I’ve not spoken with my daughter in 12 years. I hope she’s doing okay during the pandemic.
A request on this World Autism Awareness Day - April 2, 2021
I came close to talking with Pepper once. I could point to a sheep or the cow on her rug and she would gut out a stuttered “Baahhhh” or whisper “Mooo.” That was for a month or so, more than a decade ago. One other time, I thought she said the word “chip”—her favorite food. Pepper spoke the word clearly, as if she’d spoken it thousands of times, but alas, like before, the word “chip” hasn’t been uttered again.
Pepper is vocal, and I’m very thankful for that (most of the time), as her noises remind me she is a person who I imagine yearns to speak but cannot. Best of all, Pepper giggles, and on those rare occasions when she has a laughing attack her throaty gasps of jubilation echo the notorious laugh of Horshack; for those of you old enough to remember the 1970s show Welcome Back Kotter.
Despite spending thousands of hours with Pepper, I constantly feel I don’t know much about her. I’m pretty sure her favorite color is yellow as she’ll almost always pick something that color out of a lineup. Like for many kids her age, the Disney movies Frozen, Tangled, and Finding Dory are clear favorites, though she doesn’t like Brave (I don’t either). I assess with high confidence she loves Tostitos chips—during the pandemic year, we’ve both consumed too many.
Beyond the simple things, I often have no idea what Pepper is thinking or how she is doing. So many times in recent years I’ve pondered, “I wonder if Pepper is having a good day?” I always imagine parents of mainstream kids contemplate things about their kids’ days all the time: Will their kid ace the test? Did they make the sports team? Did the mean kid at school leave them alone? I, on the other hand, have no idea; I don’t know what her day is like. Does she have dreams, hopes? Sometimes I think she’s anxious, but then maybe she’s just hungry or angry about something?
Pepper clearly enjoys being around other kids. The company of kids her age and younger gives her a vitality even though she can’t speak with them or play with them for very long. Pepper’s uncommon name and infectious smile keep good kids around her curious, and I’m often surprised by how respectful they are to her as she’s gotten older. Circling from the outside she smiles and perks up when other kids are around, seemingly knowing they’re her tribe even though she isn’t quite in the action. During the pandemic, does she miss people, other kids? Does she have friends aside from her parents?
All Pepper knows right now is that a little over a year ago, she quit going to school and since then it’s been her, her parents, and her caregivers in her parents’ house or a car, with no explanation. No encounters with other kids for the most part, just a few brief interchanges with other children during the lockdown, a couple social distance playground encounters, lots of short hikes in the woods, a day of school here and there, but that’s been it for my daughter. Does she think other kids vanished, abandoned her? Does she know there’s a pandemic?
In the beginning, Pepper seemed to relish in a little extra one-to-one attention. Her grandparents saved the day in the early months of the lockdowns, swooping in to help when Pepper’s school first closed in March 2020. But Pepper can’t wear a mask for more than a few minutes usually, so that means being at home or occasionally on a walk outside, and not much else, for a year.
We’d been very fortunate a few years back to get Pepper into one of the best possible schools for her disabilities, the Center for Discovery in southern New York, a campus requiring a more than 90-minute bus ride (3 hours plus per day, round trip) for Pepper. But the school is the best available and the benefits seemed to outweigh the costs of a long commute. Later in the summer of 2020, we got word that some schools would open. Pepper’s school would resume as well—but for those in residence on campus, not for those coming in from off site. In the interim, special needs Zoom school continued: a solution requiring parents, who also have to work full-time remote jobs, to execute one-on-one sessions (during the work day) or find a childcare provider to administer short in-person sessions. The few times I’ve tried Zoom school with Pepper she has been more angry and frustrated than educated, and so I’d hoped in-person school would surely be accelerated for kids with autism.
Just after Labor Day 2020, local kids went back to school. There were a few closures and bumps in the road, but the classrooms have largely stayed open to some degree. My high school back in Missouri opened late last summer and has been open since. But for Pepper, administrators decided to create a new off-campus school, ostensibly to protect the vulnerable kids on site from exposure. I thought this to be reasonable, but also figured the wait couldn’t be that much longer. In July, Pepper’s school was set to open in September; that became October. Pepper and I would drive by the mainstream kids’ school and watch them march inside donning masks with backpacks slung over shoulders.
School finally opened six months after the onset of the pandemic, on a two weeks on, one week remote school (a.k.a. no school) basis. For working parents, the only thing more difficult than finding child care every week during a pandemic is finding child care every third week during a pandemic. And less than two weeks in, school briefly closed, unexpectedly, because of a paperwork error. Then after just a few more weeks, school closed again because of high COVID rates in the community, which led into a three-week Thanksgiving break. December arrived, school opened back up for a couple days, then closed for the rest of 2020 and into 2021 due to high COVID rates in the area.
Despite all these ups and downs, I still sympathized with the school and its administrators as they tried to navigate through confusing and conflicting information, divergent parent preferences, and with the goal of protecting vulnerable children on campus with pre-existing conditions. On the next to last day of 2020, hope ensued as the Center for Discovery received some of the first vaccines for staff and faculty. CNN even showed up to film. I was happy to see these frontline teachers and staff would be the first to get the vaccine, and that it was finally available to them.
We waited for word of an opening in January. When January came, infection rates were even higher, meaning more remote school till February—devastating news. Had we, the families of children with autism, known the school would close for all but roughly 10 days over four months during a snowy New York winter, we’d likely have made alternate plans to get our children better support elsewhere or bring in family and friends. Instead the carrot of school openings remained an unattainable mirage, always just two weeks away. February 2021 brought a couple days of school, but then another COVID scare—and two more weeks of remote non-learning. In February, school closed again, this time involving a COVID case among faculty and staff it seemed, as the kids were at home on their distance learning (3rd week) program of school.
Consultation with the school after that incident revealed that staff and faculty cannot be mandated to take the COVID-19 vaccine, and it seems some, despite rightfully having the first chance to have a vaccine we as parents of special needs children could not get, declined to take the precautions necessary to be safe in the classroom, for both themselves and for the students. Pepper went back to school at the end of March, and after a full week, she’s out of school again this week, not because of a COVID-19 infection but for Spring Break. I guess an entire week of school calls for a vacation, where those with access to vaccines, or access to vaccines but refusing them, can travel, relax and unwind while we parents of special needs kids wait to see if our kids can go back to school next week. If they do go back to school next week, how long will that last?
Pepper was born during the height of the conspiracy movement claiming that vaccines caused autism, and it affected me personally (as I discuss in Chapter 10 of Messing with the Enemy) as a new parent wrestling with my kid’s diagnosis. The “Pack of Moms” I encountered and mentioned a few years back—well, many like them are entrenched in scornful social media groups now sharing COVID-19 conspiracies about alleged vaccine tragedies that always turn out to be false, or promoting evidence-free allegations about future (unfounded) harms from taking the vaccine. Alongside the vaccine hesitant and anti-vax conspiracists, I’ve had to watch the anti-maskers and COVID deniers who aren’t afraid of the virus, or so they say, but quite concerned about the safety of a vaccine approved by actual doctors. Having worked on countering social media disinformation and misinformation for most of the last decade, my daughter and I may now be indefinitely trapped in a pandemic because of it.
The kids needing in-person school the most were the last to get it, and once they did get back in the classroom, they were and continue to be quickly and repeatedly whisked back out. Those demanding the “freedom” to refuse a vaccine are denying the freedom of kids with autism and their families to access society, and the right of my daughter Pepper to an education. This is a tyranny of a minority of Americans and not the wishes of a majority — not how I believe democracy was intended to work. Many who advocate society reopening without requiring COVID-19 vaccines are also constantly worrying or posting about “saving” and “protecting” children—well, now’s your chance. By getting, rather than resisting, the vaccine, you can not only prevent yourself, family, and community from falling ill, dying, or suffering possible long-term effects from COVID-19, but you can also prevent the spread of the virus to kids and ensure that schools can open and stay open.
But the months have worn on, and trapped indoors even more each day during winter, Pepper’s demeanor tailed down a bit—or at least I think. I don’t know as we’ve not discussed it. I write this post today, on World Autism Awareness Day, April 2, 2021, not as some attention-seeking pity party for me nor as a pile-on to other tragic COVID-19 stories you’ve likely seen in the news, but rather with a simple request for those families trying to survive and thrive with autism during the pandemic:
Would you please get your vaccine so my daughter Pepper can stay in school? So special needs families can leave their homes? So our country can get back on its feet?
For those that really want America to be great again, we are only going to get back to being great if we do it together. The pandemic, the chaos, the deaths, the economic pain … it only ends if we all get the vaccine. It’s herd immunity or, ultimately, no immunity for our country should rates continue to climb and vaccine-resistant variants spread widely. We can do this, together, and when we do this together, we won’t have to be alone anymore.
And if I’m wrong, and your conspiracies about the vaccine turn out to be true for some reason and a microchip is planted in your skin or that you someday morph into a lizard person, well, that might not be so bad. The microchip could help your cellphone reception or improve the 5G on your phone where you type out endless conspiracies on social media, and being a lizard as the searing heat of climate change approaches might be a useful adaptation to our warming environment.
Get your vaccine please!!
And with that, I’m off (if all goes right) … to get my first vaccination right now—on April 2, 2021—Autism Awareness Day. Things are looking up.
And last but not least, a big thank you to Pepper, for taking what is undoubtedly one of the toughest years in American history in stride. Thank you, I love you, and I’ll tell you this in person when I gleefully return home with my sore, Pfizer-injected shoulder.
(A short break from my regularly scheduled programming here at Substack; don’t worry, I only do this every five years or so. And here’s a picture of Pepper, observing something with great curiosity, I wish she could tell me what caught her attention.)
I work for Pfizer as part of the vaccination rollout team. I’ve had many thank yous and touching stories but reading your story really showed me the depths of the struggle. You’re my hero and together we will defeat this so that Pepper like so many others can continue to lead a fulfilling life with her family & friends.
I'm the advocate for an adult with autism, and he never really began to speak till he was 27-- I had been told he never would, but like you, I have never given up. Today, he has about 350 words in his vocabulary, and while he is not what you'd call "conversational," he can absolutely make his feelings and preferences known. I don't know if Pepper will speak one day, but I agree she is well aware of what is happening around her, and she's taking it all in. Thanks for the beautiful piece. And yes, I am sure she knows you love her.