My four-year-old son, Oscar, is a Covid kid. Born in 2017, he was two and a half when the world went into lockdown. Like the rest of his generation, he has spent a significant part of his formative years away from family, friends, classrooms and other aspects of public life.
Like everyone else at the start of the pandemic, we did our best: we pulled Oscar out of the small, at-home daycare he’d been attending for just three months and sheltered in place. I put my career aside and formed a pod with four other mothers. My husband and I took Oscar and his baby sister to parks, crossing our fingers they wouldn’t come too close to other kids.
We tried to compensate, but the challenge of meeting our children’s social needs and balancing our adult responsibilities was enormous.
I was eager to return to work – and our family needed the income – so when schools reopened for in-person learning this past September, we enrolled Oscar at our local preschool.
From the start, our son exhibited behaviors that his teacher and the administration described as concerning.
He couldn’t write his name. This was the first problem they brought to our attention. His teacher told me he refused to hold a pencil in his hand, so she gave him a marker. Oscar took it and drew all over his face and the desk. The teacher showed me photographs she’d taken with her phone, which she described as “documentation”.
I stood there, feeling a little on display. I wasn’t sure what to do with this information. Oscar was by no means a child I’d describe as obedient, but we got things done and life in our house was happy and harmonious. He knew better than to draw on himself.
When they told me he wouldn’t stand in line or sit at his desk, I thought, of course he won’t. He’s four! Wasn’t it their job to teach him how to do these things?
And the day he stripped naked waiting in line for the bathroom, I was unruffled. “I’m surprised it hasn’t happened earlier,” I said. “My kid hates pants.”
The difficulties persisted, and so we cooperated with eight weeks of behavioral interventions. Sticker charts, rewards and punishments – none of it worked on Oscar.
In the beginning, I wanted to chalk it all up to giftedness. He was a chatty, precocious kid. Maybe he wasn’t getting enough attention in a room of 20 kids. When I asked him why he wouldn’t just do what was being asked of him, he told me it was too boring. He’s under-stimulated, I thought.
Some months later, we got a more accurate portrait of my son. According to an educational evaluator, he moved around the classroom, completely nonverbal, ignoring all redirection. “Overwhelmed” was the word the evaluator used. He was sometimes destructive and distracting to the rest of the class. If an adult tried to redirect him, he became aggressive.
The week before Thanksgiving break, Oscar’s principal called an emergency meeting. Over Zoom, she explained that the school lacked the resources to deal with him, and so they were reducing my son’s time in the program from five to two hours, starting the very next day.
It was the necessary move for the school, but it wasn’t the right intervention for our family – and it had a deleterious effect on Oscar.
After his hours were reduced, getting him into the building every morning became a physical struggle. At the end of his abbreviated day, a different paraprofessional would hand my son off to me silently, and he’d sob quietly to himself the whole way home.
At home, my formerly cheerful kid became increasingly defiant. Normally kind and protective, he started hitting his baby sister. Even though he’d potty trained nearly a year before, he was wetting himself. He started chewing through his toys and clothes. He repeated odd phrases, such as “I like you but I don’t like you” or “it’s red but it’s not red”. He said “I don’t know what’s going to happen” and “I like you, Mommy” at least a hundred times a day.
After a flurry of evaluations, our bright and sensitive child was diagnosed with unspecified anxiety and ADHD, as well as oppositional defiant disorder, a stigmatizing and yet questionable diagnosis, particularly for a child as young as my son. Our school district’s committee on preschool education – administrators, educators and social workers employed by the district who have never met Oscar – said he belonged in a small therapeutic group setting that would support his social emotional development.
According to the committee responsible for finding him a program, public options were full.
I was on my own.
My husband and I are not rich, but we don’t struggle financially like my parents did. We’re both very educated and I have several advanced degrees, including my master’s degree in childhood education. I spent three years working as an elementary school teacher, teaching art and creative writing to children. Before that, I worked as a research assistant studying the Touchpoints method, a professional curriculum focused on understanding the development of children younger than three years old.
And yet.
Even with my resources and experience, navigating the special education system has been extraordinarily difficult. Every teacher conference, every evaluation my son endured eroded my confidence until I wholly doubted myself and my core beliefs. I felt incompetent, like I couldn’t take care of my own child.
In February, the White House released a fact sheet reminding schools of their obligation to provide appropriate evaluations and services to students with disabilities regardless of the challenges they face as a consequence of the pandemic. But children with special needs continue to languish without the services they are entitled to by law.
I learned from other parents that Oscar is legally entitled to services, but the district told me it was unlikely that they could find my child a setting this year, and suggested I enroll him in a karate class to “meet his social and emotional needs”.
I had to take matters into my own hands, so I made an Excel document of every public and private program within a 40-mile radius and emailed each of them to see if they had room. I insisted the district have Oscar evaluated by an occupational therapist, who discovered that in addition his diagnosis, he had sensory processing disorder and fine motor delays.
I also paid thousands of dollars for a private evaluator to give me a more accurate diagnosis. She confirmed his initial diagnosis of ADHD and anxiety. She also diagnosed him with social pragmatic communication disorder, which is a persistent difficulty with verbal and nonverbal communication in social situations that cannot be explained by low cognitive ability. SPCD is a feature of autism, but he was not found to be autistic, nor did this psychiatrist diagnose him as having ODD but, rather, she agreed with my intuition that his defiance is a response to his anxiety.
I did all this around 4.30am when one of my children first woke me up, in the evening after the kids’ bedtime routine, and sometimes in the middle of the night.
Even with the support of my husband, I felt utterly alone.
I was recently reminded of a news story I heard when I was younger, about a mother strapping her children into their car seats and launching the family vehicle into a watery grave. The exact details are unimportant, because many similar tragedies exist. They capture our imagination because the idea of a mother doing something so senseless is horrifying.
Until recently, I also found such acts utterly incomprehensible. And then I lived through the last year of my life, and on some level it made sense. I now see how a mother struggling with her mental health could break under the pressure of society’s message that no one else can take care of her children, and that no one can keep them safe but her.
For nine months, I dedicated my life to the care of my special-needs son. Instead of earning an income or maintaining my career or cleaning my house or caring for my daughter or connecting with my husband or caring for myself, I fought for the care he needed.
I have felt so worried, hopeless and terrified that I, myself, became suicidal.
The impact of lockdown is not completely known, but researchers can predict that measures taken to curb the spread of the virus created certain risk factors (economic insecurity, parental depression) while depriving children of protective factors (relationships with friends and family, engagement with their community). Children at risk of developmental delays and differences are even more likely to have been negatively affected.
I was made to feel that Oscar was anomalous until I spoke with other parents and teachers. One second grade teacher I spoke to for an article on teacher burnout described her class as “feral”. She said at the start of the year they were all biting each other, rolling round. “Forget academics,” she said. Halfway through the school year, “we’re still just teaching the basics: how to sit, listen, and ask questions.”
In March, my husband and I went to visit a public therapeutic program from the district’s list. It was not like any classroom I’d ever been in. There were no signs of learning. There were no books. No art. No toys. It looked more like a kennel than a kindergarten.
These facilities are the most restrictive environment, and designed for children who are severely disabled. His peer group would have been exclusively nonverbal children with learning disabilities. They are an ill fit for a high-verbal, high-energy kid like my son.
For better or worse, there wasn’t a spot anyway.
When we stopped sending him to school, Oscar’s behavior changed almost immediately. He stopped chewing stuff and wetting himself and hitting his sister. So long as he’s in my care, he is as agreeable and disciplined as you’d expect from a four-year-old.
Of course, he needs to learn how to be around other children and adults, and away from Mommy. Teaching him how to be a part of the world without me is the one job I can’t do.
That is why, after months of waiting, my husband and I decided to enroll Oscar in a private school for kids with special needs. The one available spot in a program within a 40-minute radius just happened to be an Oscar paradise: 200 acres of untouched forest, biodynamic gardens and bubbling streams where my son will float homemade boats, climb apple trees and bake bread.
The cost of the program is nearly $70,000 per year, which is more than 80% of our family’s income. We’ve hired a lawyer and intend to sue the district for reimbursement – we are optimistic we will win.
Beyond negotiating with his new friends and learning to sit on his bottom in anticipation of a snack, little else is being asked of him. For kids like Oscar, this is demanding enough. Even in a smaller classroom, Oscar calls a lot of attention to himself. He struggles to get along with the group and take direction from adults. He’s impulsive, and elopement is a concern – meaning that when he’s feeling bored, anxious or fearful, he’ll simply run away – so they’ve assigned him a one-on-one (this accommodation represents $30,000 of his tuition bill).
On his second day of school, they celebrated the Dandelion festival, the first day of spring when the cows were let out of the barn. Oscar had a meltdown on the way to the pastures because he wanted to go back inside. Holed up for so much of his lifetime, he is only now learning to play and be himself in a completely new and unfamiliar world.
Beyond the program’s cost there is the lingering pain and trauma. He has started opening up about his experiences at the old school, and some of the information I am receiving adds to my anger towards our local school district. He told his new teacher that he used to go to a different school but that “it wasn’t the right school for me, because I couldn’t write my name”. Hearing this really broke my heart.
There is joy, too. We are now a part of a new community dedicated to supporting kids like Oscar, as well as their families. There are fewer meltdowns during the school day, and he participates more than not. He appears calmer and more confident in the morning at drop-off and when I pick him up, which makes me feel considerably calmer and more confident, too.
Price tag aside, I’m finally relieved of the enormous burden of having to do it all on our own – but it shouldn’t have been this way.
