therapy sessions and one individual occupational therapy session apart from dance and music classes, which are group sessions. The school also provided a counselling session for parents to beat the stress. Any staff would be ready to assist any time in case of apprehension or confusion,” says Seena, who takes her son for a walk or up and down the stairs to keep him physically active as advised by the teachers.
Not so special for many
Interestingly, these classes are not everyone’s cup of tea. It’s ironical that many of the children, who are advised to keep off gadgets and screens, are told to depend on those for training them online. Suchitra Narayan, a special educator who supervises special teachers at a private school in Kalady in providing online classes, says that priority is for activity-based programmes than regular academics. “The focus is on grooming independent living skills and positive behaviour. These are not daily activities; we do it only once or twice a week for groups of five or six kids, who are given assignments. The parents give feedback by posting photos or videos of the kids’ activities.”
“Though it’s a commendable act on the part of these schools, most of the online classes would benefit only children with mild or moderate disability, those with mild Downs’ syndrome and those who can undergo vocational training. What about hyperactive kids, those who can’t concentrate or have no eye contact? Getting them to sit itself is a near-to-impossible task. How to make them look at tiny gadgets and spot an image of an apple or an orange? Home programmes can help in sustaining the skills they have developed to some extent, and oral, sensory and physiotherapies could help sensory tactile stimulation. Even then, the mood swings, ostracism from peers, behavioural issues and the stress they undergo indoors can’t be ignored,” says Indu, whose eight-year-old son on autism spectrum finds it difficult to cope with the online classes or group sessions offered by his school.
Not inclusive yet
Some online classes are very unscientific and add to the woes of parents and kids. Seema Lal, a psychologist and special educator, recalls a class where a teacher who appeared on screen was mindlessly reading out from a book on theories of art works. “It is ridiculous when a child who holds a brush, paint and paper waits for the teacher to instruct and paint and he suddenly explains complicated theories. At a time when online education itself is new, trying that on children with special needs who themselves lack a proper individualised programme can go terribly horrible,” says Seema, who is a co-founder of ‘Together We Can’, an advocacy group of parents and professionals working for children with special needs.
“Not only does the online programme fail to cater to children with attention deficit hyperactive disorder, visual or hearing impairment, but it has only visual and auditory concepts which can’t be grasped by those who require sensory stimulation and those who have communication difficulties. Accessibility for everyone needs to be ensured in education and rehabilitation. Online education is a double-edged sword but is a platform with great potential if used properly,” she adds.
Skill-based learning, not academics
Deepthi Mathews, advisory board member of Autism Club, an NGO run by parents of children on autism spectrum, is having a tough time making her 15-year-old son attend the online classes. “He can’t sit for even 10 minutes. Parents are entrusted with the task of weekly assignments, video lessons and therapy sessions which add to the stress as a child who has difficulty in comprehending and responding accordingly can’t show the desired results. We don’t need academic progress; we want only skill-based activities that help our kids be independent. As part of the Autism Club, we have started online activities called 4Cs (Cooking, craft, communication and computer). The classes and modules are prepared by the volunteer parents who share activities to develop speech, fine motor skills, interest in art, music or cooking. While it keeps at least some of the children engaged, it helps release the pent-up energy and frustration too,” she says.
What matters is the kids’ exposure to the world outside the walls of the home. Suchitra says, “Even while staying at home, they can be taken for a walk, let play with soil, attempt gardening, cooking, make shapes out of dough, etc. There’s no better school than home if the guidance is proper. Or else, they show signs of irritability or aggression. My heart goes to the children shut indoors cut off from the rest of the world. Already, their world is very small; denying even that to them is very sad.”
Structured, individualised programme needed
Seema Lal, however, sees the situation as an eye-opener for authorities. “For long, we have been pointing out that our education system for children with special needs is flawed. When each child requires individualised programmes to boost their strength and skill with the complete involvement of the child and the family, our system so far has been providing group sessions or closed-door sessions for kids, keeping parents at bay. Education is complete only when it includes parent training and empowerment. Therapies are not as complicated as many parents think. Parents are heavily dependent on therapy professionals thinking that what they do behind closed doors is some ‘enigma’. Now that myth is busted.” Only a few days ago had Kerala made it mandatory for therapy centres to include parents in sessions, ending the three-year-long legal battle of Together We Can seeking registration and guidelines for therapy centres.
That’s a long way to, but there are yet a few unexplored areas and unattended kids left behind. Indu says, “Parivar has close to 1,000 members in Ernakulam district alone. Most of them have not received any call or inquiry from Asha workers or anganwadi workers regarding the welfare of their children. The children who are otherwise supported by BUDS Schools run by panchayat bodies and Kudumbashree Mission are left out with no training. Even the proposed White Board is still claimed to be under processing. We know the gravity of the situation. As our children are prone to infection and many of them have low immunity, special schools would be the last to start functioning once the COVID crisis passes. But till then, can the plight of these children be ignored?”
