The Covid-19 pandemic has come upon as a huge shattering cloud over the entire world. It has shaken the earth under every common man’s feet. People with disability face innumerable challenges in a normal day’s life. The Covid-19 pandemic lockdown has only made it worse, while the therapy centers, special schools and hospitals being indefinitely closed. The daily therapies, their routines, interaction with the peer, teacher, everything coming to a standstill. How are the children with disability and their parents coping with this unprecedented crisis?
Adesh Pattrick, a 11-year-old child with Autism, attends a special school in Coimbatore, Tamil Nadu. Mrs. Kalpana Rajesh, Adesh Pattrick’s mother pours out, “In the beginning of the lockdown, Adesh displayed a lot of mood swings because he missed his daily routine. He would often throw tantrums at home. It was difficult for me to keep him occupied through the day. He thoroughly enjoyed going to school, meeting his friends and teachers.”
She also adds, “Initially, I was worried about his therapies being missed. Thanks to technology and the initiative of our school, we are now, attending online sessions of therapies. My son is happy to be meeting his teachers on a regular basis, though he’s sad about staying at home. I am happy that his therapies are in progress.”
Every crisis brings the worst and the best out of humans. When asked, what the covid-19 lockdown had taught her, Kalpana reflects, “One thing I have learnt during the lockdown is that ‘Money has no value’. Or rather, the pride that we human beings have that money can buy anything, does not really work. There were times, when we had the money, but several essentials were unavailable at the nearby stores. On the other hand, we also had the fear of the spread of the virus through these goods.” She adds, making a remarkable disclosure, “While there was unavailability of the essential vegetables, I realized the importance of having a kitchen garden and organic farming for self-sustenance.”
Mrs. Anandhi Balaji, mother of Manasa, a 9-year-old child, with mental retardation, addressed a few questions about her experiences of the lockdown. Anandhi said, peering at the positive side of the lockdown, “Initially, lockdown was like a holiday. Prior to lockdown, my husband spent most of the time at work, leaving me take the entire responsibility of Manasa and the household chores. The lockdown, however, gave us a lot of family time. We share the household chores and the responsibilities. Manasa also lent a helping hand in the chores of the house. She has learnt to do the laundry, sorting the dishes, etc.”
She also added, “Manasa was disturbed and had mood swings, in the initial days of the lockdown. She enjoyed the ride to school and the activities. But as days went by, she got used to her new routine. Now, she even enjoys wearing the mask”.
The lockdown has brought additional responsibilities on mothers. For a mother with a child with special needs, the challenges would be greater. When asked, if her experience of the lockdown was any different as a mother of a special child, Anandhi says, “My experience of the lockdown is quite challenging because, my child is dependent on me for every basic need. I must give her constant guidance and support. It is not like I will play a favorite cartoon or give her a colouring task to keep her occupied. Manasa would need my support for every personal task of hers. And I need to keep a watch over her 24/7.”
Mrs. Meera Selvarathnam, mother of Bharath, a 26-year-old with severe Autism, shares her thoughts about the lockdown. “The lockdown has given our family ample time to bond with each other. I have never spent enough time with my busy daughter and Bharath together. This was the best family time for us. I could see the emotional bonding between the siblings. I have also been trying out new recipes during this time, as my children are here to relish them” responds Meera, with an optimistic outlook on the pandemic lockdown.
On asking how Bharath was coping with the indefinite lockdown and its constant extensions, Meera says, “We can vent out our stress by talking to others. We are easily adaptable to new situations. But, for Bharath, staying at home, missing the routine must have been stressful. It takes a lot of time for him to adapt to a new routine. Distracting him from his mood swings has been a challenge for us.” Managing stress and mood swings of others can be a traumatic experience.
I wanted to know if there was any expectation from the Government to help the persons with disability to cope with the blues of lockdown. Meera says, “Persons with disability are the most overlooked people in this country. Even during the normal days, there are many facilities that are not given. There are several measures taken by the govt for the welfare of the disabled, but by the time we are aware of those measures and claim them, the rules would have changed, and the procedures would be unachievable. In a situation of crisis as this, what can I expect from our Government. There are much graver aspects for the government to look at during a crisis.” It was disheartening to know that Meera and many others feel that the disability sector and the people with disability are the forgotten ones, in our society.
Mrs. Suma Ramesh, parent of Guru (Names changed on request), a 9-year-old child with Autism and ADHD, shares her experiences of the lockdown with us. Suma, when asked if there was a positive edge to the lockdown, says, “No, I don’t see anything positive about the covid-19 pandemic or the lockdown. It has only made my difficulty worse. Guru demands a lot of attention. At school, he is occupied through the day, one activity after the other. He has friends to interact with. Now, the lockdown has tied his feet up from going anywhere. He misses those rides to the school and back. To keep him occupied through the day, one activity after another, is a great challenge to me.”
She furthers, “Now that the domestic help is unavailable, taking care of the household chores along with keeping Guru occupied, is an uphill task for me.”
On asking, how the lockdown has made a difference to her life, Suma reveals, “I miss the ‘me time’ I used to get before the lockdown. All the mothers of our special school are close friends. We spent time watching movies and going around the city together, while our kids were at school. I miss those times immensely now.” It is true that these little pleasures of life mean the most in our lives. Moreover, there is no denying of the fact that ‘a happy mother makes happy children!’
I was curious to know if there were any takeaways from the lockdown. Suma takes a moment to think and speaks, “I have learnt different therapies that are given to Guru, through the online therapy sessions from school. I have learnt to be assertive with him. Above all, what I have learnt is that we can adapt to any situation, over a period. Not just me, Guru has also got adapted to this new routine.” Isn’t the phenomenon of adaptation a miracle of Human Resilience!
The interaction with the young mothers of children with special needs, leaves me with conflicting emotions. I see difficulty, gloom, struggles, misery, and dejection on one hand, and aspirations, new light, hope, and human resilience on the other. Here are the parents of persons with special needs, who are sailing through all odds, only to make their children independent or bring them into the mainstream. What is our part in their lives, as citizens of this society? All that we need to do is ‘Accept’ them as an integral part of our society and walk with them, at least in times of such crisis.
Assoc. Prof. Akshata Jaiprakash
Department of English
Balaji, Anandhi. Personal interview. 18 May. 2020.
Rajesh, Kalpana. Personal interview. 18 May. 2020.
Ramesh, Suma. Personal interview. 18 May. 2020.
Selvarathnam, Meera. Personal interview. 18 May. 2020.