Luke Kislenko, 7, watches cartoons as his mother, Julia Berzoy, makes him breakfast at their home in St. Petersburg, Fla. Luke has Sanfilippo syndrome, a rare genetic disorder that affects development. Parents of children with disabilities say child care options and programs are limited during the summer. (Dylan Townsend/Tampa Bay Times/TNS)
TAMPA, Fla. — “Mommy! Mommy!” the blond boy whispers, rising from his desk and running toward his mother with big, strong steps.
—Tiger. Whale. … Tiger. RAAAAAAAAAAA! —he shrieked, placing himself between the woman and her laptop propped up on the kitchen table. —I love you! I LOVE YOU!
“Thanks, Lukey,” he says, pulling the boy’s hands away from his face and craning his neck to see the computer screen. “I love you too, but I have to work.”
Advertisement – Continue reading below
For the past few weeks, Julia Berzoy and her husband, Ilya Kislenko, have had to deal with a logistical nightmare: caring for their two elementary-aged children while working full time. It’s a balancing act Tampa Bay parents must perform every summer when schools close for the holidays.
The United States has long faced a child care crisis. Provider shortages and prohibitively high costs mean millions of families struggle to find care each year.
For parents of children with disabilities, the challenge is greater.
Berzoy’s youngest son, Luke, has Sanfilippo syndrome. This rare genetic disorder affects the seven-year-old’s cognitive development and fine motor skills. It closely resembles autism spectrum disorder, but is more severe: the average life expectancy of children with Sanfilippo syndrome is shortened because of the way the syndrome progresses.
Luke is energetic and sweet. He loves to give kisses, but sometimes gets overstimulated and misbehaves. He requires assistance with toilet training and constant supervision. Local summer camps won’t accept him because they don’t have the staff to meet his needs.
Berzoy, who works remotely, is staying home with her children and doing her best to balance work and childcare until schools reopen. That’s just a few days away.
“It’s exhausting,” said Berzoy, whose dark circles under his eyes are no longer visible. “But it’s our only option.”
A crisis of care
The child care crisis in the United States has three main aspects, said Casey Peeks, director of early education policy at the Center for American Progress.
The first is quantity. Half of U.S. residents live in a child care desert where there simply aren’t enough providers.
The second is affordability. The Department of Health and Human Services defines affordable child care as costing no more than 7 percent of a family’s income. Most states don’t meet that benchmark, Peeks said.
The final issue is quality. The median hourly wage for a child care worker is about $12 an hour, with an annual salary of $25,460, according to the Bureau of Labor Statistics. Because wages are so low, recruiting and retaining staff is difficult. This is especially true for workers trained to care for children with disabilities.
Every year, as summer approaches, Jennifer Lumm’s phone starts ringing.
Lumm, who has worked as a special education teacher at St. Joseph Elementary School in Dunedin for nearly three decades, said she receives calls annually from parents who are unsure how to care for their children when school is not in session.
“They need help,” Lumm said. “They don’t know what to do.”
Because Lumm’s students are those with the most severe developmental delays, many qualify for extended school year services — continued care offered by the district after school ends for the summer. But those services are only provided through the end of June, Lumm said, and hours are limited.
“It’s not enough,” she said. “There are some specialized camps and programs, but they are few and far between.”
With few options left, parents are often forced to cut back on work hours to be home with their children. A March 2022 census survey found that 92,000 Florida households reported that an adult had left work to care for their children. Some 82,000 households reported that an adult had quit work.
About 1 in 10 American adults said they had left the workforce because they were caring for children, according to a 2023 LendingTree.com study.
Kathleen Dorgan, whose 7-year-old son Gavin is on the spectrum, said her employment has been affected as she juggles school pick-ups, physical therapy appointments and more throughout the year.
“Most jobs don’t allow it,” said Dorgan, who works part-time at a Publix deli.
But in the summer months, their schedule becomes even more limited. As they cut back on their work hours, lower wages put added pressure on the family budget.
“Luckily, my husband makes enough money so there’s no problem with him working part-time, but what about the parents who are barely making ends meet?” Dorgan asked. “Where are they supposed to go?”
She wishes there were more inclusive care options. It’s painful, Dorgan said, to see other children enjoying dance camp, karate and the YMCA, while her son is abandoned at home.
“Camps won’t accept him, daycares won’t accept him, even some special needs programs won’t accept him because he’s not potty trained,” Dorgan said. “I try to be his biggest advocate, but it’s hard to see these kids excluded over and over again.”
The finish line
The soundtrack of Berzoy’s workday is a disconcerting mix.
From the kitchen corner, where Luke has his booth, two iPads play songs from two different children’s shows. On the desk, a pile of crayons and markers mixes with toy animals: a hippo, a tiger, a giraffe.
While Luke runs from room to room, Berzoy sits at the kitchen table and drinks a cup of tea.
Luke woke up at 2 a.m. today. His high-pitched chattering pierced the noise machine and jolted everyone awake. His 8-year-old son, Teo, and her husband are catching up on sleep upstairs.
Berzoy said one of the hardest things about summer for Luke is the loss of routine. Most children with developmental disabilities like familiarity and structure. It takes them a while to get comfortable in a new environment, such as a classroom. By the time they adjust, the school year is coming to a close and they’re back to square one.
Compared to others, Berzoy said her family is lucky. Both she and her husband are able to work flexible hours from home, sometimes early in the morning and sometimes late at night, while the kids are asleep. They can afford to hire a part-time nanny, a family friend who watches Luke for a few hours every weekday.
But not everything is easy. Her day starts early and ends late. She can’t remember the last time she was alone. She’s tired.
Berzoy said she hopes more funding will become available in the future and that the school district will consider offering year-round care for its most vulnerable students, something some Florida schools are testing.
For now, every night before bed, Berzoy marks her calendar with a red pen, counting down to the day her children return to school.
© 2024 Tampa Bay Times
Distributed by Tribune Content Agency, LLC
Read more stories like this. Sign up for Disability Scoop’s free email newsletter to receive the latest developmental disability news directly to your inbox.
