One has autism and the other doesn’t.
That distinction has long set them on divergent paths in school and life. But what it means now, at a time when a microscopic threat has upended our lives in significant ways, is that when social distancing no longer feels necessary, one will rejoin society in the ways that are expected of most teenagers — and the other won’t.
Anshu Kapoor has been thinking a lot about that lately.
She has been thinking about what it might feel like to push one child into the world while making the nest feel less empty for the other.
She has been thinking about what really matters when it comes to parenting during a pandemic, and what doesn’t.
If you are a parent of a school-age child right now, you’ve likely noticed a lot of conflicting opinion pieces written lately about how to approach this unexpected, demanding moment. Set a schedule. Throw out the schedule. Limit screen time. Forget screen-time limits. Lean in. Lean out. Lie down.
And if your social media feed is anything like mine, you’ve probably also seen posts from parents who are upset that their children aren’t getting enough instructional material from the schools, followed by posts from parents who are upset that their children are getting too much instructional material from the schools.
I have started scrolling past most of those — not because I don’t think some parents have valid concerns or insight to share. I just don’t have time to trudge through them now that I am splitting my days and nights between working and taking care of two young boys who fall asleep with more energy than I wake up with.
I also decided early on in the pandemic that, regardless of what other parents around me were doing, I would spend these days making sure my children were learning in ways that wouldn’t leave them remembering this time as stressful and anxious. On a recent afternoon, this involved the 5-year-old measuring ingredients for homemade apple muffins while the 7-year-old got lost in his first Harry Potter book that his teacher didn’t assign or will even know he read because it doesn’t appear on the school’s reading app.
On another day, I made up a holiday. I called it “kindness day” and made the two think of nice things they could do for people inside and outside of the house.
This flexible way of learning has kept my children engaged and happy. But other children may need more structure. They may crave more worksheets. The truth is, there is no right template. The needs and abilities of children are so unique that what may work for one may not for another.
Some of us are just finding that out.
Anshu and her husband, Kapil Kapoor, have long recognized that.
Anshu says they started noticing differences in their twins, Sophia and Saisha, when they were about 14 months old.
“Initially, they had been very connected,” Anshu tells me when we talk on a recent afternoon. Then she started noticed Sophia pulling away. “I was losing this child. She would get lost in her own little world. She wouldn’t make eye contact. She just withdrew.”
A few months after the girls turned 2, Sophia received an autism diagnosis. Anshu says the family moved shortly after that from Italy to Loudoun County, believing their children would have more of a chance to thrive there.
In June, the twins will turn 18. If everything returns to normal, Saisha will head to college in the fall.
Sophia, who still needs help with daily tasks and speaks only in short phrases, will remain at home with her parents.
Anshu says that physical and symbolic distance will be difficult for both of her daughters in different ways, but it has also made the family appreciate this forced time of togetherness all the more. Normally, she says, her husband would be traveling now and Saisha would be busy with end-of-year school events. But this has made them all stand still and, in a way, understand Sophia on a deeper level.
Most people right now can’t wait to escape the shut-in feeling that the need for social distancing has caused — and some aren’t waiting — but that sense of social isolation isn’t temporary for Sophia.
“I hear people around me saying, ‘Oh, I’m tired of being home.’ This is how Sophia lives,” Anshu says. Sophia has traveled internationally and goes on outings with her family, but for the most part, she stays home because public places can prove too stimulating for her. “It’s nice for her that everyone is around. It’s not a good way for this to happen, but it’s good that we’re all together. We are part of her world. Now, we are really experiencing her world.”
Like any parent of a child with a disability, she says she worries about what would happen to Sophia if something were to happen to her or her husband. But Anshu also credits Sophia with helping her surrender to what she can’t change, and teaching her that children are learning even if it doesn’t always seem that way.
When Sophia was 15, Anshu says she finally found a way to communicate with her, and for the first time realized her daughter was aware of much more than anyone suspected.
Anshu says she learned through a local workshop how to use a form of communication called Rapid Prompting Method, or RPM, with her daughter. RPM has been discredited by national organizations and experts as “pseudoscience” because it involves a person with a disability spelling out their thoughts on a letter board while another person holds that board. I am not an expert in autism or RPM, but I understand why there would be concern that a guided form of communication might not reflect the thoughts of a person with a disability.
I also understand why, as a mom who wants the best for both her children, Anshu felt compelled to write for the blog “The Fem Word” about what it has meant to her to hear Sophia’s “beautiful and insightful” inner voice these last few months.
“Sophia has taught us unconditional love and a truly Zen way of living in the moment,” she wrote. “During the covid-19 pandemic, when the world seems to have come to a standstill and the future is uncertain, Sophia puts it all into perspective. She heals us through her poetry.”
What follows is a poem that begins:
The unknown monster
Its power immense
It rages and cries out
Time for it to fade away
Anshu says she plans to compile Sophia’s poems in a book that she can give her for 18th birthday. With it, she hopes to show her that while her path may be different from her sister’s, it is also meaningful.
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