Opinion: A special-needs family during COVID-19

Ganesh Nayak, his wife Sitara, and their son Ishan.
Ganesh Nayak, his wife Sitara, and their son Ishan.

It’s over two months since my 18-year-old son Ishan’s school has been out. Like any family of a kid with special needs, it’s been a challenge taking care of one who needs supervision every minute, while also carving out time for actual work. His caregivers are down to two, weekday afternoons only. It’s a fairly set routine: after I change him in the morning, set his favorite album of singer Kishore Kumar on endless loop and my wife Sitara feeds him breakfast, he chills in his room for a couple of hours, and then emerges, wanting to be engaged. I take him for a long walk for 1.5 hours, then there are calls with his teacher, para pros, family, et al. Either of us takes him on a long drive in the afternoon. He then slowly dials down and settles back into his room by 6 p.m., and the evening becomes ours. It is physically tiring, moving his 90-pound frame away from stuff he has no business to be in, and distressing when, out of boredom, he bangs his head on the carpeted floor and tries to bawl and shed a tear.

But dealing with all of this becomes that much easier when we dwell on the relativity of circumstances. It is spring, the weather’s good, the walk is beautiful, we have separate rooms to work in, compared with other families who sometimes have more than one person with special needs or with behavior challenges who may be cooped up in smaller houses, and may not be able to get out much. They have our gratitude.

There’s a low-grade anxiety, not the sort that takes over everything and drowns them out, but the niggling and nibbling type, a constant discordant background hum. Some friends were discussing what plans we have instituted if the virus were to afflict one in our family — which room to quarantine in, those types of questions. Truth is, we don’t have much of a plan. We simply cannot afford to get infected at the same time, for Ishan is helpless. He has to be fed, bathed, clothed, changed. We’ll need a spacesuit like those in the movies, or eerily, from the hospital scenes on TV nowadays. Ishan is in a higher-risk category due to his disabilities. We think about it, but leave a lot unsaid — it comes in the way of functioning and dealing with the here and now. Again, relativity saves the moment: those kids and adults who are more medically fragile have it worse. They too have our gratitude.

There’s the anxiety swirling around our parents in India who are in more-restricted lockdowns. We make daily calls: my 85-year-old mother who lives alone, and Sitara’s parents. Advice and instructions go back and forth, and are sometimes contentious. It seems like the anxiety is constantly bouncing off each other like sound waves in a hollow; sometimes reverberating, sometimes damping, but not dying out. The immigrant’s guilt of not being around them at such a time is tamped down by the comfort that our siblings take care of them.

There’s the anxiety from the constant drip-drip-drip of news: the lack of PPE and ventilators in the first weeks, more cases each day, more deaths. And what to say about social media, chiefly Facebook and WhatsApp: conspiracy theories, Islamophobia (in the Indian groups) and Sinophobia (in all groups) run rampant. Yet another atrocious Internet forward: Delete. Snooze. Unfollow. But they’re posted by friends and family, who are otherwise helpful and fine people who we like and love. Perhaps they’re finding a known target to pin their impotent rage on, in a strange time. We try to refrain from judgment, for Ishan never judges anyone.

Ishan is always teaching us something.

At times, there’s a spike in the anxiety, causing it to bubble to the surface. A few weeks ago, Ishan had a Crohn’s Disease flare which can be quite painful. In normal times, it passes without undue worry. But this time we were constantly checking his temperature, and it prompted Sitara’s call to the GI nurse: we think it is a flare and not COVID-19, but … . One night both of us woke up around the same time, at 4 a.m. I wordlessly got up to check on Ishan, and reported back: he’s breathing, he’s OK.

But Ishan is happiest when both his parents are around, all day, all the time. The countless hugs for his mom, the gratitude for the smallest of things — after a walk or a drive, after cleaning him, are unfailing. And after a long day which leaves us bone-weary and mentally spent, having been “with him” every minute, sometimes he’s all over his dad, with unique sounds of expressing an additional reserve of love for me. He can go for several hours expressing those same sounds only we understand, ‘till he falls asleep. I feel guilt of another kind — that I can never love this boy as much as he loves me, to this obsessive extent.

However it’s slightly different these days — the guilt immediately reminds me of the anxiety which, like the stubborn vampire on the shoulder, is not easy to shrug off in these strange times.

Ganesh Nayak is an architect and sustainability professional living in Marietta, with his wife Sitara and son Ishan. He is co-chair of the State Advisory Panel for Special Education in Georgia. Views expressed are his own.