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Burdened with the major part of emotional and caregiving load, these NRI moms of children with special needs on the autism spectrum share their stories of struggle.
The pandemic, no doubt, has disrupted everybody’s life. Print and social media have widely covered mothers’ plight who have been trying to juggle work and children. There have been numerous accounts of how women have been affected more than men by this outbreak’s social and economic effects.
The pandemic has walloped the Indian American mothers. During the past few weeks, I have interviewed several mothers who have difficulty coping with the pandemic’s effect on their everyday life. A community support group has played a critical role in helping them cope with its devastating impact on their life, livelihood, and, most notably, their children with special needs.
Even before the pandemic, mothers had to juggle childcare along with their jobs. A Kidsdata report shows that 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.
Neelam* lives in West Borough, MA., with her husband and two children, a 6-year-old daughter with autism spectrum disorder and a son, 15. In November 2020, she lost her job, which has had a spiral effect on the whole family.
The loss of her health insurance has left Neelam’s 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 the schools were closed, the children stayed home. Only recently, Neelam’s daughter has started going to her unique education program 3 hours a day. The rest of the time, she is home without any after-school care program. Her son, a teenager, has become very introverted, is glued to his iPad and phone. She is not in the best of her health, and mentally she is not there for her children. She has good days, bad days, and is going through depression. Without health insurance, she can’t even afford to have her therapy.
This pandemic has strained her entire family. Her husband has to spend long hours on the computer, often working 16 hours a day to keep things going.
If the mother is not well, everybody in the family suffers.
Zeb* Ahmed, a Newton, MA-based Pakistani American mother with an autistic child, says that working from home is “actually more hours than normal, there was no back up for my position so minimal time off.” Since her health insurance is tied to her job, leaving work is not an option for her.
During the pandemic, they had to dip into their savings to get a nanny to help with a virtual school. Even with that, she had to juggle a list of therapies, medical appointments, school zoom meetings – “I don’t feel great about anything – just trying to hold on.”
Ahmed says, “with all the rapid changes last Spring – the cancellation of classes, limited outings, and mask-wearing – without the specialized support from the school, especially 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 kid.
The problem is that the mothers here don’t have any choice other than to put an extra burden on themselves.
With a kid requiring special attention at home, Supriya Chadha from Lexington, MA, agrees with other mothers – she says twenty-four hours are not enough. On top of it, cheerlessness in the environment brings her morale down. She 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”.
A report on 17th Dec 2020 on Medium says that “The emotional well-being of caregivers with children with special needs is suffering.” Dr. Chandan Nayak, a practicing psychiatrist in Illinois, says that he sees “100% of the caregivers are women.” Chandra Mishra, a registered nurse, in Philadelphia says 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, MA, the pandemic has meant becoming both mom and therapist to her nine-year-old son with Autism Spectrum disorder with severe needs and dependability. She has brought the office into her home, managing meetings, sanitizing everything besides homeschooling her child.
With the impossible responsibilities as the 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 put into working with him, my respect towards them has immensely increased.”
Megha Shree Das, from Framingham, MA, experiences no free time and a fear of health issues with the increase in stress – sudden death and anxiety. “My blood pressure shot up.” The kids feel the severity because they don’t know why these changes are happening. Natick, MA, based Priya Ravi with a 17-year-old autistic daughter feels similarly without any home health care service. Asha from MA, a mother of an autistic teen daughter, agrees.
Aparna Bhattacharya, of the Raksha organization in Atlanta, Georgia, which caters to domestic abuse and violence, says that 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, making them distressed.
Das says that initially, 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. Dr. Marilyn Augustyn, a developmental and behavioral pediatrician at Boston Medical Center and professor of pediatrics at Boston University School of Medicine, says, “for kids with developmental challenges, the challenges got exacerbated by Covid,” reported in New York Times, February 4th, 2021.
So in terms of the child’s progress, the mothers have no support. With the remote learning from school, it is hard to keep an autistic child seated and make him do all the activities required. The responsibility falls on the mother even to handle the exponential increase in screen time and related behavioral issues.
Das says, “Not visiting his friends on the playground, not going out, not getting ABA service, confined to the room (that too with restriction because dad is working from home) triggered behaviour issues” in her child. It also has taken a toll on their marital relationship, where the patience level is low.
Even before the pandemic, women did about three-quarters of the unpaid labor at home. Now, they’ve taken on more child care along with cooking, cleaning than before. The cost is real, both to women’s mental and physical health.
Nandini Mallick from Newton, MA, a mother of an 18-year-old autistic daughter, says, “my daughter is medically complex and is not going to school. Therapies provided online have meant “I am spending my entire mornings sitting with her and being her occupational, physical, speech therapist and educator.” Mallick lifts her physically challenged daughter, who requires two people. Mallick is doing it by herself and is very stressed about the imminent injury.
Studies report that along with the loss of services for the children with special needs, the parent’s mental health is suffering without any sign of improving as the pandemic continues.
Some mothers reported that being physically there for their children has been exhausting, but an enriching experience. MA-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, and says that “I’ve become an adept speed teacher over the last year.”
The pandemic has a differential impact on various members of the family. Several mothers admitted that, on the one hand, their attention had helped their autistic children; on the other, their teenagers have suffered from depression and anxiety disorder.
Many mothers had to leave their jobs to manage childcare, education, education, and housework, which takes a toll on their mental state.
Hima Bindu from Boston 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.
Bhattacharyya says that many of her colleagues have left their jobs to manage the home front.
Mothers need help and support, which we rarely hear in the everyday discourse. How have these mothers survived? What has been their source of endurance, especially during this challenging time?
Each mother I talked to referred me to Jaya Pandey, the Desi Moms Network founder 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 this group in October 2016, and now it is 220+ members strong. From her own experience, she realized that there is hardly any support system for these mothers, especially in the Desi community. A child with special needs is still considered a stigma.
Indian immigrants showcase their kids as a symbol of family success. Pandey says, “community tends to pity a mother with a special need child.” These mothers use Desi Mom’s Network as a forum for sharing their dukkha, sadness without worrying about backbiting or gossip.
Desi Mom’s Network started as a Whatsapp group primarily focused on mothers – kids are not the focus. While getting together with the mothers, Pandey realized that Desi Mom’s 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.
They could not have their monthly meetings in restaurants and family picnics in the parks during the pandemic. They switched to zoom calls every Tuesday evening.
Last summer, 2020, Pandey’s initiative to shoot family photos for these parents and children was an experiment. A note from a family, “we could never do that, and because of you, we have a family picture,” has touched Pandey. Many mothers say that Desi Mom’s network was generous support in this pandemic situation. “Family photoshoots and weekly zoom calls arranged by Jaya gave the feel of a family.”
Based in Acton, MA, Mamata Rath, a mother with an 11-year-old son (nonverbal and Autism diagnosis), says that Tuesday zoom calls with Desi mothers network and discussion with other parents have helped her to survive this pandemic.
*These respondents wanted to remain anonymous.
First published here.
Image source: Jordan Whitt on Unsplash
Annapurna Devi Pandey teaches Cultural Anthropology at the University of California, Santa Cruz. She holds a PhD in sociology from Jawaharlal Nehru University, New Delhi, and was a postdoctoral fellow in social anthropology at Cambridge read more...
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