Living Under Quarantine: Parents Unite In Face Of Challenges
CHICAGO — Barbara Murphy has tried to hide her fears from her quarantined 15-year-old son, keeping him calm and occupied while worrying for days that he was infected by the new coronavirus.
The Chicago teen is one of more than 200 students with disabilities at Vaughn Occupational High School who have been asked to remain in their homes since late March 6, when it was confirmed that a special education classroom aide had the virus. His medical fragilities place him at high risk for developing COVID-19; born with a rare birth defect that didn’t allow his lungs to grow fully, John also has autism and epilepsy.
“He doesn’t understand all this,” Murphy said. “He’s very confused and wondering why he’s not going to school. … He’s a social guy and I think is really missing out on seeing his friends.”
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Authorities have asked anyone who was inside the Vaughn school building between Feb. 25 and March 6 to remain home — unless they need to seek medical care — through March 18. Though not all family members are subject to the quarantine, many parents such as Murphy are staying in as their child deals with the stresses of home confinement and fear of illness.
The shut-in scenario would be difficult for any parent, but Vaughn families have particularly complex challenges. Located in Portage Park, the high school serves students with cognitive, developmental and multiple disabilities. So these parents are not only missing work, they are canceling important doctor appointments and therapies and making do without the extra help some would receive if their home wasn’t on a self-imposed lockdown.
As Vaughn parents try to keep their kids on track at home in terms of stimulation, education and structure, an effort is underway to help the neediest of households, led by local school council chairwoman Cindy Ok with the aid of school district staff, community elected leaders and other volunteers.
From her home, Ok is organizing the collection and delivery of donated food, cleaning supplies and other items to families affected by the nearly two-week quarantine. Her GoFundMe campaign had raised about $15,000 by Friday (check?). But Ok said she is worried that those efforts aren’t enough and that some particularly vulnerable families are going without assistance.
“There are a number of our families that we still haven’t reached,” said Ok, who has two daughters with disabilities, including a 20-year-old with autism who attends Vaughn. “They don’t have internet or their phone numbers are disconnected or they’re not answering.
“This is really tough on our families,” she added. “Many are single mothers who won’t be able to return to their jobs until their children are cleared.”
Seventy-five percent of the Vaughn student population qualifies for a free or reduced-price lunch and more than 30 percent are bilingual, according to district statistics.
So far, none of the students, faculty or other staff members besides the aide has tested positive, according to city public health officials. Murphy’s son also was cleared, though the Centers for Disease Control and Prevention has estimated that symptoms can arise up to 14 days after potential exposure.
The virus has caused heightened and widespread awareness of vigilant hygiene practices, but parents of children with disabilities — especially those with weakened immune systems — say the potential effect of germs on their kids is always on their minds.
“A lot of moms are saying, ‘Of course it had to be our school,'” said Erin Folan, whose daughter Emma, 20, is a student. “We worry about situations like this on a daily basis. It is another bump in the road for us, but thankfully no one is sick yet.”
Parents say they are required to check their child’s temperature twice a day with a thermometer, then record results in an emailed form from the Chicago Department of Public Health.
Besides obvious health and financial concerns, many parents agreed the change in routine for a young adult with disabilities can make an already stressful situation more difficult. They are trying to fill the days with structure and activity through books, puzzles, movies, video and board games, art projects and FaceTime chats with classmates, teachers and relatives.
Folan, who has missed about a week of work so far, said she is lucky to have a lot of support. Still, after home mani-pedi treatments and karaoke performances, she said she was running out of ways to entertain her daughter.
An only child, Emma has mental, behavioral and moderate learning disabilities. She is high functioning, Folan said, and loves sports, drama and horseback riding. But Folan said her loving daughter, with constant seizure activity in her brain, lacks impulse control and can grow upset easily.
Her daughter had long been packed for last weekend’s Special Olympics Illinois State Basketball Championships, which were canceled.
“They don’t have many opportunities for sleepovers and special outings with their friends,” Folan said. “It’s very hard for them to understand. To pull everything away from her really quickly is very difficult.”
Several Vaughn parents said they learned of the coronavirus threat at the school shortly after 6 p.m. March 6 through a robocall and several subsequent emails from the school’s principal, CPS and city public health officials.
But at least one parent, Noemi Gomez, said she waited days to get answers.
Gomez said her 18-year-old daughter, who has developmental delay and severe anxiety, transferred to Vaughn in January. She said her daughter’s name was mistakenly omitted when CPS provided city health officials with a student roster.
“How can they miss my daughter?” Gomez said. “I feel so sick. I feel sad. I almost want to cry.”
Gomez said her daughter has had a cough and a fever, at one point reaching 102.07 degrees. The fever broke with over-the-counter medication. Still, Gomez said no public health or school district official immediately responded to her requests for testing, monitoring and quarantine advice.
The Chicago mother said she has diabetes and developed a cough as well. She has two other sons, ages 21 and 5. Following a doctor’s advice, Gomez said she and her two youngest children are in self-quarantine at home.
City public health officials confirmed they did not initially receive the teen’s name from the district.
CPS officials acknowledged the error. Individual CPS schools and the district’s central office often have different student lists, with the schools having the most up-to-date information on student population.
“This is an important lesson learned, and as we move forward we will take additional steps to cross reference lists of students,” CPS spokeswoman Emily Bolton said. “We also want to stress that it is critically important for all families to update their emergency contact information so we can get in touch in the event of an emergency.”
Gomez said she has since been in touch with health officials, who are assisting her with testing options.
“We pray,” she said. “We pray a lot.”
The advocacy group Raise Your Hand for Illinois Public Education also has brought up communication concerns, accusing both CPS and city health officials of not responding properly to some questions, such as why siblings of Vaughn students who attend other schools aren’t being asked to stay home.
CPS officials said their efforts have included a deep cleaning of the school, paid leave for quarantined staff, free boxes of food and supplies for pickup and delivery, online learning lessons, and a staffed hotline and special email address for families that need assistance. The Greater Chicago Food Depository assisted CPS with providing 500 boxes of food.
On Friday, Gov. J.B. Pritzker announced the closure of all public schools statewide from Tuesday until at least March 30. Before the governor’s order, more than 100 of the state’s roughly 850 school districts had already decided to call off classes for some period of time, affecting nearly 300,000 students, according to the Illinois State Board of Education.
For Vaughn parent Sheila Harris, whose three children include twin 21-year-old sons, one of whom has a rare neurodevelopmental disorder, the loss of income due to missed work has been especially stressful.
“I’m hoping I can go back to work (before two weeks), but I’m playing it by ear,” said Harris, who is unsure if she entered the school during the period of concern but has remained home as a precaution. “It could be worse. We’re fine right now so that’s a blessing.”
The situation at Vaughn has brought an outpouring of community support. Besides the donated money, dozens of community members, businesses and charities such as Lakeview Pantry have donated dry foods, cleaning supplies, toiletries and educational games.
At state Rep. Lindsey LaPointe’s district office, nearly three dozen bags of donations have been collected so far. Volunteers have been dropping off items outside the homes of quarantined families for days.
“People have really stepped up, which is not abnormal on the Far Northwest Side of Chicago,” said LaPointe, a Chicago Democrat. “People really chip in to make their communities better.”
Ok, the LSC chairwoman spearheading many of the efforts, said other local leaders such as Chicago Ald. Nicholas Sposato and members of the Chicago Teachers Union have been collecting and delivering donations. She said a bilingual teacher, Emily Hecht, has personally reached out to nearly 100 Spanish-speaking families to connect them with resources, even digging into her own pocket for emergencies.
For Barbara Murphy and her husband, Kevin, the new health threat brought back flashbacks of an earlier viral outbreak that nearly killed their son. Three years ago, John was hospitalized after contracting the H1N1 virus and the flu. He fought his way back from grave illness, but his lungs were further damaged, requiring him to use supplemental oxygen as he breathes.
Forty-eight hours after he was tested for the new coronavirus, Barbara Murphy said, she received the results that he was negative. Echoing Folan and other parents, she said that if there’s any upside to all this, it’s that the public is now more aware of the medically fragile young adults and elderly people in the community who “need you to wash your hands” to remain healthy.
“We always say John was born with one foot in the doorway to heaven,” his mother said. “Our fear is real for us. His history is real.”
Chicago Tribune reporter Hannah Leone contributed.
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