My Son Had Been Diagnosed with Long Covid.
The School Called It a Behavior Problem.
Here's what I did about it — and what every Massachusetts parent needs to know.
It was December 2021. We had just gotten home from a basketball game. Jack wasn't feeling well even before we left, and by the time we got home, he said his throat felt like razor blades.
The next day: high fever. The doctor confirmed it. Positive for COVID. Omicron variant.
For about three days, it seemed like a bad case of strep. Rough, but manageable. And then by day five, he started sleeping 20 hours a day.
"Am I dying?"
That's what my son asked me. And I didn't have an answer.
We did everything you're supposed to do. Pediatrician. Hospital. Labs. Specialists. Everything kept coming back "normal." Which is comforting, unless your child is sleeping 20 hours a day and disappearing right in front of you.
Eventually, we got the diagnosis from his pediatrician, “I think we are dealing with Long COVID”. He referred Jack to the Long Covid Clinic at Boston Children's Hospital. They confirmed Jack’s diagnosis. It was months of trips into Boston, and for Jack, even the ride in was enough to wipe him out. He’d fall asleep in the car, and by the time we got to appointments, he could barely keep his head up. He was already exhausted. He saw pulmonology, cardiology, and sleep specialists. They had him wear a device because they didn’t believe he was sleeping for 20 hours straight. Then they confirmed: yes. He actually was. It was a six-month wait just to see the neurologist.
There is no cure for Long COVID. You treat the symptoms. You pace. You wait. You hope.
Jack Loved School. The School Didn't Love Him Back.
Here's what people don't understand about kids with chronic illness: they don't want to miss school. Jack loved his teachers. He loved his friends. He was a good student, A's, B's, maybe a C. He wanted to be there.
But his body had other plans.
In middle school, the teachers fought for him. They pushed for a medical IEP, but the administration said no. We eventually put him on home hospital. They did not provide a tutor, which was against the law. Jack couldn’t do much, so we were okay with it. He still managed to make honors. Jack started 7th grade with home hospital, and he had a fabulous tutor who saw everything directly and understood him.
The pattern became predictable: he'd try to go back. He'd catch something — a cold, the flu, strep — and he'd be down for months. Every time.
Then high school started. He was so excited. Gung-ho. Couldn't wait.
He needed rest days. Sometimes, once a week. Then more. His body couldn't handle it. The same pattern recurred: he caught the flu, hand, foot, and mouth, and strep. We had a letter from his neurologist explicitly stating his absences were medically excused and that his illness was recognized under the ADA.
None of it mattered.
"The Scientist in Me Would Like to See What Happens."
That's what the assistant principal said to me.
Jack was being given detention. For tardiness. Because waking a child with Long COVID, a child whose illness directly affects his sleep, was like trying to wake a sleeping bear from mid-hibernation. We would have to start the process at 5:30 in the morning to try to get him out the door by 7:30am. And even then, he'd wake up with gastrointestinal symptoms. Some days, he was 30 minutes late. Some days an hour. On good days, it would only be a few minutes. It depended on how intense the symptoms were that morning. Even if it was a few minutes, the “hall monitor” would be there recording him tardy. (Pretty sure the hall monitor was training for the Olympic record in speed clipboard usage.)
I told the assistant principal that Jack would not be attending detention for two reasons: 1. They have a letter from his neurologist excusing his tardies and absences, and 2. To stay after school goes against his neurologist's advice. Her response was that "the scientist in her" wanted to see if detention would work.
Pause.
Because apparently my son’s medical condition was now an experiment.
When I mentioned the neurologist's letter, she told me they don’t accept that and needed a new letter for every single absence. I said,
“It is not behavioral. It is documented. It is medical. And according to your own school committee policy book, that neurologist’s letter is exactly what you need.”
I said I was not going back to the neurologist every time my son had a bad morning. She said she would discuss it with the principal.
Then we had Jack’s annual 504 meeting. I thought this would be the opportunity we needed to get on the same page.
Foreshadowing: We didn’t.
When we discussed a flexible schedule to help Jack with pacing, the principal replied, “I can’t change my bell schedule.” I tried to be respectful, “You wouldn’t need to change your bell schedule; you just give him a different schedule in Aspen.”
He then challenged us that Jack was playing basketball and told us how he gets winded running up the court.
We explained that his coach has been with him since the beginning, and he only puts Jack in for short stints. It’s a way of keeping him connected to something he loves that has been critical to his mental health.
He then started rambling about MIAA rules, and I stopped him. I said, “We have already talked to the coach, and everyone just wants him to have a place on the team, even if it’s a team manager or score keeper. The point is keeping him connected.”
It was clear that he wasn’t getting it.
At one point, the principal asked, “Have you tried a nutritionist?”
And I remember thinking…
No, just a neurologist, pediatrician, Boston Children’s specialists, cardiology, pulmonology, gastroenterology, physical therapy, and occupational therapy.
But sure. Let’s start with nutrition. Maybe next we’ll try crystals, essential oils, or interpretive dance.
We asked about adding flexibility in attendance as his neurologist requested in the letter. They told us it would be illegal to include attendance flexibility in a 504 plan. That didn’t seem accurate. It’s not. But that was the level of understanding we were working with.
I could feel the tension in the room. My husband was doing everything he could to stay composed—which, given the conversation, was no small feat.
The meeting accomplished nothing.
Then the grades came out.
Jack had A's, B's, and a C in biology. The administrators went into the system and changed the C to an F. They sent an email — directly to Jack, not to his parents, without ever requesting a meeting — with the subject line:
Attendance Failure.
That was sent directly to a 14-year-old boy battling a chronic illness that had completely changed his life. He no longer played baseball or the clarinet, and the boy who was once great at automaticity in math was now asking me, “Mom, what is 7 + 3?” The email told him he could earn his grade back if he maintained a 97% attendance rate the following semester. Because apparently, the path out of a neurological condition is…perfect attendance.
Jack looked at me and said, "Why would I even try? They're setting me up to fail."
I included the Director of Student Services. I included the Superintendent. Neither responded.
The principal started pulling Jack’s attendance records going back to kindergarten. He was attempting to build a case that this was behavioral.
Kindergarten felt like a strong place to start.
And then he called the neurologist’s office. I don’t know what was said, but they were very upset and reported that he was condescending and rude. That tracked.
That was the moment we were done. He was creating friction with the medical team that had been supporting our family.
We pulled Jack from public school. He started online school.
And Then My Son Said Something That Changed Everything.
After we decided to pull him, I asked Jack, "Are you okay?"
He said, "Mom, I have my family. I have my doctors. I have my friends. I'm okay.“
And then he asked me a question I haven't stopped thinking about since.
“What happens to the kids who don’t have that?”
What happens to the kids who don’t have a support system? Or whose parents don’t know they can push back?
Who are struggling..and then receive an email with the subject line: Attendance Failure?
I kept thinking about a child already battling depression…already overwhelmed by the thought of walking into school…
And this is what they get?
Not support. Not a plan.
Just a label.
That was the moment it stopped being just about my son.
That question is why I decided to do this work.
We Filed a DESE Complaint. We Won.
A PRS complaint (Problem Resolution System) is a formal legal complaint filed directly with the Massachusetts Department of Elementary and Secondary Education (DESE). Not your principal. Not your superintendent. The state agency that oversees every public school in Massachusetts.
I filed it myself. I documented everything: every email, every meeting, every refusal, every policy violation. I pulled Jack's entire academic record. I built the case. I controlled the narrative.
The school's response was, to put it charitably, poorly organized. Honestly, if they’d turned in this paperwork to a teacher, it would have come back with a note: “See me after class.” It was clear that either the principal hadn't given the Director of Student Services the full picture, or the full picture wasn't something they wanted in writing.
DESE found in our favor.
Not a misunderstanding.
Not a communication issue.
A violation.
The corrective action plan required the district to:
• Reconvene Jack's 504 meeting, whether he returned to school or not, and create a proper accommodation plan.
• Update their district-wide 504 policies.
• Provide mandatory 504 training to all administrators in the district, or as we referred to it, “the PowerPoint of Shame.”
At the subsequent meeting that DESE directed, the assistant principal, the same one who wanted to "observe" how Jack's attendance would change with detention, said, toward the end of the meeting:
“Maybe public school just isn’t for Jack.”
That comment told me everything I needed to know about whether the culture had actually changed. And it told me everything I needed to know about how much work still needs to be done.
What I Need You To Know
If you are reading this at midnight because your child hasn't been to school in three weeks and the district just sent you a letter threatening to refer you to DCF, I need you to hear this:
• You are not failing your child. The system is failing you.
• Attendance is not a behavior problem. It is a signal. Something medical. Something emotional. Something developmental. Your job, and the school's legal obligation, is to find out what it is.
• Schools have legal obligations they routinely ignore. Child Find. FAPE. Section 504. IDEA. These are not suggestions. They are federal laws.
• You do not have to bend your child to fit the system. The system is legally required to support your child.
• You are never stuck. Every choice can be changed. Every situation can be navigated.
I know because I navigated it. Without an attorney. With research, documentation, and determination. And we won.
Where to Start
If you're in this right now, start by documenting. Write down every absence, every morning, every symptom, every conversation with the school. Note the date, the time, and who said what. That documentation becomes your evidence.
If your child has a medical diagnosis, get a letter from their provider that explicitly states the condition, how it affects attendance, and that it falls under the ADA or IDEA. Keep a copy. Send it certified mail.
If the school refuses to respond or continues to treat absence as a behavioral issue after you've provided medical documentation, you have options. You can request a 504 or an IEP evaluation. You can file for home hospital services. And if the district continues to violate your child's rights, you can file a PRS complaint with DESE.
You don’t have to do this alone.
This is the work I do now, helping families understand what might really be going on, and what they can do next.
In your corner,
Kelli