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Balancing special needs

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 says.

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 babysitter, 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 holding a press conference during a tennis clinic for children at the U.S. Open in New York last week 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 about 10.2 million children in the United State, have special healthcare 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," says Isabel C. Garcia, executive director Parent to Parent of Miami, a community resource center.



Judith Marte balances a high-pressure job as 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 says.



Over the years, Marte has put in place a support system that includes her husband, who picks up her son from an after-school program, bus transportation to a program, and 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. However, having a child with a disability or chronic illness requires additional time and effort to find and manage treatment, attend doctors appointments or therapies, 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.



Mothers, in particular, say they see their careers affected. Researchers at Washington State University Vancouver found that more than half of the moms they surveyed said they worked fewer hours in order to care for an autistic child. Three out of five had turned down jobs because of their family responsibilities. Even more, 25 percent reported turning down promotions - and taking leaves of absence - in order to care for an autistic child.

In two-parent households, two-thirds of the parents said the mother's work outside the home was most affected by their child's autism.



Even understanding employers may be flexible only up to a certain point.



During her 23 years with the City of Sunrise 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 says 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 additional effort to make up time off.



"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."

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