Covid Woes: How Indian American Mothers are Managing Work, Home and Their Special Needs Kids

The COVID-19 pandemic, no doubt, has upended life we once knew, as social distancing mandates have led to a more virtual existence. Kids are at home, studying virtually, while parents are juggling with their work, and all the other stuff the quarantine life has been throwing at them. From assisting kids in their virtual classes to fixing computer glitches and from being their playdate to fixing them a quick snack or a gourmet meal, parents have been performing multiple roles for the last year, and counting. And it’s no surprise that the load of it all falls on the lady of the house. There have been numerous accounts of how women have been affected more than men by this outbreak’s social and economic effects. And if there’s a child with physical, behavioral and developmental conditions, it’s an added toll, as the pandemic has messed up their support system — teachers, therapists, nurses and other caregivers.

Print and social media has widely covered the plight of mothers during the past year, as they try to juggle work and children at home. Last summer, several articles predicted that the impact of the COVID-19 pandemic on women, and the accompanying child care and school crises, would be severe. In July, The Washington Post reported that one out of four women who became unemployed during the pandemic said it was because of a lack of child care, “twice the rate among men.”

Indian American mothers are no exception. During the past few weeks, I met and spoke with  several of them who are trying to manage the pandemic’s effect on their everyday life. Most of them have found help from a community support group to cope with its devastating impact on their life, livelihood, and, most notably, their children with special needs. 

Job Loss and Impact on Self and Family

Neelam (who did not want her last name to be used), lives in Massachusetts suburb, with her husband and two children — a 6-year-old daughter with autism spectrum disorder (ASD) and a son, 15. Last November, Neelam lost her job, and with it her health insurance, which has left her daughter, with severe speech disorder, without medical care. The child was scheduled to have a speech repair surgery this February, and now it has been canceled. When schools closed, the children stayed at home. Recently, her daughter started going to a special education program, three hours a day. The rest of the time, she is at home, without any after-school care. Her teenage son has become very introverted, and is glued to his iPad and phone. She herself is not in the best of health, and mentally is unable to be there for her children. She has good days, and bad, and is going through depression. Without health insurance, she cannot afford therapy. The pandemic has strained her entire family. Her husband spends long hours on the computer, often working 16 hours a day, to keep things going. 

If the mother is not well, the family suffers. Even before the pandemic, mothers had to juggle childcare along with their jobs. A report compiled by Kidsdata shows almost a third of parents of children with special health care needs reported parenting stress before the pandemic, more than double the rate reported by parents whose children do not have special needs. Now closures of schools and daycare centers have increased childcare needs, which has a significant impact on these mothers.

Zeb Ahmed (name changed on request), a Newton, Massachusetts-based Pakistani American mother with an autistic child, says working from home is “actually more hours than normal.” As there’s “no back up” for her position, she has “minimal time off.” Since Ahmed’s health insurance is tied to her job, leaving work is not an option. However, during the pandemic, the family had to dip into their savings to get a nanny to help with virtual school. Even with that, Ahmed had to juggle a list of therapies, medical appointments, and school zoom meetings. “I don’t feel great about anything, [I’m] just trying to hold on.” Ahmed says, adding: “With all the rapid changes last spring – the cancellation of classes, limited outings, and mask-wearing – without the specialized support from the school,” specially for her child with a new diagnosis, “has been devastating.” As a parent, she does not have any training to provide these specialized services to her child. 

Like Ahmed, there are several mothers who don’t have any choice, other than to put an extra burden on themselves.

With a kid requiring special attention at home, Supriya Chadha of Lexington, Massachusetts, agrees with other mothers. She says 24 hours are not enough. On top of it, cheerlessness in the environment brings her morale down. Chadha chronicles a day in her life during the pandemic: “I woke up at 7:30 am, and by 8 am started working and cooking in the kitchen. Then assisted my son with remote lessons on the breakfast table during the day. I worked, cooked, cleaned in the kitchen. By 9 pm, I was exhausted and realized I didn’t get a chance to sit down for more than 5 minutes.” 

Before the pandemic, it was women who did about three-quarters of the unpaid labor at home. Now, they’ve taken on more child care along with cooking, cleaning. The cost is real, both to women’s mental and physical health. Experts however note that those giving care to children with special needs, need to focus on their physical and mental wellbeing. 

In a Dec. 17, 2020 article in Medium, Center for Translational Neuroscience at the University of Oregon reportsays “the emotional well-being of caregivers with children with special needs is suffering.” In a seminar on Mental Health organized by the Odisha Society of the Americas (OSA) on 7^th March, 2021, Dr. Chandan Nayak, a practicing psychiatrist in Illinois says that “100 percent of the caregivers are women.” Similarly, Chandra Mishra, a registered nurse, in Philadelphia, Pennsylvania notes that “a caregiver must spend an hour or two on oneself before taking on the stressful duty to take care of the patient.”

For Rajini Karthik of Burlington, Massachusetts, the pandemic has meant becoming both mom and therapist to her 9-year-old son with ASD. Karthik has brought the office into her home, managing meetings, and sanitizing everything, besides homeschooling her child.

But most mothers do not have that luxury. 

For Rajini Karthik of Burlington, Massachusetts, the pandemic has meant becoming both mom and therapist to her 9-year-old son with ASD. Karthik has brought the office into her home, managing meetings, and sanitizing everything, besides homeschooling her child. With so many responsibilities as a mother, Karthik has learned to be more patient, understanding, and more sensitive to others’ pains around her. With homeschooling, she has realized “how much of an effort the child’s teacher puts into working with him.” She adds: “My respect towards them has immensely increased.”

Megha Shree Das of Framingham, Massachusetts, experiences no free time and fears her health with the increase in stress. “My blood pressure shot up,” she says. Like Das, Natick, Massachusetts-based Priya Ravi, who has a 17-year-old autistic daughter, feels helpless and stressed without any home health care service. 

In many cases. the mothers’ anxiety and stress is passed on to the kids, but often they don’t comprehend the reasons for the changes that they are experiencing. 

Impact on Children

Aparna Bhattacharya, executive director of Raksha in Atlanta, Georgia, an organization which caters to domestic abuse and violence, says their clients, especially single mothers, have faced myriad problems tied to their kids’ education. When schools shifted education online, many of their clients reached out to them for help with schoolwork and tutoring. Not having access to a computer and a good internet connection, the children stayed home, adding to their distress. 

The problems were compounded for those with special needs children. 

Das notes that for a few months, after the pandemic hit, there was no Applied Behavior Analysis (ABA) support that provides services to assist children with communication, behavioral, and socialization challenges with autism. Speech therapy stopped as well. 

These mothers had no support for their child. With remote learning from school, it is hard to keep an autistic child seated and make him/her do all the activities required. The responsibility falls on the mother to handle the exponential increase in screen time and related behavioral issues. 

Das recalls when her son couldn’t go out and visit his friends on the playground, was unable to get ABA service and was confined to the room (that too with restriction because dad’s been working from home), it “triggered behavior issues.” It also has taken a toll on their marital relationship, where the patience level is low.

Nandini Mallick of Newton, Massachusetts, is the mother of an 18-year-old special needs daughter, who is “medically complex and is not going to school.” Therapies provided online have meant  that Mallick has to spend her “entire mornings sitting with her and being her occupational, physical, speech therapist and educator.” Mallick lifts her physically challenged daughter, who requires two people. Now that she is doing it by herself, she is very stressed about the imminent injury. 

Some mothers have reported that being physically there for their children has been exhausting as well as an enriching experience. Massachusetts-based V. Gopal, a mother of two children, a teenager, and an 11-year-old autistic nonverbal child, has been helping her younger child learn.  “I’ve become an adept speed teacher over the last year,” she says. 

The pandemic has a differential impact on various members of the family. Several mothers admitted that, on the one hand, their attention has helped their autistic children; but on the other, their teenagers have suffered from depression and anxiety disorder.

Hima Bindu of Boston, Massachusetts, lost her job to the pandemic. She devoted the extra time to help with remote learning for her autistic son and feels happy that he has learned much faster than the pre-covid time. 

Support Group

How have these mothers survived? What has been their source of endurance, especially during these challenging times? 

Each mother I talked to, referred me to Jaya Pandey, founder of the Desi Moms Network in the Boston area, as their anchor. Pandey, a business analyst for a financial company and a mother of a 20-year-old autistic son, started the group in October 2016, and now it is 220+ members strong. 

From her own experience, Pandey realized that there was a dearth of a support system mothers like her, especially in the Desi community, where a child with special needs is still considered a stigma. Indian immigrants showcase their kids as a symbol of family success. Pandey observes that “the community tends to pity a mother with a special needs child.” These mothers use the Desi Mom’s Network as a forum for sharing their dukkha (sadness) without worrying about backbiting or gossip.

The Desi Mom’s Network started as a Whatsapp group, primarily focused on mothers, not the kids. While getting together with the mothers, Pandey realized that the group has also become the support system to discuss finance, marriage counseling and mental health. Now it gets referrals from various community organizations, even the State Department of Disability Services.

Since the group was unable to have their monthly meetings in restaurants, or go on family picnics in the parks during the pandemic, they switched to Zoom calls every Tuesday evening. 

Last summer, Pandey conducted an experiment and shot family photos for these parents and their children. The response she’s received is encouraging. Some have sent her thank you notes, while others thanked the groups “generous support” during the pandemic. Mamata Rath of Acton, Massachusetts, mother of an 11-year-old son (nonverbal and Autism diagnosis), says the Tuesday zoom calls with group and discussion with other parents have helped her to survive the pandemic.

(Top illustration: Rayne Zaayman-Gallant/EMBL)

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Annapurna Devi Pandey teaches Cultural Anthropology at the University of California, Santa Cruz. She holds a Ph.D. in sociology from Jawaharlal Nehru University, New Delhi, and was a postdoctoral fellow in social anthropology at Cambridge University, U.K. Her current research interests include diaspora studies, South Asian religions, and immigrant women’s identity making in the diaspora in California. In 2017-18 she received a Fulbright scholarship for field work in India. Dr. Pandey is also an accomplished documentary filmmaker. Her 2018 award-winning documentary “Road to Zuni,” dealt with the importance of oral traditions among Native Americans.