In one house, two brothers with disabilities had opposite pandemic experiences

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It’s 7:00 in the morning and there’s no peace in the De La Torre home. Dana De La Torre wakes up her children, Lincoln and Lonnie Hermosillo, to get ready for school. It’s the same Monday to Friday routine: Get up, change clothes, have breakfast, and turn on the laptops.

Each boy likes to eat something different for breakfast. Lonnie dresses up, and Lincoln complains because he doesn’t want to change out of his pajamas.

“Lonnie, Lincoln, hurry up, school is about to start!” De La Torre shouts from the kitchen. “Did you brush your teeth? Did you turn on your laptops? Where did you leave your backpacks?” If everything is quiet, she worries. “What can these children be doing?” she wonders out loud.

De La Torre picks up the breakfast dishes and cleans the table. In 10 minutes, the kitchen transforms into a school. Computers and pencils replace dishes and the day’s printed homework replaces tablecloths. After virtual classes begin, she takes a minute to put on some makeup and comb her blond hair.

Seven years ago, Dana De la Torre, who was born in Mexico, had to leave her house-cleaning business in Phoenix, Arizona, to care 24/7 for her two youngest children. Lonnie Hermosillo is a 10-year-old with Down syndrome and Lincoln Hermosillo is 8 and has autism. They both have attention deficit hyperactivity disorder. She was going through a complicated divorce and juggling financial and immigration challenges. But she decided her children needed her, body and soul.

“It has been quite a challenge for us; it’s not only one child with special needs. These are two totally different syndromes! They don’t go well together,” said De la Torre.

In a typical year, De La Torre would spend her day running from one place to another seeking better medical and educational options for her children. “We had as many as 600 appointments every year, including therapies, school and doctors,” she said. “600!”

The pandemic changed everyone’s routine. Dana De La Torre and her current husband, Luis De la Torre, became unwillingly and unexpectedly Lonnie and Lincoln’s primary teachers. Now she runs from one bedroom to another, and from the kitchen to the living room.

“Both children keep studying at home because we have no choice. Lonnie has many respiratory problems and has had pneumonia. It would be extremely risky,” said De la Torre of her decision to keep them learning remotely, even after schools reopened.  “Lincoln suffers from asthma.”

The pandemic has been a bigger challenge for many parents of children with disabilities. And the disparity is even greater for students of color, according to a study by McKinsey & Company published in December 2020. Children like Lonnie and Lincoln, who are Latino, who have disabilities, and who live with immigrant parents, could experience a setback in their academic performance averaging six months to a year.

At the same time, the pandemic has empowered some families who have been traditionally marginalized. Research from the University of Kansas, published in May 2021, found that some students with disabilities adapted and were resilient. “We heard from students the ways they were able to adapt, problem-solve, adjust their goals and leverage supports during the pandemic,” wrote Karrie Shogren, director of the KU Center on Developmental Disabilities, one of the study’s co-authors. “If we can embed this in our curriculum, youth can navigate through any challenges they face, even challenges like the pandemic.”

In the United States, 14 percent of the school population, close to 7 million children, is eligible for special education through the Individuals with Disabilities Education Act. Yet the federal government has underfunded special education, and that neglect, added to the pandemic, has been the cause of “children getting lost in the system and later dropping off school,” according to Lauren Katzman, associate professor at Arizona State University and director of the Urban Collaborative Leadership in Special Education.

“I believe that the disparities in special education became more visible during the pandemic,” said Katzman. “We must acknowledge that special education and segregation are intertwined and, therefore, the intersection of race and disability is always important. So, if you are a white student with a disability versus a Latinx or minority student with a disability, in general, it is possible that you will have very different experiences.”

Katzman says that it is imperative that schools help children with disabilities close the gaps that widened this year. “We often talk about a child’s deficit; yet every disability has a strength, and that’s what we should focus on,” she added.

Those strengths are what De La Torre and her husband have tried to emphasize for their children during the pandemic, something that they say the education system in Arizona has not been able to do.

After breakfast, the dining room turns into Lonnie’s classroom. There is a sign on the wall with the daily routine and a blackboard with the numbers from 1 to 10.

Before his classes begin, he opens his Spider Man backpack and takes out a file listing the subjects of the day. He turns on his laptop and waits anxiously for his classmates to say, “Good morning.” While his teacher gets connected, he reads his favorite Peppa Pig book and uses the time to place Dr. Seuss stickers on his notebook.

It’s not even 8 in the morning and Lonnie looks impeccable. His hair is combed carefully. He wears jeans, a pink shirt, an elegant gray tie and a navy-blue jacket.

“I’m very handsome, amá,” he says smiling.

He loves fashion, and dancing. He sings, hums, sways — even when the music is only in his head. In school he is known for his affability and spontaneity. But it’s difficult to transmit these qualities through a screen.

“Early we didn’t praise him and that had a strong effect on him. He likes to be complimented and to be told, ‘Oh, how handsome.’ But when he realized that he wasn’t going anywhere, that the bus wasn’t coming to pick him up, that nobody was flattering him, and that everything was going to take place in front of a computer, it all became very difficult for him,” his mother said.

A few weeks into the pandemic, when De La Torre noticed Lonnie’s mood dip, she decided to change the routine. Every morning before breakfast, she helped him choose his clothes and comb his hair. She told him he looked spectacular. The teachers began to do the same. But the effects of the compliments didn’t last very long.

“He was very irritable; his teacher often tells him that his behavior has been worsening dramatically because he won’t pay attention and refuses to answer questions. It becomes difficult for him to connect with the teacher through the screen,” said De la Torre.

“He has a hard time just sitting looking directly at the screen for a long time; he gets distracted easily with any little sound,” she said.

It’s hard to concentrate when only a wall separates Lonnie and Lincoln at home, so De La Torre and her husband take turns to keep the brothers focused.

“I had to adjust my daily hours because I get home from work early. I try to come as soon as I can and to become the teacher from 10:30 in the morning to 3:00 in the afternoon with both kids,” said Luis De la Torre, the boys’ stepfather. “They are used to a routine; the old routine broke down with the pandemic… theirs and ours.”

Lonnie’s caregivers say that they had to limit the number of therapy sessions on Zoom. He stopped talking and went back to sign language — which to his mother felt like leaping backwards in his development 20 steps.

Lonnie and Lincoln go to different public schools in the same school district, Pendergast, in Phoenix, Arizona; Lonnie’s school focuses on children with Down syndrome, and Lincoln’s offers a program for children with autism.

“We are not very happy with their current schools, but unfortunately for them there are not many options,” De La Torre said. “They have had major setbacks and also because they lack contact with other children [without disabilities], which is very important for their development.”

The Pendergast school district declined to comment because the district cannot share information about individual students, and also declined to discuss special education in general in the district.

In April of this year, Lonnie went back to school for a day for tests that the education authorities require to be in person. He put on a suit and wore cologne and when he saw the driver of his school bus, Mike, he gave him a big hug.

“It has been quite a challenge for us, for it’s not only one child with special needs. These are two totally different syndromes! They don’t go well together.”

Dana De la Torre

Afterwards, he began counting the days until June 21, when he began a summer course in school. It is only for three weeks, but the idea of returning to in-person school made him sing and dance with emotion.

“Lincoln, are you ready to go back to school?” asks his mother.

“No!” says the boy.

“Want to stay home?”

“Yes.”

“But you have to go to school.”

“No, here at home!” he answers, seriously but in good humor.

Lincoln is the exact opposite of his brother. He doesn’t get excited about mornings. He would rather stay in his pajamas or comfortable clothes the entire day and not suffer the textures that torment him.

He wears a loose T-shirt, Bermuda shorts, his hair naturally disheveled. He prefers to go barefoot. His desk is in the living room, where cards with numbers from 1 to 12 are stuck to the wall, next to a box full of school supplies. He works on spelling his name on the keyboard of his laptop, which is labeled with large colored letters, and gets a thrill when he writes it without typos.

He can overhear his brother, and sometimes responds in English or Spanglish. But in general, he stays quietly in his place.

“The more you leave him alone, the happier he is,” said Luis De La Torre.

The 8-year-old has enjoyed the lockdown — and the solitude. His grades have improved, as have his motor skills. And his mother feels that, though he had setbacks in social skills, the pandemic brought them closer.

“For him it has been very positive. He learned to navigate the computer, he is speaking a lot better, has a better understanding. It has been wonderful working individually with him; he has grown a lot,” said De la Torre. “It has been very helpful to him being at home.”

In his free time Lincoln prefers silence. His mother says that sometimes he watches a movie, then watches it again and again. His favorite distraction is Nintendo.

“That child is a genius, a genius with a computer, with games and with everything,” said De La Torre.

But if he leaves that safe and controlled place, Lincoln gets overwhelmed.

“We have had many difficulties because he faces many sensorial issues, among them the texture of his clothes. Now he doesn’t want to change clothes, doesn’t want to wear shoes, doesn’t want to leave the house,” said his stepfather.

So, they stay locked in. But it can be hard to tell the difference between school time and off-school. “They express their anxiety with food, and they eat and eat and eat. They don’t know when to stop. They both think that being at home means it’s time to eat,” said De La Torre.

She also hasn’t been pleased with the education Lincoln has received. “He is not included in regular classes. He is only around other children with autism,” she said.

 “I worry about the children going back to school after being at home and whether they would have … problems like the adults who have been at home for a year.”

Lauren Katzman

When Lincoln had to go to the school for state testing, leaving the house turned into an ordeal.

“He spent three days at school doing the tests, and the three days were like torture sessions for him,” said De La Torre. “He is not very excited to go back; everything is extremely difficult for him: from changing clothes to leaving the house.”

De La Torre explains to Lincoln that it’s time to go back to school. “The district has only one summer program, with only one classroom. I saw it as an opportunity for them to be together as brothers and go to school together, leave the house, be out of their mother’s control and feel independent, that they can be alone,” said De la Torre.

Lincoln listens attentively but doesn’t look her in the eye and instead gives a big hug to his favorite toy, a Curious George stuffed animal. She tells him that at school he will be with his brother Lonnie. But that idea does not appeal to him either.

“I want to stay home,” he begs his mother.

Katzman says school districts should seriously consider allowing more flexible models of education that allow for hybrids of learning at home and remotely for some kids. “We’re living the trauma of a pandemic,” said Katzman. “I worry about the children going back to school after being at home and how the schools would handle that, whether they would have … problems like the adults who have been at home for a year.”*

“Let’s allow some children to work remotely if we see that it works. Let’s be flexible so they can be successful,” she added.

Before the pandemic, De La Torre and her husband felt that they could go out for walks as family without much fuss. Lonnie was happy to get out of the house and Lincoln had learned to get along.

“We were about 80 to 90 percent able to go to places, stores, parks, but we lost all the work we put on all of that. Gone!” said De La Torre.

She fears that now that it’s time to adapt to a new normal, her children will not be ready, especially Lincoln.

The school cycle 2021-2022 will begin on Wednesday, Aug. 4, with in-person classes. De La Torre hopes summer school will help her kids get used to wearing a mask, washing their hands and using antibacterial at school, as they do at home.

“I want school,” says Lonnie, enthusiastically. “No,” Lincoln responds.

“The bus, the bus,” insists Lonnie. Lincoln says no.

The last week of May marked the end of virtual classes for the Hermosillo brothers. The kitchen and the living room remained set up like classrooms through the summer, however.

They returned the computers the school had lent them and use a cell phone, notebooks and favorite books to pass the time. Some days they just sit in the kitchen and spend hours together. Lonnie reads his Peppa Pig book out loud and grunts like a pig, while Lincoln concentrates on his Curious George toy without making any sound or moving his face.  

How will De La Torre feel when her sons go back to school?

“I will miss them,” she says. As challenging as the year was, she got used to having them at home, spoiling them, and educating them. “But I will send them to school for their own good.”

This story about special education was produced by Prensa Arizona and The Hechinger Report, a nonprofit, independent news organization focused on inequality and innovation in education, with the support of a fellowship from the Education Writers Association (EWA). Sign up for Hechinger’s newsletter.

*Clarification: This story has been updated to clarify the meaning of Lauren Katzman’s quote.

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