ESPN commentator and former tennis star Mary Joe Fernandez remembers the day she learned her son had asthma. "It was like a wake-up call that threw me into action," Fernandez said.
She realized she would need to become ultra-organized to keep up travel for her broadcasting job, find the best asthma treatments and manage her son's medical needs. "I came up with an action plan that I leave behind with his school, or baby-sitter, or my parents so when I travel they know what to do."
Fernandez just recently started to talk openly about her son's illness, even during a recent tennis clinic for children at the U.S. Open in New York to raise awareness and empower other parents.
Despite their fears about job security, more parents of children with chronic illnesses and disabilities are opening up - even at work. What they have going for them is strength in numbers: One in seven children under age 18, or approximately 10.2 million children in the United States, have special health care needs, according to Department of Health and Human Services.
Most parents say they have no choice but to open up; they need their job to support their families, and more importantly, they need the health insurance. They also need flexibility and resources for what becomes a lifetime commitment.
"If you don't have employer support, it can become overwhelming," said Isabel C. Garcia, executive director of Parent to Parent of Miami, a community resource center.
Judith Marte balances a high-pressure job - she is chief budget officer for Miami-Dade County Public Schools - and her family, which includes a 19-year-old son with a severe form of autism. Raising a child with special needs magnifies your stress level at least three times, she said.
Over the years, Marte has put in place a support system that includes her husband, who picks her son up from an after-school program, and bus transportation to a program. Also key: a boss who understands about emergencies. "Having a supportive workplace is hugely important. I could not work at a place that was not family-oriented," she said.
Most working parents juggle a variety of time demands. But having a child with a disability or chronic illness requires additional time and effort. Their parents must find and manage treatment, attend doctor appointments, handle conflicts at day care or school, and seek the right education choices. It easily can create financial problems, marital discord, sibling issues and problems at work.
Even understanding employers may be flexible only up to a certain point.
During her 23 years with the City of Sunrise, Fla., community development department, Gladys "Kathy" Crisci has juggled work with surgeries and treatments for her son Erik. At age 4, Erik was diagnosed with cancer. He is now 21. Chemotherapy and radiation keeps his cancer at bay but has created a lifetime of serious health complications.
Crisci said that at the time of the diagnosis, her boss gave her time off, and her co-workers donated vacation time. But over the years, more treatments were necessary. Crisci worked for a few different supervisors, some more understanding than others. To keep her job, she put in extra effort to make up for her absences.
"I tried hard to make sure they knew I was going to take care of my workload, that I could handle both, even if I had to work at night or over the weekends. It was incredible pressure, but I did it."
On the other hand, parents of children with special needs may refrain from talking about their children at work - or asking for help.
Steve Rossman, chairman-designate for Easter Seals' international board of directors, is a single father raising his daughter with special needs and a granddaughter. Rossman also is a Miami law partner who tries to create a family-friendly workplace and concedes that some bosses are less than understanding of the lifetime challenges facing these parents.
"The key is to sit down and try to work out a solution that works," he said.
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ABOUT THE WRITER
Cindy Krischer Goodman is CEO of BalanceGal LLC, a provider of news and advice on how to balance work and life. She can be reached at balancegal@gmail.com. Read her columns and blog at http://worklifebalancingact.com/.
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(c) 2010, The Miami Herald. Distributed by Mclatchy-Tribune News Service.