Utah families with medical risks say they are splitting up, changing schools and risking loved ones’ lives for their kids’ education now that schools can’t require masks

Paxton Hadden’s tiny voice rings out from behind a phone screen he’s seen too much of in the past 18 months.

“They broke the clock!” he squeals to the toys arrayed around him, captivated by a cartoon of Hickory Dickory Dock. It’s Paxton’s favorite, his mother, Alisha, explains, before she is interrupted by a rapid succession of smooching sounds.

“Aww, kisses!” Alisha says, relishing the burst of affection from a child whose four short years have been beset by an array of chronic lung conditions and hospital stays.

And that was before the coronavirus pandemic forced Paxton and his 6-year-old brother, Graycen, into almost total isolation — right when the two boys, both on the autism spectrum, most needed stability, social interaction and developmental services.

A few months ago, Alisha had hoped declining cases of COVID-19 in Utah would mean a chance for her kids to catch up in person in the coming school year. Instead, state lawmakers passed a law prohibiting schools from requiring the masks that would help keep Paxton and his brother protected.

Now, with mutations of the virus driving cases up again, the Centers for Disease Control and Prevention and other experts recommend mask use inside schools for all teachers, staff and students, regardless of vaccination status. But the state ban on mandates remains in place, and draft guidelines for schools from the Utah Department of Health recommend masks only for unvaccinated students or students exposed to the virus.

So Graycen will have to change school districts to one with online classes. Paxton will not get even the online preschool and therapy he received last year, as it’s no longer being offered virtually. And Alisha’s mother — a third grade teacher — will have to move out of the family’s West Jordan home to protect Paxton.

Alisha is just one of many Utah parents struggling to navigate a school year that will put unvaccinated, unmasked kids together for hours each day, while they try to protect family members whose medical conditions mean they could be killed by a child who brings home COVID-19.

“The biggest thing I’ve learned over the last year and a half — and this is going to sound really harsh,” Alisha Hadden said, “is that the majority of people don’t care if my kids live or die.”

[Read more: With mask requirements forbidden, how are Utah schools planning to cope with the coronavirus?]

At-risk families face a ‘hard choice’

Alisha Hadden’s frustration is echoed by many Utah parents who are dismayed that legislators this year banned mask requirements in schools — even in elementary schools, where nearly all students are too young to be vaccinated.

Other parents, who opposed masks in schools, held protests last spring before the ban took effect. Generally, health experts have said younger school-age children with no complicating medical conditions face fewer risks from the coronavirus; school outbreaks in Utah last year were more common in high schools than in elementary schools.

But mask-wearing was generally the norm in Utah schools last year, and variants had not developed. In responses to an online query by The Salt Lake Tribune, nearly 200 parents reported being concerned that mask requirements are now forbidden even though many students are ineligible for vaccines. Twenty said they were not concerned schools could not require masks, and 10 of those said they were worried masks would eventually be mandated again.

The most urgent worries came from parents whose households include those who are either immunocompromised or at risk of serious illness should the virus spread to them.

“When we consider sending our kids back into schools where none of the kids are vaccinated, it feels once again like we’re just in a no-win situation,” said Laurieann Thorpe, whose husband, David, recently underwent a major organ transplant.

The medications he’s had to take since then make it unlikely that his coronavirus vaccine triggered a full protective response in his immune system, she said, and the transplant itself leaves him vulnerable to serious illness from COVID-19. David’s own cousin survived a similar transplant, only to die from the coronavirus.

“We have talked to the kids a lot about what it would be like to get COVID and bring it home to dad,” Laurieann Thorpe said in an interview. “We’ve had to walk through those scenarios with them.”

“It’s terrifying as a parent to have to make this choice,” agreed Charlee Parkinson, who said her son likely will attend his Provo second grade class in person, despite having virus-induced asthma that can leave him ill for weeks if he gets so much as a cold.

“It’s hard on them either way,” she said. “The isolation’s hard, but getting the virus and getting hospitalized is much harder. It’s a hard choice.”

[Read more: Here are the Utah districts where your child can enroll in online school — even if you don’t live there]

‘The decisions we’re having to make’

For members of Alisha Hadden’s family, the decisions have compounded, one after another, since they learned masks would not be required in schools. Graycen spent most of kindergarten in online classes through the autism-focused Spectrum Academy in Pleasant Grove — definitely suboptimal, since most of his special education goals dealt with social rather than academic skills, Alisha said.

But Paxton’s doctors had advised the whole family to hunker down for most of the year; Paxton has lung disease, apnea, asthma and respiratory problems tied to gastroesophageal reflux disease. His lips and fingers occasionally turn blue, he undergoes daily breathing treatments and ends up in the hospital almost every year, Alisha said. That meant online school for Graycen, and online preschool and speech therapy for Paxton.

Meanwhile, Alisha’s mother, Jodi Miller-Hadden, withdrew from her teaching job in the Granite School District for all of last year — both because Alisha and the boys live with her, and because she’d recently undergone radiation for breast cancer, which left extensive scarring in her chest. Her doctors warned her that COVID-19 could be fatal for her, too, Miller-Hadden said.

Now fully vaccinated, Miller-Hadden said she can’t afford to take another year off work, even though she still worries about her own health as she returns to her classroom in West Valley City — especially as the virus’s delta variant makes breakthrough cases among vaccinated Utahns more common.

But potentially exposing her unvaccinated grandson to the coronavirus is a deal breaker, she said.

“Now that they’ve taken the mask mandates off,” Miller-Hadden said, ”I’m walking into a third grade classroom with up to 30 children with no masks, risking the lives of my family.”

She plans to move out of her family’s home and bunk up with a fellow teacher who has a spare room.

“These are the decisions we’re having to make,” Miller-Hadden said, “not to live at your own house in order to be able to work.”

‘It touches the whole household’

The Thorpes plan to send 8-year-old Angela and 10-year-old D.J. back to in-person classes at their West Valley City school, hoping to make up some lost ground after online school last year taxed the kids’ educational progress as well as their morale, Laurieann Thorpe said. Her husband will be at risk, she said, but agrees the kids’ isolation can’t go on forever.

“I was OK with prioritizing his health, especially the year he received the transplant,” she said. “But it’s time for my kids to have what they need, too. I think they had to sacrifice so much last year. We’re going to have to take our chances. My hope is that maybe my husband can get a booster that would build the chance for him to have antibodies.”

Dr. Victoria Wilkins knows well the tension between young kids’ educational needs and at-risk family members’ needs for protection. The pediatrician for Primary Children’s Hospital has four children under age 11 but also cares for her 69-year-old mother, whose metastatic cancer has weakened her immune system.

Like Alisha Hadden, Wilkins has a disabled child who needs in-person school services. Now Wilkins is trying to decide whether to isolate her mother from her grandkids, right when she is ill and most needs to keep up her morale.

“It touches the whole household, the whole family,” Wilkins said. “It’s anyone in that family bubble. It affects so much broader than that one individual.”

As a mother and a doctor, she said, she’s frustrated and disheartened that the Legislature has stopped schools from requiring masks. The American Academy of Pediatrics is recommending that all kids should be masked in schools. That’s the safest way, Wilkins said, to have in-person learning where students from all types of home situations can attend.

Without universal masking at school, Dr. Adam Hersh, who specializes in pediatric infectious diseases at University of Utah Health, said he’s more concerned with students attending school this fall than he was last year, when schools were under a mask mandate.

Deprived of that protection, Wilkins said, families should factor in the risks of the household member most threatened by COVID-19 as well as the grades and socialization of the kids.

“It’s an individual decision and individual risk tolerance,” she added. “There are many families like mine that are agonizing about that choice.”

For those who aren’t vaccinated or who are immunocompromised, Hersh said, “it may be a very reasonable decision to say we’re going to hold off on attending school right now because of the risk.”

Hersh added: “I’m very concerned about vulnerability to infection and outbreaks, particularly with those most at risk to serious complications.”

‘Have some compassion’

Some schools — like Spectrum Academy, where Graycen Hadden attended kindergarten, will offer only in-person lessons with no masks required. Now Alisha is in the process of transferring him to the Jordan School District’s online classes — even though, she said, he likely will be heartbroken after bonding with his teachers and classmates at Spectrum during the two months he was able to join them while coronavirus cases were low in the spring.

“Honestly,” Alisha said, “I’m dreading telling him.”

Spectrum Academy Executive Director Jaime Christensen said the school made the decision to offer only in-person instruction for the coming year because of its unique student body. The academy found that online classes during the pandemic didn’t work as well, she said, and many fell behind.

“We have seen a decrease of student progress in academics and social skills,” she added. “Additionally, mental health referrals took a sharp increase.”

It has also been difficult for teachers to instruct both online and in person, Christensen said, leading to issues with retention.

While she understands that in-person learning will have some risks, she said, the school will encourage students to wear masks and social distance where possible.

But while Graycen can transfer to the Jordan district to take first grade classes online, the district is discontinuing the online preschool Paxton enrolled in last year, which provided him with one-on-one teacher time and speech therapy — things he’ll now have to do without, Alisha said.

So rather than getting back to the services, routine and community they need, Alisha’s two autistic children will instead lose their schools and their grandmother at the same time.

“I would like to think if people understood how many precautions high-risk families have had to take in COVID, they would have some compassion and see their own inconvenience as just that,” Alisha said. “But there were too many people who saw slight inconveniences as not worth it to literally save lives. Their honest opinion is: If my kids are this fragile, they shouldn’t be a part of society.”

Utahns’ perspectives on masking have become so “locked in,” Laurieann Thorpe said, that she worries her two younger children will be mistreated when they show up to school with masks.

“We’re already seeing with our kids just a bit of a stigma,” she said. “Playing in the neighborhood with friends, they’re the only ones wearing masks. They understand it’s for Dad, but it’s really hard to be the only one.”

Angela Thorpe said other kids ask her enough about masking that “it kind of makes me feel embarrassed” — but, she said, “I’m going to wear my mask to keep my dad safe because I don’t want him to die and I love him.”

There’s only so much safety to be gained by the lone mask-wearer in a room full of uncovered and unvaccinated kids; health officials have long said masks contain the aerosolized virus that an infected person may spread far more than they protect the mask-wearer from other, unmasked people.

“We try not to think about that,” Laurieann Thorpe acknowledged. “We can’t control what other folks are doing. We are just going to have to rely on the kindness of strangers and take the chance.”

But based on what she’s seen in stores, at church and in her own neighborhood — no masks on any children, except some cousins who put them on in solidarity with her family — Laurieann Thorpe said she’s not sure there will be much kindness to be found. She said she tried to describe her family’s risk in a post on Utah Sen. Mitt Romney’s Facebook page.

“I had someone say to me, ‘Let them die. Let the immunocompromised people die,’” she recounted. At her children’s school, she said, “I think everyone is going to be maskless except my kiddos.”

Parkinson said that’s what she found in her son’s Provo school when she sent him to class in the spring, while cases were low. In a performance during the last day of school, Bodhi was the only one with a mask on, she said.

“My son is very cautious. He knows how sick he gets when he gets any sort of illness, so he wants to wear the mask,” she said. “But we’re the only family I know of who even pays attention to the masks at all. The politicizing of this mask thing has now trickled down to the children. He doesn’t cope well with that kind of stuff. Now he doesn’t want to go play outside; he’s been labeled as different than the other kids.”

She said she expects bullying over the mask will be “inevitable” when Bodhi returns to school — something more than 60% of respondents to The Tribune’s questionnaire specifically identified as a worry for their children. More than 20 respondents said their kids already had been singled out or mistreated because they wore masks. Four parents said they were worried kids would be bullied for not wearing masks.

Laurieann Thorpe said she no longer believes most Utahns are capable of empathizing with their sick and vulnerable neighbors.

“Even when people know about the risks for my husband, there is only judgment and no compassion,” Thorpe wrote in her questionnaire response. “I admit I have lost my faith in humanity.”