Disability, access, and education in a pandemic

UGA professor Usree Bhattacharya's little girl Kalika has a rare neurological disorder, Rett syndrome, affecting about one in every 15,000 live births, primarily girls
UGA professor Usree Bhattacharya's little girl Kalika has a rare neurological disorder, Rett syndrome, affecting about one in every 15,000 live births, primarily girls

Even with Ph.D. in education, mother struggles with ‘this lost year of support, this lost year of normalcy’

Usree Bhattacharya is an assistant professor of language and literacy education in the College of Education at the University of Georgia. She is also the parent of a child with a rare neurological disorder, Rett syndrome.

In this guest column, Bhattacharya talks about the challenges of remote learning with a child with special needs who relies on a sophisticated eye-tracking device to communicate with her teachers and therapists. You can read an earlier column by Bhattacharya here.

This is a fascinating story about a parent’s challenges, struggles and rewards.

By Usree Bhattacharya

The iPad cackled with static as my 5-year-old daughter Kalika’s teacher asked in her warm lilt, “What’s the weather like outside your home?” My daughter turned her head, looked out the window, and responded: “Sunny.” I prompted, “And?” She responded: “Humid.” We had gone outside earlier that morning, and she was right. It had rained all day yesterday, and humidity was at 85%. Kalika’s teacher laughed with delight and agreed. I muted the Zoom window as her teacher moved on to the next student.

What appears to be a rather typical classroom exchange during virtual schooling is rendered extraordinary by the fact that my daughter is almost completely “nonverbal.” She has a rare neurological disorder, Rett syndrome, affecting about one in every 15,000 live births, primarily girls. Around the age of 2, regression sets in, leading to a near total loss of speech; limited functional hand use; mobility issues; breathing problems; sleep disruptions; seizures; and gastrointestinal issues, among others. A child who had till then spent many happy hours playing could no longer grasp her toys because of the development of constant hand clapping (called stereotypies). Until 2, Kalika had been a bilingual Bangla-English speaker with a vocabulary of 80 words; as regression set in, so did the heartbreaking silence.

That is, until Kalika received a magical eye-tracking alternative and augmentative communication device. It arrived on her third birthday, December 24, 2018. The device, a Tobii i-15, is a brilliant tool that allows the eyes to function like a mouse, permitting her to control a computer through her eyes. Installed within it is a software device (Snap Core First) that she uses to talk. It’s set up with core words, or most frequently used words, as the main page (such as I, can, do, etc.); from there, she navigates to a world of verbs and vocabulary, in both English and Bengali (the latter more limited since I created that part).

University of Georgia professor Usree Bhattacharya and her 5-year-old daughter Kalika.
University of Georgia professor Usree Bhattacharya and her 5-year-old daughter Kalika.

Credit: Usree Bhattacharya

Credit: Usree Bhattacharya

Over time, she has learned where hundreds of words and phrases are located, having used them hundreds of times each day. She says “I love you” in Bengali and English so many times, that I can actually bear to look at the old video of her saying that for the first time with her mouth, back when she was one.

Equally crucially, Kalika can navigate a world of schooling in ways that have been unimaginable: girls with Rett syndrome have been classified, until recently, as “ineducable.” But now, the revolutionary eye-tracker is powerfully challenging longstanding prejudices about their abilities. Kalika has, in fact, been “reading” on her tracker since she was 3, comfortable in a universe of symbols in ways that very few children will ever experience. This is not to say that it is easy: using an eye-tracker requires concentration, focus, and memory, which are specific areas of dysfunction in Rett syndrome. The motivation to communicate is powerful, however, and that gives her the superhuman fuel she needs to put in the hard work.

Kalika was supposed to start pre-school in August, but of course, our world had been rocked by a devastating pandemic. She stopped going to daycare in March; since then, a child who was doing well overall began struggling to walk; had painful bouts of cataplexy several times a minute; struggled to talk; couldn’t sleep well; and, worst of all, experienced the dreaded onset of seizures. Friends she’d been close to at daycare slipped away; our only child was locked in a friendless and lonely world. It was too dangerous to risk exposure, so she was completely isolated.

UGA professor Usree Bhattacharya's daughter Kalika, 5, has a rare neurological disorder, Rett syndrome, affecting about one in every 15,000 live births, primarily girls.
UGA professor Usree Bhattacharya's daughter Kalika, 5, has a rare neurological disorder, Rett syndrome, affecting about one in every 15,000 live births, primarily girls.

In August, she was slated to start pre-school in our local school district, but our community spread was so high that the wise decision was made to switch to virtual schooling. This was particularly hard because my husband and I are both faculty at the University of Georgia and trying to juggle Kalika’s schooling alongside our commitments has been brutal, though we’ve had some child care since the start of the fall semester.

We were already having to do all her speech, occupational, physical, and feeding therapies at home now (music therapy was too hard to switch to the virtual format), but she also now had a separate team at school, with everything virtual. Kalika’s support team within the school, as with many children with significant disabilities, entails teachers; parateachers; physical, occupational, and behavioral therapists; speech therapists; vision specialists; and nurses, among others. But because of the pandemic, we were in a situation that only one or two of the team had even seen Kalika in person; vitally, most had never seen an eye-tracking device, nor seen her use it. Meetings ensued, virtually, but it was overwhelming, no doubt, for everyone.

But something unexpected happened once classes started: Kalika began to thrive. The structure of greetings, of discussing the weather, story time, all delivered through the screen somehow really worked. She was successfully navigating the demands of switching between iPad and her eye-tracker for school. A few weeks in, however, the county decided to renew in-person instruction (an experiment that lasted just a few weeks), and Kalika’s entire team had to be changed. Another new set of teachers and therapists had to learn about the eye-tracker, again with most never having set eyes on one (or seen her).

We’ve had the tracker for over two years now, and we are still learning how to help Kalika use it, with tremendous support from Kalika’s team at the UGA’s speech and hearing clinic. I cannot even begin to imagine how challenging it is to learn about such a device only virtually, and to work to accommodate a student using it. For example, in order to greet her teacher, she has to navigate away from her Core page to “Quickfires.” To respond to questions about colors, numbers, and alphabets, she has to go to specific category pages about them. Because we frequently encountered vocabulary that was in two different categories and pages, such as “red” (under colors) and “gift” (under holidays) for Christmas themed lessons, we had to resort to having her respond with “yes” and “no”, which allowed her quicker language navigation. And if we encountered new vocabulary that was not on the tracker, we had to slow down in order to edit her pages so she could access these words.

She was able to read hundreds of books on Epic, the book app the school system uses, but she could not do any assignments as intended on Boom Cards because these were not compatible with her eye-tracker. A simple exercise to circle 15 or so words that started with the letter F would take us half hour with adaptations using an iPad and the tracker. It was hard not to despair wondering what this would look like with trained school staff working closely with her for many hours every day.

I have a doctorate in education, but with little or no skills to prepare me for the extraordinary challenges of educating a preschooler with such significant disabilities, especially when content has to be adapted for the constraints of the eye-tracker. Trying impossibly hard, her well-meaning, smart, and loving team of teachers, cut off from extended and close contact with Kalika, do their very best. At the end of the day, what’s important is that we’re safe as a community; for me, there is nothing more important than protecting Kalika’s health.

With the advent of a new administration with a plan in place to conquer the pandemic, I have renewed hope. But my heart hurts for Kalika, and all children like her, who will always bear the scars of this lost year of socialization, this lost year of support, this lost year of normalcy, all at one of the most critical junctures of their lives.

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