It was exactly what she feared.
Stephanie Coles’ 9-year-old son, Max, tested positive for COVID-19 after three weeks of face-to-face classes in Edmond Public Schools.
Coles had dreaded this for months, ever since her younger son, Alex, 3, was diagnosed with autism in June.
In the weeks leading up to the new school year, the risks and what-ifs circled in Coles’ mind.
Alex is facing greater risk of serious COVID-19 illness as a child with autism, Coles said. But, he desperately needs to be in a special education classroom.
“This year is his best possible opportunity,” Coles said. “This is his most important year to have a full life. If he doesn’t get school this year, if he isn’t in the exact place he needs to be … we’ll never know how far he could have gone.”
Alex is building communication and interpersonal skills in Edmond’s pre-K program for children with developmental delays. It’s critical that he learns how to interact with others at an early age, or he could struggle with it for the rest of his life, his mother said.
Alex can only do that if COVID-19 doesn’t force him to stay home or cause his school to close. With his brother testing positive, he’ll miss 10 days of class and therapy.
With a wildly spreading delta variant and inconsistent mask wearing in her community, Coles said she’s often felt like her son is being left behind.
Families of other children with special needs shared similar frustrations.
Some say they feel forgotten by state and school leaders and disregarded by those who reject mask wearing.
Edmond parent Bobby Kern said the number of people who oppose masking policies, which could better protect his son with Down syndrome, has been discouraging. His son, Josiah, 8, is a second grader in the Edmond district.
People with intellectual disabilities, like Down syndrome, are more likely to be hospitalized and die from COVID-19, according to a study of nearly 65 million patients published in the New England Journal of Medicine.
“It’s just a constant frustration because it seems like that lack of care is everywhere,” Kern said. “I mean, we read it on social media pages, and we hear it on the news. We even see it from people that we are close to that are friends of ours that just won’t take this seriously.”
Like many Oklahoma parents, those with children in special education weighed the risks and benefits of returning to school.
But for these families, isolating at home means crucial face-to-face services could be cut off. Many children with disabilities rely on their school to access needed resources, such as occupational, physical and speech therapy.
“The one group that nobody really thinks about involving health issues, especially in the pandemic, is kids with special needs,” said Sarah Soell, executive director of the Down Syndrome Association of Central Oklahoma. “This effect on them is going to be forever.”
Soell’s 15-year-old daughter, Kerstin, has Down syndrome. She started ninth grade this year at Noble High School, where she’s attending only special education classes to limit her exposure.
“When our kids don’t get therapies in person and our kids can’t go to the doctor or they can’t have a procedure done, that’s pretty big,” Soell said. “That’s a huge, significant thing.”
Students with special needs face greater COVID-19 risk
Children with autism, developmental delays and intellectual disabilities face a heightened risk to COVID-19 because many suffer from comorbidities, like respiratory conditions and heart defects, said Dr. Ami Bax, who specializes in behavioral and developmental pediatrics at OU Health.
People who can’t communicate properly might struggle to recognize their symptoms and ask for medical help, Bax said. Adults with disabilities have died because of this, she said.
Despite increased risks, most children with disabilities fare better at school with trained special education teachers, therapists and their classmates, Bax said. Early childhood is a critical time for children with autism to learn social communication and coping skills.
Universal masking is a key way to protect those students in the schoolhouse, she said.
“(Parents) want to send their children to school, but they want to do what’s safest,” Bax said. “If they can know they’re sending them to a school where the teachers and students largely are wearing masks, then that sets up a safer learning environment for their children, who may have more difficulties or be at higher risk for COVID.”
The Centers for Disease Control and Prevention recommend universal masking in K-12 schools. School-age children made up nearly a quarter of new COVID-19 cases across the state last week, according to data from the Oklahoma State Department of Health.
Oklahoma school mask mandate ban on hold
The U.S. Department of Education opened an investigation into state laws in Oklahoma and four other states that block schools from implementing mask mandates.
The federal agency is investigating whether these laws violate the civil rights of students with disabilities, who are at greater risk to COVID-19, by taking away the opportunity of safe in-person learning.
An Oklahoma County district judge ruled this week in favor of mask requirements. However, District Judge Natalie Mai said any mandate must have an option for families to opt out.
Mai’s ruling put a temporary hold on Senate Bill 658, which prohibited public school boards from implementing mask mandates. The court order will take effect Wednesday and remain until another judge makes a final ruling on the law.
A day after the court order, Edmond Superintendent Angela Grunewald announced the district will require masks starting Wednesday, with the option for exemptions.
The requirement became necessary after the district saw “how Covid has raced through different classrooms and grade levels,” Grunewald wrote in a districtwide email. By the 13th day of school, Edmond had more COVID-19 cases than at any point in the previous year.
For the Coles family, the mandate came too late. Their son Max tested positive the same day the district announced its new policy.
“I’m sad, angry, scared, disappointed in humanity, and feel absolutely defeated after all the precautions we have taken apart from sending him to school,” Coles said.
Remote schooling a ‘struggle’ for parents
When special education students have no choice but to learn remotely, parents can help substitute at home, said Amanda Younts, Edmond’s director of special services. Teachers instruct families how to engage their children in ways that can continue learning.
“That really shed some new light for (parents) of, OK, we can work on chores or cooking or just different tasks around the house that do embed some educational component,” Younts said.
Taking on a teaching role can be difficult, especially for working parents of kids with disabilities, said Stacey Weddington, director of community impact for AutismOklahoma.org.
“Parents are already nurse, chauffer, therapist, diner chef,” said Weddington, whose 23-year-old son has autism. “We already have all of those hats, and throwing teacher into the pile comes naturally for some parents, and for others, who are trying to do their own job at the same time, it’s a real struggle.”
Ashley Papirtis, of The Village, never thought she would be a homeschool parent, but she’s been one for more than a year and a half.
She and her husband, Jeff, knew COVID-19 could be devastating for their 7-year-old daughter Abby, so they pulled her and her younger sister, Emilia, out of school in February 2020.
Abby, who has Down syndrome, has been hospitalized multiple times with respiratory illnesses, like influenza and RSV.
Papirtis showed her daughters pictures of Abby’s last hospital visit to explain why they couldn’t have playdates or go to school any longer. The family has remained mostly isolated ever since.
“She, in herself, is an amazing kid,” Papirtis said of Abby. “I can’t imagine not having her. That’s why it so scary because we love her so much. We don’t want to do anything that could risk her or put her in jeopardy, and so we’re willing to make those sacrifices as parents.”
Reporter Nuria Martinez-Keel covers K-12 and higher education throughout the state of Oklahoma. Have a story idea for Nuria? She can be reached at [email protected] or on Twitter at @NuriaMKeel. Support Nuria’s work and that of other Oklahoman journalists by purchasing a digital subscription today at subscribe.oklahoman.com.
Oklahoma children with special needs face life-long COVID impact