Thomas snuggles under the covers with me at bedtime, warm and wiggly.
It is our third tour through the “Harry Potter” series, and tonight is like so many others. I pause and ask him to read a few pages of the Dr. Seuss classic “Hop on Pop” before I continue recounting the adventures of Harry, Ron and Hermione.
And like so many times, he refuses. Finally he fumbles through a couple pages, over passages like “Pup Cup. Pup in Cup,” with copious praise. Then he is done.
It all seemed very normal that night last fall. But this was the beginning of third grade, and the Seuss book is sold as “The Simplest Seuss for Youngest Use.”
Thomas has a learning disability, ADHD and epilepsy. And this is hard — harder than I thought possible.
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Third grade is considered a crucial reading year. Children who can’t read well by the end of this year are more likely to become dropouts. All sorts of bad things are possible, the research shows.
Yet here we are.
I know our situation is extreme. But I also know testing suggests we aren’t alone. The pandemic was tough for these youngest of kids.
In kindergarten when the pandemic started, their schooling was disrupted at a crucial time. And because of their age, virtual learning was particularly hard for them. Kids like Thomas who needed something extra had an especially hard time.
Thomas struggled to learn to talk, so much so that he met with a speech therapist as a preschooler.
I still remember the screening evaluation. The evaluator was giggling. Later she told me that she showed him a picture of a chair. Asked what it was, he responded, “Time out.” Other pictures were entirely mysterious.
I didn’t know it then, but speech delays are often a sign of a future reading problem. With extra help, though, he started talking.
Thomas, the red-headed youngest of three, was clearly bright, obsessed with the Titanic and shipwrecks in general. Once he covered the floor with ice cubes and declared the melting puddles were icebergs.
Still, there were signs. He was picking up letters a little slower than his classmates in kindergarten, and he was so, so wiggly.
We were worried enough that we asked his teacher to fill out a screening form for attention-deficit/hyperactivity disorder. Forgetful: Check. Struggles to sustain attention: Check. While he was inquisitive, the teacher added in her own handwriting, visual learning was a struggle.
But then the pandemic hit. Fifteen days after the teacher handed me the form, the governor of Kansas became the first in the country to shut down schools for the rest of the academic year. My middle child, then 12, had very little schoolwork and was enlisted to homeschool Thomas.
The screening form was forgotten.
___
In my phone, there is still a notes file where I mapped out how we would make it all work. The daily schedule I envisioned included things like reading/story time, recess, gardening and even cooking class. Each was assigned half-hour intervals.
Who did I think I was? Who did I think we were?
I snapped a picture of a desk neatly set up. Hours later, the desk was toppled. That pretty much says it all.
By April, things got worse. Thomas had a seizure, his first.
I initially thought nothing of him lying face-down on the floor, stepping over him as I went to do laundry. My husband was the one to roll him over, to notice him drooling and his left arm moving rhythmically. His eyes were open, but he wasn’t there.
The ambulance arrived minutes later. He was unconscious. The crew suggested we drive him to the hospital, that there could be COVID in the ambulance.
But we didn’t leave for an hour and a half. We were scared, and I watched YouTube videos of puppies on my phone while Thomas lay beside me, unconscious, until the pediatrician’s office called back. A nurse, then a doctor instructed us that this was urgent, that we needed to go.
The delay did no harm; there isn’t much that can be done after a seizure. The emergency room doctor looked him over and sent us home.
Days later, when we met with a neurologist for the first time, Thomas still had a bruise on his forehead from toppling face forward. The doctor scheduled tests and prescribed medication for use if Thomas had a seizure that lasted five minutes or longer.
We might never need it, the neurologist said. But we had to use it just two weeks later when Thomas had a second, frightening seizure hours before an MRI and an EEG to measure his brain waves. Later that day, he was diagnosed with epilepsy, cause unknown.
We were shaken. My parents drove to our house, stood in our yard and said they were sorry. But it was early in the pandemic and we didn’t even hug, too fearful we would expose each other to the virus.
That weekend, I insisted we buy kayaks. Curbside pickup was the only option, so I saw the boats for the first time when the sporting goods staff hauled them to the curb. For 10 of the next 11 days, I floated around on a local lake with a child or two in tow.
It was the only thing that eased the gnawing anxiety.
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We soon learned that anti-seizure medications are a bit of a science experiment, and the first one was a mess. Although popular, it has a side effect of aggression in some kids. Thomas was among them.
My husband and I tried to work. We tried to do school. But there were daily tantrums. Cellphone screens were smashed, along with a tablet. My daughter threatened to quit watching Thomas while we worked. She demanded raises. Who could blame her? And why the heck were we asking this of her, anyway?
Women were quitting their jobs in droves, and I understood why. It all seemed impossible. At one point, I called his kindergarten teacher. We can’t do school right now, I told her. Things are too much of a mess. He wouldn’t sit through the virtual lessons. She said she understood and told me not to worry.
We switched medications and it helped, but there was still his behavior. He was wild.
When the day camp he was supposed to attend that summer was canceled, my mother started watching him. As a recently retired teacher, she was eager to play academic catch-up with him so he would be ready for first grade.
“We’ll work on sight words,” she told me. I responded with: “Mom, I don’t think he knows his letters.” She was dubious.
But a couple weeks later, she approached me, taken aback: “Thomas,” she told me, “doesn’t know his letters.”
He resisted efforts to learn them, squirming away from flashcards or decodable books. But my mother, persistent as always, bought an online curriculum and plowed through it with him several days a week.
By midsummer, we had our first follow-up with the neurologist. Thomas was a whirling mass of energy, trying to turn the light off in the exam room and climb onto a rolling table designed to hold the doctor’s laptop. Halfway through the appointment, I opened the door and shoved the table into the hallway.
More testing added dyslexia and ADHD diagnoses. The doctors said we should request special education services and armed me with a pile of test results and letters.
___
Our school district was offering a virtual and in-person option that fall. With Thomas’ new string of diagnoses, my mother offered to oversee virtual school. As it began, I dropped him off with her each day.
I recall watching him log on with his virtual classmates one morning. The teacher was helping them download the apps they would use, but many of his classmates couldn’t read. To help them, she announced the first letter of the app, tracing its shape in the air. Some kids had parents sitting beside them; other first graders were on their own, tearful and frustrated. But they trudged on, and most were catching on.
And Thomas: Even with my mother sitting right by his side, he was struggling.
She had to modify almost every assignment. Instead of writing sentences, she wrote them and had him copy or trace over the letters. We met virtually to discuss screening him for special education services.
In late September, he met for the first time with the reading specialist. Within minutes, his head dropped, he got confused and struggled to speak. She rushed him to the office, where my husband was waiting, suspecting a seizure. His neurologist adjusted his meds repeatedly; we did two more EEGs. We were unable to sort out exactly what was happening. Still, I was grateful that he wasn’t having big scary seizures.
The special education team initially decided he wasn’t low enough to qualify for services. But when he continued to struggle so much that one teacher mentioned having him repeat first grade, we asked them to take another look.
Thomas returned to an in-person class for the final weeks of first grade. Just before classes dismissed, we learned he qualified for special education. He would get more small group and one-on-one help.
We sent him to a summer program designed for kids who had struggled, but he still found it a challenge. He refused to get out of the car each morning until we moved him down to the program for kids one year younger. That’s when my in-laws offered to send him to a private school for kids with dyslexia. Classes are capped at 10 students.
It was what he needed. But his progress is slow and uneven. He learns things, but sometimes they don’t seem to stick.
One night, the school offered an event for parents designed to simulate what it feels like to have a learning disability. Parents were assigned impossible tasks — reading texts with missing words, reading sentences printed backwards. All the while, someone walked around with a speaker making school announcements.
I wanted to quit. I guess I understood why he often complained of stomach aches or headaches when he was asked to read.
___
Now, in third grade, he is nowhere near reading at grade level. I told the teacher that at the end of the year, I would like him to be reading like a first grader. She thinks it is doable. And he has made progress, now fighting his way through harder passages as the year progresses.
Maybe we will get there — wherever “there” is. Maybe it is all clicking. The journey is a mix of frustration and laughter.
Once, he informed a bemused librarian that he needs books about dinosaurs, along with ancient Greece and nuclear energy. Chapter books, she asked? I sighed. He often walks up to strangers and demands to know their favorite dinosaur. I’ve come to believe it’s a brilliant question. People who answer T. Rex seem fundamentally different than those who prefer a herbivore like a brachiosaurus.
Another time, Thomas interrogated a crew fixing a power outage, discussing wind turbines and batteries with the indulgent supervisor, a father himself. As Thomas walked home, he turned to my husband and told him: “Don’t ever underestimate the power of my brain.”
Thomas, we will try.
