Saundra Gumerove was a successful New York-based lawyer with a booming career in the banking industry when her daughter was born and everything changed.
But not in the way babies gently rock the world of every new parent.
This was different.
Her birth was more of a life-altering earthquake—one that shook Gumerove’s personal life and sent shockwaves through her career.
Lauren was born with Sturge-Weber Syndrome, a rare neurological disorder with symptoms that include a large purple-red birthmark on the face, in addition to intellectual disability, migraines, and a host of other conditions.
It was the beginning of “a very tough life”—a whirlwind of hospital visits for seizures and surgeries for glaucoma. The new normal meant late nights at home attempting to catch up on work, and precious little rest.
“I didn’t sleep for many years,” Gumerove recalls. “If Lauren turned over, I was up, worried she was seizing.”
Her anxiety, while warranted, only complicated her career: “When Lauren was in crisis, I was not a good person to be around. I was always terrified she was going to die.” She began therapy to process her new life, which seemed to be in shambles.
Fortunately, Gumerove’s boss saw her struggle and created a job for her close to home in Long Island, N.Y. Still, client meetings were sometimes far away, and she occasionally found herself exiting abruptly to rendezvous with Lauren in the emergency room. Many colleagues didn’t understand. They thought she was receiving special treatment—and resented her for it.
For nearly a decade, Gumerove did what felt like the impossible: juggling work and the added demands of special-needs parenting—as a single mom, no less. At times she was ready to quit, but she had no choice but to soldier on: The two needed the income and the health insurance.
She felt trapped.
Eventually, Gumerove reached her breaking point. She left her job as a corporate lawyer and began working for herself, as an attorney for special-needs clients. Eventually, she was appointed as the president of The Arc New York, a nonprofit that advocates for individuals with intellectual and developmental disabilities.
Finally, she had found her bliss—and her purpose. Gumerove was able to work from home, take cases she was passionate about, and make her own schedule—around Lauren’s needs.
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‘Work is a wonderful escape’
For many parents of kids with special needs, success just won’t look the same—not for their children, and not for themselves.
Due to the severity of their child’s disability, some parents are unable to work outside the home. Others, however, manage to—and refuse to abandon personal ambition at the altar of parenthood.
But it’s far from easy.
“The school is calling because of bad behavior. The babysitter doesn’t show. How are you going to work?” Gumerove says, speaking of the plight of special-needs parents who attempt to maintain a professional life.
Some hold down a job in spite of it all but find themselves hampered from moving ahead in their career, their child’s needs a veritable albatross around their neck.
Sally Hiraldo was working as a manager at a rental furniture store in the Bronx when her daughter, Delilah, was born with a cleft palate. The condition required countless doctor’s appointments and seven surgeries.
Thirteen years later, Hiraldo completed her master’s degree—in human resources. She serves as a cleft community advisory council member for Smile Train, the world’s largest cleft-focused nonprofit. And she’s still working at the same furniture store, in the same position. The reason, she tells Fortune: “I feel like I can’t take my [daughter’s] medical problems to another job.”
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Success looks different for each special-needs family, says Lisa Nowinski—clinical director at the Lurie Center for Autism at Massachusetts General Hospital and an instructor at Harvard Medical School.
“For some parents, this might look like finding a new, more flexible job, working part-time, or deciding to stay home,” she says. “In families with more than one parent or caregiver, continually re-evaluating and renegotiating the distribution of work, life, and child care responsibilities is critically important.”
Nearly 20% of U.S. children—approximately 14.1 million—have one or more chronic health conditions, be they physical, developmental, behavioral, or emotional, according to the U.S. Centers for Disease Control and Prevention.
Behind each child is a parent or parents, many of whom are employed—or used to be. A 2021 study published in the journal Pediatrics found that among U.S. special needs families, 15% had at least one adult caregiver who stopped work or cut hours because of their child’s condition.
Unsurprisingly, more than 75% of caregivers are women.
Each American household with a special needs child suffers an annual income loss of around $18,000, the study found. And the aggregate impact is stark. Lost wages from caregiving special-needs parents who’ve forfeited their careers range between $14.4 billion and $19.2 billion a year among those who worked full time, and between $9 billion and $13.9 billion for those who worked part time.
Parents of special-needs children “face tremendous challenges, not only caring and advocating for their child, but also juggling work and life demands, relationships, and their own mental health needs,” Nowinski says.
But for those who can, “work is a wonderful escape,” Gumerove maintains. “It’s a distraction that can take you out of the immediate environment you’re in.”
“Having a life apart from your child is something really difficult for parents to consider,” she says. “But I think you need it to be healthy.”
Some find the flexibility they require in a new career inspired by their child, Nowinski says: “Many parents find new purpose and expertise in the very areas they have worked hard to manage with their own child.”
‘Moonshots for Unicorns’
Geri Landman knows the financial impact of special-needs parenthood all too well. A successful San Francisco Bay Area pediatrician, she cut her work week from five days to two and a half after her daughter, Lucy, was diagnosed with PGAP3—a rare genetic disorder that causes weak muscles, unsteady gait, intellectual disability, and epilepsy.
Her employer has been understanding about the family’s plight. Still, Landman says she’s found that there are “hard and fast rules that even when you pull the ‘special needs mom card,’” you can’t break.
Case in point: On Wednesdays, Landman needs to get Lucy to physical therapy and her other kids to school, meaning that she can’t make it to work until 8:15 a.m. But she’s required to show up at 8 a.m.
“I can’t physically be in two places at once,” she says. “Luckily, it takes a few minutes to room a patient,” she explains, so Landman can arrive a few minutes after 8 a.m. without inconveniencing anyone.
Working part-time has “definitely put a financial stress on our family,” the pediatrician says. There are Lucy’s medical costs to shoulder and California’s sky-high cost of living.
But less time in the clinic gives Landman more time to tend to Moonshots for Unicorns, a nonprofit she and her husband founded after Lucy was diagnosed. The foundation seeks to identify a cure or treatment for Lucy’s disorder and others like it.
And at her “day job,” Lucy’s plight has provided her with ample inspiration. Landman now focuses her efforts on treating children with special needs.
Being the mother of a child with special needs “has certainly changed my career goals and focus,” she admits.
“Is it holding me back from having the career I previously envisioned? Yes. But I now have a career I’m even more passionate about.”
How employers can help
Employers can make a difference in the lives—and careers—of special-needs parents.
First and foremost: “Access to comprehensive and high quality medical insurance and paid parental or family leave are absolutely critical.” In an ideal world, paid family-leave policies would be expanded to include chronic health conditions, Nowinski says.
Other helpful possibilities, according to experts Fortune talked to:
- Flexible working hours
- Option to work remote
- Access to mental health and well-being support
- Employee support groups for parents of special-needs children
- Company events that are inclusive and accessible to all
- A point person, perhaps in HR, who can direct special-needs families to company and community benefits and resources
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