TAMPA, Fla. — “Mommy! Mommy!” the blonde boy coos, rising from his desk and barreling toward his mother with big, thumping steps.

“Tiger. Whale. … Tiger. RAWWWRRRR!” he squeals, wedging himself between the woman and her laptop propped on the kitchen table. “I love you. I LOVE YOU!”

“Thank you, Lukey,” she says, prying the child’s hands from her face and craning her neck to see the computer screen. “I love you, too, but I need to work.”

For the past several weeks, Julia Berzoy and her husband, Ilya Kislenko, have navigated a logistical nightmare, providing child care to their two elementary school-aged children while working full-time jobs. It’s a balancing act that parents around Tampa Bay take on every summer when schools release for break.

The U.S. has long faced a child care crisis. A shortage of providers and prohibitively high costs leave millions of families scrambling to come up with a care plan each year.

For parents of children with disabilities, the challenge is amplified.

Berzoy’s youngest son, Luke, has Sanfilippo Syndrome. The rare genetic disorder affects the 7-year-old’s cognitive development and fine motor skills. It looks a lot like autism spectrum disorder, but more severe — the average lifespan for 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, he gets overstimulated and acts out. He needs help in the bathroom and constant supervision. Local summer camps won’t accept him because they don’t have the staffing to accommodate his needs.

So Berzoy, whose job is remote, stays home with her kids and does her best to balance work and child care until schools reopen. Only a few more days to go.

“It’s exhausting,” said Berzoy, the dark circles under her eyes now a permanent fixture. “But it’s our only option.”

A crisis of care

There are three main folds to the child care crisis in the U.S., said Casey Peeks, director of early education policy for 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% 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 around $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. That’s especially true for workers trained to provide care for children with disabilities.

Each year, as summer approaches, Jennifer Lumm’s phone starts to ring.

Lumm, who has worked as a special education teacher at San Jose Elementary School in Dunedin for nearly three decades, said she gets calls from parents annually, unsure of how to care for their kids when school is out of 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 lets out for summer. But those services only run through the end of June, Lumm said, and the hours are limited.

“It doesn’t cut it,” she said. “There are some specialized camps and programs, but those are few and far between.”

With little choice, parents are often forced to cut back on work to be home with their kids. A March 2022 census survey found that 92,000 households in Florida reported an adult had left a job to provide child care. Some 82,000 households reported an adult relinquished working hours.

Around 1 in 10 American adults said they had left the workforce because they were caring for kids, a 2023 LendingTree.com study found.

Kathleen Dorgan, whose 7-year-old son Gavin is on the spectrum, said her employment has been impacted as she juggles school pickups, physical therapy appointments and more throughout the year.

“Most jobs won’t accommodate it,” said Dorgan, who works part-time at the Publix deli.

But in summer months, her schedule becomes even more limited. As she cuts back on hours, smaller paychecks add strain to the family budget.

“Luckily, my husband makes enough money so me working part-time is OK, but what about parents who are just scraping by?” Dorgan asked. “Where are they supposed to go?”

She wishes for more inclusive care options. It’s painful, Dorgan said, to see other kids enjoying dance camp and karate and the YMCA, while her child is marooned at home.

“Camps won’t take him, day cares won’t take him, even some special needs programs won’t take him because he’s not potty trained,” Dorgan said. “I try to be his biggest advocate, but it’s hard seeing these kids left out over and over again.”

The finish line

The soundtrack of Berzoy’s workday is a disorienting mix.

From the corner of the kitchen, where Luke’s station is set for him, two iPads play songs from two different children’s shows. On the desk, a pile of crayons and markers mix with toy animals: a hippo, a tiger, a giraffe.

While Luke runs between rooms, Berzoy sits at the kitchen table and sips a mug of tea.

Luke woke at 2 a.m. this morning, his high-pitched chatters piercing through the noise machine and jolting everyone awake. Her 8-year-old son, Teo, and husband, are catching up on sleep upstairs.

One of the hardest things about summer for Luke, Berzoy said, is the loss of routine. Most kids with developmental disabilities like familiarity and structure. It takes a while for them to get comfortable in a new environment, like a classroom. By the time they settle in, the school year nears its end, and it’s back to square one.

Compared to some, Berzoy said, her family is lucky. Both she and her husband can work flexible hours from home, sometimes early in the morning — other times late at night, while the kids sleep. They can afford to hire a part-time nanny, a family friend who watches Luke for a few hours each weekday.

But it’s not without difficulty. Her day begins early and ends late. She can’t remember the last time she got alone time. She’s tired.

Berzoy said she hopes that in the future more funding will be made available and that the school district will consider offering year-round care for its most vulnerable students — something a few Florida schools are piloting.

For now, every night before bed, Berzoy marks her calendar in red pen, counting down to the day her kids go back to school.

© 2024 Tampa Bay Times
Distributed by Tribune Content Agency, LLC

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