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So much of parenting my 5-year-old son, Krishna, has involved advocating for him — first in pediatrician’s and pediatric specialists’ offices, then in emergency rooms, urgent cares and hospitals, then with therapeutic services agencies and specialty pharmacies and medical equipment and health insurance companies.

This year, I began another complicated questwith an institutional behemoth: the New York City Department of Education. This one involved finding a kindergarten for Krishna, a stem-cell transplant survivor who suffers from a rare immune disorder and whose main special needis to be kept apart from other humans.

The transplant that saved Krishna’s life left him chronically immunocompromised. He cannot be in crowded public places and can only be indoors with a small number of infection-free, fully vaccinated adults — and with no more than two infection-free children at a time. The array of DOE options for students with special needs — separate schools, in-classroom aides and therapies — all risk exposing immunocompromised kids to infection. The things they can really use — in-home and remote services — have become flashpoints in pandemic resource battles and culture wars.

Krishna, 5, is a stem-cell transplant survivor who suffers from a rare immune disorder and whose main special need is to be kept apart from other humans, so a teacher comes to his home. Credit: Kavitha Rajagopalan

That’s what led me to thinking through school options last year, with the help of a lovely school psychologist at our neighborhood elementary school in Brooklyn.

She assured me that Krishna would be enrolled in his neighborhood school and registered for home instruction with a certified teacher. He would receive physical and occupational therapy and even counseling to help him navigate feelings that might come up from literally belonging to the outside margin of a classroom he would likely never set foot in.

I filled out paperwork and spent the summer talking up the concept of school, building my boy up for this big new chapter in a life that at times we believed would never last this long.

Days before school opened, I got an email from the home instruction department at the DOE. Krishna wasn’t enrolled in his neighborhood school after all. My call to the school was rushed and frustrating as we were on our way to see a doctor.

By the time we got to the doctor’s appointment four minutes late, even though I’d called three times from the road they said we would have to wait. In a crowded waiting room. With an immunocompromised child. During a pandemic.

Advocating for Krishna is different now. Instead of saving his life, I fight to sustain it, and to enrich it. He is entitled to an education in a city that guarantees universal free public education to all of our children.

Sometimes, in New York, all you hear is no, sorry, not possible, not in my hands, that’s our policy, it’s not up to me, not my problem. And if you’re a mom, and you’re slowly and cumulatively losing your mind, you can see people dropping a wall, literally backing away, refusing to engage. So, I gathered myself and, as I’ve done ever since he was born with a life-threatening condition, I advocated for my son.

Advocating for Krishna is different now. Instead of saving his life, I fight to sustain it, and to enrich it. He is entitled to an education in a city that guarantees universal free public education to all of our children.

It’s one thing to know what he deserves, though, and another thing entirely to get it.

Before classes began, Krishna’s mom took him for a visit to his neighborhood public school in Brooklyn, New York. Credit: Kavitha Rajagopalan

After the doctor’s office that day, I went to his neighborhood school, clutching my sheaf of paperwork. The school psychologist who had worked so hard with us the previous spring no longer worked there, and no one there knew who my son was. A kindly secretary said it might be too late to enroll him. Home instruction, she explained, was for already-enrolled students who had temporary medical emergencies, not for students too fragile to even enter school to begin with.

I asked to meet with the principal. I showed her a picture of my son. I told her how excited he was to start school. I told her how he’d asked when he could meet his teacher, and if he could finally have friends.

Her eyes softened, and she told me to wait. Ten minutes later, she returned with an assistant principal, herself a survivor of childhood illness and a former special education teacher.

Slowly, we worked through the noes: No, it’s too late to enroll; no, we can’t enroll a kid who can’t physically attend school; no, we can’t enroll a kid who isn’t vaccinated — even though his medical condition is what prevents him from being vaccinated and the reason he needs home instruction in the first place.

For two weeks after schools reopened, I juggled Krishna’s medical needs with work demands and my older child’s return to the classroom — and spent up to four hours each day trying to get Krishna into school. I called and emailed anyone at the DOE I could think of: the family welcome center, the home instruction department, the district superintendent.

“I don’t know what to tell you,” I heard repeatedly.

No, we can’t approve his medical vaccine exemption form, and we can’t have him receive services on school property (outdoors, on the playground) if he’s not vaccinated. We can’t approve this, can’t approve that. No. No. No.

Krishna’s teacher works to keep him learning and engaged at home. Credit: Kavitha Rajagopalan

By then, the city’s teachers union had entered into negotiations with the DOE to suspend home instruction, which had apparently received thousands of applications from families who wanted a remote option. It began to seem likely that no teachers would be going into the homes of kids who can’t go into the classroom for medical reasons. And there would be no remote option.

In the meantime, we got Krishna enrolled at PS 380 and he was placed in a kindergarten classroom. Now that he was enrolled, I could register him for home instruction while the teachers union negotiations continued.

I double-masked him and walked over to the school to pick up workbooks and a teacher manual, so I could help him keep up with his class. I took a picture of him in front of his new school, with none of his classmates around and the first-day welcome-back balloon arch a little deflated and sagging.

Krishna’s at-home “school,” doesn’t look like anyone else’s. But he is learning, and we are compromising. We kept him from falling through one of the cracks that had opened up between a political battle over remote instruction during a pandemic and an impenetrable bureaucracy.

The kindergarten coordinator came out to meet him and welcome him.

“This is my school! I love it! I’m so excited to learn, Mommy!” he told me afterward.

Bringing him into the school this way wasn’t going to be easy on anyone. The staff has been navigating an ever-changing set of directives around exposures and quarantines, supporting children who have lost family members or struggled with hunger during the pandemic. No one was familiar with the complexities of transplant science and the very specific nature of his special needs. And we would have to instruct him ourselves. Still, they valiantly worked with me to help him. They got him an iPad and they set up a Google Meet. When we signed in during the first week of school, 18 little faces gathered around a screen, exclaiming: “We love you, Krishna!”

The following week, they arranged for Krishna to be class star of the day on another Google Meet. He told them about his favorite color (red), his favorite animal (snake) and his favorite food (pizza).

Krishna connects with his “classmates” via Zoom so he can feel connected. Credit: Kavitha Rajagopalan

His classmates each showed him a picture they’d drawn for him. One of them had drawn a picture of himself and Krishna hugging. Krishna told me he’d made a best friend. Later that week, his teacher met him outside at a picnic table to conduct his reading assessment.

After two weeks of emailing and calling and resending his forms and education plans and exemptions to various administrators across the DOE, Krishna was approved for home instruction.

The day his home instruction teacher began coming to the house, he got up and picked out a special outfit. “I can’t wait to tell my class about my teacher!” he said.

Later that day, I got a call from PS 380. Now that Krishna was enrolled in home instruction, he was officially no longer part of the class.

It’s understandable — his teachers have their hands full wrangling 18 students, many of whom have dealt with major trauma. But it hurts to see this small window into a community and friendship close.

I had hoped we could schedule his physical and occupational therapy to be held on the school’s playground, so he could still see the other students, but the DOE wouldn’t approve it for “liability reasons.” He was also told he could not play near his class during recess.

Related: Is the pandemic our chance to reimagine education for students with disabilities?

Now I’m fighting to get him services he’s entitled to: physical and occupational therapy twice a week and psychological counseling. The DOE no longer pays for remote therapies, and most contracted agencies don’t have enough vaccinated staff members to send into homes. The only options available to him are remote physical and occupational therapies, which won’t be approved — and wouldn’t help him even if they were.

I’m thankful to the teachers doing all of this extra work during a pandemic to help my son; paradoxically, they thanked me for my involvement. It’s only a function of my privilege — my resources, my flexibility with my job, the tireless partnership of my husband, the support of my boss and colleagues — that allows me to fight so hard for Krishna to get what is, by right, already his.

I filled out paperwork and spent the summer talking up the concept of school, building my boy up for this big new chapter in a life that at times we believed would never last this long.

Krishna’s at-home “school,” doesn’t look like anyone else’s. But he is learning, and we are compromising. We kept him from falling through one of the cracks that had opened up between a political battle over remote instruction during a pandemic and an impenetrable bureaucracy. Publicly funded in-home instruction with a skilled educator is an incredible resource — if you can push your way to getting it.

Krishna has already forgotten his best friend’s name from the class. His classroom teacher still texts me from time to time. We will try to schedule a Google Meet for him to say hi now and then, maybe for a class birthday party.

His neighborhood school has a chair waiting for him, and now at least they know him.

In the two brief weeks he was a part of their community, his teachers and school staff loved Krishna and made him feel like he belonged. One day, when he is able, he will have a community waiting for him.

Kavitha Rajagopalan is a writer and community engagement manager for the Center for Community Media at CUNY’s Craig Newmark Graduate School of Journalism. She lives in Brooklyn with her family.

This story about education for immunocompromised students was produced by The Hechinger Report, a nonprofit, independent news organization focused on inequality and innovation in education. Sign up for Hechinger’s newsletter.

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